Sick People Humor – FibroM.E.-Awesome

Oh, and two new favorite songs. At the bottom ——>>>>

This morning I was lucky to wake up to one of my favorite scenes: a thin blanket of white glistening atop every surface as far as I could see. Smoky, colorless pearls of clouds covered the sky, simulating life within a snow globe. No one had shaken it yet. A pristine world shimmered untouched, au naturale. The flakes were still falling, and as the morning went on they would oscillate from quarter-sized to barely visible. I love snow so much. And miss it! We barely received any this year, so this felt like a nice treat, despite it hardly reaching an inch. It’d be gone by late afternoon, but still it carried with it the sentiment of an anonymous gift.

I drank my coffee and watched as River hippity hopped around on this fluffy new texture, wholly excited simply by the feeling of something new under her feet. I imagine most dogs are this way, and the ones who aren’t are usually cats. Most people around here would say “It’s about time!” as it’s been an incredibly dry and mild winter Our first *real* snow arriving February 20th!? Everything in due time, I suppose. Else we are slowly succumbing to the unnatural phenomenon of everything warming until none of this is habitable anymore. By that time maybe, Mars will step in. If not, we self destruct, which Tolle describes as “not really a problem at all.” We’re all going to go, one way or another.

I am weaker than I’d like to be—which is not weak at all, of course. Even though I had inched my way to improvement over the last week, for some reason I woke up on Tuesday to the physical news that my muscles had turned to lead over night. Life is full of such creative surprises! My upper body and arms in particular strain to do very basic things, like brush my teeth—and that’s a great way to feel even more pathetic than you look. But I know the drill: no matter how many tasks remain written, undone, on the list that I’d like to start and even, gasp, finish in the near future, will all just have to wait. And I’ll just have to wait until my strength returns, which seems to happen inevitably in time, for no good reason at all— Just the same as how it arrived.

The kind part of laundry, dishes, the spice cabinet I’ve really been wanting to organize, is that they’re all very patient, so lucky me! In reality, when I can’t do these tasks it means someone else will have to, and I can’t tell you how bothersome that is. Not bothersome, but something more adjacent to guilt. I want to be a clean and organized and helpful person, and nothing disrupts that possibility more than a body reliable purely for its unreliability. Infuriating! But those are the rules dear. You can rest, waiting, either angry or surrendered; *that* choice is always mine.

The only real way to *wait* for some level of wellness to return with any sanity is to embrace to the present. Continually try to re-renter and stay in the now, reminding myself everything is actually fine. I *wish* it were different, yes. But it’s not life and death here. It’s mostly tolerance, humility, and patience. I have to remember (again and again on days like this) that all things of priority are operating, and all secondary things will be tended to when I’m able. The pile of laundry waiting to be folded has turned into a sculpture like heap in the hallway. Interesting color combinations and whatnot. More life surprises!

This thing called surrender comes highly into play throughout times like this, but it must always be discerned and separated from the idea of giving up. Yes, the two are mutually exclusive,as one implies befriending the present moment and accepting what’s possible and not; reality as is. The other has to do more solely with will power and throwing in the towel. As anyone and everyone with ME/CFS knows, if you could will-power your way out of this thing, we’d all be healthy as an ox. As Oxen? Who decided Oxen were the emblem of health anyway? Wait, who cares.

Despite the inch of snow disappearing by evening, remnants will remain. In the shady areas small patches it will last for a week. And in the yards where children play, sad looking snowmen will slowly shrink and deform until just two twigs-once-appendages lie in the wreckage pile. Perhaps with a rotting carrot somewhere in the mix. But for now it can simply be appreciated and enjoyed. One of my true great pleasures in life is experiencing the silence of snow, falling or freshly fallen. If you’ve ever stood in freshly fallen snow, or caught it still coming down, you know exactly the tenure of silence it conveys. It’s a sacredness proximal to watching the sun rise or set, or looking out into the oceans without a spec of land in site, or into the depths of canyons thousands of feet deep.

It offers to me the feeling of how much bigger than me the world is- how the earth inhabits a living autonomy, apart from the humans who occupy it. And yet, I have to believe we’re connected on some unseeable, unknowable field. I feel small in a good way—protected, overseen. A feeling of trust emerges because nature and all its phenomena far surpass me and my little life. It knows exactly what it’s doing. Which is reassuring personally, because I certainly do not.

(Here are some polaroids I took across the day. Polaroids: Because there’s just not enough damn photos out there.

Snow gives good reason to pause and reflect. Not to mention it makes for nice scenery when you’re sick and essentially useless. I would surmise too few of us really stop and take it all in as much as we ought to. Easy to get lost in the frustration of scraping down your car windshield or having to shovel the driveway. For me it’s the audible nature of it, both the particular sounds it makes and the muteness it creates. If you close your eyes, nearly everyone can hear the crackle and crunch of footsteps in the snow. But you can also hear the insulated silence, the voices and sounds muffled by the accumulation. As it turns out, there’s a scientific reason why snow leaves such a pervasive, distinct quiet: Each snowflake acts as its own tiny sponge, as does the amassed snow on the ground. In this capacity, the snow is actually absorbing sound, leaving a sanctified hush in the place of the typical, unbuffered world and its noise. Is nature neat or what?! I DO declare.

(Two Weeks Later)

The snow is long gone, the birds are chirping, and it’s in the upper 60’s. February is over! I was starting to doubt that might never happen and I may personally enter a ground Hogs Day situation. Anyway, this weather is a tease. We’ll get hit with a few more cold snaps before the warmth really settles in. Guess what? I’m still weak. ME/CFS is a resilient disease. Rain/snow/or shine: It can and will thrive through anything! Oh well, I had a fun and more energetic weekend, which is probably why I’m paying a physical price now. So it’s back to to-do lists undone, River ansy for her walk, and all the sounds of nature crystallized and clear, animating another day of rest.

I have learned to do this, and work constantly not to forget. I’ve gotten pretty good at doing very, very little. Can you imagine that being anything to be proud of? Ridiculous. And normally, no. But for the hand millions of people and I have been dealt, it’s a teeny, tiny victory. With patience, all of what we must do, all of nature, and all we wish to achieve will unfold as time and space allow. In the meantime, we have to continue to find and adapt to who we are, no matter what transpires on the outside of us all.

Health, Happiness, Unfolding

P.S. Listen to these two songs: They’re my faves right now.

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.

aid726954-v4-728px-Stop-Being-a-Loser-Step-7 — “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. :)