MS is a transformative disease, and the changes it brings can leave the afflicted feeling like some strange new breed, with the memories and inclinations of the old conflicting with the stark physical and emotional realities of the new. The disease progresses at different rates for different people. Some can remain quite active participants in healthy society for years or even decades, while others find themselves considerably disabled and their lives significantly impacted in a relatively short period of time. Whenever it occurs, when the patient is cleaved from the day-to-day existence they once took for granted, a sense of otherness can set in, as what had been a daily routine becomes anything but. Activities and actions that had once been accomplished with hardly a thought slowly become difficult and then impossible, and though the person going through these changes may be surrounded by well-intentioned friends and family who suffer their own emotional distress at the plight of their stricken loved one, the full emotional toll of mounting physical deficits can only be absorbed by one, the patient themselves.
Like the main character in Franz Kafka's novella "Metamorphosis", who wakes up one day to find himself transformed into a huge cockroach, patients experiencing progressing disability find themselves living through alarming change. Though this change doesn't occur overnight, as in Kafka's tale, it certainly can feel as if it comes on suddenly, and the physical transmutations taking place are inevitably accompanied by troublesome psychological companions. Nine years ago I was happily taking my pooch for a long brisk walk on a very cold winter’s day when I suddenly realized I was limping; fast forward to today and it's a treacherous and painful struggle to take 10 steps with cane gripped tightly in hand, and more often than not my sorry ass is planted firmly in the seat of a wheelchair. Nine years may sound like a substantial amount of time, but despite the innumerable trials and travails of the intervening years, it feels as if I took that long walk only yesterday. And though I've tried to handle my situation with as much grace, courage, and humor as I can muster, deep inside I cannot deny there exists a well contained but always present silent scream (click here to hear my silent scream).
Of course, it's of the utmost importance to stay connected with the world at large, regardless of your physical state. There is substantial danger in allowing the psychological tentacles of the disease to have their way, grabbing and dragging the emotional focus of the patient deep inside themselves. Concentrating on every new weakness, numbness, or deficit can cast a crippling spell, a self-perpetuating cauldron of compulsive anguish, whose only antidote is social interaction. The comforting give-and-take of a friendly conversation or the diversion of an outing whose sole purpose may simply be to lay eyes on other human beings can truly be a much needed balm for the soul, a reminder that though the body may be broken the spirit remains intact, and that the world is still filled with wonders big and small, even if they must sometimes be dug out from under a huge pile of crap.
Yes, human interaction is key, but the problem is that being sick takes up so much damn time. As levels of disability increase, so too does the time it takes to do almost everything. Whereas an impromptu get together with a friend for lunch may have once made for a happy couple of hours, for the disabled there is no such thing as impromptu. The simple act of getting dressed, which once was about as problematic as breathing, now presents hurdles and obstacles that require a preconceived tactical plan, especially in the colder months when such hobgoblins as sweaters, socks, coats, gloves, and scarves come into play. Depending on the patient, showering without assistance can be a daredevil high wire act or an absolute impossibility. Even if there has been advanced planning, after going through the effort of readying oneself for a guest appearance in the outside world, that day's allotment of energy may have just about been exhausted. The fatigue patients experience is not any kind of normal weariness, but an at times absolutely complete and debilitating exhaustion of mental and physical energy, which no amount of willpower can overcome. Many times, the only place I want to go after getting dressed is right back to bed.
Even the prospect of talking on the telephone can sometimes be daunting, especially to folks with whom you haven't communicated in a while. After "Hello" comes the inevitable "How are you?", a loaded question if ever there were one. It feels incredibly disingenuous to answer with a token "Oh, I'm okay", or "I'm hanging in there", but for sure the person on the other end of the line doesn't want or need to know the full dossier of your afflictions. Discussing the details of a well friends active life can sharpen focus on the deficiencies of your own, and despite honest attempts at sympathy, hearing of another's problems at times makes me want to shout "Hey, want to trade?" Shooting the breeze, sharing some laughs, and talking about anything other than illness and medicine can be incredibly uplifting, but as much joy as talking to old friends can bring, at times the prospect is overwhelming, the effort required tapping deep into the paucity of energy that is a constant companion. I must admit I have an embarrassing number of calls from dear friends for whom I have deep fondness that I've left unreturned for far too long.
Like many patients, I'm blessed with a social situation (in my case, a wonderful wife and caring family and friends) that keeps my periods of solitude, which I've come to quite appreciate, from morphing into isolation. Despite mounting physical difficulties, with effort I'm still able to get out and about on my own, to pursue my photography or just to break a bout of cabin fever. Still, as the progression of my disease continues, such outings require increasing effort, and I find I value time bereft of social responsibilities quite highly, hours spent meeting nobody's expectations but my own. I do know of many patients, though, who do suffer from isolation, whose lives are plagued not only by physical illness but by soul wracking loneliness, and to them my heart goes out. The Internet, through chat rooms and forums, offers opportunity to connect with others, if only in a virtual sense, but I know from experience that virtual friendships can indeed develop and deepen into surprisingly multifaceted relationships.
One is the loneliest number, but one can also be a source of solace as well. Persevering through chronic illness is a complicated affair, and navigating its hills and valleys, even with the solace of companions, is in many ways a solitary matter. Though others may help buffer the blows, ultimately each patient's experience is unique, and the mechanisms for coping theirs alone. Solitude and isolation are two sides of the same coin, a currency that can be prized or shunned, and in the convoluted and confused world of chronic illness, the line between the two can be fragile and blurred. Despite the difficulties imposed by illness, our connections to others are in many ways what keep us human. If isolation has too often become your domain, please make efforts to reach out; if you recognize isolation in others, please make efforts to reach in. Although the human state dictates that ultimately we all are alone, so too we are all in this together.
"I find I value time bereft of social responsibilities quite highly"...this is where I am. The effort to socialize has become just too exhausting. I thank God daily for the internet, where I can just hit and run. Take my time typing out a short phrase, hit send, and not have to have a conversation. Even just sitting and *listening* on the phone exhausts me. Sometimes it creeps up on me, also - making me ill and flat out because I don't catch it in time.ReplyDelete
What a vicious disease!
Yes, any way you cut it the disease is no fun. It does make you acknowledge your limits, and perhaps that's not a bad thing. If only it wasn't so adamant about it. Testing the boundaries often leads to punishment that does not fit the crime…Delete
Your words quite precisely and elegantly capture many of my deep (and often disguised) thoughts and emotions. I feel slightly less lONEly now. Heh...ReplyDelete
Glad that we can be comrades in arms, only wish the camaraderie was engendered by something a bit more pleasant. Nevertheless, it's important to know that others are experiencing similar feelings, and that you are not operating in a complete vacuum…Delete
Someone taught me a while ago that any thought in my mind that is not outwardly spoken, is a secret. Secrets turn into poison in my mind and if I don't tell someone my secrets, my mind starts to take me to a dangerous place. When I'm in this dangerous state of mind, I start to get lonely and my thoughts start to take over, negatively impacting my ability to think clearly. I have to constantly get my secrets out and regularly I need to write stuff down in order to see what's in my mind on paper because that makes it real.ReplyDelete
I mention all of this because Marc makes great points about loneliness. I feel part of my problem with that is the constant mental fight in my head. I'm lucky enough to hang out with a bunch of people with whom I can share my thoughts with.
Thanks gain, Marc. Your posts are so appropriate and mentally stimulating. You truly are my hero as you face MS(or whatever you have) with great fortitude.
BTW, your silent scream was deafening :D
I hope your ears have stopped ringing from my silent scream. It's piercing, isn't it?Delete
Happy to hear you have friends that you can share your thoughts with. Your insights into the importance of enunciating your thoughts, thereby giving them substance that can be worked with, are the basis for all "talk therapy". I guess that Freud was not a fraud after all…
Marc, your words remind me of my mother who died three years ago. For the last decade of her life her life was encapsulated by her bed and visits to church in a wheelchair weekly with my dad assisting her in and out of the car or mini-van. There were too many stumbles and falls in these brief excursions that wore her out and frustrated my father. The other 6 days of the week she was in bed or struggling to/from the bedside commode. Even with the aid of antidepressants I was amazed at her ability to never complain in my presence. She had too many hospitalizations the last few years but once home again she returned to her routine and always welcomed visits. She was definitely isolated and missed many weddings of her grandchildren and other family gatherings, but always encouraged Dad to attend without her. I always remember her example whenever I want to grouse about my physical ailments. It helps me realize what I have is many times beyond the limited boundaries that trapped her.ReplyDelete
Keep engineering your escapes onto the streets of New York as long as you can muster the energy and will.
Yes, it's quite important to seize the day, even if with a weakened grip. Living with a progressive disease, one must adopt a "strike while the iron is hot" mentality. Sometimes it's easy to lose sight of that, but first and foremost it's important to maximize whatever abilities your disabilities have not stolen.Delete
Sorry to hear about your mom's last years, sounds a lot like my grandmother, who I was quite close to. Your mom sounds like a very strong and brave woman, thanks for remembering her here.
Your 'scream' link did not work at my end but my scream is what this guy above sounds like from 1:40 to 1:56. Crazy and sort of scary. Non violent psycho music is MS.
I enter Anonymous as profile (too lazy to learn new moves) but I otherwise sign as FRENCH FRY
Thanks for that link, I haven't heard that song in years. That screen is far from silent…Delete
The screen link in the post isn't meant to work, just a little joke. Click on it and you hear silence, which is what a silent scream sounds like. Ha ha.
Nonviolent psycho music, I think I can get on board with that…
Rough paraphrase from whom I don't know, but i suspect Nietzche:ReplyDelete
"Ultimately we all live and die just as we dream, alone in our minds"
For a long time, this quote terrified me. It spoke too well to my inability to express what I feel. At times it's felt like there was nobody to tell even if I had the words. Still, I keep going in part because I came to think of another quote in answer.
"I have a dream..." by MLK. If we are all to live in our dreams, there is nothing which says dreams can't be shared, and not all dreams need be nightmares. My perspective may never be shared in its entirety, but that doesn't mean others will gain nothing from me nor does it mean I can't share in their dreams. Over time, my self image has changed ever more to a small step up a great hill for those around me. How can I get them to the next height so they may better see their visions and hopes.
Certainly does sound like Nietzsche. We are indeed all ultimately alone, each of us locked within our own minds and bodies. But, as you state so well, that doesn't mean we can't share our version of reality with others, and perhaps give them insights they might otherwise never have come to.Delete
Luckily, the reality most of us perceive is very similar to that which exists in the minds of others. Stray too far off the farm and you wind up in a padded cell. Other cultures thought that the "insane" had been touched by the heavens, and tried to extract wisdom from their babblings. Perhaps there's something to that notion…
Love the silent scream. Funny how life still happens and drags us along with it.ReplyDelete
Your photos have always lifted me out of reverie and your words are a balm..that is pretty darn fine in my books.
You make a huge difference in a lot of lives, Marc:))
Glad that I could be of help, and that my words are THE BOMB! Oh, you said balm, well that's pretty cool too.Delete
Yes, the world keeps spinning, although sometimes we wish it would stop, or at least slow down a little bit…
It is ironic that you entitle this "One", because I always think of you in terms of a huge network of others, some from your former life and many cultivated by your incredible talent and charisma online since you got sick. But ultimately we are all alone, aren't we? Whether we have this crap disease or not. I have so many wonderful people in my life, but so few truly 'get it' that I frequently feel absolutely isolated. That existential oneness is utterly magnified.ReplyDelete
Your description of trying to get out to do something is spot on. My youngest got married last week. It was a joyous day and yet a nightmare of logistics, exhaustion and pain. And no one really understood.
It is also a coincidence you wrote about this as my friend Michael was just asking for you and I thought of how even last year it would have not been too hard to get into the city to get together. Now, well, let's just say it would be complicated. **Sigh**
Thanks for another thought provoking essay, my friend. You are always in my prayers.
Hey, Marie, it's great to hear from you. Sorry to hear that the disease is taking its toll, though. Congrats on your daughter's nuptials, I'm sure the joy you felt was worth whatever hardships you had to endure.Delete
We are all "one" amongst others, all the more so when we experience things that mere mortals can't really understand. Got to love those that try, though…
Hi Marc, its been awhile since we have "talked". As usual, your words have expressed my own experience, so very well. As crappy a disease as MS can be and as variable the course for each of us may be, there is a lot we all have in common, in the quiet places.ReplyDelete
The quiet places. Sometimes the problem is that the quiet places can get awfully noisy, the challenge is releasing the cacophony so that you can soak in the silence. It's comforting to know that others share the experience, but heartbreaking to know that also. We persevere, making the best of it, because that is the best of the choices presented to us.Delete
I loved your text..this one...brillant, just like Ms....blinds you, or something similar...ReplyDelete
Thanks for reaching out with this post, Marc.ReplyDelete
Thanks for a GREAT blog. You described my MS experience like I never could. This is the first entry of yours that I have read, but it will certainly not be the last.ReplyDelete
Thanks for a GREAT blog. You described my MS experience like I never could. This is the first entry of yours that I have read, but it certainly will not be the last!ReplyDelete
This is excellent.ReplyDelete
You know Marc, I have gotten in the habit of quoting you at the end of every blog I write, because I can not say it better than you. You just have a gift....ReplyDelete