The progression of disability brought about by progressive MS can be likened to the circumstance of a bucket placed under a leaky roof, slowly filling with water. The level of water rises almost imperceptibly with each drip; slowly but surely, however, the bucket reaches the point at which it can hold no more water, and the next drop causes it to overflow. That last drop, which sends liquid cascading down the sides of the bucket and onto the floor, is a tipping point, the moment when what was once indiscernible suddenly becomes impossible to ignore, and adjustments must be made.
Much like the water in that bucket, the level of disability in a patient suffering from progressive MS proceeds ever so slowly, invisible on a day-to-day basis, sometimes barely noticeable even week to week or month to month. This gradual progression can lull one into a false sense of security, fostering the desperate hope that maybe this is as bad as things will get. And then it happens, a moment when the bucket overflows and the disease gets its jaws around you and shakes your world like a terrier delivering the coup de grace to some unfortunate rodent, and the patient is left to process this new normal and try to make the changes necessitated by it.
I've reached a number of such tipping points along the path down which my disease has led me: The time at work when my "dropped foot" caught on the hallway carpet and sent me into a stumbling, flailing, long-distance attempt to keep my balance as I lurched forward, almost landing in the arms of none other than Tony Bennett (I worked in one of the major audio/video production houses here in NYC), an incident that convinced me of the need to get my first ankle brace, which I'd been vehemently resisting up to that point; the moment when it became clear that simply getting to work was taking so much out of me that it was negatively impacting my health, and I applied for disability; the day I realized that I could not walk anywhere, even in my apartment, without holding onto the furniture, a wall, a doorknob, or some other stable object, and I caved and ordered my first cane; another day some year or so after that, when, at my wife's urging, I finally admitted that even with a cane I could not make it more than about 100 feet, and I reluctantly started the process to purchase my wheelchair, an act that at one point had been almost unimaginable, the stuff of nightmares.
Each of these incidents was preceded by a period of relative quiet, when I went about my usual business, however restricted that business might be. As my right arm and leg weakened, my left side took up the slack, and even though I am a born righty I learned to use my left side rather adeptly, even training myself to be a passable lefthanded chopstick user, a very important skill for a fan of all foods Asian. In retrospect, I did notice some of the incremental changes as they were happening, and sometimes even voiced concerns about them, but since these tiny deficits didn't force the issue, I could halfheartedly convince myself that I was just having a bad day, or maybe I'd slept funny, or perhaps I'd caught a little virus or cold that was weakening my system. Inevitably, though, the time came when the bucket overflowed, and some new tools, both emotional and mechanical, were needed to clean up the mess.
I recently experienced yet another tipping point, one that I'll admit has been more than a little unnerving. One of my favorite wheelchair journeys has been a trip to Central Park's Conservatory Gardens (click here), which are located about as far away from my apartment as you can get in the wide expanses of the Park, requiring a round-trip journey of about 8 miles. The gardens are a treasure, and a fair number of the photos included in my "Wheelchair Kamikaze Photo Gallery" were taken there.
Because my wheelchair can travel quite fast, 8.5 mph, I was able to cover the distance from my building to the gardens in about 25 minutes, and indeed the chair has allowed me to explore parts of the Park that many of my walking friends have never accessed. I took great pleasure in my jaunts to the gardens, not only because of the beauty of the destination, but also because, in a sense, they showed me and my chair to be more able than disabled, at least in certain circumstances, and actually earned the envy of some of my able-bodied friends and family.
I had last visited the gardens sometime in late October or early November 2011, when they were ablaze in a natural fireworks show of multicolored chrysanthemums and autumn yellows, reds, and oranges, the chill in the fall air making my journey there all the more bracing. Last month I attempted to make my first trip of 2012 to the gardens, eagerly anticipating the springtime visual fiesta that was sure to await me and my camera. While traveling full throttle through the Park, using my "good" left arm and hand to manipulate the wheelchair's controller, I noticed a strange sluggishness in my fingers and hand. When I arrived at the gardens, I took out my camera and set it up on the tripod mounted to the arm of my wheelchair, and started taking some photos, but for the first time experienced some real difficulty manipulating the controls of the camera. Still, choosing willful ignorance, I forged ahead, snapping pictures and scooting around the beautifully landscaped setting.
I soon needed to change lenses, and that's when the real trouble started. I had an unusually hard time taking off the lens that was already mounted to the camera, and in doing so dropped the lens, which luckily landed softly in my lap. I grabbed for the lens as it fell from my hand, though, and as I did so my wedding ring flew off of my finger, bounced off the chair, and landed deep in some bushes or flower beds. I spent the next 45 minutes using my cane to shake the shrubberies and gingerly poke around the flowers, but to no avail. Hard as I looked, I just couldn't find the ring. As daylight quickly faded, my heart sinking, I finally had to admit that the ring was lost. Yes, a wedding ring is only an object, and even though it had tremendous sentimental value, it can be replaced. At that moment, though, that ring represented so many other losses that my wife and I have suffered through the years courtesy of my disease. I was diagnosed only one year after Karen and I were married.
Deeply saddened and cursing the universe, I gave up my search and started the trek home. My left arm and hand were growing less responsive with each passing minute, making it difficult to control the wheelchair. When I finally exited the park and headed down the city streets to my apartment building, my hand decided all on its own that it didn't like the direction I was traveling, and I swerved right into the side of a building, hitting it with a clattering thunk. Luckily, no damage was done to either the chair or my body, but the message was unmistakably clear: my left side is falling victim to the disease, just as my right side did, and the ticking clock that I share with all who suffer from progressively disabling disease grew exponentially louder.
I won't pretend that I handled this incident with bravery or grace or heroism. It shook me to the core, and was the source of heart wrenching dismay and a good long bout of soul-searching. This time there is no magical piece of medical equipment to help me adapt to the situation, my new normal can only be countered with attitude and acceptance. In reality, my situation the day before the incident and the day after hadn't really changed, only my awareness of the circumstances were different. The enemy known is better than the enemy unknown, and at least I can now say with certainty that my left side is weakening, a fact that had been unable to be confirmed by previous physical testing. On some level, I've known this reality for several months, regardless of subjective test results. Nobody knows our bodies better than ourselves, and we notice incremental deficits far in advance of them being obvious to outside observers.
I now have to resign myself to the fact that my wheelchair trips can no longer be open-ended, restricted only by the juice left in the chair's batteries. I have to be aware of the limited functionality in my left side, which gets worse as the day wears on, and allow myself to rest when necessary. My left leg is also noticeably weaker, making it harder to compensate for my useless right side, so I'll need to be all the more vigilant when standing, taking a few steps, or showering, so that I don't tumble to the ground. This is the hard truth of the situation, and no amount of wishing, hoping, moping, bitching, complaining, cursing, or sulking is going to change that.
I will do my absolute best to operate within the confines of this new normal, and will not be defined by what I can't do but by what I still can. I might not be able to travel to the far reaches of Central Park, so instead I'll have to explore the many acres closer to home, some of which I've overlooked because of my ability to travel far and wide. I won't stop taking photos, I'll just have to be more diligent about setting up the camera and manipulating its controls; perhaps this will lead to a more disciplined approach and some better photographs. I've also having issues with increased levels of MS fatigue, which can be just as disabling as weakened arms or legs, so I'll work with my body instead of fight against it, and understand that in my new normal "carpe diem" might sometimes mean spending a day or two doing nothing but catching up on missed movies or shows about ancient aliens on the History Channel.
I'll continue to vigorously pursue treatment options with the physicians working on my case, and will be an even louder self advocate than ever before. New treatment options seem to constantly present themselves, and I'm currently trying two or three outside the box approaches that may be longshots, but every so often longshots come in, and when they do they bring with them great rewards. Most of all, though, I will focus on each passing moment, occupying it consciously and as fully as possible. The only thing that can be done about past regrets is to learn from them in order to live a more fulfilling present. The future is a great unknown; some people who are perfectly healthy today will be dead tomorrow, and if life has taught me anything it's that our paths are made up of nothing but blind curves. I'll practice kindness to others and, perhaps more importantly, to myself.
I know for sure that there will be more tipping points in the future, but I also know that they don't necessarily have to be negative ones. With due diligence and some good luck, perhaps my next tipping point will be a positive, liberating rather than confining, and my next new normal will be a return to an old normal. Tomorrow's story has yet to be written, and yesterday's setback may require adjustments, but does not necessarily have to be a harbinger of things to come.
Time to get a new bucket, and to keep on trying to figure out how to fix that damned leak.
Love your spirit and am enriched by your words. Thank you from my heart in northern California to yours in NYC.ReplyDelete
You're very welcome, thanks for your kind words and your contribution to this blog.Delete
Your post reminds me of one of your earlier posts.."I am that guy in the wheelchair".ReplyDelete
We are all going...some earlier than others. I always felt that I am going down a ladder. First step..cane. next..scooter...next wheelchair...You are right though...The future is unknown..not sure what the next step will be...but one thing is for sure..I will be going, and it will be down.
Regarding the wheelchair control, if you put an extension on the joystick, the extra leverage may help you control it more easily...
On another note..If you are interested...I'll come to NYC on the LIRR next week if you wish, and help you look for your wedding band.
Thanks so much for your offer to come and help me look for my ring, but at this point I've given it up for lost. I'm sure one of the maintenance workers at the gardens must have come across it while tending to the meticulously groomed landscaping. Hey, that gives me an idea, maybe they have a lost and found? I'll have to check that on Monday…Delete
I'll also have to look into the joystick extension, I've never heard of that. I'll happily accept any doodads that will make the tasks at hand easier.
Hoping that your next step won't necessarily be down. Not trying to be unrealistically optimistic, but if you don't have dreams you have nightmares… If only sheer force of will could make a difference, but I suppose if it could then all sorts of negatives would be avoided…
Holy sh...crap. I completely admire how you have been able to pull yourself up from this muck. Sure, I'm betting it is two steps forward, one step back when it comes to attitude (and MS)...when is it not? But you are an inspiration - the way you keep looking for answers and ways to adapt. I'm feeling ya - I've gone down the same way...only I'm not quite as far as you, yet. Whereas once stretching helped me immensely with the pain, now it no longer provides the relief.ReplyDelete
It is SO nice to read about someone with MS that plainly talks about their struggles...finding people writing about the later stages of their disease is quite difficult. Many newbies writing, not so many veterans. Where do they go? What is happening with them? So, thank you for continuing to bear your soul and travels.
Keep going, keep striving, keep living...you aren't doing it just for you, believe me. There is a whole train of us you are pulling.
First things first: please feel comfortable to curse to your hearts content on these pages. Shit Piss Fuck – all okay by me. The only words that are forbidden are racial/sexuality/gender slurs, along with a small handful of others that the vast majority find extremely offensive. Without "dirty" words it's sometimes impossible to quickly and succinctly expressed the proper emotion. A good "fuck" every now and then is a necessary thing, both physically and metaphorically…Delete
I so happy that I can the and inspiration, but realize too that you guys are inspirations to me. Writing this blog can be very therapeutic, and the response it has received has been astounding, heartening, and humbling.
As for where all the old MS veterans go, I fear it's not a very good place. As the disease progresses it starts eating up more and more time, and being sick can become a full-time job. I suspect many don't want to report bad news, it's human nature to trumpet triumphs but be silent on defeats. Also, the disease can progress to a place that makes it physically difficult to chronicle. A hard truth, but the truth nonetheless…
Hang tough, we're pulling for you.ReplyDelete
Thanks, your thoughts and well wishes make the hanging tough that much easier. When it comes down to it, we have two choices: give up or keep fighting. I'm certainly not ready to give up.Delete
As the old saying goes, when the going gets tough, the tough start drinking. Or something like that…
I agree with Sue. The progression of this disease is hard to describe and you do it so beautifully. It would make a great book along with your photos. I love to reread your articles and look at your photos. I feel less alone and inspired to persevere.Thanks!!ReplyDelete
Thanks, I'd love to be able to put out a book of my essays and photos. If any publishers out there reading this, I'm all ears. Being all ears might explain some of my disabilities; perhaps I don't need a neurologist but an ear nose and throat man…Delete
WK....after reading this post I felt as if you had written MY story! Ten yrs ago when I was DX, I attended an MS Support group mtg & I remember a gentleman there attempting to walk w/polio area wrist canes & thinking to myself "that'll never be me". Well here I am, that man, only I use a scooter 24/7 to get around; a chair is forthcoming. My left side is completely useless & I have noticed my right side getting weaker & weaker by the day. How long will I still have use of it? When it (my right side)goes like my left side did then what? I have to agree w/Sue W. in that too many MS sites/bloggers are painting a hugs & kisses, rainbow & unicorn picture for MS people when it isn't. People need to know what to expect so they can plan ahead whether it be to start looking at motorised devices or making structural chgs to their home. You write EXACTLY how it is, no sugar coating to it! I hope that someone finds your wedding band & returns it to you. Or you could do what my husband did which was have a wedding band tatoo'd on his ring finger! No need to worry about losing it! KiMReplyDelete
Kim, I had the exact same feeling when I first started going to my neurologist, sitting in the waiting room and looking at all the very disabled patients, convinced that would never be me. I guess that's a classic case of denial, but it served a purpose – keeping me from running out of the neurologists waiting room in hysterics, like a freshly spanked three-year-old.Delete
I must admit I have very little stomach for MS sites that try to paint the disease as some sort of blessing. MS sucks. You can't polish a turd. Sure, getting sick gave me a perspective on life that certainly has some value. However, this enlightenment wasn't by any means worth the cost, and I'd happily return to my previous state of blissful ignorance, thank you…
That said, life does go on, so might as well try to make the best of it. Today is the only today you are ever going to get, so it's best to spend it wisely, lest you have more regrets tomorrow…
Heart-rending post. I have the same problem -- PPMS with my right side disabled. I'm a few years behind you, so your experience is a preview of coming "attractions." You achieve the perfect balance between despair and optimism. Life is like that for everyone, but, sadly, we seem to be cast in the role of the person people look at then turn away from muttering "there but for the grace of God go I." Keep the faith -- this is our only life and you DO make a difference.ReplyDelete
Yes, I clearly remember times when I was the guy turning away from the site of some unfortunate soul and saying "there but for the grace of God go I". I guess somewhere along the line I fell out of grace. Hey, thems the breaks…Delete
Even when I was healthy, one of my good friends described me as the most optimistic pessimist he'd ever met. Strange mix, but it's helped me wade my way through the MS muck. It is incredible what we can adapt to.
As for my making a difference, the thought truly boggles my mind… Thanks for commenting, and for the mind boggle.
Marc, your journey has been scarily similar to mine. I've been in a p/chair fulltime for four years now likewise adjusting to a longer list of dys/non-function. You are truly an inspiration not despite the limitations and challenge of MS but because of them.ReplyDelete
I salute your bravery and indomitability.
Thank you, Steve. I salute you right back, as it sounds like you've got your share of bravery and spirit that has allowed you to make your way down this difficult road we've been forced to travel. As ugly as the disease is, the quiet bravery exhibited by those who suffer from it is breathtaking.Delete
Well darn it--that is not good at all. I am feeling more than just Minnesota grumpy for you. You don't need to be a hero right now--you can just be as stunned and/or dismayed and/or furious as you want. In good time I'm sure you'll be back to reveling in what you can(underlined) do if you aren't there already.ReplyDelete
We don't like you just because you have lead the way for so many of us--we like you because you are you. You are one of the few people whose thoughts, information, opinions and feelings I'll always want to hear, regardless of the production methodology: I'd want to know what you had to say even if you were croaking in Morse code.
I think we all feel honored that you have told us what is going on.
Daphne, if I was left croaking in Morse code all that would be deciphered would be a long list of the kind of expletives I mentioned in one of my replies above, including the words that I now consider off-limits. I'm afraid fortitude and bravery do have their limits.Delete
What's this about Minnesota grumpy? I've heard of Minnesota nice, and Minnesota Fats, so now I'll have to add "grumpy" to my list of Minnesota things. And here I thought we New Yorkers had the grumpy thing all to ourselves. I suppose Parisians are also notoriously grumpy, but they're just New Yorkers who happen to be French. And really, I've been to Paris, and I don't think either New Yorkers or Parisians deserve their grumpy reputations.
Upon reading your comment, all I could think of was Sally Field accepting her Oscar-"you like me, you really like me"…
Really, though, I do have my bad side. For instance, I hate Brussels Sprouts and I tend to mumble, two things that drive my wife to distraction…
'Grumpy old men' and 'Grumpier old men' movies perhaps? Set in MN.Delete
Nice post Marc! I've described my progression journey as "you don't have to be walking very fast to step off a cliff". One day (one more step) and off you go. Just like the Coyote, you might be able to hang out for awhile, but eventually...ReplyDelete
Steve, I love the cliff analogy. Terrific.Delete
Ultimately, sick or healthy, eventually everyone steps off that cliff. 100 years from now the world will be filled with all new people, and our daily struggles will be long forgotten. Sometimes it's important to remember how insignificant each of us really are in the grand scheme of things. Helps keep you from taking yourself too seriously…
Don't you dare give up on that ring! I'll come there and find it myself if I have to. Keep the faith...ReplyDelete
Thanks, Charlie. The ring is just the thing, though, and things can be replaced. Who knows, maybe 1000 years from now an archaeologist will dig up that ring, and for at least a moment think about who might have worn it…Delete
You inspire me, you comfort me, you give me company. I am so grateful to you for your candor and your way with language. I hope knowing you have such a devoted audience gives you some of the gift that we get from you. I'm sorry you had such a bad experience and I hope you find your wedding band. I do think it is kind of lovely and ironic that you lost it in a place that is so special to you. Think about getting some physical therapy to optimize the strength you still have in your left side. I think physical therapy is essential to making the most of what we've got left. Plus, I love the photography and selfishly want you to keep it up.ReplyDelete
Thank you for your lovely words, Bonnie. It is kind of lovely and ironic that the ring was lost in such a special place, would really be a shame to have lost it in some place with which I have no emotional connection.Delete
I completely agree with you about physical therapy, however, because my hip and shoulder joints were destroyed by avascular necrosis, a rare side effect of intravenous steroid use, attempting physical therapy usually leaves me in worse shape than before. In some ways, my disease course and the attempts to treat it have been a comedy of errors…
I do fully intend on continuing my photography, and I'm even going to post some of the photos I took during my traumatic trip to the gardens. Some of them turned out pretty well…
It's terrible to hear about your progression. I wish it weren't so.ReplyDelete
I wish it weren't so, too. But, at least I'm here to report on it. There is still plenty of people worse off than me, and plenty for who today was their last day on earth. It's all relative…Delete
Your inspiration to overcome everything life throws at you progressively travels overseas... just finished reading your article after my friend with MS in Slovakia had brought it to my attention. Keep fighting on daily basis, some kind of reward is awaiting for sure... not knowing what it is makes it worthwile and somewhat beautiful!ReplyDelete
It is absolutely remarkable how small the world is become thanks to the Internet. Who would've ever figured that something I wrote in my bedroom in New York City a few days ago would be read in Slovakia, and then passed along to someone who could instantly register a response to it. Amazing.Delete
Hoping you're right about an upcoming reward, for some reason I also suspect there are some better days ahead. Guess that's what keeps me turning over rocks and occasionally throwing them at people…
Your story and your writings are a constant source of inspiration. I know it may be terrible to tempt fate laughing at a progression of symptoms when I show every sign of heading down a similar path. Still, ever more often as I ponder and try new treatments and approaches, I hear goofy singing the song, "There's a Hole in My Bucket, Dear Liza Dear Liza." The endless search for a solution through a seemingly endless process of running in circles is a search in which I find I have to find the humor along the way to keep the streength to continue.ReplyDelete
Hey, laughter and a sense of humor about all this is essential. We are all just characters in a huge theater of the absurd. As I've said before, there's a reason that the Buddha is usually depicted smiling…Delete
Boobs. My recent left hand weakness became apparent when I was hooking my bra. At 50, braless is not an option.ReplyDelete
Thought I'd give you one more that you won't have to face: hooking bra clasps.
Ok, stop thinking about boobs.
Progression sucks. I am currently ignoring/denying/hiding a bad tremor in my left hand. Previously, my hands were not affected.ReplyDelete
I have a thought: Maybe you can get a student to act as a "photographer's assistant" and help you remove lens and carry some gear for you.
Hang in there!
Wow, I am so thankful that I came across your blog and have the privilege of engaging in the posts that you write. I originally was, shall I say, "coerced" into starting a blog about my own experiences, thoughts, research findings etc with regards to living with PPMS only recently, never realizing how valuable and even comforting (maybe it's because misery loves company I don't know) it has been to connect with others sharing their stories. Your ability to articulate and convey your journey with words that not only express either those similar to my own or as one replier noted, those things that lie ahead, is indeed a gift that I, for one, am grateful for. Thank you.ReplyDelete
I also lost my wedding ring, I was heartbroken for the same reason-more loss because of MS.
I also don't know what my actual dx is because the neurotics cannot seem to agree.
But, I did have the confidence to get back into photography despite the challenges and that was directly down to you.
I am grateful, thank you.