Friday, August 5, 2011

On Hope

Orange sunset
(Photo credit: @Doug88888)
A well-meaning friend once wrote to me, as part of a discussion about some new MS treatment, “If you don’t have hope, then you have nothing, right?”

I disagree.

There are several reasons that I’m able to drag my sorry ass out of bed each morning, still anxious as ever to see what the day will bring. These include, in no particular order:

· An abundance of love, friendship, and other positive connections with hundreds of people.

· An utter fascination with the world around me, both the human race and the natural world.

· An insatiable, intellectual curiosity to find out how and why everybody and everything works.

· An apparently genetic desire, or possibly one learned in early childhood, to be a good person and make people like me and be proud of me.

· The collection of daily activities that I like to call "my pathetic little life." To be clear, I coined that term well before becoming disabled. These are things like answering e-mails, writing my blog, building Excel spreadsheets for any reason at all, opening the mail, watching my favorite movies and TV shows, and reading. I begin to miss my pathetic activities when I’m away from them too long, such as when we go on vacation.

· The fact that I am in relative comfort – largely pain-free, and well taken care of.

· A strong desire to see how everything eventually turns out – my life, the lives of my friends and loved ones, each Red Sox and Patriots season, world peace, social progress, etc.

· Hope for a cure? No, not so much.

I don't see anything on the horizon that even hints at a cure for Primary Progressive MS. That means that the eventual answer is almost certainly not in clinical trials yet. It may not even exist in the wildest dreams of medical researchers thus far. Once it is in clinical trials, it will take many years to reach the general patient population. By the time that happens, even if the cure is robust, there's a good chance that the significant, irreversible damage that I have already suffered, and will suffer in the coming years, may render said cure ineffective for me. So that's not what keeps me going. Hope? It’s a minor player.

But I am not devoid of hope. Here's what even a little bit does do for me. It keeps me on the lookout for these potential cures and treatments. I’ve tried about one treatment per year since my diagnosis, and will likely keep trying. However, I must confess that I’m beginning to tire of this game a bit, and because of that fatigue I’ve raised the bar for what qualifies as “worth a try.”

This meager level of hope contributes little to helping me get through each day, though. Even if I had zero hope that my condition would someday stabilize or even improve, I wouldn't be left with nothing. I would be left with acceptance, and that's something.

These reflections are not intended as advice. I'm only relating how it is that I navigate my personal minefield. My approach is not necessarily superior to another person’s who may rely on a sense of hope about the future. Perhaps that's simply the some folks are wired, or maybe they don't have as much to be grateful for as I do. We all have our own coping mechanisms. I just wanted to share mine with you, in case you were wondering.

So my medical situation is borderline hopeless. Does that mean my life is?

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  1. Possibly the best MS-related bog I've read. I can relate to so much in what you say.
    New comics are far more likely to get me out of bed in the morning. Hope tends to make me drink more.
    Thanks for brightening up my Friday

  2. True, Mitch, what you said. I don't hold out a lot of hope, but I'm not hopeless. Curiosity gets my sorry butt out of bed every morning. It's enough.

  3. Wow, I suggest you open your own "shrink" business at home....You have exceptional insight and ways of analyzing and wording things that other people don't want to deal with, so they throw it all into the "hope" or religion or other category. Wish I could have been able to explain life after my husband's brain stem surgery to others in this way....Most don't want to hear anyone who is being objective!...from Ginny F.

  4. Yeah, who needs much "hope" if life is already pretty darned good. Those of us with that attitude going for us are really, really lucky. Oh sure, I've worked hard on myself at various points in my life--and I do give myself credit for that--but my basic "life is good" position? I think that's inherited with perhaps a bit of it learned from my family. I'm beginning to see why your blog is titled Enjoying the Ride!

  5. I totally agree with you and I'm a little scared that your philosophy is so similar to mine.

  6. I can so relate to this - your perspective is what helps me live and enjoy each day and not get tied into the 'hope' of a cure for RP.

  7. Thank you for this realistic post. It's so good to read a writing that feels really grounded in its own truth. Not afraid to call a spade a spade.

  8. Kahn,

    Possibly the best MS blog? What will it take to get me to definitely?


    Well said. Curiosity is pretty much what gets me out of bed too.


    I think you're onto something. People like to deal with our grief by hoping that it doesn't exist, rather than helping us deal with the fact that it does. And I like your idea. Maybe I'll set up a booth in front of my house and charge a nickel for advice like Lucy does in Peanuts :-)


    I feel lucky to have the "life is good" attitude like you do. I genuinely feel bad for those who are suffering but are not fortunate enough to have the same disposition.


    Don't be afraid! I don't bite.


    I'm so pleased that I can be of help.


    I do take pleasure in being forthright and blunt. Just ask my wife.

  9. Love the different perspective. I actually think hope looks different in all of us. And certainly with this disease nothing is typical. It seems the things you listed are your manifestation of hope. Just a thought.