I wrote the following essay a few years ago, but I am still living with Chronic Migraine. Nevertheless, in re-reading it, it helped to lift me out of my recent funk a bit. You see the last seven weeks I have been on a trial of Candesartan, and I believe it not only made the headaches worse, but also exacerbated my anxiety, so I was feeling pretty down, because before the Candasartan I had really reduced a lot of my meds, and now I need to wean back down on muscle relaxants and benzos again since they were getting me through the recent five-week migraine.
I am a naturally hopeful, optimistic person. For example, when I was ten years old, my parents took me and my brother to England. We waited in line to see the Royal Ballet’s performance of Swan Lake. We didn’t have tickets; we were just waiting in the rain—that summer it rained every day—hoping for half-price, undeclared tickets. The line was long, the sky was grey, but I kept saying, “I know we are going to get seats.” Two minutes before the performance, we were ushered into the theatre—to the front row! So, for me to go through life without hope, without a belief that wherever you are and whatever is happening to you is not the final product, the final way things are going to be, is an anathema to me.
The problem is that constant hope can also come with painful disappointment. Disappointment that rips at your soul as you question every action, thought, and move that led to the decimation of your dreams.
Lately, I have gone through a myriad of disappointments with regard to reclaiming my health. The last few have been devastating; add to that the physical pain that accompanies the failure of one drug, one type of medical approach, one hope, and you ride an emotional roller-coaster that does not end with front row seats to the Royal Ballet.
So, every time I try something new, I say to myself, a little bit better would be ok. I don’t have to be all better, just a little bit.”
I once said to my mother in the car ride to yet another neurlogist that I was going to go cautiously, not expecting much—like Alice Walker poem’s that begins, “Expect nothing. Live frugally.” I could not abide that poem when I first read it. I felt, why live frugally? Live with gusto; give to others handsomely; live and love with hope because then at least you have the joy beforehand. If it turns out well, all the better. If not, you can still remember the excitement of the hope. Later in the poem, Walker, explains that we should wish for nothing tinier than our “small heart” or “greater than a star.” This seems a pretty big window for living frugally; and I realize that, depending on one’s perspective, our hearts can be not small, but large—generous, kind, loving, helpful—and therefore bring a lot of light to other people’s lives; whereas, a star, though huge, provides little light or warmth to us down here on Earth. The stars we see may have died millions of years ago. They are but reminders of a history we hold onto for either hope for the future or regret of the past. Our “small” heart can have more impact than the stars.
I know in my head that being realistic and more cautious saves me from the excruciating pain of failure-- that, like Walker writes, I can make a “parka for my soul.” Nevertheless, I think that the joy of imagining things as I would want them to be, of pretending sometimes that they are, in some ways gives me the strength to recover from disappointment. I like to share the warmth of my soul, not keep it buttoned up in an insulated parka. Yes, it’s a rockier road—a sine curve with higher peaks and valleys, but it’s not a flat line—which is death in medical terminology.
Yes, I see the wisdom of protecting oneself from utter despair. Despair takes too much energy away from living with what you have at the time. Despair is the utter loss of hope. So, I try each new therapy while trying to beat down high hopes, while just looking forward to possible new options. Even so, each new option brings with it a smidgen of hope, a little glimmer of what could be, maybe even the star that is in the poem.
Is it possible to live with pockets of hope rather than a full-length cloak of it? Then, if failure occurs, as it often does, I can fashion a parka to soften the blow. I don’t know, but I am going to try. And yet, I still cannot expect nothing. I know expecting nothing leaves you open to wonderful surprises. Could there be a middle ground between thinking the solution is at our fingertips and believing that we must be stingy with our expectations?
I believe so. Rather than expecting nothing, we should live with gratitude for what we already have, and hope for continued joy or better days. When I mediate, one of the words I use is "thank you, so as I meditate, hoping for an improvement, a lessening of pain and anxiety, I am also thanking my friends, family, loved ones, Mother Nature, and myself for what I already have--and maybe for the ability to hope.
And now, after reading this essay yet again, I find that the phase of burnout and "oh my gosh, is this ever going to get better" as well as " I can't wait to try the next thing" are barriers to hope. Hope looks to the future, but I have to feel it in the present, otherwise it turns into anxiety.
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