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The day begins. My alarm clock goes off, and as consciousness slowly seeps in I find that I have been sleeping on my stomach, as is my habit. Flipping over is no easy affair, as my useless right arm and leg are dead weight, and, as an added bonus, the spasticity that attacks them makes them extremely stiff as well. I know from experience that simply trying to roll over like any normal person just won't work. I must will my right leg to bend at the knee, creating the momentum needed to set my body in motion. After a considerable amount of effort, my right leg bends in a sudden spasm, and as it does so I use the force generated to get myself situated first on my side, and then, finally, on to my back. The first success of the day.
That success does not come without a price, though. The maneuver results in searing pain that radiates excruciatingly from my hips. I suffer from Avascular Necrosis (click here), a rare side effect of intravenous steroid use that results in the death of the bones in the major joints. I have the condition in both hips and both shoulders; these days I'm living with the literal equivalent of two broken hips, as both of my femoral heads have collapsed. At their worst, my hips feel like they're made out of a sadistic mix of broken glass and blazing razor blades, producing a level of pain I formerly had no idea even existed. Some knowledge is best left unlearned.
The pain is bracing, and serves to knock some of the drowsiness out of my head. Not all of it, mind you, because the fragility of my joints dictates that I sleep in spurts, as every time I unconsciously adjust my body position during the night I am awakened with a generous jolt of ouch. Finally on my back, I clumsily reach for the alarm. As I do so, my left shoulder makes sure to remind me that it, too, is afflicted.
Next up is wrestling my rebellious body into a sitting position on the side of the bed. Aside from some pain, my left leg doesn't present much of a problem and makes the trip to the edge of the mattress under its own power. My right leg requires a little help from my left arm and hand, which I then use to hoist myself into a sitting position with the help of the handy dandy little railing that is attached to my bedside. I reach for the nightstand to grab the glass of pills that had been placed there the night before, a pharmaceutical cocktail designed to combat pain, spasticity, inflammation, bladder issues, and thyroid deficiency (and enrich the companies that make the meds).
After downing the pills with a slurp of water, I sit for several moments summoning the will to slowly and painfully uncurl my body into a standing position, after which, cane in hand, I'll take the two or three awkward steps to my wheelchair for the 10 foot trip to the bathroom. The anticipation of the effort required to complete these actions makes the notion of simply staying in bed quite appealing. But no, while I'm still able, I'll not consign myself to a bedridden day. There may be plenty of those forced upon me at some later date, the thought of which I try my best to put from my mind. Instead, still sitting on the side of the bed, I say to myself, out loud, "Another day in paradise…"
Of course, that phrase is uttered with a tremendous dose of sarcasm, but the words also serve to remind me of a simple truth. Today is the only today I'm ever going to have, regardless of the challenges it holds. Once it's gone, it's not coming back. It's nonrefundable, nontransferable, and has no shelf life whatsoever. Despite the value we place on so many shiny objects, the most precious commodity of all is time, as our personal allotment of it becomes scarcer with each passing second.
With luck, work, and savvy you can amass reserves of cash, or gold, or precious jewels, but time defies hoarding, instead forever slipping through our grasp despite whatever strategies we may employ to hold back its relentless flow. We've developed multibillion-dollar industries devoted to denying the passage of time, or at least the toll it takes on the physical body, but no amount of Botox or plastic surgery can delay the inevitable. On the contrary, the older we get it seems that our experience of time speeds up. That gloriously long two months of summer vacation we experienced as 10-year-olds now flashes by in what feels like a matter of moments. We are like rocks tumbling down a mountain, picking up speed as we go, racing ever faster towards a common end. One hundred years from now the world will be filled with all new people, the luckiest among its current occupants remembered by a precious few. We are but tiny specks in the vastness of an unknowable universe, each individual existence as inconsequential in a cosmic sense as a lit match viewed from a distance of a thousand miles.
Given that reality, each new dawn is indeed another day in paradise, aching hips and petrified limbs be damned. Those of us unfortunate to be burdened with disease should be all the more aware of the dearness of the moment at hand. When healthy, it's easy to take the tremendous good fortune of simply being well completely for granted, concentrating instead on all of the perceived impediments to our so-called God-given right to happiness. In fact, the right to happiness is a gift we give ourselves, by the choices we make and the actions we take. Yes, shit happens, but the way we choose to perceive that shit is what defines it as good or bad, happy or sad. No circumstance is inherently a disaster, or for that matter, a triumph, it is only our perceptions that make them so.
When I was healthy I used to not only sweat the small stuff, but agonize over it. Each setback was a calamity, each broken relationship or career impediment the vehicle for a descent into a pit of anxiety and depression. Looking back now, from within a deteriorating body, I can clearly see that all of those perceived misfortunes often led me to completely unexpected and usually improved circumstances, and that the only real obstacle to my finding contentment was in fact me and my insistence on clinging to the negative. While I was burning a torch for some lost love, I foolishly disregarded chances to find new and possibly truer affections. While stressing over a career that didn't always go as planned, I was blind to opportunities that in retrospect seem crystal clear. By concentrating on loss, I denied myself gain, time and time again.
Now, the inferno of illness has thrown light on to the folly of such behavior. Faced with physical limitations that are completely beyond my control, I am determined to make the most over that which I can still influence, my attitude and my actions. I'll never claim that my getting sick is some sort of blessing, as such inanities makes me ferociously nauseous. Getting sick sucks. Dealing with constant pain sucks. Experiencing creeping paralysis as a disease insidiously whittles away at my body sucks, sucks, sucks. I can think of no action so disgusting that I wouldn't undertake it if it held even the slightest chance of beating back this monster. If crawling up the rectum of an incontinent hippopotamus might somehow make me better, then coat me in Vaseline and get me to the nearest zoo.
Despite all of the opportunities for misery that chronic illness presents, or, maybe because of them, I am determined to squeeze the most out of however much precious time is left while I am still able, hopefully years rather than months. This is not to say that I am some sort of saint, sitting in an state of ethereal bliss in the face of what very well could be a dire future. Rest assured, I do my share of griping, moaning, and complaining. I am also not one of those patients inclined to attempt to scale Mount Everest or to be the first person to cross the Atlantic in a floating electric wheelchair. There are many days that the best I can muster is watching Godzilla movies in my underpants. But I am resolute that on such days, I will at least try to derive as much contentment as is humanly possible while watching Godzilla movies in my underpants. And, believe me, if you fully occupy the moment, and let neither thoughts of the past nor the future pollute the present, watching Godzilla movies in your underpants can be a very good thing indeed, especially if you have a box of chocolate covered pretzels to munch on while watching.
Yes, it's another day in paradise. I've come to realize that paradise is not a destination, but rather an environment that is created from within. Sitting on the side of my bed at the beginning of each new day, waiting for the pills to kick in, I try to remind myself of that fact, and some days it's much easier than others. But even on my worst days, when the walls and buttresses within reveal the chicken wire and chewing gum that they're made from, I understand that there's really not much choice. Time is fleeting, and we don't get bonus days for time spent miserable, however justified that misery may be. The path to paradise or perdition is one and the same; it’s how you choose to perceive the view along the way that makes all the difference.
an edifice ofReplyDelete
chicken wire and chewing gum
houses a brave soul
Wow..that about says it all! I need to read this everyday...I think I'll print it out and frame it. Thanks so much!ReplyDelete
There is the saying, "Happiness isn't getting what you want. It's wanting what you have."ReplyDelete
Reading your description of getting up made me think if it were me, I think a prime motivator might be one of the top 5 physical sensations known to man, the release of a pee held long past it's due date. I swear there are mornings where my head is pounding and it feels like I am walking on nails when that thought is the only thing to get me going.
On the more serious substance of the post, I can certainly understand from where you are coming. While I know there is only now, hell if it isn't sometimes difficult not to compare today with yesterday. When healthy, I used to look on occasional down days as ones when it was OK to just do less because I "knew" tomorrow would be an even better chance. Now I find myself saying "Fine today sucks, but will tomorrow be better? Promise? I thought not. so get up and get going!" Of course this usually sets off my competitive side where I starting asking myself how tough I feel today in an effort to psych myself up for the day.
I remember the time when I refused to read anything about MS; stories, articles...nothing. It scared me and I took the ostrich route. Until I found you, that is. Yes, I'm one of the fortunate MS'rs who is living well with the disease and indeed appreciate that fact AND my precious life moments. Your posts are addicting, because you cut to the heart of life. You don't waste words or moments diluting what is real. Thank you for getting out of bed each day. You're helping spread a message that can only be told by a person who has your incredible perspective and written skills. Sending love.ReplyDelete
Thanks, Marc. Thanks for the hippopotamus image, and for the whole post.ReplyDelete
Amazing. Again. I am reading this to my children. The earlier they feel this in their soul,the better. Thank you.ReplyDelete
I didn't realize U were toast; thanks for the great post!! ToniReplyDelete
I've nothing to add but I am sharing with friends and family. I, too, use my hand to help my leg along, and thank God I have that hand to help myself. So well written, as usual.ReplyDelete
Thanks Marc, as usual well-written, informative, amusing and brutally honest. My day is not unlike yours now. Steve W.ReplyDelete
That's me right behind you in the Hippo. It's dark in here, but know you'll keep going.ReplyDelete
I've thought about this post quite a bit. Are you OK? You are usually very real with your description I've read which made we worry for your state of mind. This is just the first one which has left me with an image of you hanging off an emotional cliff hanging by fingernails to find purchase and climb back up.ReplyDelete
Judy-as always, I'm honored to serve as your poetic inspiration…ReplyDelete
Anonymous-you're very welcome, and thank you for your generous comments.
Life-yeah, I figured I'd leave out the motivating factor of the overwhelming urge to pee. Didn't want to complicate matters too much, but the urge to urinate certainly can get one going. As for whether tomorrow will be "better" than today, there's no way to tell, so it's imperative to try to do the best with what this day brings, even if "best" is a relative term. And I think it's quite alright to note your own toughness, I think many of us have far eclipsed our own expectations in that category…
Cassie-thanks for the love, I'm humbled by your extremely kind words. I'm happy that your MS has been relatively gentle, and hopefully, with the headway being made against the disease, things will stay that way for a good long time. As for cutting to the heart of things, why sugarcoat the situation? That would be doing a disservice to myself and whoever happens to read my words, as I tried to present the truth, warts and all… Sometimes it takes a bit of ugliness to be able to recognize the beauty that resides in the everyday. It's all part of that Yin Yang thing, no black without white, no pleasure without pain…
Lisa-glad you liked the hippopotamus, although I must say the view is better from the front…
Dinah-I don't know how old your children are, but I might leave the hippopotamus part out if they are on the young side. Wouldn't want to traumatize them… I do hope my words might serve as guidance as to what is actually important in this life, but as they say, youth is wasted on the young. Experience is the best teacher, for better or worse…
Toni-not sure I get the toast reference, but thank you for the kind words…
Sue-thanks for your comments, and I'm glad you have at hand to help yourself. It's amazing what you can accomplish with only one hand, especially if you learn how to use your teeth to get a good grip on things. As they say, necessity is the mother of invention…
Steve-though the days may present difficulties, the are each still precious, and fleeting. Seize the day, even if it's with gimpy hands…
Kicker-I thought there was someone pushing me from behind. I wonder just how many of us we could fit in this hippo?
Life-thanks for your concern, but I'm okay. Perhaps a little frustrated with the disease, especially since my diagnosis is so much in question. Kind of has me spinning my wheels a bit. Still, plenty of reasons to smile, and why not? We are all just players in a great big theater of the absurd, and what's more absurd than having the disease that leaves doctors with great big egos scratching their heads? Thankfully, there are a few doctors out there with hearts as big as their egos, and hope springs eternal…
Sounds like a bad jokeReplyDelete
How many MSers can fit in a Hippo?
Just can't come up with a punch line.
Wow. Didn't know whether to cry or applaud--or both. Not as advanced as you in terms of my PPMS, but damn, can I ever relate to where you're coming from. Thank you for expressing it so well. I am still working full-time and have relatively few disabilities so far, but the discomfort, the pain, the anxiety, the aggravation associated with this disease really cloud my world view sometimes. Thanks for helping me keep some perspective. More power to you. You are pretty amazing and your writing helps keep me sane.ReplyDelete
I'm slipping down the progression slope and your words, "Time is fleeting, and we don't get bonus days for time spent miserable, however justified that misery may be," made me shudder. You mean we don't get bonus days??? Now this REALLY sucks. ;)ReplyDelete
U are an inspiration to a lot of people!! Your world is so full of pain, yet you get up out of bed as much as you can every day and keep going..Well done and keep up the great work..ReplyDelete
I believe that when you say that you don't have words to express your toughs, what you don't really have is a good vocabulary. But now, as I'm reading your post over and over again, I just feel your (our) pain and your (our) strength. No more words to you, just my MS solidarity.ReplyDelete
In Zen they say "An inch of time is worth a foot of gold".ReplyDelete
Every entry I read, every photograph I see... You are the Po to my Grasshopper.ReplyDelete
Po: Do you hear the grasshopper which is at your feet?
Caine: Old man, how is it that you hear these things?
Po: Young man, how is it that you do not?
It's a bit late, but I just found your blog (linked from Rescuing Providence, which I reached from Burned-Out Medic). I just want to thank you for your posts. You are so articulate and expressive with words that I want to keep re-reading them. It's a rare talent and I treasure it when I find it. My own chronic diseases will kill me slowly, but so far they're not debilitating. Thank you for making me think at least a bit about what I have rather than what I haven't. I've added you to my short list of blogs to keep up with. -- AnneReplyDelete