Tuesday, August 4, 2009

At What Price Health?

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For the last few days, I've been pondering a thought exercise that recently popped into my mind. Imagine, for a moment, that an almost miraculous cure for MS has been discovered, one that can alleviate all MS symptoms with a single injection. A patient simply has to go to their doctor's office, get the shot, and, voilĂ , 24 hours later they are completely symptom-free, their nervous systems restored to an undamaged condition, and their general state of well-being suddenly better than even before they were diagnosed with Multiple Sclerosis.

Great, right? Sign me up!

Only, there's a catch. This "cure" comes with a terrible cost: after a considerable amount of time, every patient treated with this injection dies painlessly in their sleep. In the "X" amount of time before they die, the patient remains in the full bloom of health, right up until the night they go to bed for the final time. The question, then, is what would be the minimum duration of guaranteed health that would entice you to take the shot? In other words, would being restored to perfect health be worth it to you, if you knew with utter sureness that you would die in six months? One year? Five years? 10 years?

Would you be willing to trade a full life of chronic illness for a blissful time during which you would be completely unshackled from the chains of Multiple Sclerosis? For a time free of fatigue and cognitive dysfunction, of muscle spasms, spasticity and profound weakness, of bladder and bowel issues, of the constant daily struggle of dealing with the rigors of this miserable disease? An interval during which you'd have no reason to even think about braces and canes and walkers and wheelchairs and MRIs and neurologists and lesions and a medicine chest full of pills that hardly even seem to matter? When you could walk and run and dance (dance!), drive and play and travel, and finally, finally, once again be that fully functional man or woman that you used to be, that you've dreamed of being since the day MS started taking its dreadful toll?

How many months or years of restored health would be enough to entice you to undergo a simple but profoundly effective treatment that carried with it the ultimate price? Of course, the answer must differ for each of us, based on our own current state of disability, our rate of progression, the level of our misery, and the amount of hope we have that a cure, or even a truly effective treatment, can be found in time to help us.

Certainly, marital status and family situation factor greatly into the equation. Single people, or those without children, might be more willing to sacrifice longevity for a chance, though brief, to be healthy once again. For those who are married, and especially those with children, the calculus gets infinitely more complicated. How much time with a healthy parent would it be worth for a child to then lose that parent? Difficult questions all, and ones I think reach to the very core of our beings.

Personally, after much thought, I think I'd put my "X" at somewhere around a year or a year and a half. If a physician approached me with a syringe, and told me that the injection would guarantee me 12 months of perfect health, but at the end of that 12 months, I would die painlessly in my sleep, I would give the offer serious consideration. Of course, I'd want more time, all the time in the universe, but this thought exercise requires that we consider the absolute minimum amount of time we would settle for.

One year would give me time enough to experience all of those pleasures in life that I now miss so terribly, to travel to the places my wife and I have always wanted to see together, and to spend time with those who I hold closest to my heart. I don't have children, so that's not a consideration. I do have hope that stem cells offer real promise as a treatment, but I'm unsure that this promise will be fulfilled in time to help me. I have my doubts about many of the avenues currently being explored by MS researchers, and though strides are being made, I'm uncertain that the mysteries of MS will be fully unraveled anytime soon, and given my rate of progression, soon is the only timeframe that really matters to me. In addition, there is now question as to whether what I have is even really MS, and what chance is there that some mystery illness will be solved before it puts me into a state I deem to be simply unbearable?

So what about you, dear reader? What's the minimum amount of time for which you'd be willing to trade your life for perfect health? What's your "X"?

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  1. In a year, year and a half, my kids will be 18, preparing to go off to college. MS has forced me to their lives sideline, I can't drive, so did no drive practice with the, boyfriends and girlfriends come and go, they don't remember Mom cooking, planning carnivals, block parties, tutoring the homeless, etc. I can't do Christmas like I loved. I can't make love like I used to. Die painlessly in my sleep! A year of "normal!!!! Sign me up!!

  2. If my kids were younger, well, I believe kids need a mom around, no matter what, But they stand poised on the edge of leaving right now. I think I raised them to fly away. They'll be OK, Dad is pretty good. There's no guarantees for anyone in this life anyway.

  3. I don't know the answer to this question Marc, more so because MS has treated me kinder than it has you.

    I can understand the choice that you would make, though, if such a choice were possible.

    I sincerely hope that stem cell treatment or some other treatment will prove successful very soon. And that you will be able to do all that you would like to do, but without any time limit.

  4. Marc - I just started reading your blog over the last week or so. You have a compelling combination of great content and excellent writing skills making it a must-read for me. Reading this post was mind-blowing. I'm almost afraid to read this to my wife (who has had MS for 20 years and been unable to walk for about 10) to find out what her X is.

  5. I wouldn´t trade my life for any amount of years of perfect health. Mainly because I believe in karma, which we can´t escape even in death. I´ve decided to ride this one out and to live the best life I can with the cards
    I´ve been dealt.

  6. Back in high school my hormonally charged friends and I used to ponder a similar thought exercise- what body part would we agree to amputate if we could sleep with any number of beautiful and aluring senior girls. If I could have fulfilled any of these fantasy contracts, suffice it to say I'd be living my entire adult life with fewer than 10 fingers and 10 toes, quite a number fewer.

    But this is a more serious philisophic question. I am resigned to the likelihood that no cure will come in time to reverse what MS has done to me, and it's done a lot. At best, something will come along and stop the progression and leave me wherever I am in my decline. But although my body is failing me, I have this inherent and possibly inexplicable love of life, such as it is. I figure I'll probably die a natural death at about age 65. I am 45 now. I'd give up those last, ummm, 7 years to be healthy starting today. So my personal X is 13. Ask me again when I get a bunch of new symtoms in the next year or so though, you might get a much smaller X.

  7. Marc, this is a great thought to ponder and one that I have several times to myself. Like you, I am Primary Progressive, but the past 5-6 years have sped things up considerably.

    I have 3 children, the youngest only 8 (I am 41), and this compounds things greatly. My little girl doesn't remember me being able to walk and only knows the "wheelchair" me. What would it mean to her to have her Dad run, play and chase her around for a couple of years?

    As impossible as this is to answer, it certainly is thought provoking. Keep up the excellent blog!

  8. Marc, are you the devil, can make me a deal? I'd run with the devil. Did you ever read Flowers for Agememnon? This story has stayed with me over 30 years now. And "tis better to have loved and lost, than never to have loved at all".

  9. I am in!
    Having been diagnosed now for over six agonizing years,I would take them back in a heartbeat.
    No doctors,no solumedrol,no novantrone,no cellcept,no ivig,no plasmapheresis,no tysabri,no baclofen pump,no cane,no walker,no scooter,no wheelchair.
    Hold on! I'll do it in three.

  10. Hey everyone, thanks for the very interesting and enlightening responses. The scenario I presented is a difficult one to assess, and I appreciate the input that you folks have added.

    Kicker-kids certainly complicate the equation enormously. I'm not sure how I feel as a disabled dad.

    Manju-thank you for the kind words and thoughts. I'm glad that MS has treated you relatively kindly...

    cranky-thanks for the encouraging words about the content of my blog. It's very much appreciated. I know that the question that I posed is a hard one, and might be quite uncomfortable to think about. Certainly makes one assess priorities...

    big dog-as a fellow believer in karma, I hear what you're saying. Basically, there's no escape from any accumulated bad karma, either you suffer from it from it in this life, or in death, or in the next life. However, most Buddhists believe that there is no such thing as coincidence, so if such a drug were offered, it would be part of the universal plan, and certainly no further bad karma would be engendered by partaking of it. In fact, one might look at the opportunity provided by the drug as a release from the sufferings of this life, provided by the universe for the benefit of the sufferer. It's a complicated philosophical conundrum...

    Mitch-your high school proposition is very interesting. Given the level of my hormones back then, I surely would have gladly lost a few digits for a chance to be with some of my more winsome classmates...

    undoubtedly, our "X" changes with the changes in our physical condition. I would imagine that many bed ridden persons' "X" might be far less than a year...

    anonymous-the image of your child suddenly seeing her dad running and playing with her is very compelling and emotional. I'm sure you're a terrific dad even in the wheelchair. Stay strong, my friend...

    kicker-no, I'm not the devil, only a little devilish. Flowers for Algernon is indeed a great story, that has a tremendous impact on most to read it.

    Moja-yeah, the years can be agonizing, but I try to take advantage of each one the best I can. Some days, of course, are harder than others. But to be free of everything associated with MS... very enticing...

  11. Hi Marc,

    Good post very thought provoking and provocative.
    Provocative in that it made me think seriously about my choice.
    My choice was 5 years in order to do all the things I want to do.
    If only it were true1

  12. ALGERNON!!!! Hey!! I'm 53, High School was a l..o..n..g time ago.

  13. I think it would depend on the severity of the person's illness. If said person was not that bad yet, they could wait until it became unbearable. I'm nearing the stage where I'd accept even a month. Hell a week.
    Really, could there even be a cure? Think of the lost jobs and income for the drug companies!

  14. What an interesting way to frame the euthanasia debate. As X approaches 0, the treatment is more likely to be classified as euthanasia.

    As a caregiver and partner, I would love to know with some certainty how much longer BR will have to suffer to bless me with his presence on this earth. I want to give him the best life has to offer in the time he has left. But I don't have infinite resources, and so "the good life" gets rationed, albeit at a faster pace than if he were in perfect health.

    I will support him in his decision, even if his X is 0.

  15. Hard for me to put a number on this Marc...
    I would be missed by many ( I hope) if I were not able to post to the Stu's Views and MS News, blog or to my various facebook, twitter an Live Journal pages...

    Keep up the good work. when's the next video coming?

    Best Regards,

  16. i guess this makes me feel lucky to not be in THAT bad of shape despite a PPMS diagnosis. as things are now i would say my number is 15-20. its an impossible question though b/c i may be in severe pain later and change that decision. i just enjoy watching the world go by, so as long as i have music, and the internet, i can enjoy this life (your videos are an example). marc, it strikes me as odd that you would choose one year. wont your wife miss you, and isn't it worth sticking around for her?

    i have wondered all kinds of these types of questions. if you could know the day you died, would you want to know? if you had to give up your eyesight or hearing, which would you choose? if you could flip a coin and have it land on heads you could have anything, but tails would make you cease to exist, would you want to flip the coin? etc. fun to consider...

  17. very hard to answer. tomorrow being my 19th birthday, i still have alot of life to live.

    i also am not in bad shape. the only visable symptom i have is a weak right leg that acts up after walking a ways. however, my fatigue interferes with my life sometimes and it isn't made any better with the ms related insomnia. (nice combo, I know)

    but if i could give 10 years off my life span to be cured and to go back and have a normal high school experiance, i would. i never had a normal teen age social life. or just plain life.

    if you were to ask me that in 5 years say i might have a different anwser. even though i am RRMS, the drugs are not working as well as they should for me, and i am having to turn to drugs still in trials. i start this month.

    i am an optimist by nature but have my pessimistic days and moments. i wonder what will happen next if this drug doesnt work. What next? what if no drug is able to slow MS like it should? will i be in a wheelchair by the time i graduate college? and is college really worth it? is tens of thousands worth it to work for a few years before being forced to live on SSDI? Will my left hand stop shaking long enogh to type with it?

  18. If I had made that bargain at 45, I would have missed the best things in my life. Although I was at that time already married to my wonderful husband,
    I was not yet a committed Christian, and he himself was born again in his seventies, when I was in my sixties. I would have missed that. I would have missed my grandchildren, now 5 and 7. I would have missed the great people on the MS forum and the great people on the Porphyria forum. My best friend on the porph forum is on the other side of the world, and I would have missed her.

    My husband did not want to die, no matter how sick he was. Just watching the bunnies in the back yard and eating dinner with me was enough to want him to live another two years, if he could.

    At this point, life seems to have come to an end as a good thing, but who knows? I may have something more I need to do.


  19. I have often pondered what it would be like if a cure for MS and its damage was found. Of course I would do it in a minute. The time trade idea is an interesting twist. I think that it would take time for me to discover what "me" used to be like so I need more than a year. I would be comfortable with about 5 years because it would give me time with my husband to make our golden years (I hate that phrase) truely golden. In 5 years our risk of developing other health problems would be pretty high and our quality of life could drop again. If not, well we had a good run for 5 years and, after all, who doesn't want to die in their sleep?


  20. Herrad-if it were true, we really have a very hard choice to make. Maybe better that it's not true...

    anonymous-it absolutely depends on how far the disease has progressed for each person. For somebody relatively low on the disability scale, it might be hard to even imagine making such a choice. For somebody in a state of total dependence, perhaps a single day of freedom would be enough. But then again, maybe not. It all depends on the individual...

    Steve-BR is lucky to have you, and you him. The fact that she would support him even if his "X" was zero speaks volumes of your feelings for him. Live La Dolce Vita, for as long as you can...

    Stuart-you would definitely be missed, by many people. I think the next video is temporarily on hold, until the weather cools down enough for it not to overwhelm me. Hazy hot and humid does not make for a happy kamikaze...

    Anonymous-I'd surely want to stick around for my wife, but it becomes a question of quality versus quantity. Right now, I can still hold up my end of the bargain, at least somewhat, but if my disease progresses much further, the scales will tip all out of balance. Maybe one year is too short a time, but I really was trying to challenge myself to come up with the absolute minimum amount of time I would trade. A whirlwind year of health and vitality, versus a lifetime of wife as caregiver, a difficult choice indeed...

    pfrox9 -I'm so sorry that you have to deal with this crap so young. There are advances being made, every day, so keep the faith. Live each day to its fullest, and try not to think of what you've lost, but what you have. Turn the disease into a liberation of sorts, don't hold back, follow your heart. When I was your age, I was certainly no angel, but looking back, I do not regret a thing I did, only the things I didn't do.

    Happy birthday!

    Mariel-thanks for that interesting and enlightening perspective. Life is truly a journey made up of nothing but blind curves...

    Carpediem-nice summation of your decision-making process. Again, what this really is about is a question of quality versus quantity...

  21. I rememebr an in-law of my sister stayed with her husband until her children were adults but had a very difficult life. When she finally divorced him her kids said "you shoudln't have waited, we wanted a mother not a martyr" So I sir here thinking I'd need enough time to see my youngest child become and adult but then a shorter time of full health would give him better memories. Or wouled it ? I couldn't love him any more and he still does all the physical things with friends and other members of the family ao it's just me wantring a better time. So I couldn't chose a time for that to end. I'll have to stivk with life as I know it but as the others have said, in a worse situation the X may change.

  22. OOOOH, you opened a can of worms. Like Kath, My kids (who I love dearly), well, I want to be the mom I was. I try to never ask them to help, I never have asked for any personal help, not sure I ever could. I think it shows our past, how I know now They are there for me and behavior is still great. (though they could still drive a motorcycle through the principal's office at any moment for fun, who knows!!)When I can no longer control with voice and looks (Can you tell I taught?)I think I don't want "to play" anymore (play a substitute for live) They don't need a weak Mom at this stage. Very confusing.

  23. Although being MS free is a dream, I don't know if I would have the gumption to actually take the shot and know that in some prescribed amount of time I'd be done.

    I think I would need at least five years to once again soak up all the joys of living like a normal person.

    But no matter how long the time I get, I probably won't want to leave my MS-free life.

  24. I dread the idea of living another 30 years or more with progressive MS. I would gladly take the injection if I could have 5 MS-free years of life.

  25. after suffering from this sucking disease for ten 'KNOWN' years, i have a hard time answering. ten years ago i said when it gets to the point when someone else has to wipe my behind, i am calling dr kevorkian. well i am there at times.... but i now have a six year old son.

    I am 46, around your age. i would like to see him grad. college, get married & have kids.... then, i also would like to toss a ball with him, wrestle with him, get in the floor and play cars..... now he only sees me in the floor when i have fallen and EMS is here...

    my wife will not even read this blog entry (i emailed it to her)... but i really wonder if my wife could choose my x, what would it be?

  26. Sign me up, I will take 7 years.

  27. Marc,
    I changed my mind - I want 5 years like most others.


  28. I have been mulling over an answer for a few days now. I keep vascillating from thinking only about me and my pain, my physical limitations. Then I think about my kids and my husband and how they would feel about my choice.

    I lost my father at age 4 and my mother at age 21. I was hardly grown up and ready. They missed my wedding, they missed the birth of my children.

    So, for me? 5 years, if that is the limitation of years that could be granted. But I wonder what my nuclear family would say if given the choice for me.

    One thing I know is that a person still moves forward in life, even without loved ones. But I do think how different it would have been to have known my father and had had my mother during my adult life.

    Great question. It still rolls around in my head even thought I have put it to print.


  29. kath-I can't imagine how much harder throwing a child into the equation makes this question. It's hard enough when you're making the decision for one life, but when you start adding the lives of spouses, and children, the results of your decision multiply exponentially...

    kicker-thanks for your contribution to this thread of responses. You've really illustrated how difficult a decision like this would be. So many things to consider...

    Lisa-I don't think anyone would want to leave their MS free life, but that's what makes this thought exercise so incredibly difficult. The fact that you again be able to experience all of the joys that you remember, but no that these joys carry with them a terrific price. Five years sounds like a good choice, but I was really challenging myself to the absolute bare minimum I could accept. Without such a shot, in five years I could very well be a bedbound vegetable, and want to find a way out anyway...

    Centennial-I hear you. If I could freeze my progression where it is now, I could deal with it in the long term. The knowledge that I will only get worse, makes the problem much more immediate. This disease ultimately leaves us with very few options, either watch yourself whither away, or take action to end the whithering...

    MS bites-I agree, that the anticipation of the horrors to come is actually worse than the horrors when they do come. Still, there has to be a breaking point. It would be quite enlightening to know what our loved ones would choose for our X...

    MS sucks-okay, you're down for seven years...

    kicker-duly noted. Five years for kicker.

    Aarcyn-interesting to see how your personal experiences have shaped your decision-making process. The observation that life goes on in the absence of loved ones is significant. The world would not end if we did. Are we better off lingering and being a burden to those who love us, or just leaving them with sweet memories...

  30. Marc, I've been thinking about this ever since you posted it. Frankly, not having worked for nine years, and having worked part-time at the MS Society for sixteen years prior to that, I can't imagine how I would support myself without being on disability. Especially now that we are in a major recession and everyone with more current resumes and better computer skills is looking for work, too.

    Making a living - starting from scratch - would suck big time. If I had five good, albeit destitute, years what then would I be able to do with them that I can't already do in limited fashion? Sure, I could be a good wife, and homemaker, and cook. But I would not have the resources to travel, etc.

    So, I would not opt to change my course of things and will continue to learn my lessons that have been laid out for me in this life with as much grace as I can manage.

    You do come up with some perplexing questions.

  31. @Wheelchair Kamikaze:

    Sure I would take the drug and enjoy years of perfect health but isn´t it in effect suicide when we know we will die because of it?

  32. It's great suicide - no note needed!!! Not my fault really 5 years later!! Few could correlate the drug and the death to yourself directly, Kovorkian but needing no person.

  33. Five years wandering the world's oceans, then bury me on a little pacific island somewhere.
    Ok, where do I sign?

    Heck, two years would do.

  34. Webster-I based my decision under the assumption that that somehow money would be no issue. Let's say that taking the drug was part of some clinical trial, in which they paid you a sizable yearly stipend to participate. How would that effect your decision?

    Bigdog-well, I suppose it is a form of suicide, but then again so is smoking, eating a fat juicy steak, and dozens of other things that people do every day. Your point is certainly a valid one, but one that certainly wouldn't stop me from taking the drug. Even without the drug, I'm not against assisted suicide for folks whose lives have become unbearable...

    anonymous-great use of the river called the denial! Let's not forget, a lot of MS patients do commit suicide, without the benefit of X years of good health...

    anonymous-wandering the world's oceans and sounds fantastic. Might have to make some extended stops along the way, though. For instance, I need to do some time on the Greek islands, and also would require a healthy dose of Tuscany...

  35. "I'd trade all my tomorrows for one single yesterday, holding Bobby's body next to mine."

    It's the reverse of Me and Bobby McGee, trading a finite amount of good tomorrows all the bad health of yesterday.

    Just found this, I don't know what I would trade.

  36. Hmm why dont you actually try stem cells. I dunno about MS but its been successfully used for paraplegics and a few others condition (google Geeta Shroff)

  37. Marc, this is a very Faustian question, and my answer would be, that you would trade for the time, but at the moment you have to pay the devil, you would regret it.

  38. Yes I belive MS is the devil joined with Big parm

  39. I have spent my life saveings on stem cells with no efect to my ms.