Woah Is Me

The setting is a little funny right now. I’m outside on the porch swing, it’s only 6:30 but very dark. It’s warm and damp, on the cusp of a light drizzle. It might as well be July. Monty insisted we come out of course, without a care that it’s almost completely dark or mosquitoey or that it’s now in fact raining. The dog is such a happy distraction. My head is pounding. 

I’m tired of even saying that or thinking about it, but it’s hard to escape. A change of setting always helps, at least psychologically. But Monty helps the most. He cracks me up. He’s playing fetch with an old sock right now. Really. The dog will retrieve anything. 

I remember once when he was a puppy, we lived in these stupid college apartments, and we played fetch with a rock in a concrete parking lot. I remember thinking My God, the idea of this is so depressing. And yet there was Monty, flopping and running back and forth, proudly prancing after he’d pick up the golf-ball sized rock and spit it out to bounce back to me. Monty turned 12 last month. 12! He doesn’t look or act that age at all. You should see him fetching this sock. We might as well be back in that barren cement lot.

Time to go in Monty. Time to ice my head and wait for things to calm down up there. It’s like a storm is brewing in my brain, just like the real one setting in outside. It will rain tonight and be freezing tomorrow. All the small talk will change from how miserably hot it is to how insanely cold. 

***

It happened just like they said. Winter showed up overnight. Monty doesn’t seem to mind at all. My head was pounding when I woke up and I didn’t want to move. 

I’m not in great form today. This happens sometimes. I’m already missing the scenery here. What I see out each window. I’m already missing Monty. I know it’s stupid to think that way and I try not to entertain those types of thoughts for long. But it’s hard to pretend otherwise. I’m just afraid of the changes I know are coming. I am very afraid of moving. 

I’ve been in a sort of denial about it, because I haven’t had reason to face it head on yet. And when you’re in physical pain, you don’t really have the capacity to think so far ahead anyway. That can be a good thing. But the times when the reality of it does seep in, I feel so overwhelmed I can hardly move. They say pain stems from spending too much time in the past or too much in the future. It makes perfect sense, but alas, I am imperfect. I already know how certain things will hurt. I’ve been through them before.

We haven’t even sold the house(s) yet, but I know we soon will. For what could’ve been an easily “tragic situation”, this all turned out OK. No, I never planned on living in my parents pool house and wouldn’t have chosen it. And yet it turned out to be ideal, given the reality. Help is 15 steps away, as is my independence and autonomy. Monty and I have really grown up here, a second childhood of sorts. Adjusting to a new normal—a lack of health— has meant learning to be soft where I used to be stubborn. You just don’t have the energy to fight against things, to be so particular. And the relief comes in realizing 95% of the things you fought and fussed over were useless—petty or temporary or out of your control anyway. It’s been a hard but good and practical lesson. It can only go two ways when you lose physical reliability. 

Monty is the master adjuster. All 12 years he’s wagged his tail and followed wherever we were to go. Whatever he does he plunges into with openness and playfulness and I need to lean in to this kind of thinking. But fear takes me over at the idea of upcoming change. It’s not just one thing, like the fear of what will be. What could be. It’s all this I’ll have to leave behind, too.

Even the painful parts. This house is so filled with receipts of life and pain and revelation and hope. It’s strange that even leaving something painful behind is painful itself.  

When I think of the fact that we are moving back into the house I grew up in, in the town I grew up in and hated at the time, I feel sick. But that’s putting it all pretty crudely, isn’t it? As I’ve learned over and over, it’s crucial that we write the story and not allow a fleeting feeling like fear to take over the script. It’s all in how you frame things, I know it. And of course I can do a better job than reduced, negative summaries like that. It’s almost tragically hilarious, which seems to be the theme of my life. I’m 35 and moving North into my parents basement! Who could write this stuff? 

I know, I know. I am lucky for so many reasons. I could always stay behind and see what living alone without any help from my parents would be like—then I’d see! Maybe I wouldn’t complain about moving once I saw how terribly worse this could all be. I’m fortunate to belong to a family who cares. To have family/friends who care one way or another. But I think that’s where the deeper sadness stems from here; The lack of choice that naturally exists from a lack of health. 

You really can’t complain when so many people are helping you. And as backwards as it is, sometimes you resent the help. Resent needing the help. You’re so grateful it makes you cry, and yet you’re tired of saying thank you. This is a feeling, not the truth, and I know the difference. Gratitude has saved me over and over. Maybe I shouldn’t give these feelings a voice. But they’re there, like a lump in my throat, and I thought maybe writing out the fear would help disempower it a bit.

I fantasize all the time about being on the other end of this. Of being the healthy person offering the sick person (or anyone) my home, my energy, my ability, my ear. I’ve played out multiple versions of a possible future. I am wearing coherent, trendy outfits in all of them, and my house is very clean. But who knows what the real one holds. Maybe I end up a success in dirty PJ’S?

I don’t mean to be whiny, I’m not so sure why this premature nostalgia and angst is hitting me hard today. I guess life catches up with all of us now and then. It’s OK to cry about it, although it makes my stupid pounding head worse. I should take it as a sign I’ve cried enough. I called Monty over and he yawned. Real nice Monty! 

Sniff sniff, wipe wipe. 

Tomorrow I see the neurosurgeon. We’re trying to find out if I have CCI, Stenosis, or other structural issues in my cranio-cervical junction. I have no idea what’s wrong, only that I probably shouldn’t be in so much pain all the time or have to take migraine medicine as much as I do and the idea that having an ice pack glued to my head has become normal is just absurd. We have entered the absurd, people! So, maybe we’ll find out something more tomorrow. I have zero expectations, as I tell most doctors I feel like I’m dying and they then tell me that my lab work reveals I’m the specimen of health! Perfect, if only I felt that way.

I don’t want to get my hopes up but then, why not let her fly? If nothing comes from tomorrow I’ll not really have lost anything. Just another box checked. In it’s own way, that’s progress. I think. I don’t know, my head is throbbing and my thinking is starting to fragment again.

Maybe tomorrow will be the start of change that I’ve been fearing but will actually mark the start of something new and great. We’re crazy to ever think we know how it will all unfold. I only know that hot or cold, New Orleans or Colorado, Monty is happy to be alive and play–with a sock or a rock. And that kind of adaptability is something I strive for. Oh Monty, will you ever know how insane and complete my love for you is? I hope.

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Wish me luck.

Health, Happiness, I’m Not Crying You’re Crying

 

We All Fall Down. The Stairs. Sometimes.

This all feels like some cosmic joke as I write this, but the sh*t show must go on. I wrote this piece intending to pay homage to the last month, which has marked an unexpected bump in my functionality. All due to a small but sufficient amount of useable energy I encountered, as if finding money in the street. Look energy! Pick it up! 

For nine months, this invisible life force–something you almost can’t really know you have until you lose it–has eluded me. And then, subtly and seemingly out of nowhere, it flipped on inside me like a light switch.

For the last month I’ve been hard at work on an important story about the opioid crisis; the data driving it, the policy, and the affect it’s having on millions of chronic pain patients. I’ve felt compelled to write it and share a side of the narrative that’s gone missing from the national conversation. The point is, I felt functional enough to devote myself to this article in a serious way. Almost every day for two weeks week, I put on real pants and drove to the downtown coffee shop, the one with terrible art work on the walls and unforgivable price tags, where I’d work for hours at a time. Most of you know 2019 has been a garbage pail of health issues, not really allowing exertion like that on my part.

The joke is, I’m trying to write a piece on how great I’ve felt, in one domain anyway, and I am continuously interrupted by how terrible I feel due to one of the more severe migraine cycles I’ve had all year. Also the ice pack strapped around my head keeps dripping water in my eye. Just great.

Despite the newfound strength I came into, my physical symptoms persisted. Migraines, face pain, POTS, cystitis, the badder disaster–all alive and well. The catch? Having this new, albeit small and yes, limited, amount of energy on board has been a game changer in terms of dealing with all the pieces that go into life with chronic illness and pain.

Finally room opened up in my brain and body for a resilience to deal with the symptoms  proactively, or distract myself from them (insofar as possible), or just enjoy the rare freedom you feel when you finally have a choice in how you’ll spend even 1/3rd of your day.

The relief it’s brought has left me in tears of gratitude. Not a relief of pain, but of burden, of carrying this heavy, physical weight around for so long. And finally taking it off.

It feels almost impossible to convey how much more tolerable the experience became,  finally having some amount of energy inside to help take it all on. It’s still a difficult and daily battle, but when you suddenly don’t feel the active force of gravity working against your every move, well, that helps.

What doesn’t help? Falling down a flight of stairs at your cousin Kenny’s house, the night before his moms funeral. Wait maybe that’s the joke. You know, this story is just so Gelpi.

So, maybe my month of reliable energy has begun to wind down. I’ll go out on a limb and say that becoming entangled with an industrialized fan on the steep fall down the stairs and breaking that fan with my face at the bottom, did not help. I had grill marks on my face people! Like some piece of George Foreman meat! Good Lord.

The point in all this was to pay homage to feeling GOOD, and the things you get to do when you’re not stuck in a dark HOLE. And so it shall remain. I’ll tell the Tumble-Down-Kenny’s-Basement-Stairs story soon, I swear it. I’d never hide such comedy gold.

It doesn’t easily escape my mind how bad one day in August was, just two months ago. I couldn’t lift my arms above my head, the weakness and heaviness and dizziness were relentless. My entire head throbbed with pressure, and I felt a total desperation wrap itself around me, barely able to keep my eyes open laying on the couch. I feared the physical feeling of that day would never end. And then less than two months later, I end up here…

Attending a Saints game with family and friends, yelling in the Dome to throw the Cowboys offsides, and most importantly, enjoying the hell out of myself. How could such a transformation occur in such a short time?

I can’t know. I stopped taking one of my anti-vitals. My mom prayed a novena for me after an especially bad few weeks. I pray my Hail Mary’s every morning, waiting for my head to calm down. All I know is the very terrible day in August did end, and for a while at least, I’ve been gifted with enough energy to participate in my own life. I’ve paid a price for things, but at least I did something to pay for. Most of 2019 has felt like a constant hangover without a sip of alcohol.

I just want to remind anyone who’s sick and in a crash or experiencing a rough patch to hang on. I know how desperate and forgotten and isolated it feels. How insufferably long the time can take to pass. (Trust me, this is the first time in 9 months I’ve had some level of functionality) The truth is we just can’t know the future. But given a chance to play out, turning (inward) as a spectator to our lives when we can’t participate in it firsthand, it will usually reveal some incredible grain of truth that will make life sweeter, easier, and closer to whole. At the very least, it will make us hugely grateful for the tiniest of things–and it’s hard to be unhappy when you harness true gratitude from within.

So what does the letup of a nine-month crash finally allow for? Well, really dumb but fun stuff that makes me happy. Like a few weeks ago when I gave Monty a bath. We came inside and I brushed him while watching college football. I noticed the little pile of hair was becoming pretty dense and also that it seemed it could be arranged, as if I worked at it, I could shape it into a smaller, furry replica of Monty. So that’s what I did…

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“Won’t my mommy be so proud of meeeee!”

And YEAH, I’m proud of my work, mkay? It took some real finessing. As you can see, the first few editions were not quite right.

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A bit too wispy…
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A bit too 1950’s mouse cartoon…

You can call this a waste of time and probably not be wrong. The thing is, when you’re feeling well enough to exert yourself in creative ways beyond just surviving, nothing feels like a waste. Things take on a new lightness and enjoyability. Even bathing the dog. Of course Monty was a wonderful and willing model. Speaking of which…

Monty’s good looks should have been earning us money ages ago. Thanks to the Aunt Becky scandal, I learned that “Instrgram Influencer” is a real thing and decided Monty needed to be one. We haven’t turned it into cash yet, but we do get a discount on merchandise from these brands that saw his picture and posted them on their pages. So yeah, we should be earning hundreds upon hundreds of dollars any day now.

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Who. Dat!
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This is what Monty thinks 23 hours a day.

Anyway, I’ve done more than make small, furry replicas of Monty and model him in bandanas. I finished The Snows of Kilimanjaro, which had me enamored for three days straight and I need more Hemingway to read. I’ve continued to work painfully slow on completing sudoku puzzles, as well do a lot of swimming because it’s October and 93 degrees and that’s just, you know, reality now.

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Panting. In the Pool. In October.

In the end, yes, I fell down Cousin Kenny’s stairs. But you know, the fact that I was well enough to be at Kenny’s in the first place, and subsequently do acrobatics with a fan down his stairs–well, that says something. Something good, believe or not.

Here’s hoping the recovery isn’t so bad. I write this as much as a reminder to myself as to others, of how fleeting all this is. That idea used to frighten me, as though nothing were solid and reliable. But now I find it revealing of a truth that’s freeing, a relief. This was always temporary. Changes can come hard and fast, but looking with creative eyes and a depth of perception, we can often find that they’re in our favor. We have to stay awake though. Give life a chance to show you how things turn out. As the adage goes: In the end, it will all be OK. If it’s not OK then it’s not the end. Cheesy, yes, but I can be on board with the idea. So march on soldiers. As always, we will get there.

I’ll just take the elevator wherever we’re going.

Health, Happiness, and the Bruise on my Thigh Has Given Me Three Butts. Three.

Navigating Healthcare When You’re Chronically Sick *and a Chronic Pain Patient (1)

When I say the seven days of last week were the epitome of an absolute disaster of epic Murphy’s Law proportion, I’m not exaggerating. I am psychologically traumatized by the amount of roadblocks that emerged in just trying to carry out seemingly easy decisions the doctor and I agreed on.

It’s hard to convey how defeated it feels to be so desperately reliant on a health care system that appears to lack any incentive to see that you’re taken care of. Pull yourself up by your own bootstraps is a phrase I’ve heard all my life. There was a time when that was possible and I had no excuse not to be totally self sufficient. But that all changes when you lose the reliability of your body. It’s like trying to beat a video game with a broken controller in your hands. 

I feel trapped. Chained to a medical network where in every domain outside of actual face time with the doctor, I am a policy and not a patient. Whether I have access to what is necessary to maintain any health seems to have become almost anecdotal.

My time and energy are consumed by the position of full-time liaison, constantly navigating the logistics between the doctor, the doctors own front desk staff, the pharmacy, the insurance company, and adjusting to the perpetually changing federal laws that affect the dispensing of my medications. Maybe it’s this easy to fall because there are so many gaps between doctor and patient, and they’re widening all the time.

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See? Here I am enjoying myself at the urologists office.

I can’t remember when this part of life with chronic illness became harder than managing the physical illness itself, but that’s where I am now. I’m also realistic and understand that in the context of a multi-systemic disease like M.E., a lot of my time will go to doctors and exams and bloodwork and prescription refills and pickups and insurance appeals etc. etc. etc. That’s simply part of life when you’re sick and I accept that part. (See photo)

What I struggle with is the fact that maintaining my healthcare has become a battle. Keeping up with the aforementioned aspects of my health between doctor appointments is a fight, as constant and reliable as the disease I wake to everyday. 

This probably all sounds generic and obvious to say; But I’m not actually referring to the conventional financial or accessibility issues of our system. I have health insurance. I’m not talking about having an inadequate plan or the absurd price of prescription drugs or the lack of access to good doctors. On the whole I have great doctors. So why, when it comes to that crucial part of fulfilling the medical plan that a doctor and I have decided is in the best interest of my health, am I met with constant resistance from the moment I step out of the exam room?

That resistance fought me at every turn, every day last week. Beginning Monday, the said battle of having my health needs met ensued due to simple administrative mistakes, systemic gaps, and changing federal laws that made shitteth hitteth the fanneth. I will share how the system tends to fail with the slightest pressure, but first I think it’s important to explain my current state of health and why I require the doctors, treatments, and care that I do.

I am writing about this not to pettily vent or point an ambiguous finger—believe me, I’d rather forget it ever happened. But last week was not a fluke. This happens constantly, and it will happen again. But if a chronically sick person with good health insurance and good doctors has to fight this hard and often lose when it comes to basic needs– like prescription refills and scheduling timely follow-up appointments– something is broken. Maybe by highlighting how laws, policies and medical personnel affect the health of an actual person, it may somehow in the end help fix or improve them. Maybe I’m dreaming.

**State of the Human**

Most are familiar with my physical circumstances. Quick status:  I’ve been fighting a chronic disease that lacks treatment or cure since I relapsed a decade ago. As a result of many things going awry in my body, I am in pain all the time. Without precise disease treatment, the best we can do is manage the many symptoms of M.E. In my case, fighting chronic pain is the hardest part.

In both legs I have something called small fiber neuropathy. This is a deep ache, basically everywhere there is skin, and typically a burning in my feet and calves, especially if I stand for more than 15 minutes. My feet often get physically hot and sometimes swell, as though I were some pregnant broad, but nope! All of this began around age 25, when the restless leg syndrome also worsened at the start of my relapse. It’s like an electrified current running up and down both legs that won’t turn off. 

Untreated, my legs ache and burn constantly, but worst of all, they make sleep impossible. At best it comes in one to two minute fits and bursts before the pain wakes me again. Imagine being pricked five times by a safety pin every 90 seconds throughout the night. You’re getting there…

Beyond my legs is my head. Or my brain I should say, because that’s where the pain feels like it’s emerging from. It’s as though my brain were swollen and pushing against my skull from the inside. It’s a chronic pressure and pain with very frequent migraines. Five years ago the pain moved into my face—not an acute pain, a widespread pressure pain like a tension headache, but beyond my forehead it extends to the top of my head, down to my cheeks, jaw, and even my mouth sometimes. On bad days it’s just my whole head.

Some other treatments have included steroid injections in my head and back of my occipital nerves, as well as lidocaine injections in my face to help control/ disrupt this pain.

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See those little bee stings? Those are injection sites. Is it fun getting shots into my temples and face? No. But neither is 24/7 pain, so a few seconds of needle pain is nothing in comparison.

Perhaps underscoring my head pain are the issues with my neck. I’ve had a “bad neck” the way a seventy-five-year-old has a “bad back” since high school. There’s a good chance some of these neck issues are driving the head and face problem, but we’ve not been able to land on anything definitive. Trust me, we’ve tried, and we will continue to. We’ve spent years and years searching for answers, visiting doctors, & trying a lot of techniques—from chiropractors to physical therapy to acupuncture/cupping to two weeks of ketamine infusions (That’s a story I’ll tell soon because…Damn.) 

Lastly I’m dealing with chronic interstitial cystitis pain that resurfaced in December with an infection. We treated and “cured” that with antibiotics, but the pain and symptoms of IC decided to stay. In July those symptoms worsened drastically and have added to my pain load. I am hoping and praying and trying a lot of remedies (including homeopathy) to get the IC under control, but it’s not been easy. I didn’t know it was possible to pee more than 30 times a day but guess what? I think I hit 40 once.

We recently had my MRI’s looked at by an M.E. literate 3rd party who pointed out abnormalities on my brain stem and cervical spine. One included a minor CSF blockage and bursitis on five disks. These structural issues would likely explain a lot of my pain problems and may even be responsible for other symptoms like those from dysautonomia.

Some of these abnormalities can be fixed with surgery, but I have to see a specialist who would decide ultimately the best course of treatment. If it meant the possibility of an end or improvement of this pain, I’d go under the knife tomorrow. I’m ready for my life to start in so many ways, and I do believe we will find an answer to all of this. In the meantime…

Due to this constant high level of pain, I see a specialist and take prescription pain medicine, as well as undergo nerve blocks, trigger point injections, and live with an ice pack on my head to help find relief. This combination of treatments help keep my high level of pain down to a more manageable one so I can have some quality of life. I have not changed the medicine in eight years or the dose in more than four. Want to see what I look like after a nerve block?

Creepy, I know.

I’ve provided my situation regarding pain because this is where most people have a strong opinion one way or another, and more often it’s that you’re just being weak, don’t really need it, or you’re treated like an addict. Often that attitude comes from front desk staff or a pharm tech filling my Rx! I wish this perception would change and that people understood there are millions like me; prescribed to this medicine for the reason it was created: to alleviate physical pain. We take it as prescribed and there’s no misuse. It’s a matter of livelihood. That’s. All.

Having to rely on medicine to evade my natural state of pain is not something I’m happy about or proud of. I’m also aware it’s not a ‘solution.’ But I do know my life would be unequivocally crappier and less functional if I had to face the world fighting such a high level of pain 24/7.

For that reason, I’m grateful for my doctor and for medicine that provides some relief. Until science catches up with understanding my disease and treating it, this allows me not to be tortured at all times. I don’t think that’s anything we should have to feel shame about.

There, now you’re caught up…on one part of the battle ;) More on last weeks clusterbiff and how to prevent it, coming up.

Health, Happiness, & a 10 on the Pain Scale

 

An Extremely Obvious Revelation

Captains Log: Day Four Million and Six. Still crashed, I guess. At what point do you stop considering yourself crashed and just accept that this new garbage state is just.…your new normal? Everything is acting up, like normal. But it’s been the challenge with my heart, wanting something it cannot have, which I’ve struggled hardest with. I don’t typically spend too much time in the “greener grass over the fence” world,  but something in me is willing hard for a life I don’t have. It’s also being imaginatively precise in the world it wants that cannot exist.

I’m in a rut, if that wasn’t clear. 

I’m reflecting on how it all began. I can at least say what helped inspire it: Ignoring what I knew I needed to do, which is one of those human behaviors I will never understand. My morale was low, which was linked to my motivation. It was still there, but it dissipated a little every day I went  on deflecting from the thing that would do me some good: writing. It was like a shooting star that burst in a short lived flash of light. But it would fade just as quickly if I didn’t act while it was illuminated. Then the sky would go back to black, and having failed to act, the brightness dwindled, as did the likelihood of me writing all the things pleading to be let out. 

That’s why they say strike while the iron’s hot, I suppose. Again and again and again I’d have the spark and ignore it. Or put it off. Or write in my notebook, which is something better than nothing, but I knew it’d little good there. It didn’t risk anything or challenge me in a way that makes me try harder whether the quality is better or not. Saying “tomorrow is just as good as today” became a dangerous motto I obeyed and it’s not even true. I was kidding myself and knew it inside, but I still couldn’t pull it together. 

Instead I worked on three sudoku puzzles from a Southwest magazine I snagged on my flight home from Miami. I made some dumb deal with myself if I could finish all three than I could trust my brain. I finished the Easy, then worked on the Medium for what probably took far too long, but finished, and then spent over a week on the Difficult until I messed up somewhere and it was impossible to fix. So I threw it out finally, assuming OK, now it’s time for writing. But then I studied Sudoku strategies online instead, which I’d never done before. Interesting stuff.

I went to Miami in the first place to see my real life hero, Dr. Nancy Klimas. I honestly feel little a star struck when I see her and I just want to run up and wrap my arms around her bear hug style and lift her off the ground. Do a twirl with her raised in the air! Hah, what a sight. She ordered a lot of blood work and neurotransmitter tests. One interesting thing she suggested was the use of a tens machine as means to stimulate the Vagus Nerve, which has gotten a lot of press in the MECFS world and has helped people with varying symptoms. One of those is headaches, and since I’ve had one of those for the last decade, I’m really hoping it will help provide some relief. 3 times a day for 15 minutes. I’ll report back. 

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Real Life 🦸‍♀️ Super Hero

It’s always hopeful to see a doctor who specializes in your disease, particularly when the other seven that you see have never heard of it. They’re doing your best, for obvious reasons, there limits to their help. Seeing Klimas was cathartic in that regard and other levels as I’m hopeful some of her ideas will help with multiple issues I’m having resolve, or at least improve. Particularly crashing almost every day about an hour after I awake. Also the cystitis and peeing every 10 minutes. And the daily migraines. And five months between periods. So, all of it, basically.

As for the rut, I think an envy began sprouting in me that at first I wasn’t so aware of. It started in a very dormant way, even though I was really enjoying my trip in Miami. I probably had more fun than I’d had in all of 2019 combined, which could fit in a thimble. It began with a very attentive observation of my surroundings, of simple things actually, and seeing up close how people who have their health are able to live and operate, day after day. I don’t know why this time I was so conscious of it and in such awe. On a general level at all times, I am amazed what man in a state of homeostasis can do. Maybe because 2019 had been such a burning trashcan of illness and life that I forgot what real health looked like. I was so amazed on one hand, and on the other, the envy for their ease of capability grew in me like a weed. 

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Singing the Beastie Boys

The logistics of family life, especially with four young children, is extremely difficult and doesn’t look easy. But it does look fun, too. I came from a family of six, so maybe some part of me naturally feels at home with that number. But to watch reliable bodies and all they could do became compelling and incredible. I’d listen to my brother and sister-in-law talk about plans, and I think I literally forgot about the concept of planning as a real thing. It’s not impossible and I still attempt it in my own life, but it is always tentative. Always. I am never, ever, a sure thing.  

Not a second thought about showers, grocery shopping, cooking big meals every night, meeting friends for dinner. How involved their social life was! I mean, they had one. How at ease everyday chores and tasks and errands (Or even just delegating them) were— not that they didn’t require work, but that no one was forced by potential physical repercussions to choose whether they would shower or grocery shop. They were solid people. They accomplished so much each day and were dead tired by the end of it, just when I’d start to feel a little more awake, strangely. They went to sleep with warranted exhaustion, and the sleep actually recharged them.

My sister-in-law was so alive in the mornings, which is incomprehensible to me. Both feeling alive at all, and being functional before 2 pm. When she wore workout clothes, it’s because she actually worked out. Not because she was a poser like me who wore leggings because sometimes just the thought of denim against my skin makes me cringe. 

I had truly forgotten what the privilege of health affords you across a day, a week, in all your many roles and expectations. I was amazed and then maybe progressively envious? Can’t say, but typically I’m overwhelmed watching the pace and the volume and the largeness of healthy peoples lives unfold. But for whatever reason, I finally felt it deeply in my bones, as though it’d been welling up there for years and I’d just never said it out loud despite it being glaringly obvious. To the point of it being useless to even repeat here. But it’s still flapping around in my brain, and I want to release it.  I’m warning you, it’s stupidly obvious: I am so, fucking, tired, of living life with this illness. 

How’s that for a Ted Talk?

It’s still there for some reason. It’s obvious, I get it, everyone in the world gets it– why it continues to circulate in my psyche like some grande revelation is beyond me. Maybe it just begged to be said plainly, without a “But” behind it or any justification for why having it has made me better in other regards! No, plain and simple. Just say it and leave out the decorum.

Pardon the F bomb, that’s just how the thought plays out. I write about hope and working with the hand you’re dealt and discerning ways to find meaning in the parts of life you don’t control. And suddenly it all faded quietly into the background. I felt like a hack. I looked around and could feel viscerally how much I wanted what I could not have. What was not mine to take. 

I can’t stay in that space long, even though I’ve still felt way a while now, though maybe not with such fervor. Zukav says that “The splintered personality must always choose between opposing parts of itself. The backbone of evolution.” I doubt it grows me any to want for what isn’t real. To live in a dimension where bad things happen without timely ways to always understand them. I am constantly walking the line between hope and despair. It is far easier to despair, I admit easily. I have to choose hope, consciously, with the intention that even if I can’t see the meaning in all of this yet, it will be revealed. Or at least if I’ll find salvation and treasure in it, the way I would try to in a life with my health. I can’t accept it’s all for nothing. I won’t.

Still, some days, some periods of time: So. Fucking. Tired. OK, won’t say it anymore. My mom will wag her finger.

Interestingly, I still had a great time in Miami. It wasn’t that I felt better there–I was crashed most the time. It was more of a simple enlightenment that being sick around people you love and like is better than being sick on your own. Obvious, I know. I  stayed in bed, sleeping on and off until around 3:30 pm. That’s when Olive and Miles (7 and 4) typically came home from school, and I’d reach down far for some strength and get up to greet them as they walked up the driveway smiling or skipping or holding art they made as though it were a proud flag.

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And the Tony Goes To….

It was nice being around them. I really do treasure my role as an aunt, even if I can’t do more and play longer without tiring out. I was able to see Olive’s first performance in a play: School Daze. It was about school, and how school is hard. Can’t disagree with that. It felt so fun to go and cheer her on.

I’d meet them at the beach, but it’d be four hours after they’d already been there. But that’s the great part about kids (and dogs.) No questions. No backstory required. They’re just glad you’re there.

A beautiful part of children is how adaptable they are. They don’t seem to mind that I’m supine 80% of the time we’re together. Kids can tire you out, but they can rejuvenate you too, much like the ocean. Luckily there, I had both. And those two made me feel more alive than I’d felt in a while.

I like these pictures because they fit in my fantasy world where things are normal and that’s fun to pretend sometimes.

I guess being around the whole family helped re-tether me to the world. Seemed I had floated away from it, or maybe it was the world that had floated on without me. Either way, once I was home, I didn’t bask in the solitude or the quiet, like usual. Reuniting with Monty always makes me happy, and is the symbol of “home” to me. Otherwise a harsh reality settled around me that suddenly I was sick with no one around during the day. But it didn’t feel like respite.

In Miami I would often just listen to Estee on the phone, or working on some project, prepping food for dinner that night, caring for the twins. As my grandma would say “She’s a busy body.” I got used to the background sounds of people living, and despite not participating in it, it was comfortable to me hearing it go on. Comforting. A reminder that life moves continues on, no matter what you’re wearing or what room you’re in. Of course that same fact when you’re in the same four walls for months can feel worse than unfair. It’s a pitiful thought, but it feels very real that the world doesn’t need you at all. (That is NOT true and I don’t believe that in any form at all. It’s your ego messing with you, and it’s dishonest. All of it)

I guess the drastic change, whether it was the lack of kids to make me laugh or of late-night life talks after the kids went to bed, they all made my life at home feel disconnected. My mom had left for a trip to Colorado the day after I returned and I suppose what I normally call solitude began to feel more like isolation. I had this feeling that I’d probably had enough solitude to last me thru another decade.

I surpassed my wordcount by about 5,000 words. I have too much to say because I put this off too long too long and that’s what happens. I’ll let this fly and hope things lighten up inside me, then I’ll do a little better by saying more with fewer words next time. That’s the ticket. Between now and then, Stella is working on getting her groove back. I’ll get there. I always do. 

Health, Happiness, Grooves

One Arrow Only

Want to hear a funny story?

Well first, some housekeeping. It’s been more than a while, I know. I feel like an idiot bear emerging from hibernation 3 months late and everyone’s like Dude, what have you even been doing? Getting crushed, that’s what.

A health update for 2019: mine is still mostly missing. Hate it when that happens! 2019 has continued to be a slow-rolling, sick train, punctuated by outings to every type of doctor, assuming I don’t call in sick to the appointment. Calling in sick to the doctor; what an absurd reality.

This elongated crash state feels like some kind of warped dream when I reflect on it. I would blame this on the repetitiveness of days that can start to feel indistinguishable from stagnancy. It feels like…

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Day
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After day…
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After Day…
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After Day…
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After Day…
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After Day OK I think you get it…

That last photo was on my way home from a cystoscopy, which they put you under for, thank Gawd. But I was a little…out of it. The procedure is supposed to help the interstitial cystitis, but low and behold, I still find myself having to pee like a racehorse a LOT, soooo, maybe it’s just taking a while to work. Here’s hoping.

As always the creative challenge of life with chronic illness continues. What a strange conundrum, living with a body that doesn’t know how to function as a body. So, what to do?

Reading Murikami’s 19Q4 followed by Killing Commendatore, which I’m sad to have just finished, have kept my imagination wild and busy, and I wish I could thank the guy personally for what joy he’s brought into my life. Reading Murikami’s stories doesn’t just give you ideas to reflect on–it’s a really involved experience just reading one of his books. It’s very involved somehow. As though a real exchange were taking place, but I don’t know how that is possible.

Before walking home from my parents some nights, I think of the characters inside the pages, waiting on me to get into bed and open the book so they can get on finding their way. It’s by far the deepest I’ve fallen into a body of work, fiction anyway, and I have absolutely no idea how he does it. I’m just glad to get lost in something so positive. It’s too easy to fall into counterproductive thoughts or habits when you’re so physically limited. So as always, it takes a good chunk of mental exertion to stay on the right side of the experience and to be cautious in how I tell myself this is all unfolding.

***

For no good reason at all, I get into bed at night and truly believe I’ll be improved tomorrow. I imagine all the things I’ll do. All the catching up and even what clothes I’ll wear while I’m busy bustling around the house. I can see myself cleaning out closets and on the phone, checking things off my list–Monty following me, room to room. I can envision it all, and drifting off, I always expect that tomorrow will be better. And yet for roughly 120 tomorrows, I’ve awoken to mostly a repeat of the day before. Oh real great Universe! 

Now and then I receive some improved feeling that I’m finally rounding the corner of this thing and the worst is over. Perfect! Then either hours later or two days later, I’m paying a high price for what feel like very petty offenses. The invisible line of this thing– it’s the most frustrating part. It makes any kind of management of it feel impossible.

It’s like driving through a backwoods town in the middle of the night without any headlights on. The “warning signals” of this illness are meek and inconsistent. You have to pay such careful attention to what can be a trigger, but even still, it seems sometimes you crash for no reason, or have a full month of migraines for no good reason. It can be hard to see straight at all and you wish you could just turn your danged headlights on!

I  am surprised this crash has endured so long. But maybe it’s silly to be surprised. It’s certainly worthless to take it personally, and yet it’s easy to feel that way. Waking up to the same fight day after day can easily fuel the ego, which will try to convince you of just that. That it’s personal and unfair, and going down that route doesn’t do one bit of good. I have to keep things straightened out in my mind and brush off ideas that are useless and untrue. Maybe the truth is simpler more often than it’s complex. As Tolle says, “It’s neutral. It always is as it as. Nothing more.”

The truth here is, this is the nature of the illness I have. It waxes and wanes, so there’s no reason to be caught off guard or believe I’ll never improve. The fact is this is a disease behaving like a disease. The physical toll and reality are hard enough, no sense getting hit with a second arrow, right? The second arrow is feeling bad about the first arrow. The first arrow is being chronically sick in the first place. One arrow only, please and thanks.

Defaulting back to simple truths is how I’ve been trying to handle all of this, psychologically, but of course it’s not always so easy. Actually it’s never really easy, but it is meaningful when I can find joy and purpose despite it. I’m happy to at least know what ideas and thoughts aren’t helpful to the situation and to vanquish them before they have a chance to take hold and grow. I’m happy to have the counsel and ear of my mom, who hears me out and comforts me when the struggle feels too big, without me barely having to say a word. Talk about gifts you cannot buy.

Despite knowing certain truths consciously, I find myself always questioning myself. I lay in bed thinking This is obnoxious. There must be something I can do. But some days really are just bed-to-bathroom days, and I have to be honest about what I’m capable of. My life feels split in two sometimes, because so much of my communication with people is through text. So I’ll be lying in bed feeling deadly, but texting smiling emoji’s with plenty of exclamation points to show my love and enthusiasm for other people, and I think how strange it is, the dichotomy of the life I project sometimes and the one I’m actually living. I imagine maybe everybody struggles with that, in their own way. We all contain multitudes.

The timing of all this is crappy, of course. There’s never a good time for a crash, I suppose, like there’s never a good time to break up. But there are worse times for each. Being this crashed in the middle of trying to pack and prepare for a move is like the timing of getting dumped on your birthday. Oh well. Even after birthday breakups, people recover. I think.

***

The story!

Last week I was tired of waking up and feeling like I was on my deathbed, naturally. So, I figured there had to be some good meditations on waking up and getting your body psyched for the day. Right now, waking up feels like I went to sleep by getting hit in the head hard with a frying pan, like the characters in cartoons. I’ve also been very weak in the mornings and getting out of bed has been really challenging.

So, I find a mediation easily on youtube, geared toward waking up and energizing the body. It’s 15 minutes. Great. I press play. 25 minutes later, I wake up to a commercial playing and realize the meditation meant to wake me up peacefully sent me back to sleep. Swing and a miss! So, I try another.

This one is also 15 minutes and looks promising. Energizing! it claims. So, I make it through the first 13 minutes. I’m having a hard time focusing because I’m really weak, I’m fighting the bone-crushing fatigue and my migraine is back. But on with the show. The woman guiding the meditation says to repeat the phrases she’s about to say out loud. OK… “Repeat after me” says the slow, assertive voice emitting from my phone. “I feel strong and powerful.” I can’t help but let a smile melt across my face. I say it anyway. “I feel strong and powerful!” “I feel energized and ready to take on the day.” My smile grows bigger. “I feel energized and ready to take on the day.” Now I can’t help but actually laugh. “My body is healthy and my state of mind is focused.” Ummmm…

At this point I am half repeating and half laughing, because I don’t feel these things the woman is saying, like at all. But the fact that it’s making me laugh feels like a success all on its own. A few minutes later, I fall back asleep. BUT, it’ a very peaceful sleep. So maybe it wasn’t a total loss. I imagine once asleep I was “energized and ready to take on the dream.” ;)

Maybe when I’m a little stronger it will work. I don’t think it will be long now, yet I still have no idea why I think that. Owell, it feels good to believe it anyway.

Health, Happiness, and I FEEL STRONG AND POWERFUL

 

Confronting Change You Can’t Control (Part 1)

It could always be Great. 

My mom told me to write that on every wall and mirror around the house. I was on the phone with her, basically in a downward spiral of apprehension about a major change happening this year that is mostly out of my hands. Allow me to rip off the band-aid: My parents made the decision to move to Colorado this year, back to my hometown. Pause for dramatic effect.  

Many reasons played into that decision, a big one being that a majority of my moms family lives there and we will have a tighter community of support. Given that 2/3rds of our fam is sick and one family member is a dog, the move makes sense. It can be a tad isolating out here on the ol ‘farm’.

My moms casual reminder that it could always be great was a nice departure from the supposedly optimistic adage “Hey, It could always be worse!” I’m not sure that phrase has ever really made me feel better while in the midst of a struggle. It’s like “Well hey, both of your legs could be blown off!” “Riight. That’s true. I could have zero legs right now. Cool, thanks. I feel better.”

So yes, I have both legs, but I am still pretty afraid of the whole thing and I guess that makes sense given the scale of this. It’s a big change, and since I don’t have the health to live on my own yet, it’s one that’s out of my hands, which always adds a pinch of frenzy. I’ve sort of tortured myself thinking of ways to stay here, but I just don’t have the physical stability to do it. This last crash that’s held me down since Christmas just reinforces how mercurial my *health* is and how unreliable  I am as a result. A few weeks ago the crash finally let up for roughly a week, then returned angrier than before, and I’ve been essentially a half-living disaster since then. Yeaaaah wooooo! 

You can see how thoughts like that (I’m sick, my life is chaos, I don’t have jurisdiction over my own life) can play with your mind the way a cat bobbles a feathery toy around. It can take your whole outlook and shape it in many variations. 

One of the hardest parts the last few months has been maintaining an open mind that this might actually be a good thing. It’s meant a lot of reigning in of my thoughts, which tend to go default mode into armageddon type thinking. It’s as though some small part of me decided early on that since I didn’t choose this, it wasn’t a good idea and it would end in disaster for my life. And it’s pretty crazy how easy and quickly those thoughts can assemble, pile on one another, and leave me completely convinced that I’m going to melt away and die in my parents basement…or some other absurdity. I don’t know where that fear stems from—I mean I’m pretty sure they have internet in Colorado. 

I’ve had to work to clean up the useless, unhelpful thoughts that tend to mess with my mind and sense of wellbeing. By that I don’t mean I dismiss all the thoughts or feelings I have about this—which are of course, a lot. Certainly there is a legitimate sadness and type of grief that comes from leaving what’s been home the last 18 years. Those feelings deserve their own validation and processing because, damn, it’s sad to leave the people and place you’ve come to know and love so much. Louisiana has felt familiar and comfortable for a long time, and it will be tough to leave, even if I do plan to come back. ;)  

What I am referring to are the haunting thoughts, the ones that make you feel bad about things that are not within your control.

This kind of thinking totally blurs and limits my perspective about the life I have. It dismisses all the good and incredible parts of it, doesn’t see possibility or feel hopefulness or gratitude. It downsizes the significance and value of people and things just because they aren’t in line with what I had planned. (I think humanity might have an addiction to plans but that’s another day) These are just hypothetical scenarios based mostly on fear and a future no one can actually know. Like Tolle says, it is always more empowering to face facts. Even when the facts are scary or we wish they were different, it’s in acknowledging the real and being present in the now that we have access to our innermost power and strength. 

I realized early on how incredibly contrasting the outcomes are that emerge just from framing things in my head one way vs. another. This is something I do have control over, and it’s become pretty important that I put this ability to use, otherwise the ugly thoughts take over and down the rabbit hole I go. 

It’s been a good but difficult exercise to step back and try to just watch the way my mind can interpret the same reality in two completely different lights. The modern mystics would advise to consider the circumstance from the point of view of an objective observer. Watch your thoughts, but don’t become entangled in them. Allow them to appear, then let them go. Easier said than done, of course. But at any rate, the mind astounds me in its duality. For instance..

Here is one side of my mind thinking about the move: Reiterate the story that my life is out of control, that the disease makes all the choices, that I have no say so about things and thus can’t really be happy because it’s not up to me. My personal growth and goals and contentment will all be stunted or I’ll cease to pursue them because my lack of health and other people have the wheel and I’m just a passenger to my own life. What’s the point in trying? As a passenger I don’t decide where I go and thus my happiness isn’t my option but one left up to others or whatever new circumstances materialize without my consent. I don’t want to go. It’s not fair I have to leave what feels like home. What about my family and friends here? What about my dream to live in uptown New Orleans one day? Now it will never happen. I guess I’ll go eat worms. 

I can’t tell you how easy it was for each of those negative thoughts to formulate, one after the other, building on each other like a lego tower turning into a whole city…

Now here is my mind consciously thinking about the move: Colorado? That’s cool, I guess I’ll get packing. 

Could the differences be that dramatic? And is it actually possible to participate in your own life that way?  In The Untethered Soul, Singer makes the point over and over that of course it’s possible! We don’t always decide what happens, but we always the ultimate say so in how we react toward the circumstances of our life. And it’s those decisions, not what happens, that leave us either content, at ease, joyful, whole, or bitter, angry, jealous and depressed.

All it took was a few negative thoughts to quickly unravel into my making the choice to play no part in my own autonomy or the trajectory of my life. Just because I’d be living somewhere else, I removed myself from having any accountability in manifesting a life I wanted or that I could be proud of. That’s a crazy conclusion to make! But when you’re present and you actually break down your thoughts, you see what a huge majority of them are insane and simply need to be let go of. That’s not so easy when you’re hit with an onslaught of frenzy and angst, like a whirlpool that takes you down, where there’s no clarity.

So I have to practice at disarming the egoic force from taking over in my head, which I do by sword fighting the air with a Star Wars lightsaber. Just kidding. Like Tolle teaches, whenever I have a future based thought made mostly of fear, I replace it in my mind with facts that are actually true. I try to repeat positive reminders instead of playing a record of apprehension on repeat with a sad ending.

In other words, I do the thing basically all chronically sick people must learn to do at some point: surrender.

As always by ‘surrender’ I don’t mean give up–ever. I mean to leave a neutral space open in your heart and your head where good things can happen because you allow a new path to be paved even though you didn’t design it. If I had understood earlier on in my relapse that reality doesn’t really care about your plans, I might’ve saved myself a good deal of pain from what was already such a hardship. I thought I could fight things that were already in place and moving quickly forward. Life was just waiting on me to catch up to what was real, instead of trying so hard to hang on to the way things were.

All I know is that there is a pulse to life, a certain beat that resonates deep within us as individuals and as a collective. We can typically feel through that pulse a general sense of what direction life is moving in. We can resist. Be the fish swimming upstream. Or we can lean in and greet life with an open and adventurous spirit, despite limits and changes and things beyond our control. It’s true I am afraid and I’m sad to leave what I thought would always be home. But I have been shown over and over the miracle of surrender, of allowing life to ‘move me’ and the amazing outcomes that can result when we feel fear but move forward anyway. It always comes down to following that thumping compass we hear deep within and far beneath us.

Here’s hoping that it just might be great.

Health, Happiness, Hello Colorado

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Lost: Life Force. Answers to ‘Mary’

*I Wrote this last week. I’m feeling better now ;)

Universe, God, sky, grey clouds, screeching frogs outside– helllp meee. Someone drained my life force in the night, and now I lack the will power to even use an exclamation mark. Not sure what happened. But I couldn’t go on letting myself be buried by the wet blankets of my mind. I had to do something. Something positive, and fight back against the road to stagnancy. I felt like I was slowly turning to cement! Hey look there, I used an exclamation point. 

Of course the weather is that in between weather that makes entire cities look like they could use therapy. Not sunny, on the cusp of rain but not raining, just a wet, grey, dish rag that drips sometimes and peeks the sun out in others and never definitively decides what it wants to do. So, can’t rely on the weather to help put humptey dumptey back together again. Find something else. 

I would bathe but I don’t have the energy. My arms are getting weaker. I need to lay down again. I’ll try to think of good things. 

***

OK, I’m back. It’s been almost two hours. I didn’t sleep. My willpower seemed to be dropping like a heartbeat beeping slower and slower on the heart rate monitor. Beep. Beep. Beeeeeeeeeep. She’s a gonner. It’s like all the feel-good, or feel-right chemicals in my brain have truly drained. The stuff that makes you want to go and do and play were drying up. Or already dried. 

While I’m a little weak, a little dizzy, the residual migraine still thudding behind my eyes, it’s not my body making today so hard. Well maybe that’s the setup for this mindset, but it’s calming my frenzied mind when I have no physical ability to match it that feels impossible to do. Keeping your mental sanity while waiting on your body to come back to you is probably the hardest part of all of this—a challenge that needs constant knowledgable reminding about from people who know better. I’m amazed how easy it is to forget simple truths. Clearly I’m still learning. I guess that should probably always be the case, if only I were a bit quicker at picking these things up. 

I feel the need to do so many things, but most of them aren’t doable right now. Then I feel doubly bad about not being able to do what needs getting done. I guess that’s why I’m sitting at this chair and typing, because writing is one thing I can do. 

I have learned that you can fight back against days like this. Despite nothing sounding good—for example, no type of music sounds decent to listen to, and the idea of watching TV or a movie feels even more depressing. (During the day) Even reading the book I’m thoroughly enjoying (19Q4) doesn’t feel right. I read fiction at night. None of these give the impression they would fit. If I were healthy I would go for a run, or to the coffee shop, change up the scenery and get those endorphins going. But since that’s a no-go, it’s another creative challenge to figure out that comes with the territory.

Sometimes just admitting that you’re having a crappy or hard time helps create the tiniest gap between you and the experience you’re having. This is what Tolle teaches—finding space between you and the circumstance so that you might see it from the outside objectively and not get lost in it and take all of it personally. (The Why Me Route) 

You can write it, say it, draw it, sing it, whatever it is. But transferring some of the weight onto some other medium helps prevents you from becoming tangled up and trapped in it—where every thought flowers at once and the idea of living the rest of your life frantically swirls around your head like a hurricane and feels impossible. The enormity of it all piles up because you think I can barely get through today…how will I ever get through the next three months? You start thinking 5 years into the future, your will power plummets, until something—in my instance, Monty scratching at the door— snaps you out of this useless futuristic angst and brings you back to right now. 

All I have to do is survive right now. Which sounds easy but when your willpower is at a zero, it’s actually a praiseworthy task to achieve. I survived another day!  I can’t survive anything 3 months from now, I’m right to think it will be impossible, because I can’t have a clue what will be in 3 months from now. It’s easy to think everything will be the same, and it might. Or it’s easy to see a dozen problems that all feel unsolvable. But all I have to do is look at the history of my life for proof that it can change in a snap, and 90% of the time, you don’t control the change, or predict it. You only go about figuring out how you’ll respond and adapt to it when you get there.

So how do I make now better? Unfortunately having a rebuttal for your mad mind doesn’t make it simply stop in it’s tracks and suddenly you’re grounded and fine. I’m not that good yet. Just knowing what’s helpful and what isn’t doesn’t immediately make you feel happy and give you your life juice back. But it might help slow that thought whirlpool down. It might allow for the smallest stillness to get through to you and allow the truth to calm your fast beating heart. Mostly it involves just having to live through the tension of the feelings and the knowing simultaneously that they won’t last. They may not even be true. As hard as it is to work against something inside you that feels like it’s actively dragging you down or drying you out, I know that trying anything is typically better than rotting on the floor like roadkill and trying nothing at all. 

On my two hour break, I listened to a podcast called Revisionist History by Malcolm Gladwell. I highly suggest listening to it, but it surprised me how just hearing someone else’s voice and someone else’s story can help pull you out of the thought whirlpool of your own. It’s nice getting out of your own head and being exposed to what people before you have met and endured in their life. I listened to Sammy Davis Jr.’s story A Hug Heard Round the World and hearing of his life and challenges put things in perspective, at least temporarily. This is the importance and power of story telling, I think. It straightened me out for a while.

I also downloaded some foreign language apps on my phone a few days ago so I can start to remember and re-learn french. I’ve forgotten so much of it and I miss it. I plan to visit France for a while when I’m better, so I’d like to get back to moderately fluent. I can’t wait to sit on the sidewalk again, drink my cafe au lait at at a table with a white tablecloth, and write in a fresh notebook Well, I’ve finally made it back to Paris. 

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I didn’t want the invisible vacuum of thoughts inside me to win, so I had to fight back and share these crappy thoughts with you, sorry guys. I guess writing these thoughts out was my way to create the gap. The ability to step back and watch today unfold was my way forward. Otherwise I was slowly being swallowed and nobody wants that. This was my version of winning! Hey look at that, I used another exclamation point. That’s my comeback for today, using an authentic exclamation point. A sign of life. Beeeeep. Beep. Beep. She’s back people!

I think for now that has to be enough. 

Health, Happiness, Surviving

Day 5

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*my general editors note here would be that maybe writing through one of my more serious crashes in the last few years wasn’t the best idea because I imagine it can become a little daunting on the reader to read over and over again. Of course, that is the reality of living chronically ill, and it’s surviving the resilient day after day after month after month that is the most difficult part. But also this wan’t exactly intended for people to read and enjoy, although that would be a SUPERB secondary outcome. It was to clean house.

BUT,  if I’m going to document such tough times, I have to be very cognizant about not letting the work feel tortured, even if I do. Torture in general is not the most entertaining subject matter, I think we can all agree. The point is not to let the sickness win and be the teller of the story. It should be the lens but not the primary subject matter. The challenge is to express and respect the experience authentically, be honest when it feels like torture, but allow enough distance and space from the part of me that wants to try to make this personal (the ego) so that humor and optimism and hope can carry at least half the narrative, the ‘happenings’–or ‘non-happenings’ as it were.

I thought I remembered by day 5 things were beginning to improve, and I read here that my weakness had finally started to just barely let up, and yet it was still an incredibly difficult day, mentally. I was still in really rough physical shape and I remember well just staring out of those windows and feeling an absolute absence of willpower–to do anything. I felt an emptiness inside and a certainty that anything I chose to do made no difference whatsoever. Talk about fun times! But I do remember seeing the bright red of that type-writer, this project I told myself I’d start and finish, and in my 1% battery charge of life force, I made my way and just started to type. It felt like a long exhale.

I actually remember the moment I began to feel better, in the midst of writing this piece. When I wrote “It seemed like a better idea to write at the type writer than to continue staring out the window, wishing things were different,” I realized how huge my role was in keeping my brain and mind active in positive ways when my body wasn’t strong enough. It makes a difference where you look, what you’re looking at, and how long you let your thoughts take the wheel away from you. In that paragraph I knew writing was a big way  of living through something unpleasant and of changing how I felt about it, just by making a lot of small decisions that were opposite of what I felt like doing.

That role is so crucial, and like baby-sitting a two-year-old, you have to sometimes run around after your meandering mind, make it sit in time out, and remind it of true and happy and important things. Facts, not stories. That’s where you find gratitude and humility and grace and remember love and kindness and hopefulness. (All below the surface) You have to reach down far, and the willfulness to reach is for some reason so incredibly difficult it feels next to impossible. And yet when you do reach and feel something reach back, your entire outlook, even for an hour, can change massively. I think done enough times, we can remove a lot of the unnecessary pain we feel no matter what we’re going through..

For me, it’s sitting in time out and not letting toxic thoughts convince me of anything that isn’t true. Its not that I can’t acknowledge how extremely hard this situation is or allow the deep emotional parts of it to rise and let them out. In fact I have to do that. All parts of the spectrum need an outlet.  It’s not about making those thoughts forbidden. It’s about acknowledging them but also then to keep going. Not to stay glued to some idea about fairness or unfairness that eventually keeps you from trying, keeps you from remembering who you are–buried underneath all the hardship that can feel piled on top of you. Writing is magic for me in the miraculous way it reminds me of the truth when I can’t think of or remember it on my own. It will literally turn bitterness into gratitude in just a few sentences, and that’s why it’s important.

Well, I’ve veered off track again. I just felt like taking some notes that maybe I’ll refer back to in the future.

Dammit, I just remembered the Super Bowl is tomorrow and how as a Saints fan I’m boycotting it, but as a curious person I’d like to watch some of it and also observe what 15 million dollar commercials the ad people came up with. I imagine my mom will be dressed all in black and if we had an American flag on our porch, you can bet it would be hanging at half mast. Hah. Football.

Ok Mary well it’s been real. Yeah Mary I agree. Have a happy Saturday. Yeah cool you too. See you tomorrow. Same bat time, same blog place.

 

Day 3

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OK, there’s a lot of crap in this piece that needs to be re-written or scrapped. Taking on a writing project in the midst of a heavy crash may have been a bad idea in terms of writings to share because than crap like this emerges and I told myself I’d stick to the rules. Even reading it now I can see how convoluted my mind way, how easy it was to stray off topic. I’ve begun to improve since Sunday, particularly cognitively, and the writing really does emulate what’s going on during fog. I had to cross some out because it just meandered and was so clunky and unclean, it was very far from conveying my ideas properly at all. Anyway, as uncomfortable as I feel posting writing I don’t like and probably 2/3 of which I would change, or burn, this was partially the point of the project. So just trust and let go. Besides, there’s like 11 people reading this. I think we’ll all be OK.

Anyway, hopefully I’ve written a little better for day 4, or perhaps I’ll have more crap to share! Either way, it might be enjoyable. Just let go Mary. OK, I’m going. So go then. I’m gone. So go! I’m going! Just. Press. Publish. You Nitwit. Alright, see you tomorrow.

Meaning in the Mud

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it is some South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

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#Useless Slugs Unite

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

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She-devils Unite!

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter. 

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

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Actually Destined for Greatness

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

Health, Happiness, Muddy Waters

2017 and Falling Off the Edge of the Earth

*I’m making a concerted effort to keep these blogs shorter and “more digestible.” This is not that blog. Last year was a book all on its own and  I feel the need to fill some gaps where I was unable to write during certain parts, so I’ll do it now so I can move on to the present. Apologies it’s not shorter and sweeter. Next time.

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The beginning of 2017 had begun so auspiciously. My health was in the “good enough” category. Not great, but not terrible. I don’t even know if the word ‘good’ fits with any precision here, but looking back at the beginning of the year, it was so much better than how the year was to end.

The hopefulness, the call to act, the feeling that I could help change things related to a health crisis all felt visceral and achievable. Whenever I felt down about something, disappointed, or discouraged, I constantly asked the same question: Why not me? I’d waited on others for so long, expecting there to be a happy ending soon enough. But you grow older and you see that things don’t happen unless people believe in the possibility of things changing, and if those same people don’t believe they can contribute to this change, in whatever way small or large, things remain the same. When we stop waiting on others, and decide no matter where we are in life, there is always something we can do, we will add light to a place of darkness. We can try. And I can tell you from personal experience, many failures, some successes, that trying, regardless of outcome, feels a whole hell of a lot better than waiting. 

I think it’s why we may sometimes take the longer route home, even though we know there’s an objectively quicker way to get there—but that shorter way involves stop and go traffic the whole time. Most of us would prefer to just drive, on a road that feels open, than sit in a tense car and yell OH COME ON and beep our horns (as if this does anything in congested traffic).

I hadn’t expected the outcome that came out of writing the petition. Yes once again, I”m talking about the petition. But this stuff matters— to me, and to millions, and I need to quit pretending this is a blog that will always (or ever) be extremely exciting or cover my super fun travels to Brazil! I am after-all, documenting life and a chronic disease and a hopefully changing political landscape that I am attempting to contribute to. I try to keep things light-hearted and fun when I can, and highlight the sometimes tragic hilarity that comes from this weird, unconventional life I live. That’s the creative challenge. But the aim of truth telling is tied for 1st in what’s primary, because there has been so much, well, non-truth telling. (I’m looking at you, psychiatric club of England!) I also try not to make it so much about me, but that’s a joke, because this is me, writing about me, and also M.E. (Myalgic Encephalomyelitis— you get it.)

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In early January I met with the LA State Director who works directly under Senator Bill Cassidy. I sat with him for two and a half hours, giving him the whole spiel. At the end, I showed him the petition, which had amassed roughly 35,000 signatures at the time, and it seemed to surprise him. That led to him arranging an extremely brief “meeting” with Bill Cassidy, (literally a 3 minute talk in the parking lot between meetings, where I said as much as I could, and handed him a printout of twenty pages of comments where sick people had told their stories in condensed bursts trying out for help. Some of them were heartbreakingly short and to the point. “I have lost everything. I am bed bound. I’m not living anymore.’ As he was being ushered into his car to his next meeting and his team shouting that he was late and to please hurry, he shook my hand and looked me in the eye saying “I really would like to know more about this.” But politically things were a mess at that time. Is that a redundant thing to say? No longer even necessary? I was told he would be in our state (Louisiana) for roughly 30% of the year or less because his help with the Healthcare Bill in DC was very much needed. So I met with the State Director, but it just inherently felt like such a good thing. Any politician empathizing with you, listening to you and looking you in in eye feels successful all on its own. I realized we were all looking for that. We just want to be seen and heard, and I want to continue that mission.

Attending the “Storm on DC” in May where a large group of us-advocates, advocacy group leaders, those sick with MECFS and those who loved them— met with representatives of more that 150 congressional offices, which felt like movement in the right direction. Besides that, the catharsis I found in meeting other people who were living my kind of life was invaluable. It was the human reminder that I’m always trying to tell myself, that I’m always replying to others when they reach out. We really aren’t alone, even if we’re by ourselves. There are many of us, and yet isolation dominates. This sentiment is perhaps the hardest to remember, the most difficult to convince your heart is true.

A good family friend arranged for me to meet the Majority Leader, Steve Scalise, where we all sat down, and I attempted a summarized spiel of MECFS and the train wreck it is. More importantly I introduced this disease to a man who’d never heard of it, which is typically how these things go. Then I told my story in fast forward, as something he could connect to. Maybe something he might remember. The three of us did a little trouble shooting of ideas. We didn’t have two and a half hours, bur he too wanted more time to learn about and think on this. I left him with short and digestible literature. When we left he shook my hand and I looked him in the eye, hoping he would remember me. That somehow in the future, he’d have some faint memory of a girl he talked to—explaining a crisis underneath everyones nose that needed immediate addressing. A continuation of being seen, being heard, asking people pointedly,”Can’t we do better?” 

We tried. I tried. And regardless of what obvious or immediate changes were made (not many, but a few important ones), this all felt very good. To try. You know when you’re doing your best and when you’re slacking. Nobody really has to tell you.

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Unfortunately after my bump of health in the spring, I seemed to start on a downward spiral to crap town. I fell in love, which was energizing, but the burst of it didn’t last very long. In late summer we tried ketamine infusions to try and get a hold on my chronic pain—in my legs and my head/face. It was basically insane. And sort of a Catch 22, because I think if I didn’t have ME, I would’ve been able to handle the 3 infusions per week for two weeks. But the physical demand of doing anything 3 times a week at that point was extremely difficult. Strangely, it improved the pain in my legs, but made my head worse. I’d get a horrible migraine after each treatment and woke up the next day like it was back for vengeance. I’d have a day to recover before we’d go in for another treatment and do it all again. For someone with this illness, this kind of protocol just isn’t all that possible or as it easy it might be for others. At any rate, we went through with it, because if I was going to endure the physical hardship and psychological insanity, I wanted to really go for it. I wanted to know explicitly if this would work or not, and not do some half-ass attempt. Apparently the first 6 treatments and the time in which they’re given is crucial to their effectiveness. I would try anything that might help the pain, get me off meds.

It was an intense two weeks, and I’ll go into much further detail on another post because there is a LOT about that course of treatment, physically and spiritually, and not a lot of personal experiences written about it out there.  I believe it could have worked for the nerve pain in my legs if my mysterious stupid head didn’t explode at anything new we tried. I crashed from the exertion, the migraines became a given, and it just became clear it wasn’t working. Wasn’t going to be possible or given a real chance to work. So we paid a hefty financial and physical price, but at least we tried, and we always will attempt things that promise at least a good possibility of lessening my pain and eliminate the need for prescription drugs that are harder to fill than buying a machine gun.

This was toward the beginning of August, where afterward my functionality was already in decline but it continued and seemed to increase its rate of downward spin. Particularly in October, where I seemed to fall off the earth.

The pain doctor changed one of my long acting pain meds to see if we might get a better hold on the leg and face pain. I had an extreme reaction to it. On day 3 the “skin crawling” I had felt at first turned up to a 10. I’d wake up at 3 am to my legs and arms squirming, kicking, flexing— feeling like a kinked hose with full blast water trying to flow through it, impossible to keep still. My muscles would be flexed without my telling them to. My fists would be clenched and my toes curled under my feet, then pointed, back and forth on repeat. Moving felt “good” in a weird way, only because remaining still felt impossible. But I was so exhausted anyway, all this muscular strain helped nothing and only worsened.

On day 4 came an episode that we can’t really explain. I was at the vet with Monty when I was already feeling rough but pretty suddenly felt I like would faint and as though my insides were melting. Luckily it’s across the street from our house, so I cut appointment short, trying in spurts and sputters to explain what dysautonomia was to the vet techs as I sat on a bench before the 60 second ride home. Have you ever heard of POTS? “Like frying pans?” I came straight home, laid down on the couch, drank peppermint water for the intense nausea and iced my aching head. Suddenly I needed to vomit. I wrapped myself around my moms toilet where the bathroom spun but I could only spit. I prayed to puke because the nausea was so immediate, making my face hot and the saliva in my mouth swirl, collect at my lips and pour out like a faucet, but nothing.

I laid on the floor of her bathroom, stuttering and having major issues speaking. My muscles kept clenching, all of them, would become rigid, and my teeth chattered. If I diverted my attention away from breathing it became hard to breath normally. It felt similar to the symptoms of SVT but I was not in active SVT, or I’d taken an atenolol just in case I was, and it would’ve worked by the time I lying on the tile. Something else was happening. I had to focus on just taking normal, deep breaths, trying to stay calm. I was twitching and my muscles were doing whatever they wanted. When I finally stood, unstable on my feet, my parents each held an arm and tried to guide me to the bed—but every time I moved I felt insane vertigo and urgent nausea. Even looking too quickly with my eyes to the left or right caused a flash of the same symptoms unless I lay still on the cold tile floor. I laid around the toilet again and tried to be as still as possible, ignoring whatever my body was doing on its own. My parents brought in a pillow and blanket and Monty laid next to the bathtub.

My body took turns twitching and shaking and going rigid, and I stuttered horribly when my mom asked me questions. The lights were too bright, so I laid there just as the last of the sun was setting. I knew she was conflicted—do we take her to the ER? But we’ve both had enough experience there—no one has heard of my disease. They would look at my prescription list and long, convoluted history and none of it would add up to anything, understandably. (We hardly mention ME/CFS in med school text books, and the printed “treatments” are so outdated, some still state “hysteria” as a cause. If anything, going to a bright, loud, crowded ER would make it worse. She used to be a nurse and was monitoring my vitals the whole time anyway. I told her “Please, no hospital.” But I think she knew I was in better hands at home anyway. I felt awful. Not just physically, but that it had come to this. That my mom had to see me like that. That the place you’re supposed to go for medical help is not a place we can go. All of it felt so backwards, so wrong. And it was just beginning,

It took four hours for the episode to finally dissipate and for me to turn back into normal Mary. Clearly I couldn’t stay on that med, which was incredibly disheartening, because it was the first one that provided relief for both the nerve pain in my legs that I’ve had for eight years, and the mysterious head/face pain that we’ve been trying to figure out for the last 5. No luck. But that med, that pile of gold in a bottle that finally eased the pain for both, was also a med violently rejected by my body, so I was forced to quit it. I cried and cried. I felt angry at my own body. Why wouldn’t it accept something that was finally helping it? It’s hard to hold out hope during times like that.

I was horribly crashed the day after the episode, but we had to go back to the doctor the next day and get my medicine sorted out. Another hour car ride, (thank you Mom and Marc) and we weren’t really told why I would have that kind of reaction—which seemed to fit the bill for serotonin syndrome, something I have had at least one episode of before. But they shrugged it off and agreed it was best to just return to my old regimen. The “good enough” regimen. There was only one huge problem that remained:

The side effects of that new drug I tried didn’t go away when we stopped it. It was as thought a switch was flipped. It began in October. I am still dealing with extreme restless legs and arms and toes and hands (which for eight years prior were 90% under control with lyrica), and my skin crawls as if I’m being tickled from the inside if I don’t take a different med to calm my whole nervous system down. The symptoms are insane without this new med.. SO, just to fill yall in, that was the last quarter of 2017, and I can say objectively, IT ROCKED.

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I am telling this story because it’s just one example of how messed up this situation is, in so many capacities. I have had to see four doctors in order to get the medicine needed to calm down the symptoms caused by a medicine I tried for a short while in October. The DEA is coming down explicitly hard not just on patients but on doctors too and if they’re prescribing any kind of controlled substance. Their licenses are threatened, and they aren’t allowed to treat their patient the way they might normally choose— because an entity that knows nothing about medicine is interfering with their medicinal plan. But more importantly, I’ll never forget what my primary care physician said to me in a recent visit while we continued to try and sort all of this out, as I squirmed like a a worm on the examination table, about to run out of the medicine that was helping keep things ‘calm’ but I was forced at the time to try and ween off of. He’s a very good doctor and extremely educated in Dysautonomia, which is a huge part of MECFS. He said “It’s better for one or two doctors to be prescribing all your meds, not six or seven.” I agree with him. And how nice that would be, if only it were possible.

This is what MECFS patients mean when they say there’s no place to turn, no safety net. A person with cancer goes to the oncologist. A person with diabetes goes to the endocrinologist. Someone with heart disease, the cardiologist. Where does the person with MECFS go? The literal handful of specialists, if they can afford it? And where it’s difficult to fill any prescriptions because the specialist is out of state? Local doctors have often heard of Chronic Fatigue Syndrome, which they often conflate with Fibromylagia—an illness one of my male doctors actually used AIR QUOTES when he said it aloud, as well as “Intersticial Cysitus”. I wanted to laugh high pitched and say with my own air quotes “Yeah, you’re a “really good doctor.” It’s such a joke. We are so misinformed. So uneducated when it comes to such a debilitating disease that is not new and is not rare. I’ll leave the numbers out of it, I’ve said them so many times before I believe they’ve begun to lose any real meaning at all.

By Christmas, as you may guess, I was not doing well at all. It was my favorite time of year and it all felt so tainted— the normal seasonal colors were drab and as I looked out the window of my moms car as she drove me home from yet another doctor appointment, I couldn’t help but cry. It was drizzling and ugly out, and nothing felt balanced or fixable. Just let it out Mary, it’s OK to be upset, my mom comforted me. But I was upset at even being upset. I wanted to be cheerful and play Christmas songs, but everything felt covered in the haze of this disease, the amount of time it took not just from me but from my parents who have lives of their own, and my lack of ability to advocate or do anything I wanted—it was all waring on me. On us. Everything felt like it was falling away.

I was extremely depressed and hadn’t seen friends or felt like I’d done something truly social or fun or meaningful for too long. Everything revolved around finding waking up to and finding physical relief, and then being fought back on every effort we made. I can’t count the hours we’ve spent at Walgreens, arguing that insurance should cover a medicine, or being told that they didn’t have this or that medicine in stock, so we could wait three days or drive an hour to another Walgreens that does. Once we were told they had 19 pills, of my prescribed 120. “I can give you the 19 now, but you’ll have to go back your doctor (an hour away) and get a new prescription written in order for me to fill the rest when we have it back in stock.” Someone. Please. Explain. Everything was a battle. I grew so tired of fighting, for everything. The disease is hard enough, but the logistics of the disease is often just as hard or harder. It is truly, I say this with total conviction, a full-time job. That phrase It shouldn’t be like this would play itself in my head a lot and it was hard to disagree. But what can you do? Keep going. Always keep going.

We had a good Christmas, and thus far I’ve been able to get the treatments I need in order to remain mostly comfortable. Thank you, Dr. Patel, and thank you Dr. Klimas. You truly are heroes to someone like me. I wish the government would leave you alone—-unless it meant funding for research, then come on in yall!

It’s a new year, and for now, I have what I need. (Thank you MOM, and Marc.) How I wouldv’t survived the last part of 2017 without you, I honestly don’t know. I feel decently functional right now and for that I am incredibly grateful. I just felt I needed to write out a bit of what happened last year, because behind it all, I hated that I wasn’t able to devote more of my time to advocating. I was in bed or my house somewhere, thinking of grand ideas that I was too weak to carry out. But enough of that, it’s in the past. I believe this year will be different as I’ve said before and we’ve already hit some major goals, which I will spill soon. So be on the lookout yall and hang on. I know how discouraging it gets, how isolating. I know how hard it is to hear “You’re not alone” when you’re by yourself. But it is the truth. We are getting there, we’re not alone, and we still need outsiders help.

Mom, Marc, Monty, Family: thank you.

Health, Happiness, & Good Things To Come

Miami, Migraines, Diners, Doctors

I am sitting at a booth in one of those themed diners in a shopping center, adjacent to the clinic where I saw the specialist on Monday and had what looked like hundreds of vials of blood taken today for more testing. I figure I should eat even though I’ve no appetite. I never trust a menu this long, so I play it safe and order the soup and salad, which is neither good or bad. I guess that’s what you’re really asking for, a meal to quickly forget.

mp,550x550,gloss,ffffff,t-3.3u2.jpgThe music is too loud in here and I find myself strangely annoyed with the gimmicky decor. License plate style plaques fill every inch of wall space boasting phrases like “Stressed is Dessert spelled backwards!” and “Soup of the Day: Whiskey.” I stop. I just close my eyes a minute. Adjust. The problem is not the restaurant. It’s me and this body I have to animate—it doesn’t fit in the world in comfortable or easy ways. It’s like dropping a wild tiger in suburbia, except maybe the opposite. It’s like trying to build suburbia in the middle of a jungle, then complaining the tigers are noisy and sometimes scare the kids. No one else seems bothered by the music.

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“Hey, you don’t belong here.”
“I might say the same thing about you.”

I don’t want to be this young and think like a curmudgeon. Better to let go. It’s because it’s 11:30 and I’m on day 9 of a migraine cycle and I’m wearing real pants. I had to get blood drawn and I don’t normally exist before noon. Mornings are just constantly, reliably painful and tough.

Everyone has days where life feels so tired, so repetitive, that you want to hit snooze and wake up under some alternate sky where there is no weight to carry. No gravity, no effort required to move. Where everyone looks each other in the eyes. We listen. We don’t say the words “Sorry” followed by the word “but…” or “if”. Our hearts resonate with each other, and our heavy bodies have shed like snake skin, like the useless, heavy weight they’d become. There is a lightness in every capacity.

Tolle says this alternate side of the sky I am referring to is possible here on this side. And I believe he is right. But it takes so much practice and learning and presence. Presence. How easy it is to walk into a cheap diner and complain about decor. ap,550x550,12x16,1,transparent,t.u2.pngThat kind of observation lacks creativity. Not to mention, it’s very counterproductive to complain about these things when you’re already feeling down. So I’ll tell you what I like about this costumed diner. All four booths in my vicinity are filled with at least parties of two people eating, and all of them are talking to one another. None of them have their phones out. A phenomenon! Particularly this couple across from me.

They are in their 60’s, and somehow it seems obvious they’ve known each other a long time. I could be wrong of course. They could be divorcees who met on ourtime.com and newly in love. But it’s not the sense I get. In my mind they’re in their Act III of their marriage with grandchildren they have pictures of on their phones to their friends at Bridge. I like that they haven’t run out of things to say or lost some kind of delight in the simple pleasure of each others laugh. They seem to laugh a lot, casually, throughout their light hearted conversation and this feels so good to watch. I always used to fear I’d marry a man and eventually he’d lose interest in me and I’d find his stories boring and then we’d be at a restaurant eating one day with nothing to say to one another. As though there was nothing new to discover about the other, or that we’d lose curiosity in the way each of us experienced the world.

But I know that only happens when we’ve decided we know a person completely and with total certainty. And if we’ve decided that, the issue is not the other person.”The human mind mistakes its opinions and viewpoints for truth…but it is no more than a viewpoint, one of many possible perspectives. Reality is a unified whole. Thinking fragments it into pieces.” Tolle says a lot about the “thinking” mind, and that it’s very useful in our world. But it’s also “very limiting when it takes over your life completely. It’s only a small aspect of the consciousness you are.”

Sometimes I seek the daily, thoughtless things about a person with such aggressive interest I think I might be dumb. Their calendars, notebooks, what they keep in their cars. One of my favorite hobbies is to take apart a guys wallet, piece by piece. All the useless receipts he saves. The frequent customer cards. An old crumbly picture, maybe. Movie stubs. Concert stubs. Their license—are they smiling in the picture or does it look like a mug shot? What made the cut for making it into the billfold and what didn’t. All tiny stamps of a person and his non-sequitor, paper trail of places he’s been. You can have the same fun or more going through a woman’s’ purse. Many clues in there. But these are little traces so few people see. Instead we go to dinner and say “Uh huh and what do you do? Oh interesting, tell me more about your boss. What a jerk!” I think first dates should be silent a exchange of wallet for wallet, or purse for purse, or wallet for purse, whatever. You get the picture.

My last boyfriends wallet, unless I’m remembering incorrectly, was a basic brown leather wallet that seemed to old for him and contained some concert stubs, because he was a music guy and not a whole lot else because he had a straightforward way of being in the world. A wallet was a thing to hold money and his license. But maybe more memorable was the night we went to dinner and left Monty and his dog Gracie home. When we returned, his wallet that he’d left on the coffee table had been chewed. His license, a credit card, social security card, and a one dollar bill perfectly torn in half littered the living room floor. We both loyally defended our own, claiming that “100%, my dog would never do that.” I thought it was kind of funny—a mystery we’d never know the answer to. Maybe it was Monty (it wasn’t), telling me Run! This thing isn’t gonna work! Mayday! Owell. Fun while it lasted. I still have the half chewed dollar.

I could say that the two buzzing gnats flying around my side salad are concerning, but you can basically always reduce these impulses to complain or feel disturbed by something or “talk to the manager” to nothing, because when you start to break them down, they just don’t mean all that much. We forget that so much of our devoted focus, particularly when it’s negative, is essentially meaningless. I am one person, and I chose to eat at a diner where children under the age of 12 eat for free between noon and 3. There may as well be a sign that says FREE BUGS. This isn’t the RITZ. The meal costs $10 and the waitress is nice.  If you’re always making noise about your tiny discontent, you just become a human gnat. We should ask ourselves what our questions or actions or statements are intended to do for five minutes before we go running to every manager. It’s so often just a thoughtless impulse. Gnats! We could just as easily forget about it and move on with the day.

I take an Uber home, and I find myself alone in the back of Ubers quite often. ‘Often’ is a relative term. I’m appreciating that the driver isn’t trying to engage in conversation. “It’s hot out!” “Yes, it is hot out! Also, I have a doggy!” I’ll tip him more for that.

Miami is a picturesque place, and I like the sidewalk traffic. Watching the world through 179389-3908867d8a204eebbcef4215613a5da0.jpeg  the window feels so much better than TV–and no commercials. Bonus! I see a couple kiss while they wait at the crosswalk. Then they smile and she says something that makes them laugh. I love seeing people kiss. Creepy? Maybe. I just like that kissing exists in general. There’s traffic, which is another easy thing to complain about. Tolle says complaining is one of the ego’s favorite hobbies. (Also being right.) But I’m in a quiet car. All I have to do is sit here, one of a few things where I’m actually quite skilled. Many beautiful things pass us by at a stop and go pace. I try to imprint the sights on my brain to take home with me.

I try presence. Just being aware of all my senses. I am grateful to be out in the world at all, when so often I am indoors. I try to remember how lucky I am that I was able to come here. What a gift it is to see a doctor who understands, who listens and looks you in the eye, who can help me find answers. (Thank you Dr. Klimas!) That I have my brother and his beautiful family to stay with and help care for me. That it’s time together we wouldn’t have had were I well. Yes, I have a body that feels like a decomposing pumpkin at times. And I actually feel I may look like a decomposing pumpkin at times. (See video below) But so many moments to be grateful for. So many gifts. Count them. Keep counting. They add up faster the more awake you are.

Keep fighting. Last year was hard. I believe somewhere in my depths, this one will be better, no matter the directional trend my health takes. I know we’re getting close. I tip the Uber driver and leave feedback. “Thank you for the quiet.”

Health, Happiness, Counting

All awesome artwork by Eugenia Loli

*Bonus*: I’m on Day 9 of my migraine cycle! Here is a clip of yesterday morning. It was kind funny in that tragically comical way.

Teacher Tolle Tuesday

johnholcomb-1I’ve been meaning to create a segment for a very long time where I take passages from Eckhart Tolle’s books and put them here for the world, all thirteen readers of you, to see. ;)

There are certain passages from all of his books that I have underlined, highlighted, circled, starred, tabbed…you get it. And they all come from separate times I’ve read the book. The passage I’m about to transcribe here comes from a book of his called Oneness With All Life. I fear even writing that because it’s an easy way to turn someone off to it–there’s so much “new agey” crap about solving the mystery of life and “finding happiness” that the more details I give I’m afraid the more you’ll be resistant to reading it. I can understand that, there’s a lot of people claiming to have LISTS and PROGRAMS and FIVE EASY STEPS promising you happiness that it’s almost depressing. Happiness is not some trophy you come upon and clench when you’ve truly done it. Don’t we know that by now? How can we not be blindingly aware that no, money doesn’t buy you happiness. Duh. Look at your rich friends or family…do they seem insanely happy? No. Of course they don’t. They’re just often unhappy living with SUPER awesome amenities. But they do get to fly first class and I always tell myself if I’m ever rich, THAT’S where my extravagant purchases will go to…traveling first class. I’ll remember with a shudder the horrors of the main cabin. See? Already spoiled. Complaining about the incredible GIFT OF FLIGHT.

I remember in an airport once, I saw a book called the Happiness Project….which was all about following these set of rules, because as many do, this woman had found herself married, two kids, a job and loving husband, and yet not really happy. So she began the voyage. And developed some program to follow to be happy. And guess what? She seemed to find happiness! And maybe she really did. But reading it I couldn’t help but think that it just felt a little obvious and maybe a little gimmicky. I believed she was truly trying to find happiness, I just couldn’t buy that these were the ways to “get there.”  There aren’t rules to being happy, people love knowing what to do, it helps them feel in control, and that alone assists with “happiness”. Which is why when things come up unexpected, we just lose our minds because WE DIDN’T PLAN FOR THIS DEBORAH! There’s a lot of people who will promise you can be happy, and live an entirely great life, if you just tweak a few things. And sometimes they’re right. But that self-help section is bursting at the seams with many more who don’t seem to know, and we’re gobbling it up for a reason: because we all want to know. TELL ME!!! I’ll do anything to escape my misery!!! Wait what? No I won’t do that.

The truth is, according to the modern mystics,  in order to achieve our own inner level of peace, we have to look deeply at ourselves, not others. We have to change ourselves, we have to see ourselves, become conscious of our life and our way of seeing things, our patterns we’ve been taught–to react and stress and yell, when really none of that is necessary. If it rains when it’s supposed to be sunny, it’s going to happen whether you lose your mind and freak out or say, oh well, what should we do now? And if there’s one thing I’ve witnessed time and again, it’s that when someone is freaking out because things didn’t go “right”, and other people are not freaking out and casually just moving along because um, hi, we don’t control the sun, THAT. PISSES. THEM. OFF. Interesting, isn’t it. That’s the ego, clinging for life, and now not just angry that its raining but that OTHER people aren’t angry it’s raining. It’s ridiculous. But it’s the way it bees, and it doesn’t have to bees that way. I just know that we should be incredibly leery of promises that your life and your happiness can be changed and attained all in five easy steps! I’m no Einstein, (REALLY!) but I know when it comes to happiness, more importantly, when it comes to true inner peace and joy, there are no shortcuts. Life is really hard, and you can’t evade the pain. But you don’t have to create extra pain for yourself. The “extra arrow” as my friend Daniel always talked about. The story we tell ourselves about the facts. You’re going to experience pain, but you’ve got to do your work to figure it out, find the hidden seed of grace, and find how to grow bigger from it bot let it swallow it you whole.  But a lot of our pain is self-created, and I do it to myself all the time. Convince myself of some madness or offense, only to find out later I was TOTALLY wrong and an idiot for believing what I did. That’s how we can help ourselves. Ignore ourselves. Haha. Ignore our thoughts, pay attention to our inner self–two very different things.  There’s no “List of “10 things to follow and you’re all set!” So burn that book, if it exists, and I”m sure it does.

Tolle and a few other mystics are very upfront about truth and about how to go absorbing what they’re putting out there. But they are of such a different breed–they’re not writing about how to “get happy.” Which is what people want. 5 steps to get happy! They’re writing about how to be conscious. How to save yourself from causing undue harm or pain to yourself or others. And when you’re conscious in the world, you’re honest, with yourself and others–you’re honest when you’ve messed up, when you’re lucky, in pain, grateful, loved, sorry, and when you love. When you’re conscious and honest, you can’t lie to yourself about what the true source of pain is. You may not be able to know what it is, but you can definitely know what is isn’t.

SO, every morning, I read from Tolle’s repertoire of wisdom—books I have read over and over and over and I will continue to do so. Because all of them elicit further consciousness every time you read them. I feel similarly about Michael Singer, Marianne Williamson, and especially Gary Zukav’s Seat of the Soul. I’m sure there are more I’m forgetting. But I have long days. I don’t leave the house a lot. I have to learn how to harness the normally spent mental and psychological energy that would go outward into the world, into tasks and work and conventional effort, at home, in silence a lot, in solitude a lot, with no plans, no control. The biggy. This is not easy and can be a great source of pain, more than the illness itself. So, on Tuesdays, we’re gonna take Tolle’s words that really stick, with a cup of tea. And I’ll just write them here. Maybe they’ll stick with you too. But please don’t give up on this post because I’m rambling. I’m gonna stop. Here’s Teacher Tuesday’s Lesson One, and it’s one of the more profound and lasting passages I’ve read. SO here it goes. Also I just jumped right in to the center of his stuff so we’ll have some preliminary terms to go over. We’ll do that next Tuesday. I’m still learning. See you then.

People believe themselves to be dependent on what happens for their happiness, that is to say, dependent on form. They don’t realize that what happens is the most unstable thing in the universe. It changes constantly. They look upon the present moment as either marred by something that has happened and shouldn’t or as deficient because of something that has not happened but should. And so they miss the deeper perfection that is inherent in life itself, a perfection that is always already here, that lies beyond what is happening or not happening, beyond form. 

Accept the present moment and find the perfection that is deeper than any form and untouched by time. 

The most important, the primordial relationship in your life is your relationship with the Now, or rather with whatever form the Now takes–what is or what happens. If your relationship with the Now is dysfunctional, that dysfunction will be reflected in every relationship and every situation you encounter. The ego could be defined simply this way: a dysfunctional relationship with the present moment. It is at this moment that you can decide what kind of relationship you want to have with the present moment. Friend or enemy?

The present moment is inseparable from life, so you are really deciding what kind of relationship you want to have with life. Once you have decided you want the present moment to be your friend, it is up to you to make the first move: Become friendly toward it, welcome it no matter in what disguise it comes and soon you will see results. Life becomes friendly toward you; people become helpful, circumstances cooperative. One decision changes your entire reality. But that one decision you have to make again and again and again–until it becomes natural to live in such a way. 

Health, Happiness, Tolle Teachin

**Awesome artwork by Sarah Elise Abramson

Me Write Now

So, it’s been… an interesting month. The viewing event of Unrest in California was really incredible. I have so much to write about all of it, but given that my brain has a time limit of functionality lately, I’ll just say quickly the most important part now: watch this movie. It’s a really, really well done documentary and surprised me in ways my mashed-potato brain can’t convey at the moment. But when my mind is more functional I’ll get further into it. But watch it–iTunes, Amazon, Google play. Find it, rent it, learn a lot– but also see some incredible stories. I strongly recommend it. It will not disappoint.

Here’s the trailer.

I think my brain is still in recovery mode. After the flight home, it wasn’t just a body crash but a brain crash.  For whatever reason, air travel has become increasingly overwhelming for me–mostly due to the noise. There is such a wide range of stimuli you’re constantly exposed to when you fly. Visibly, audibly, socially, physically. But for me it’s sound. I seem to have lost the “buffer” we were born with that smooths things out for us to hear, and the typical noises–converging gate announcements, people on their cell phones, the sound of the plane engine, the automatic flushing toilets, the sound of the captains “status update”–they all feel like an assault to my head. I know it these seems like small and petty things to bring up. And when I was well I never would’ve noticed or been bothered by things like that. But now they are actually painful. By the time I make it home…I’m wiped. I haven’t mentally really felt the same since we returned. I’ve been in an either hyper-sensitive mode of everything at once, or a hazy, sap-paced state where trying to complete a thought is as arduous as an old man trying to get out of a hammock.

The fact that I’m dealing with some major emotional whacks (a breakup, for one) has only made things go more haywire. In fact I think it was a lot of emotion mixed with regular cognitive overload that sort of took things over the edge. That and the insanely loud cacophony of those damn automatic toilets. It feels like my brain is going to shatter and shoot out of my ears when they flush. If I end up in hell, those flushing toilets will be the soundtrack. Just so we’re all clear.

When I think about my cranium I picture that delicate glass slipper being forced on the ugly step-sisters far-too-large foot. There just isn’t enough room in there for everything to find it’s place and get processed normally or in order.  It will suddenly enter an erratic state and my thoughts start flying from every direction dealing with any and every topic, related or not, and instigating every kind of emotion in a matter of seconds. It’s like a hail storm of mental calamities flying at high speeds up there, and I’m just trying not to be get hit. Orrr, it moves so slowly and stuttered I can hardly say my full name out loud without pausing to remember like, my middle name. Soo, cognitively…still in recovery. Please stand by.

Trying to avoid your own fast-paced thoughts and emotions, or extremely slow ones, isn’t really possible. Like Tolle says, you don’t evade them, you learn to watch them, and remember you’re the one observing them, but you aren’t the thoughts themselves. He’s right, but dang, it ain’t easy. Peasy. In fact it’s crazy hard. But, we try.

Yesterday, I realized I had spent 2 hours writing and rewriting the same paragraph. One! Who knows what that paragraph was even about, I had to quit when I realized I took a break and was looking for my phone charger in the refrigerator. I truly could not think straight–and that led to a whole cascade of things happening and a really fun couple of hours on the floor of my moms bedroom where she brought me back to reality. Thanks mom. I don’t know what that paragraph was about,  probably about feeling lost on top of feeling like butt. BUT, no matter the finished outcome, I can say with a good amount of certainty that it wasn’t good enough to warrant two hours of work. I was just stuck. It would be funny if after two hours the end product was like:

Me Mary. Me sick. Times hard. Heartache hurts. Time heals wounds. Time moves forward only. Time is taking a very long time. Hurry up time! God! My mom is hero. Head and face feel like human punching bag getting lots of use. Monty is therapy walking on four legs. Friends matter. Life tough but onward we march. Keep going. It gets better. Keep going. Keep going. Wait stop! OK keep going.

That’s basically it in a nutshell. Anybody want the 5,000 word version? Yeah, didn’t think so. Maybe I’ll talk in cave-woman all the time. It’s pretty efficient I must admit. I think I just have to rest my brain for now, but I didn’t want to feel totally defeated. Writing has always been an outlet, and I’m not letting the disease that shall not be named take it away. So I figured I’d write this post, not read back over it, and just let the world know: Yes, you are kicking my ass right now. But I’m still here. Still going. Bring it.

Health, Happiness, Me Try Hard

*Small note to the world, I was kidding when I said “bring it.” Please don’t bring anything else, we’re all full over here. OK? I was joking and I just wanted to make that clear to the universe. That was a joke. No more shit, K? For real. Cool. Peace.

 

 

Great Expectations…OK Zero Expectations

Something funny happens when you become chronically ill. Ready? You become totally shitty at fulfilling the roles that probably came easy and natural to you before The Grand Interruption. Parent, kid, sibling, husband, wife, friend–all of those roles are going to suffer, because you’re simply unable to do the things you could before. Your capabilities become limited, your time becomes precious and cornered, and your ability to meet your and other peoples expectations will fall short, again and again. I admit it fully, I’m in general an unreliable source of help, or maybe just unreliable period. And if you don’t think that stabs me straight in the ego, then try saying out loud “I’m a human wasteland” and see how it feels. Because that’s about how it feels.

But we have to be fair, to ourselves and others. We can’t hold ourselves to the same standards as before, especially when we don’t have the same working parts. And we have to remember that the adjustments we make are not adaptations that we alone have to get used to. All those people for whom we provided some kind of role, they’re going to be affected too. They’re going to get exhausted, be disappointed, feel the pain of you not being who you used to be, just as you, the sick person will. I don’t know what it’s like to be a friend or a family member of Mary Gelpi, but I know that I begin 90% of my texts, emails, and conversations with an apology–because I couldn’t make it, I’m responding so late, I won’t be able to attend (insert anything important) I’m sure they become as tired of hearing it as I become of saying it. It’s exhaustive, saying sorry all the time. It’s probably tiresome to be on the other end of it too. But you are sorry, you don’t want to be this crappy of a friend or sister or girlfriend–and while being sick is nobody’s fault, it is the reality and it’s going to be painful. Learning to redefine our roles must be a lifelong process, I’m not sure. I just know I’m still learning.

Maybe a part of being proactive in that transition is becoming more honest and realistic with myself about what I’m able to do. I don’t deny that I suffer from wishful thinking, and probably make commitments I shouldn’t. Letting people know that I can’t be counted on, which is still hard to say, would probably let fewer people down less often. They have to know what to expect, which is unfortunately very little, but it’s up to us to fill them in.  Sometimes you get so busy being sick, you forget to communicate. You forget that people don’t know, or remember. Or you give up on telling them because it can feel repetitive and pointless, but I don’t think that’s true in reality. If I’m not honest about what I can do, out of fear or pride or whatever it is, I will let people down because they won’t know where the line is

I’ve had to face the reality in the last few years that there is no such thing as “solid plans” for me, or relying on myself 100% to be able to follow through with them. Every plan basically has an invisible “tentatively” written behind it. Last month I rescheduled 3 doctors appointments because I was too sick to make it. I have no idea how I’ll feel one day to the next, and that takes constant adjustment. I remember my whole family coming to visit last summer, they were sitting around my living room trying to figure out who could babysit the kids while they went to the French Quarter for the day. I remember sitting in the room saying Guys, I’m right here, I’ll watch them. I was actually, momentarily, offended that they didn’t consider me. Then someone said Mary, you can’t even do your dishes right now. Oh yeah, whoops. I forgot my own unreliability! As Louis C. K. would put it, I’m a non-contributing zero. Hah, yes. That sounds right. I had to laugh that even I couldn’t remember that I just can’t be counted on right now, and as much as that can be a kick in the gut to admit, it’s sort of silly to take it personally. If you’re sick, you’re sick–just admit it and keep moving.

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“Sweetie, can you do the dishes?” “No dad, I’m a non-contributing zero.” “Oh, right. Well, we love you anyway!” “Thanks guys.” “OK now get out of the way so we can do the dishes.”

 

I said in the beginning that being sick makes us crappy at fulfilling our roles, and in the traditional sense that may be true. But it also remains that when you’re sick, you just can’t do what you can’t do. If you don’t have legs, you can’t walk. It’s toxic to compare yourself to an old life where all your faculties were in place, to a new one where half your parts aren’t working. But being sick forces you to redefine your role, and I think there are ways to use your new way of “being” in the world and still be functioning in your respective roles. It’s not as is being sick effects your ability to love. If anything it’s made me love deeper, made me more grateful, and made the friendships that have lasted grow in certain ways. Still, I fail a lot, and many times it’s because I’m a flawed human being, not a chronically sick person. So I try to be extra cautious of both. Like most things being sick teaches, awareness seems to be key.

I’m always asking the questions that I think everyone is asking; am I doing the right thing, am I good person, what am I meant to do with my life? My circumstances? We all have our different sets of assets and vices, and it’s a balancing act trying to find the middle part where your feet are solid on the ground. Becoming chronically sick picks up your lifeless body and throws it upside down and backwards so that when you land you hardly know which way “up” is. It’s a puzzle, a maze, finding your way, but not impossible. The guru’s are always asking “How are you going to use what’s been given to you?” I always looked at that question as asking how I’d use the gifts I was given–the positive things in my life. Now I realize the question is far deeper than that…I think more often they mean, What will you do with your pain? How will you use this Extreme Disturbance to do better? Well hell, I don’t know. I just know that all we can do is try. Many times that means living with the mystery and not the answer. Also not easy to do.

I think it’s possible to use the condition of being sick in positive ways and to also maintain your roles by newly defining them. It seems to require incredible creativity and ingenuity, and I’ve certainly suffered from a lack of those many times. But I know there are ways to transform your old ways into new ones that are equally rewarding but not costly or impossible. I wouldn’t have confronted these conundrums if I hadn’t become sick and lost control of all the things I used to think of as mine. It has at least opened me up to the possibility of higher consciousness, and compared to who I was, I know the Mary without control has a better grasp on reality, is more compassionate, a better listener, less proud and more forgiving. I hope that doesn’t sound like bragging, I just think it’s good to examine the gifts that our so-called shitty circumstances can uncover. I obviously have a long way to go, but I know being sick has opened up deeper channels for me, and transformed the way I see the world and being in it.  Maybe it’s selfish, but I learned forgiveness by having to forgive myself first–for being where I was, for the things I could not do, for always thinking I should be doing better or further along. I had to let the unrealistic expectations go, and forgive myself for not reaching them.

I remember in my first serious relationship, which wasn’t until college, he frequently complained that I never apologized. My response was always “But that’s because I’m not the one who did anything wrong.” Holy cow, I’m the worst! It took years of learning humility and grace that being and saying sorry is a virtuous thing. It means recognizing your wrongdoing and at least becoming temporarily conscious of things you can do better. When you have a fight with someone, sometimes it’s because one person flat-out messed up. But many times, it takes two to tango, and talking things out, forgiving, letting go…all of it is stuff that moves both people forward. I don’t say this pretending as though I’ve mastered the art–I only know it’s there, it’s a choice. And it’s a good thing to know. I don’t know what or who I’d be like, were I still in my structured world, independent, living my life. But I know I enjoy the view from where I am now much more. I almost don’t look at life as mine anymore–I’m not sure whose it is. I’m still the driver, but it’s definitely a borrowed car.

Anyway, I guess this is your healthy reminder to keep those expectations low! And be grateful for the people who love you despite your human-wastelandednesss. They obviously see that you’re still cool despite being sick. And when people ask you to do something you’re incapable of, remind them with a smile: “I’m a non-contributing zero!” Then find new ways to contribute. :)

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“Son, you’re a non-contributing zero, and that’s OK.”     “…Thanks Dad.”

Health, Happiness, New Expectations