Hope can be an effective
tool to ease human suffering. In many cases, though, it’s not enough.
After my diagnosis 15 years
ago, I set out to become the most informed patient on the planet. Even though
there were no FDA-approved treatments for
primary progressive multiple sclerosis (and there still aren’t), I
knew the answer was out there. I just
needed to be smart, brave, and hard-working enough to find it. Oh, and cocky
too. Every fighter needs a little swagger.
I tried chemotherapy and
immunosuppressants. No luck. I self-administered daily, painful shots. Didn’t help. I participated in a clinical trial
where I had to drive two hours each way, two times a month, for two years. It
slowed down progression for a while; then it didn’t. I convinced interventional radiologists to thread catheters from my
groin into one side of my heart and out the other,
so that they could balloon supposed restrictions in my internal jugular
veins—twice. In retrospect, I doubt there was anything wrong with
those veins. I lobbied doctors to inject powerful medicine into my spinal cord
every two months for two years. Again, helped for a while; then it didn’t. I
pursued all these treatments in the hope that I might slow down, stop, or even
reverse the course of my disease. Instead, I progressed from a limp to a cane
to a wheelchair, and my arms and hands are
headed in the same direction.
Understandably, I began to
lose hope that I would ever find a medical solution. I discussed this
with a well-intentioned friend who warned me, “If you don’t have hope, you have
nothing, right?”
No. That didn’t describe how I
felt. As hope faded, something else took over, and it wasn’t despair. I remained in generally good spirits, even though I knew I might never
get better. Something more impassive, almost comforting had intervened.
Acceptance.
Where hope receded, acceptance
filled the void.
It’s not that I studied the
alternatives and chose acceptance as the best path forward. It lived inside me
the whole time, waiting to be called upon.
Perhaps I inherited it from my mother or
learned it by watching her live as a quadriplegic for 39 years. No matter its
origin, I was fortunate to have such a tool at my disposal. I
suspect, however, that acceptance can be discovered, learned, or acquired if
you don’t possess it already.
Acceptance should not be confused
with surrender, although the differences are subtle. Surrender carries a
negative connotation. “I give up. Do with me what you will.” Acceptance carries
a neutral connotation, “If this is my life, then so be it,” or sometimes a
positive connotation, “If this is my life, I will make the best of it.” In its purest form, acceptance has a Zen feel to it. You are
exactly where you are supposed to be in
life. Don’t fight it. Embrace it.
I don’t
lament what might have been, envy what healthy people can do, or ask “why me?”
I’m grateful for what I have, and I accept what I’ll never again be.
I haven’t given up
all hope. I continue to keep one ear to
the MS research world. In a dispassionate manner, I evaluate each potential
treatment on its merits. But I don’t rely on this
hope to motivate me. I’m not
emotionally invested in it. I keep hope around only for practical reasons, so that I don’t miss an opportunity
for a treatment that may work. There is a lot of research going on. I just don’t
know if it will become available to me in time.
Hope is the much sexier cousin
to Acceptance. Hope can produce spectacular
results. Books and songs have been written
about the power of Hope. Acceptance does its work anonymously. The results, important
though they may be, don’t garner much attention, save for this obscure essay. Although
it may seem counterintuitive, I find that hope and acceptance work together quite well.
For my healthy and disabled
readers: how do you manage hope and acceptance in your lives?
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