I often forget that my life is somewhat unconventional– That it requires further explanation to obvious meet-and-greet questions. I forget that answering the typical questions that arise with meeting someone new or catching up with someone old will often start a domino conversation effect that can go any number of ways. Sometimes it’s unintentionally critical questions, sometimes it’s the strangest of medical advice, and other times it’s this awful but easy-to-spot look that no matter what words they’re saying, it’s only the word doubt that’s written all over their face. Of course they’re not all this way, and sometimes when I let down my guard and am honest about my circumstances, it opens the door to friendships and closeness I would never have expected. There’s something about sharing a hardship (without being overly needy) and being heard openly, that evokes a certain trust between two people. It says I have seen the darkness too, and the space between them lessens.
There’s a whole spectrum of reactions, and even though I forget temporarily, for the most part I’ve grown used to and so prepare myself for the array of conversational tones and and twists and turns our exchange may take. It took a while but by now I can usually see where things are going fairly quickly and attempt to steer a conversation going nowhere either back to the other persons life or to an entirely new subject altogether. It’s for the best. Outside of the new and complicated, sometimes awkward anecdotes that come with simply talking to a person, my life feels very normal. On a personal, day-to-day level, I’ve grown used to the terms by which I live, and it’s usually when I share these terms with someone else, my large set of footnotes, that I remember how not normal my situation is. I long for the day when I can complain about my jerk boss, commiserate about the insane landlord of my apartment, (which in my fantasy always has big windows) and when my roommates are no longer my parents. No offense to them–they no doubt long for that day, too.
Living life with a chronic illness means a few things for me: It means being 32 and not working a real job. It means taking 25ish pills a day and still living under my parents wing. It means a lot of solitude and a lot of talking to the dog–probably more than to humans. It means I typically smell like BenGay or peppermint oil, and wear an ice pack on my head almost always. These things have aligned themselves under my own heading of conventional. They are my normal. But I forget that they’re not and require an often long, boring story that explains “my normal” that I’ve grown to cringe whenever I have to tell it. Reciting how and why you arrived at here and now, over and over and over out loud, you almost start to feel like a phony. I don’t know what it is, except that maybe after so long of recounting a story, one that could easily be labeled as unfortunate, in such a casual tone of voice that’s inarguably bored with itself, you begin to question how it is that you’re happy. How it is that you consider such ridiculous conditions as if they were commonplace and acceptable. You start to wonder why you aren’t more up in arms about the whole thing.
I don’t know when it became such a frequent place to end up, but lately I always find myself hanging in the tension between two opposites, struggling to find the fragile balance in the middle. Feeling bide between two of anything is usually unsettling at best, but can often (for me) be exhaustive torture. The two forces aren’t necessarily always polar opposites. Sometimes they’re merely dissimilar, but operate on the same plane. Think surrender and giving up. Gone unchecked, one can quietly ooze into the other, and suddenly you’re nowhere you ever meant to be. Sometimes they’re contradictory forces: maybe your heart wants something that the head doesn’t like. Other times it’s reconciling two truths at odds, choosing between two options and stuck in the messy mud of the middle. Since I consider myself pathologically plagued by indecisiveness, I seem to find myself living in this “tension between two” all the time. It’s trickled its way down from me flailing between two important choices, to agonizing over things as inconsequential as toothpaste. I’ve spent way too many hours of my life struggling in that aisle.
Currently, I find myself in the center of multiple conundrums, questions, opportunities, examinations.. Not all of them are quantifiable, and many of them seem to be ongoing or recurring. I lay in bed at night and the questions fly around the room like some kind of adult mobile made of cosmic curiosities and pitiful choices. Here’s an example of the things my brain has been tangled up with lately:
*How do I surrender to my circumstances and accept my reality without giving up on trying to make things better?
*How do I talk about being sick without getting caught up in my story?
*How do I write bearing the reader in mind without compromising authenticity?
*How do I maintain a sense of autonomy and identity knowing full well I am reliant on the help of others.
*How do I engage in advocacy that is proactive and realistic without losing myself and my worth in every day outcomes?
How do I satisfy this sweet craving without overdosing on gummy vitamins?
Welcome to what Carl Jung called “The Tension Between the Opposites.”
Jung taught that if you can withstand the tension between two opposites, if you can sustain the angst of being suspended in the middle for longer than what is typically comfortable, often possibilities and solutions will arise you wouldn’t have considered before. It can be an enlightening experience, but not easy, and often painful while in the thick of it. The waiting is tough. But if you can hold that tension, you’ll usually encounter what he referred to as ‘The Transcendent Third’. This new ‘third’ solution can involve both or neither of the two pieces you’re between, but in the wait, you can reach deeper into consciousness, and often that’s where the wisest answers can be found. “There will be two opposite approaches for solving it. Neither solution will be correct, but must undergo the tension that will result in a third approach.”
The world is so fast now. We rarely take the time to be still, to even allow a silence, mistaking it for boredom, or a space that must be filled. If you’d like to experience the discovery of the Transcendent Third, you have to answer the question that Lao Tzu posed on the matter: Do you have the patience to wait until your mud settles? I’d say most of us don’t. Or we do but fail to realize it, living among a pace that’s fast and noisy and nearly impossible to keep up with.
Lately I’ve given a lot of thought to the concept of surrender; something I continue to learn and accept almost every day it seems. Among everything that being sick has taught me, surrender seems to stand out the most. Difficult beyond words, but once allowed in, it can feel like you’ve been given a glimpse of the divine. It can be a beautiful thing, but for me, learning it didn’t come easily. Or all at once.
For years before 2011, my body spoke to me in a language called pain. Fatigue. It said slow down, stop, you’re not getting any better. And for years I downplayed, dismissed, and sometimes outright denied to myself that there was a real problem. As things were falling apart inside, I strived to hang on to all the attachments that the illness slowly started to take. I thought as long as I could keep my job, it lessened somehow the reality of having a disease. It diminished it to an anecdote. I had it, but it didn’t have me. As such, surrender came in pieces. Determined as I was, I couldn’t bare the tension of working, being sick and trying to get better. Convincing myself I could multi-task, I was actually just failing at three at once. Hah. Something had to give. I
will never forget that conversation in Andrews office, me holding back the tears as best as I could, saying I didn’t want to go. I had done my best, but my body just couldn’t take it anymore. Neither of us wanted me to worsen. We hugged and said that thing people say even when they know it’s not true. “I’ll see you again soon!” Don’t worry, I told him. But he did look worried, something in his eyes. I punched my time card for the last time–yes the 100-year-old gallery still used time cards. On that drive home across the bridge to my parents house, I cried the whole way. I felt more lost and afraid than I ever had.
That was the end and the beginning. The next two years would be the hardest–the most brutal on every level. I resisted. Lied to myself. Conceived of ways I could return to the path I was on before getting sick. It felt like someone had sat on the remote control of my life and accidentally pressed the pause button. There was an incessant feeling that wherever I was, there was somewhere else I should be. Not this. Not here. I was sick when I should be well. In California when I should be home. At home on a weekday when I should be at work. I never had an inkling that Yep, this is right where I’m supposed to be. I thought if only I could survive this “wrinkle in time” I could resume the life I’d had before. Just like that. As if time moved in any direction but forward.
I’ve had six years to adapt to the life I would feel proud to call my own again, but it certainly wasn’t the one designed by my hand. I think the final straw that led to surrender was simply a matter of being too tired to fight. Somewhere after year 2, I let go of the last of my life plans–fed them into a shredder and watched as little paper ribbons emerged. Surrender. One part complete fear, one part total release. In hindsight it’s clear that the fear was mostly ego-driven. If I wasn’t designing my own outcomes, who or what was? And by the way, who could know the path I should take better than me? (Laughable now) But the release had one up on the fear. It meant making room for the life that was waiting for me to finally begin. In fact I was the hindrance. I was the one sitting on the remote.
After six years in the game, my life doesn’t feel foreign or as though it should be another way. It feels more like a perfectly worn-in pair of jeans. The ones where the denim is at that awesome level of soft and is tight and skinny in all the right places. I think jeans are one of the most personable clothing items. Have you ever tried someone else’s jeans on before? It feels like trying on clown pants. In the beginning, that’s what being home on a Tuesday at 2 pm felt like. Now that’s just business as usual.
I now struggle with the idea that if I surrender too much, if the circumstances of my life simply feel normal, I’ll become complacent. I’ll forget that it shouldn’t be this way. I’m not supposed to be sick all the time and spend vacations half conscious on the couch. But it’s become the norm. I don’t want to become so desensitized that a bookshelf filled entirely of my prescription bottles doesn’t shock me at all. And I don’t want to lose the fire in me to change the things we need to change, as a community that fought long and hard before I ever came around. I want to embrace and be happy where I am, but I want to be proactive. And so I’m trying to find the balance between enjoying the present while also remembering that there’s an injustice at play here, something that needs fixing. And I know that I have to try and help fix it.
I could easily be the one too sick to fight, just like millions of others with MECFS are, but I’d have no doubt that the warriors in the community would continue to work until it’s done. The baton might change hands but the balance remains. And just because I’ve tapped into joy and surrender and gratitude where I am, doesn’t change the fact that I am part of a community, one that has fought for this cause for decades. I owe it to them to do what I can. I am constantly seeking a way to advocate for what I know is right, but remain distant enough that my ego doesn’t get drawn in to the wrong efforts. It happens all too easily.
A very strange thing that might be hard to believe– I don’t actually love talking about being sick. Gasp. And I feel that I’m kind of terrible at the whole advocacy thing. Luckily online my awkwardness doesn’t shine through as much, but it’s still a struggle for me to solicit people to help, even though I believe 101% in the cause and am certain I’ll continue petitioning and fighting for it until the deed is done. But how can that be?How can it be true that I don’t like talking about being sick and yet I have an entire blog devoted to very subject: “Life through the sick lens”?
I’ve toyed a lot with these opposing truths and tried to understand how I could want both. And I think the answer is somewhere near this: By speaking honestly about the experience, particularly the chronic illness experience, which I found to be largely misunderstood, and by foregoing the typical polite response or social etiquette and supplementing it instead with what is true, I open up a space for us to move closer together instead of further apart. By writing about a topic that can be very isolating, I’m attempting to give people a chance to understand, instead of blindsiding them with “Well I live in mismatched pjs and I haven’t showered for a week because I’m too weak to shampoo my own hair and oh, you’ll never understand!” (Runs out of coffee shop. Trips. Continues running.)
Contrary to what I hear people say all the time, the world is actually full of good people, and most of them aren’t trying to hurt you. 99% of the ones I know are exceptional, and they are sympathetic and helpful about my situation when given the chance to be. But you have to be willing to reach out, which means you have to expose a need, and sometimes that’s the hardest part of all. I only know if I keep too tight a lid on my own unusual experience, hellbent that the world will just never get it, I will most likely be right, but it won’t be the worlds fault.
So, life continues, seeking out the peace in the middle. Waiting patiently for the right answer to arise in so many scenarios. And holding the tension between opposites long enough to tap into something deeper and wiser than I ever could be. It’s not the easiest thing, but it sure beats pulling my hair out between Crest Multi Care and Colgate Total at midnight in Walgreens. The point is to be still and patient, wait for the mud to settle, and allow enough time for my own transcendent third to arise.
Health, Happiness, Settling Mud
FibroM.E.-Awesome 
I also relate so much to what you have written. You express so well a tension that I think all of us with this illness experience. It was hardest for me when I was deciding to drop out of my clinical psychology doctoral program. It’s easier now than it was then — but these issues don’t ever completely disappear, I think. There is so much I’d like to say, but brain fog claims me today. What I WILL say, though, is that I’m 51 and became ill at 25. As I was reading your piece, I kept thinking that you remind me so much of myself at your age (the process of struggling/accepting I was going through back then). And then I thought: We MUST find a cure, so that you and others your age and younger are not still ill when YOU are in your fifties. I have signed your petition and passed it on. I hope and pray (because I am a praying person) that it will happen. I have lost enough years of full and active living to this illness. And so have you.
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Randi– thank you for writing. And reading. My mom was 34 when she became sick and is 64 now. I tell her all the time that we’re going to live lives like Benjamin button, and in 5 years after we’ve found the cure, we’re going to feel better than we ever have even though we’ll be the oldest we’ve ever been. Then I made her promise me we’d go sky diving when we are better. She agreed :) thank you for signing and reading and writing. The cognitive stuff has been awful for me too lately.. spaghetti brain I call it. Anyway, just wanted to remind you, it doesn’t matter how old we are, so long as we get better and really feel that sense of “alive” again.. the one this illness blows out like a flame. I truly, genuinely, believe this is going to happen very soon, and I couldnt begin to explain why my intuition is that way. It’s not just wishful thinking.. I can’t explain it, I just know that all the right people and things are falling into place, and we’re going to get there. Just have to hang on in the meantime. Remember you always have a community here who know what you’re going through, so don’t ever hesitate to reach out. Thank you again for signing the petition, it will be helpful to have 40,000 signatures of public support when I go to the senators office :) stay as well as you can, and don’t be a stranger! All the best,
Mary
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You ask a question, I think of an answer. You answer yourself with either what I was thinking or some other thing more beautiful and deep and true than anything I could ever conjure. On and on until I’ve nothing left but to think yep, you got this, sis.
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Hah what an awesome comment to leave! I’m so happy any time I hear it writing is resonating with anyone. It’s so easy to be writing all alone in my house and think, is anyone reading this crap? Jk not crap.. you know what I mean. Anyway it’s nice to hear when someone likes it or recognizes the self in it– that means I’m not as alien or alone as I sometimes feel. And that means you aren’t either! What a happy think to know:) thank you for reading and commenting. I hope you’ll be back.
Love
Mary
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You resonate with me more than you know. I guess I should sooner or later tell you that I’ve written about you, in my post When Things Fall Into Place, Pt. 2: Choose Your Diversion. Maybe it is crap, but it’s my crap. Ha! Feel free to disagree. Either way, you are a testament to me every day, little sis.
Love,
Tiff
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Hey where can I read the post? It won’t let me click on your profile so I don’t see where your blog is. Send me that crap! Kidding. Cya :)
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Ha! Weird, that has been happening to me too. Hope this works.
https://astralcartographer.com/2016/07/16/when-things-fall-into-place/
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I relate completely with what you are saying. I have difficulties answering the question of what I do for a living now. I worked 10 years for the Air Force in public affairs and medically retired in 2009. The migraine attacks were so frequent and the medication I was trying out to prevent them as well as the medications I tried for fibromyalgia did nothing to end either. I honestly thought I would retire, but I would someday feel better and be right back in the workforce. I have those two and also interstitial cystitis, TMJ disorder, and high blood pressure. I think I’m at 16 pills a day. I was on all manner of combinations. I’ve been learning to adjust to my normal. I’m just having a hard time releasing myself from shame. I love that you brought in my favorite psychologist, Carl Jung. :)
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Hey Susan,
I totally know what you mean.. when I left my job in 2011 for medical leave it was supposed to be 3 months max.. and yet here I am. It was a very hard thing to accept for a while and there are still those days when I question it all. But the more I try to find my footing in the place I am now more than look back and try to wrangle my old life back, the better I feel. I honestly think for some reason, we weren’t meant to be a part of the conventional world for a part of our lives, and if we use the time wisely, there is the chance of redeeming this experience when it’s over. Maybe we will have learned something totally new, or transcended who we used to be in new and exciting ways.. there are so many possibilities. But when you’re reminded of your limits all day by something that you can’t control.. it’s hard, to say the least. And the fact that a lot of people with this are type-a hatd workers (sounds like you were/are) it can feel extra maddening because people don’t see the battle we’re fighting every day, every minute.. and to outsiders it can look a lot more laid back and breezy than it is. Little do they know…. anyway, thank you for reading and For writing. Remember you’ve got a community here if you’re ever feeling in the dumps.. we’re all in it together! And together we are going to get better, too. I just know it. Hang gotta hang on till then and find a way not to waste the pain. Easier said than done, I know. But always good to know you’re not the only one. Hang tough!
Mary
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I appreciate your blog so much! I am the wife of a 36-year-old CFer and I often struggle to understand what he goes through. I read a lot of similarities between both of you and you help me understand his perspective. He is still in the middle of his mud – work, family, school. I try to get him to slow down but he tells me “I’m not going to live life in a bubble” and goes hard until he gets sick – because he will get sick either way. I’m sure this sounds familiar.
We also struggle with how to tell people about his health. Most of the time we keep it quiet because it’s hard to explain it in an elevator speech and to the naked eye he looks healthy. The best we’ve come up with is to say he’s a lung patient but even that often prompts follow-up questions.
Thank you for this post. For showing someone living with a CFer that is a “tough guy” who rarely needs help what he experiences (just yesterday I dropped him off at work, he puked in the front bushes, grabbed his coffee and bag and insisted he was fine and didn’t need to go back home). I’ve heard similar language out of him during his more trusting moments when it’s just the two of us. These are tough questions that I suspect cross every CFers path and they don’t come with stock answers. I hope you are able to wait for your mud to settle, and that it provides you with that third approach.
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Such a beautiful thing to write, thank you. I can’t tell you how lucky your husband is to have a wife who is even attempting to understand his very unique experience. This illness can easily demolish relationships but it can also make them stronger, it can allow a new kind of closeness as letting someone you love help you and see you at rock bottom is a very vulnerable thing, but when it’s with a loving compassionate person like yourself, it only solidifies and grows the love you already share. I’ve lost friends and relationships bc I’m sick, but also all of my really close “die hard” friendships and relationships have all become closer and sturdier in their own way. Turns out we don’t need many friends or loved ones, just a few around who love us fiercely– and it’s clear to me that you do. It can be just as devastating for loved ones on the outsides, always seeing someone who they love as sick all the time and struggling m. It takes courage and strength to stick by them and see them through the worst days and nights. What you are doing for your husband is a beautiful thing, and you may not always hear “thank you” enough for all the love and support you provide, so on behalf of all CFS’ers who have been left by the people they’ve needed, thank you for being one of the strong ones who stayed. I know it isn’t easy, but it’s a beautiful example unconditional and selfless love. Pat yourself on the back and know you’re doing a wonderful thing, because you are :)
thank you for writing, and I’ll keep your husband in my prayers. I know what it means not to want to live in a prison, but you also run the risk of further imprisoning yourself if you don’t give your body the rest it needs– which with this illness, is a ridiculous amount. But he sounds like a strong and solid person like yourself. Y’all hang in there.. it’s going to get better. Don’t be a stranger!
Love
Mary
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I loved this one. You always seem to write just the right thing at just the right time… it’s hard and isolating when the sick comes back. Right now, I have to be sick, unable to take my medications because I’m pregnant. It’s a stark difference for me – my medications are a band-aid for my symptoms: stimulants for fatigue, pain medications for the pain (duh). But now I have neither. Where I was once productive, I now sit and stare @ the computer screen, too tired to do anything else. On top of pregnancy fatigue, I have the bone-crushing, elephant sitting on my chest, CFS fatigue. People keep saying ‘it’ll get better in the 2nd trimester’, but I know it won’t (from my last pregnancy). I know I have to slow down and ask for help, but it’s hard because everyone is so used to me faking like I have it together. And every time I hear “wow, I’ve never seen you actually sick before” I cringe a little inside because I know that’s my fault. I’m so scared of the ‘you don’t look sick’s and the ‘why do you even take all those medications, you seem fine’s and what would happen if these people really knew what went on behind closed doors. The guilt I feel when my 2yo doesn’t get to go outside because mommy can’t get off the couch, or when we have a whole day together and just researching something for us to do seems exhausting. ‘Sick mom’ are my opposites. I know I need to practice acceptance and stop putting all that energy I don’t have into caring what people think about this particular ‘sick’. I know it doesn’t help anything. But I don’t want to turn into the stereotypical, whiny, ‘I just can’t because I’m too ____’ – I know it’s not black and white like that. I know what you say is true. I admire you for your courage in practicing acceptance and admitting that this may not have been your plan, but you’re making the best with what you’ve got. You emailed me years ago and said you’re amazed with all I said I do while being sick. But I thought to myself that you’re the one that’s amazing – you’re the one being authentically you. I need to bring these opposites together, and realize that despite everything I go through, I have an amazing little boy who is empathic, I’m good at my job (Psychologist – hey, we all get in this field for a reason!), and I’m doing the best I can with what I’ve got. Thank you for writing and reminding me that it’s ok to be me, that I’m not alone (:
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Ali, thank you so much for writing. Your words are deeply resonant and I can see that we’ve felt the same way many times. I admire you for being strong enough to withstand pregnancy AND motherhood while sick and unable to take the normal meds. Mine are bandaids too, but I cringe thinking of the pain and suffering id experience without them. I probably don’t appreciate the medicine we DO have, even though they aren’t treatments. I still continue to be amazed of what you’ve accomplished and are enduring, but know that your efforts are not totally solitary and that other people out here see and hear you; we’ve felt your pain. It can feel lonely a lot, and it’s true, many times this is because we do our hair and put on makeup and show up to parties looking like happy healthy human beings who have it together.. how could we say that we’re this sick on the other side of things? And yet we are, it’s just that no one is there to witness that other side. They see a finished product: not what went into it and not what the consequence will be when we pay for it. It’s very hard for me to talk about it sometimes and a lot of times I don’t because I can see peoples eyes glaze over or hear the monotone tenor of their voice and responses and it’s clear– they don’t get it and they’re not going to even if I keep talking. And that’s ok, I’ve been thinking lately maybe it’s not important to make sure everyone understands, just important that WE understand and trust our selves and our limits, and that we don’t feel shame because of them. I think the desire to make people understand is so that we don’t feel bad about being sick, so we can be reassured, but the truth is whether people get it or not, this is not something we can control or asked for. All we know is that our bodies are broken and we are physically very limited. If we respect those limits and ourselves, I guess that’s what matters. Sometimes that means saying no to things that will upset the Balance or someone in particular (I’m very guilty of this) but we have to take care of ourselves, because who else will? They all think we’re fine! Hah, anyway, I relate totally to what you’re saying and as usual the right thing to do is much easier said than done. But at least by recognizing it and holding it to the light, we can start to chip away at that perfect image we strive to exude, and just humbly be ourselves, and know that it’s enough. Because it is! :) if you ever need help remembering that, don’t hesitate to reach out. You know where to find me…
wish you all the best and pray that your symptoms lesson while you’re unable to take what normally helps. You’re doing a wonderful thing for that life you’re making inside, and at least at the end when they make their way into the world, you’ll know that it was worth it :) hang in there.
Love
Mary
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