One of the unexpected upsides of my being stricken with MS (or whatever the hell it is that I have) is that dealing with the disease has somehow cured me of many of the neuroses that dogged me when I was physically healthy.
Back then I was quite the neurotic, my psychological quirks and bugaboos manifesting themselves in manners great and small. Even as a child I was a world-class hypochondriac, constantly checking the whites of my eyes for signs of jaundice, always hyper vigilant for any suspicious lumps or bruising, once even convincing myself that I’d contracted leprosy – this after reading about the disease in the novel Papillion – and driving my mom so bonkers with my self-diagnosis that she finally took me to the pediatrician, who laughed out loud when I dramatically announced my dire conclusion. By the time I reached my teenage years, I considered myself lucky to have survived imaginary bouts with leukemia, stomach cancer, and several brain tumors. “Mom”, the 9 or 10-year-old me would plaintively wail on a regular basis, “I think I have a brain tumor!” After a while, her reply became well worn, but still comforting. “First you need a brain…” Yes, Mom was (and is) quite the cutup, and I was, of course, quite the delightful child.
Hypochondria was but one facet of the flea circus that bounced around inside my brain. I was riddled with all kinds of anxieties, ranging from the sublime to the ridiculous. Well into adulthood, the very thought of eating a big plate of pasta in a public place was enough to bring on a full-blown anxiety attack. Why? Damned if I know. Doesn’t everybody harbor a deep-seated fear of linguine in the dark recesses of their soul?
When I became sick for real and my disease started progressing, though, most of my neuroses abruptly faded and went “poof”. Suddenly I had something all too material to occupy my overactive synapses, and the starkly intractable nature of my illness served as a lens to focus my scattered eccentricities. Much of my previously misplaced psychic energies went towards diving headlong into learning as much as I could about the disease, and the rest were put in their place by my newfound sense of perspective, a toughened philosophy provided by the very tangible prospect of ever creeping paralysis, which cast a telling light on the relative insignificance of most of my old concerns, real or imagined.
Lately, though, I’ve started to recognize in myself a new set of psychological complexes, much quieter than my old kinks, but also much more insidious, a certain kind of crazy borne by the pressures of living a life filled with the stress of ever advancing physical ruin. Patients with relapsing remitting disease are undoubtedly faced with their own form of psychological perdition, never knowing when the disease might strike and what damage will be left behind when it does, a perpetual uncertainty that must engender its own particular form of dread. Those like myself, dealing with slow but never ceasing progressive disability, forced to watch the malady creep inch by inch, limb by limb, ability by ability, insatiable in its ugly war of attrition, must steel themselves against the psychic cost of watching oneself slowly disappear.
Given the undeniably awful realities of the situation, it’s a testament to the human spirit that we all aren’t stark raving lunatics, howling at the moon and cursing at ghosts. But just as the disease itself takes a physical toll, I suppose there must inevitably be an emotional price to be paid as well. Yes, I’m more psychologically stable now than I was before being stricken, definitely not prone to the fits of anxiety and freeform angst of old. Instead, of late I recognize in myself a sort of shrinking back from the world, a reticence to integrate with the land of “them”, the healthy and their buzzing realm of perpetual effortless motion, the narrative of their lives blessedly unbroken by the cutting blow of disease.
Despite my undying affection for friends and family, I find myself more and more inclined to avoid contact, phone calls left unreturned and invitations clumsily declined. Surely, some of this can be chalked up to the physical realities of my condition; I’m quite often literally too sick and tired to mount much of an effort. But the roots of my self-imposed solitude go beyond the physical, for as much as I can and do still enjoy the company of others, their very being and the untruncated lives they live serve to shine a spotlight on just how much I’ve lost, on the ever mounting toll this greedy beast has exacted. Being out in the world, by myself or with companions, is a double-edged sword. There is joy and wonder in droves out there, for sure, pleasures I can still appreciate and share, but my increasingly limited physical ability to partake of many of those joys and wonders brings with it an ache that burrows deep. The breathtaking ease with which the healthy dance on the stage of the world tantalizes and taunts, their antics a potential source of delight but increasingly one fraught with heart rending distress as well.
I find myself, despite my best efforts and better judgment, increasingly getting lost in the past, wishing that I could turn back the clock several decades for a second shot at it all. Given the time and opportunity to pick apart my old life as one might dissect the intricacies of a piece of enigmatic prose, the many mistakes made, the missed opportunities, the undeniable missteps of my long gone existence stand out in stark relief. Might a different choice here or there have put me on a path that would not have led to my being afflicted with this goddamned scourge? Live in the moment, I tell myself, stay in the now, embrace with gratitude all the good you still have, but the siren song of days long gone, faded times once so pregnant with possibility, penetrates my defenses like a laser guided bomb.
I think this troubling state of mind is symptomatic of an as yet unnamed psychological condition, a correlate to Post Traumatic Stress Disorder, commonly referred to as PTSD, the debilitating mental disorder that afflicts many who have experienced intense periods of stress, such as warriors, first responders, or victims of violent crime. Those of us with chronic debilitating illness don’t get to the point of being "post-traumatic", since our trauma is incessant and ongoing. So I propose a new psychological classification, Never-Ending Traumatic Stress Disorder, or NTSD. There's no doubt that along with the body being caught in the vise of an unrelenting foe, the mind is trapped as well. How can there not be a psychological toll exacted after being subjected to physical insult after physical insult, indignity after indignity, the slowly maddening drip, drip, drip of accumulating disability? I’ve watched helplessly as the disease has hacked away at not only me but many of my MS friends as well, my heart breaking for their losses as well as my own. Suffice it to say, I am not amused.
But then again, at times I am amused. Though admitting it might be considered a heresy, there are aspects of this experience that have been profoundly positive. Is it a sacrilege to say that I love not working? My forced “retirement” has given me a freedom I haven’t tasted since early childhood, a total liberty to do what I want, when I want, and how I want, albeit within the confines of my increasingly limited physicality. It’s allowed me free reign to explore interests and predilections that had too often been sacrificed to the workaday world. My days can be filled with music and movies, writing and photography, daydreams and online investigations for as long as my body allows. I can sleep when I’m tired, eat when I’m hungry, and, through the magic of long term disability insurance, get paid for it all.
Is it too taboo for me to admit that driving my wheelchair through New York City is a total blast? Whizzing past pedestrians, scooting across wide boulevards and narrow streets, the chair has proven to be the best mode of urban transportation I’ve ever experienced. Truth be told, if miraculously cured tomorrow I’d be tempted to keep the damn thing, as it makes getting from point A to point B in this congested metropolis not only efficient but fun, and sometimes even an adventure. Just today, in order to get to a doctor’s appointment, I took the contraption out in the middle of a snowstorm, despite the concerns of loved ones and even the doctor’s staff, who called to warn me of the treacherous conditions. Yes, the 10 block journey was a little bit hairy, especially on my return trip, as the chair skidded and swerved through the slippery white stuff accumulating on the messy city streets, but it was as close as I’ve come in years to replicating that old feeling of driving sports cars that I so loved in days gone by. It was good to have that adrenaline pumping once again, reawakening senses that I was afraid had atrophied along with my wasted right arm.
Through the wonders of the Internet, on MS forums and this blog in particular, I’ve met some wonderful people, both online and in person. I’ve learned more about compassion and empathy, community and comradeship, and the power of kindness and understanding than I ever would have had I not been walloped by our shared enemy. In fact, given the hard-fought wisdom gained and the new perspective achieved, if a cure were to suddenly be forthcoming this experience, as harrowing as it has been, might just qualify as a net positive.
But let’s be real, though advances have been made, MS, particularly its progressive form, continues to have the medical wizards flummoxed, the cause of all forms of the disease still cloaked in mystery. There is reason for hope, as research is beginning to offer up tantalizing clues, and the promise of cutting-edge therapies such as stem cells hangs on the horizon. Folks with RRMS now have treatments that can dramatically improve their quality of life, and might, just might, slow down the progression of the disease. Still, despite whatever positives can be snatched from the muck of the disease, the psychological grind of days imbued with illness and all its trappings must inevitably exact a price. Perhaps by simply recognizing this certain kind of crazy, this Never-Ending Stress Disorder, one can take the first steps in learning to, if not vanquish it, then at least keep it from getting the upper hand.
He says, while howling at the moon and cursing at ghosts…
Excellent, as always. Wishing I had something comforting to say, but words fail me. So I'll just note that I, too, was a raving hypochondriac with more types of cancer than you can shake a stick at -- and then I got MS. Okay, I'm still a hypochondriac (waiting for my neurologist to one day say, "Oops! My bad! It's not MS...it's ALS! Sorry!"), but I do have less time and inclination to focus on such dread scenarios. It's not easy, but I'm trying to, yeah, live in the now.
ReplyDeletePeace.
I too was almost obsessed with the fact that I might have ALS rather than MS when I was going through the diagnostic process. As I did more research into ALS, I realized it was unlikely that I had the disease. Patients with ALS typically don't have sensory symptoms, or urinary urgency/frequency, both of which I developed fairly early on. Also, after several years I realized if I had ALS I would most likely be dead by now. I wouldn't really characterize that concern is hypochondria, since you do have a disease that shares many similarities with ALS, and MS is so damn hard to diagnose. Seems more like a reasonable concern to me.
DeleteKeep trying to live in the now. As you say, it's not easy, but as with any exercise the more you do it the easier it gets…
i find myself in social groups, dinner gatherings, etc., and having to bite my tongue when people start moaning about how hard it is to get to the gym, or yoga class, how their arm was so achey after shoveling the snow, etc. i used to go to the gym almost every day, and loved it. i would almost kill to have that option back. if i chimed in and described every ache and pain, i'd never get invited anyplace. and i don't get to experience the pleasure of XC skiing, just the exhaustion that feels like i've been skiing all day, when i've only just woken up. AND, visiting friends in their inaccessible or barely accessible homes is rarely fun. goes along with the "how are you?" dilemma - do i just grin and keep my trap shut, or assume they really want to know and tell them? thanks for helping to keep my mind alive!
ReplyDeleteYes, in addition to trying not to bite my tongue, I also have to try not to slap myself in the head at the sheer density of people who complain about their minor ailments to me while I'm sitting in a wheelchair. Then again, it's kind of funny, and just proves what I've known all my life, that, in general, people are idiots. Myself included, of course… In some way the aforementioned density is kind of comforting, as knowing that most people are so completely self obsessed makes me realize there is no reason to be self-conscious about my disabilities. Most people take note for a second or two, and then move on to worrying about their bad hair day… Again, I do not exempt myself from this condemnation…
DeleteUntil now, I've never wished I was ready for a wheelchair, and not just any wheelchair, but an easy-rider type power machine to take me downtown! I certainly can't walk there in spite of living very nearby but I'll stop whining about it and wait my turn...
ReplyDeleteIf you have to have PPMS, it's good to still have a sharp brain and a talent for writing. Your million plus readers can't help but be a little bit glad that not working and this wretched disease have helped you become Wheelchair Kamikaze.
I dreaded getting the wheelchair even as it was being delivered, but that dread quickly faded the first time I took the thing out onto the streets and realized that my world had just expanded exponentially. If you do get a wheelchair, try to get one that's good and fast, and don't let the wheelchair vendor try to make you settle for one of the slowpoke 3 mph models. If you have to be in a wheelchair, might as well be in one that you can do some damage with…
DeleteThanks for your kind words…
Again, you've gotten into my brain and explained what's going on with my psyche much better than I ever could myself. Never-ending Stress Disorder. PERFECT! ~ sigh ~ Though I didn't experience hypochondria or other such anxieties in youth, I, too, am more psychologically stable now than I was before being stricken. Maybe it's facing the cold, hard truth of continuing decline, what that means and how to deal with it, but maybe it's just getting older and wiser. Stability plus a "certain kind of crazy". Yep. That about sums it up. Socializing had always been my favorite form of entertainment. And when I force myself to make the effort to socialize now I do usually enjoy myself but more and more it comes with resentment that not only subtracts from the enjoyment but makes me feel bad about myself for feeling it! Ugh. Did I call myself emotionally stable? Ha! Thanks, Marc, for writing your blog. I think there are fewer ghosts getting yelled at because of it.
ReplyDeleteThanks, for your comments, Unruly… Yes, that social resentment we experience does detract from the enjoyment we might get from social interactions, and also does make us feel bad about ourselves for feeling it. Wonderful, a double whammy. Guess we can add that to the list of symptoms of NTSD.
DeleteYou have such a special way of saying exactly how each of us is feeling, Marc. You always strike a chord, and you especially did today. I continue to smart when my "friends" complain that they can only walk a mile, can't go for the hikes they'd like etc. As much as we cope, or seem to, our ongoing losses are enormous. There is no denying it, and sometimes it hurts....bad. Thank you for being there for us and putting our thoughts into words so skillfully.
ReplyDeleteThanks for your generous words. I think it's amazing how well most of us cope, given the gravity of our losses. I think it helps to at least occasionally acknowledge the hurt, maybe even more than occasionally. Just so long as you don't wallow, but really, I think the only way to stop the hurt would be to be immersed in a bath of mental Novocain. And even that would only be temporary… Still, we have to power through the pain, because, well, as long as we are on the green side of the grass, there is still life to be lived… Or something like that…
DeleteAh Marc, you make me laugh, you make me cry.
ReplyDeletekicker
ditto
DeleteHey, that sounds like the beginnings of a nursery rhyme. Marc, you make me laugh, you make me cry, I want to punch you in the eye…
DeleteI do not like green eggs and ham, I do not like them Sam I am… Actually, there's a place here in the city that makes what they call green and white eggs, scrambled eggs with chives and cream cheese. They are scrumptious. So green eggs are okay in my book.
Thank-you so much for sharing. I am unruly Julie's husband and caregiver, and have watched it happen up close.
ReplyDeleteBruce, kudos to you for being a husband and caregiver. I think the caregivers are the real heroes, we patients have no choice in the matter, but you guys stick around voluntarily. Thanks.
DeleteProducer, Director S,
ReplyDeleteAs you did in the past, you still do to this day...make me smile at the beauty of who you were, are, and will be.
Trudy
Trudy! So good to see your name and your picture, even if it is itsy-bitsy. Do you know that I've told many people about you, and the tremendously positive impact you had on my life? Probably not, because I've never told you. But now I have, so there. We must get in touch…
DeleteFantastic! Thank you.!!
ReplyDeleteThank you! And you're very welcome…
DeleteIt is kind of a relief sometimes to leave some habits behind. Do miss the able body tho....
ReplyDeleteI completely agree, on both counts. Do wish I could revisit some of the habits I was forced to leave behind, though. Such as getting good and hammered every now and then. These days, the aftereffects of just too much to bear… I guess that goes with missing the able-body, though…
DeleteAs usual this was thoughtful and inspiring. I especially like/identify with your expression "watching oneself slowly disappear". I've often described it as 'my relentlessly shrinking life', so obviously it isn't just me. And though I continue to work, albeit at a reduced level (I'm a 'researcher/educator' who is now only 'educator') I also identify with the guilty pleasure of disability-enforced leisure time. Finally, I appreciated your invention of 'NTSD' - I think it should be added to the roster of mental health disorders.
ReplyDeleteI don't know why reading about myself thru someone else's accounts gives me such satisfaction - as though I needed vindication. Maybe I'm just insecure. Whatever the reason, though, at some level it certainly comes back to your ability to express the complex feelings of a human being living under difficult circumstances. Stay strong.
Thanks, Zev. Not to belittle the satisfaction you feel in reading about yourself through someone else's account, but that might just fit into the category of "misery loves company". Nothing wrong with that, really, as it's comforting to know that we are not alone in the struggle. Just knowing that others share the emotions seems to lift the burden a little bit.
DeleteSo sorry to hear about your relentlessly shrinking life, it's a phenomenon best not experienced firsthand. And I'm kind of surprised that NTSD isn't on the roster of mental health disorders. Some curious shrink out there could probably make a name for themselves by cataloging what goes on in the minds of those afflicted with chronic disabling diseases.
I am waiting for the wheels of healthcare, wheelchair, and insurance providers to do their jobs and get me my very much needed Quantum Q6 Edge. I can be satisfied with a lower speed because I live in the laid back Pacific Northwest (hah). Actually, this model was the only one I tried, and it fits my main criterion of working in my very small house. My manual chair doesn't. For that reason alone I suspect Medicare will approve it. All this scooting around while sitting in my walker limits me to the back un-carpeted half of my house; it also stops me at my back door! I need to start making more phone calls, now that all the holidays are over, and encourage those letters to be written.
ReplyDeleteI, too, have been dreaming of years gone by. Better years, even with MS. Years in a wheelchair, with a bus pass, and the strength to get myself nearly anywhere I wanted to go. I got out more then than later, when in remission, I was walking.
Ugh, the Interminable twists and turns of dealing with healthcare, wheelchair, and insurance providers. I understand the quantum Q6 is a good machine, and with a top speed of 5 mph you'll be able to go almost twice as fast as most people walk. While you are dealing with all of the assorted providers, try to see if you can get approved for the high-speed motor package, which will up the speed to 6 mph. Worst thing that happens is they'll say no.
DeleteI hope you get your new chair soon, and that all the necessary parties play together nicely. It's no fun being stuck in the house. Though my range now is more limited than when I first got my chair, due to the "progressive" part of having a progressive disease, the freedom provided by the chair is beyond value…
"Never-Ending Traumatic Stress Disorder, or NTSD" Brilliant. Even beats the term crippling paralysis. And, as I have said elsewhere:
ReplyDeleteI can be grateful
for gifts this challenge gave me
and still hate MS.
Oh, heck, I meant creeping paralysis.
DeleteSo true, we can be grateful for the unexpected (and often unspoken) positives associated with our predicament, while still despising the disease that bestowed these "gifts" upon us.
DeleteBTW, I didn't coin the term creeping paralysis. That's actually what the medical folks called the disease way back when, before Multiple Sclerosis became part of the lexicon…
Marc I am a neurologist near Cleveland Ohio. I will have to say that your post are the best resource I have ever seen for my patients with MS. You have truly helped many patients of mine, who I have follow your site, all of whom have found your post to be very informative and extremely well written. I do have a similar patient to you who has gone down the same pathway. This patient has 3 lesions that have been unchanged for > than 15 years despite profound progression. I was looking at his MRI's, as I have done quite frequently, and when I compared his 1st MRI ( very poor quality) to his most recent I did notice that after 15 years again only 3 lesions. What I did notice though, which no one had mentioned is that the brain was actually getting smaller. Rather than truly demyelinating he is experiencing axon loss. In a disease that is based on demyelination in its name, we often forget that axon loss is also a part of this process. I am looking into seeing if on his next scan, and subsequent imaging to this ,we can start doing brain volume averaging. This would confirm the suspicion that some forms of PPMS I do feel are not demyelinating but more axon loss. What does this mean? I feel that in these patients we cannot see the forest for the trees. You may be progressing,, but not with demyelination, but truly axon loss and this is often missed by most neurologist and neuroradiologist alike. See if one of your next scans can be done with someone who is able to perform this on your scans and even see if it can be done on one of your older ones in comparison with your most recent. I hope this may help and if not please keep up the posts. They are an inspiration to doctors an patients alike.
ReplyDeleteThank you so much for your input. It's gratifying to know that my posts hope your patients.
DeleteI am aware that brain volume loss, or atrophy, can be a component of the disease, but I'm not sure if brain volume averaging has ever been performed on any of my scans. I'll definitely ask my neurologist about this. One more stone to look under…
Thanks again for your comments, they are extraordinarily appreciated…
Since, it seems like I have very open minded people here. I would like to ask a question. Has anyone ever looked at PANDA diease as the start of MS?
DeleteMarc you are such a breath of fresh air.
ReplyDeleteDon't need to waffle and say any more than that. Your blogs make me smile, despite this bastard of a disease.
Hugs from Australia.
Thank you, Liisa. Glad I could make you smile. That makes me smile…
DeleteYou're right Marc, the wonderful people who've come into my life in the last couple of years make a big difference in every way.
ReplyDeleteJudith's comment hit it.
Best,
Barry
Mark my words! Uh, Marc your words!
ReplyDeleteUh, your words my unspoken feelings my thanks
for putting in such a striking way.
Howling together cursing along your side.
Suzanne xxx
You have such a way with words. I used to write regularly and now find myself fearing that a once inspirational Blog will turn into a daily rant of self-pity!
ReplyDeleteI find myself so envious of those with room for hypochondria/irrational fears in their lives. what I would not give to fear flying or bad guys or the dark instead of my own body! In the meantime, I am trying to embrace the mantra one day at a time, but sometimes it is just so hard to fully enjoy the "now when my bony butt is sore from sitting in this chair all day long :-)
Thank you for expressing things that are sometimes too sad to write. And for expressing them with levity and grace that makes them accessible to all.
I keep coming back here...oddly comforted by your raw honesty and sharp wit. You get right to the heart of things and I find myself nodding yes, laughing or crying a bit. It's nice to be where it's real. My father is shedding neurosis, has developed a comforting ease, demonstrates a form of grace and humor throughout this I never thought possible...while the physical losses mount. PPMS? Lyme? Who knows. But sorting through the questions is much easier with regular breaks to read your posts. Thank you Marc. I hope that in those moments where you prefer your solitude, that you know how much comfort you bring to strangers.
ReplyDelete