My Hundred Year Plan Interrupted by ME/CFS and Brain Injury
I’m recovering from a brain injury. But there’s more to me than that.
Healing My Brain, My Way
Last night I watched the full moon rise. Delilah slept beside me where my ex-husband used to. I have good days and not-so-good days. Recently more of the latter. I had spent the day in bed.
What have I done today? Nothing except to endure nausea and pain. I waited for sunset so I could wish the day farewell. I grieved another day lost to my illness.
The antiviral medication has knocked me around. My doctor is trying to find the dose that I can tolerate. The treatment is helping because I can think clearer and my friends say I speak faster. But it is still fatiguing and tedious.
When I was eight, I wrote a bucket list. I estimated that I needed a hundred years to complete it. I wanted to get lost in a jungle, climb red sand dunes, swim in the open ocean, be an artist and represent my country in sport. I never imagined an injury and chronic illness on my list. I’m not sure what to do now.
I was thirty when I first became ill. I figured I had sixty per cent left of my “allocation” of time to complete my list. In the beginning of my illness I was hopeful. I thought I had plenty of time. I thought I could handle a few months or even a year of illness. Then begin my bucket list again. My illness dragged on, my thirty-first and thirty-second birthdays came and went. In a few months I will be thirty-three.
Before I got sick, I planned a six-month trip to stay with my family in Croatia. I longed to reconnect with my roots. I arranged my consultancy business so I could work online remotely. My airline ticket sat on my desk reminding me of my bucket list. I hoped I would be well enough to travel before the two-year expiration date. I cried when I threw it away with the rest of my dreams I had planned that year.
My desire and faith to heal is ever-present. I do not know how—or if—I ever will. I hope my body is able to overcome the injury. I really don’t know. I have not lost my passion for life. The reality is that I must wait for my body to heal. I realize I need a contingency plan.
I loathe the constant uncertainty of living with chronic illness. I try to be present, like an apprentice Buddhist monk. I understand the wisdom and logic that we only have here and now, but living this idea is another matter.
Day-after-day spent in bed is not on my bucket list. My eight year old self screams with frustration. The young voice detests wasting my precious days. I thought I was guaranteed certain things in life: a healthy body, the ability to work and create art, my independence, to be involved in my community. All things I can not do now.
Chronic illness swept away this idea in an instant. It’s taken me longer to let go. A painful insight emerges, like a band-aid pulled off slowly. Faster is better, but the lessons of chronic illness are revealed slowly. It is a test of endurance for my spirit. In the quiet early morning, I question my eight year old’s ideas about the world.
What lies have I told myself about living to be one hundred? When did I become so entitled to expect to complete my bucket list? I’ve been grappling with this concept for nearly three years now. I couldn’t let it go for fear I may have it wrong. What truths might I discover in the stillness of my mind?
The moon shines brightly high in the sky. Delilah snores and my hand rests on her soft warm back. My bedroom is filled with moonlight. This moment is all I’ve got–not my 100 year plan–and it is precious. I’ve only learned that now. I breathe in and out. I feel one tear on my cheek as the pressure and stress of my lost years fades away. It is replaced with a deeper knowing that this moment is all I have. I realize my bucket list is irrelevant. I am ready to embrace the concept wholeheartedly. I free myself and rip off the bandaid.
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