Image by Joe Thorn via Flickr
I've always been a night person; left to my druthers, I'd happily keep the hours of Nosferatu. Back in my working days, having to be dressed and in the office by the ungodly hours of 8:30 AM or 9 AM was monstrously inhumane. My brain didn't start functioning until after noon, and about all I could do in the hours preceding midday was to try my best to simulate the actions of a fully conscious person, walking around like Mr. Spock in that episode of Star Trek where aliens steal his brain.
Later in my career, when I went to work in the music industry, many of my coworkers were of the same ilk, and the production studios where I toiled were generally devoid of human activity before 10 AM. I had no problem working late to get the job done, so long as I wasn't required to show up at the crack of dawn (and my definition of dawn includes the hours between 5 and 10:30 AM). The night was when I was in my element, and this still holds true. Most of my blog posting, photoshopping, and video editing takes place well after the sun has dipped below the horizon. Though this keeps me out of step with most of the rest of the world, it is what it is, I am by nature a denizen of the dark. I even met my wife at 4:30 AM.
Lately, though, the nighttime hours have been troublesome. Not so much the nighttime hours, per se, but the hours after I've gone to bed, when I'm left without the distractions which serve to keep me from focusing on my illness and all the damage it has done. When not under the covers, and surrounded by my toys and other people, I'm usually quite able to keep the wolves of the despair at bay. Through mindful choices and a diligent channeling of my attentions and emotions, the psychological ravages of my multiple sclerosis are held at arms length, and though they are never beyond my consciousness, I refuse them the ability to cloud my minute to minute existence with anguish. I recognize my situation, and determine to live my life the best I can despite of it. Though this works better some days than others, in general I'm able to keep my head well above the water.
Once the lights go down, though, and all is still, it is a far more difficult task to corral the thoughts that conspire to mangle my peace of mind. I've always been an insomniac, as a child I remember lying awake for hours, even as the light of a new day gathered in my bedroom windows. Now, with my wife sleeping gently beside me, the psychological barriers I carefully maintain during the day start to crack, and the thought train gathers a wicked momentum and threatens to break loose from its tracks. The void that is left by the momentary lapse of emotional diligence is quickly filled with the whys and why nots, the what ifs and the if onlys.
With my head on my pillow, the Torment Express picks up steam and careens through the furthest corners of my mind. How did I get this fracking disease and could I have done anything to stop it? Is this retribution for some forgotten sin, or am I a merely the victim of a simple but cruel twist of fate? If I'd made different choices, if I'd only caught that missed train, or had stayed in Boston, or somehow stayed true to my youthful dreams and ambitions, could I somehow have avoided this ghastly withering, this slowly watching myself lose me inch by inch and limb by limb?
Where would I be this very moment had I not taken ill? That career that I'd built so steadily, despite my struggles with selling out and my battles with the twin fears of success and failure, only to have the mountain crumble beneath me as I approached the summit of real triumph, where might that have led me? At the very precipice of the next level, I was pushed to the sidelines and forced to watch as others scrambled over the foundations I had built.
My God, the time I wasted, the days and weeks and months and years when I was healthy and had the world at my feet, but kept myself bound and gagged with fears and insecurities, bad habits and stupidity, with envy and jealousy and pride and conceit, turning the infinite possibilities of each and every glorious day into a self-imposed prison of preconceptions and misguided expectations and the absolute folly of self-righteous suffering. That time so precious, so delicate, so priceless, time that slipped away without my making even the slightest effort to catch it, blind to the approaching maelstrom that crouched waiting, just beyond the bend. All of the irreplaceable people and experiences and moments that I took for granted, which no amount of wishing or hoping or wailing can ever recover. Gone for good, consigned only to that box marked "memories"...
And what of all the treatments I've undergone, and all of the doctors I've seen, every one of which has failed me completely, and some of which have left me worse off than when I began? How much damage have they done that has yet to reveal itself, these powerful poisons that I've taken even whose manufacturers cannot say exactly what they do? Is there some missing piece to my puzzle, some missed clue or overlooked anomaly that might decipher this disease that has left some of the best minds in medicine puzzled? Is it too late to alter the ugly endpoint of this disease, or might I still have a chance, a tiny chance at finding my way through this thing, to the other side?
I toss and turn with the force of the thoughts ricocheting around inside my skull. Finally, I silently scream "enough", and slowly stretch my spastic limbs, force my aching joints into motion, and clumsily stumble and drag myself to the bathroom, not so much due to physical need but just a break the inner cycle. Back in bed I grab my smartphone and read the opinion pieces from tomorrow's New York Times. As insane and volatile as the outside world may be, it's a powder puff compared to what lies within. Finally, eyes heavy, I surrender to sleep.
When tomorrow comes, I'll take inventory of my physical status, strap on my armor, and begin the battle anew. Inner demons back in their cages, I'll do my best to make the most of the day, imposing some measure of contentment upon myself, because really, there's nothing else to do...
Yes, yes, yes, and so wonderfully put.ReplyDelete
You still have so much to contribute; do not despair - or at least that's what people tell me when I get like you describe above - it's a band-aid, as they do not know what we were before, our hopes and dreams and wishes and aspirations. I'd offer you platitudes, like telling you your writing inspires me, and so many others, that your wheelchair travels give me a sense of indecent glee thinking about my own wheelchair future, that you warm my heart with your sharing. All of this is true. But what I offer most is a quiet, across the miles hand on your back in the middles of the nights, saying, yes, yes, I understand, and I'm here, way up in Canada, cheering for you.
Across the state to the Lake Erie shore, I think about my dreams that I watched go up in flames, and about my future, which most likely will include a wheelchair, and I too am cheering you on.ReplyDelete
I think of the hope of CCSVI, and even though my neurologist is going to recommend me for the first round of trials, if the numbers show that most MS patients have constricted veins, it is not enough. I know that it is not a cure, but I push on.
and until MS has made me blind and/or paralized in all of my limbs, i will continue to push on.
My heart aches for you...and for me, who is a mirror of you. I don't know what to do any longer. My boyfriend's brother's wife put a plastic bag over her head and committed suicide after becoming bed ridden with MS. I don't want to feel the way that she did but do understand the loss of self that seems to come with this disease. You have been a true inspiration to so many of us. You are not our savior but you do give hope, laughter, and a diversion to our day. Please rest easy in the knowledge that you have made a difference in our lives.ReplyDelete
The time you wasted? Nothing was wasted. Every moment you lived was what led to being who you are today: an educator, an entertainer, an artist, an inspiration.ReplyDelete
You never cease to amaze me, my friend. Keep strong. You are worth it and we need you.
I'm echoing Marie. The first thoughts I had as I read this post were "But Marc, don't you see that what you did as much as what you didn't do have led you to become who you are today?"ReplyDelete
I'm not trying to cheer you up or say do this and the MonSters won't visit at night. They visit me too. My only reprieve some days is the knowledge that when I awaken, I can keep them at bay until the next night comes.
Dabble-thanks for understanding, and also for the virtual pat on the back. It's gratifying that I can inspire, but sometimes I think it's important to let the dark side have the stage...ReplyDelete
pfrox9-you're damn right you're going to keep pushing on, you're young and have so much to live for. Whether or not CCSVI turns out to be all that we hope it is, advances in MS therapies will likely keep the possibility of real disability far in your future. Live your life to its fullest, appreciate the beauty of existence, and fight this thing like a warrior I know you are.
Carol-thanks for the kind words, and it is indeed gratifying to know that somehow I've made a difference to somebody. In many ways, that's the most anybody could ever ask for...
Marie-it's very true that we are the product of everything that's come before us. It's really a matter of acceptance, sometimes a gap between what you wanted and what you received seems too great, but of course we bridge it, each and every day. Thanks for being a friend.
Weeble-I know you battle some particularly nasty demons, and my respect for you is immense. The fact that you can laugh through it all is a testament to your spirit. Regardless of what the future holds, in many ways we all have already beaten MS.
I cant stop crying, because my child has MS. I wish I could take the MS and give my own health in exchange.ReplyDelete
I am haunted by very similar questions. How did he get this disease? Could I have done anything to stop it? Is this retribution for some forgotten sin? If I'd made different choices, if I'd stayed on in ______, if our home environment had been different, ... and many more