“Live life to the fullest.”
I’ve heard them all. But what if I don’t feel like it? What if I’m having a lousy brain day, restricted to a darkened room with a blinding headache, and seizing the day is not an option?
I have clusters of malformed blood vessels called cavernous angiomas in my brain. Two of them bled, turning my life upside down with seizures and other symptoms. A few months later, I underwent resection surgeries to prevent future bleeds.
The surgeries wreaked additional havoc — headaches, seizures, fatigue, short attention span and memory loss, vertigo and poor balance, as well as severe depression. During the first couple of months post-surgery, my world revolved around my recovery. I was in survival mode, often fearful, often feeling alone. On good days, I took it one day at a time. On bad days (and there were many), I slid back three steps for every half step forward. There wasn’t much I could seize on those days.
A year into my recovery, I finally had the wherewithal to join the Angioma Alliance, an online support group for angioma patients. Through the website, members connect with each other, sharing war stories, sometimes asking questions but more often seeking reminders that we are not alone in our struggles.
All of us cavernous angioma patients live with an ax hanging over (or inside) our heads. There’s always a chance of a bleed, especially from an angioma that has bled before. Angiomas can cause symptoms even when they haven’t bled. A resected (surgically removed) angioma can grow back. Many of us who have the familial form of the disease have many angiomas and can generate new ones throughout our entire lives.
Those of us who are good candidates for brain surgery, where the benefits outweigh the risks of surgery, are considered the lucky ones. One of the members of the Alliance has an angioma located in her brain stem. Unfortunately, it is inoperable. My friend is scared of the very real possibility of a bleed causing her heart to stop beating or to suddenly take away her ability to breathe. Her fears often paralyze her, preventing her from taking life by the horns.
My fears emerge when a new symptom appears or a new manifestation of an old one emerges: is it a sign of a new bleed? Is a new angioma forming?
These days, more than ten years since the surgeries, my good days outnumber the bad. Most of the time, my fears hide beneath the surface, and when they do come out of hiding, they rarely paralyze me.
I should be able to seize the day.
I have several friends who are breast cancer survivors. Sheryl, at the age of seventy, learned to fly-fish and dragon boat. She paddles competitively and participates in national and international dragon boat races.
Darlene didn’t even jog before her diagnosis; now she runs marathons. She rarely traveled out of town, and now she travels frequently and extensively. She’s tried sky-diving, attends glitzy shows, and throws frequent pool parties.
Are these inspiring activities the only ways that count as living life to the fullest? Should I seize and celebrate life like my breast cancer survivor friends?
I have absolutely no interest in sky-diving or learning to fish. Glitzy shows have never been my thing, and I do my best to avoid parties.
Is it a matter of personality? Perhaps if I were as gregarious as my friends, I would live more like them. They may not have been as daring pre-cancer, but were they as gregarious as they are now? Perhaps they only developed that side of their personalities after the challenges of treatment and recovery. Was I supposed to have become more outgoing?
Having had to take a crash course in asking for help and admitting my weaknesses, I have become better at connecting with people. I’m not as extroverted as Sheryl and Darlene, but I am more outgoing than I was pre-surgery.
Still, I’m not a party-goer. My difficulties processing high volumes of sensory input keep me from activities such as sporting events and parties that involve large crowds, loud noises, and garish colors.
Perhaps it’s a matter of energy or lack thereof. Much of the time, I struggle through debilitating fatigue and have nothing left for celebrations. When I am overtired, my deficits are exacerbated and vertigo returns in full force, my balance is precarious, my attention span is that of a gnat, I have trouble accessing vocabulary, and my headaches are crippling.
I have to pace myself. I take one day at a time, shuffling through the bad brain days, enjoying the good days. Is that the best I can hope for? Is that seizing the day?
Like my cancer-surviving friends, my life has changed dramatically. I travel much more than in my pre-injury days, to Colorado and New York, Israel, and Mexico. Always, wherever I go, I must seek out quiet spots to recover and regroup. But once my inner traffic jams clear up, I join in the fun, though at a slower pace.
I do have more passion in my life—it comes to light in my teaching, in my writing, and in my need to make a difference in the world.
Within a few months of my surgeries, I moved into a more central neighborhood. I am within walking distance of shops and restaurants. I no longer drive everywhere. My awareness, both of myself and the world around me, has grown; I am more in tune with my fellow human beings, better able to interact with my surroundings. I live more quietly. I take leisurely walks, stopping to absorb my surroundings. I play with my grand-dog, enjoying his antics. Life is harder but more fulfilling.
Could my way also count as a celebration of life?
It is a lovely day outside. I am well rested after a rare night of decent sleep. I slip on my jacket and head out for a stroll along the nearby river.
This diem is definitely calling out to be carped, my way.
This guest article originally appeared on the award-winning health and science blog and brain-themed community, BrainBlogger: Carpe Diem—Living with Fear.