On Hope

(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?

Hardly.