Samuel Langhorne Clemens is a man I would like to have had dinner with. I love his books, love to read his commentaries on humanity and I had a massive crush on the Huckleberry Finn of the 1970s kids tv programme. His daughter was epileptic. Her death, at age 29, was said to be as a result of her epilepsy. She drowned in a bath on Christmas Eve 1909. Her father died the following April. I haven’t read Mark Twain in a while but of late I’ve been drawn to re-read some of his essays. One being The Death of Jean, but more so his What Is Man? composition.
It’s been 362 days since the last major cluster of fits I had. Almost 52 weeks of one helluva roller coaster ride. The past 12 months have seen me trawl depths of self-pity I didn’t know I was capable of, deal with levels of exhaustion I didn’t know existed, lurch from one hospital appointment to the next, losing hope at every turn and delve into a darkness in my soul that tried to consume me. That means, it’s been 359 days since I had to wear a sodding hospital-issue gown of shame; I’ve been tested for, what feels like, everything under the sun and I’m fairly healthy (obviously ignoring the fact that my brain is damaged); I may have had to give up boxing, but I successfully managed not to level any member of the medical profession with a left hook; my inner-circle is intact (albeit becoming more globally dispersed by the hour!); I still have a job; I’m still paying my bills; I’ve acquired a cat and, oh, I’ve not had a major fit in 362 days.
The hardest thing about the last year has not been epilepsy. I’ve been consciously living, extremely successfully as it goes, with epilepsy for 26 years; the issue has been and continues to be the ever-increasing levels of exhaustion. Attempting to explain to someone that I’m tired is laughable at times. My eyes see what their mouth doesn’t say. I have no way to put into context the fatigue and I have no way to explain why I’ve lived with having epilepsy for so many years, but that this exhaustion is relatively recent. All I know is that, for me, epilepsy and exhaustion are inextricably linked. I have no answers, I’ve documented my frustration at that over my last few posts. The physicality of epilepsy holds no fear for me, but this new twist in the tale terrifies me.
Fatigue is known to be a factor in causing me to fit. It’s also thought to have been a factor in the death of Jean Clemens. This fatigue is toying with me. It’s ever-present and playing with my fears. It knows the terror I have of tiredness, it knows the panic I feel when I have a headache and jeezo does being knackered all the time give me a cracking headache! I know it’s a mere matter of time before the falling-sickness comes a-calling. But, if I’m going down, then this bloody fatigue is coming with me! I’m deciding whether I should give it a name! It’s there all the time, plaguing me, irritating me and basically being a massive pain in the ass, maybe I need to give this spectre a name?
This year is nearly over. I may well be on my knees, but I’m still here. And I may be weak as a newborn kitten with the energy of an hour-old sloth, but I haven’t thrown the towel in yet. There is still hope. As Mark Twain said “No seed, no plant”. You have to have something to nurture and the seed for me, is hope.
I think I’ll call the pain in my ass GW.