Frenzied: Thoughts on Death.
“No such thing as down time. Only life time – Go”
– Henry Rollins.
I’ve had my fill of death a little too much in recent years, to the extent that it’s given me an almost steel like strength of a straight face. The world has made me cold and there’s a part of me that’s sad about that. Real sad. It plays on my mind every single day, death, my final breath coming out as a sigh.
This month marks one whole year of the Eagertongue’s existence, and truthfully I’m terrified of dying without results I expect from the work I do. If I haven’t reached the peak of my ability then the days off have been too much, the down time too persistent. I hate when I find myself facing a lack of work ethic, though many of those closest to me would say that is a crazy statement. I beat myself up for it. I can’t bear to face the part of me I consider lazy.
Here comes the honesty. Around 18 months ago I found out that I suffered from a rare condition called vasculitis. It’s an auto-immune condition that affects a small percentage of the population which, in short, is an inflammation of the blood vessels. I woke one morning with a pattern of red dots surrounding my legs, which I later found out was my blood vessels bursting and rising to the surface. Basically, how it began was that my body had successfully fought of a standard sore throat, but yet had continued to fight my body even when it had gone. My body began to literally attack itself. The most severe types can be at worst life threatening and at best debilitating. When the doctors discovered what it was, I was placed on a heavy dose of steroids to try to combat my immune system from overworking. Whilst the meds themselves gave me a tremendous euphoric feeling, the rational part of me was terrified. I had to have a lump of skin quite literally cut out of my inner thigh.
The medication, however, is incredibly toxic for the body. Something I began to notice as I came out in pale skin patches and a strange and unsettling feeling of feeling full, which is hard to put into words. I had to bring the medication down slowly, week-by-week, 5mg-by-5mg. At first this appeared to work, until I reduced my medication too much and came out in red dots once more and lost all the feeling in my fingers (thankfully only for an evening). It was awful. I literally felt like I had no time left. I found myself waiting, with bated breath, for bad news, and I got it. My Doctor sat me down, explaining that they needed to up my dose to begin the process all over again, and if the same thing happened again, the next step would have to be chemotherapy. Chemotherapy? But isn’t that for seriously ill people? A last chance salon for so many dreaded diseases. I nodded and explained I understood, but my mind was filled with the fear of dying. The fear that I didn’t have enough time left to be the man I wanted to be, the fear that I hadn’t created anything worth keeping. I had put myself into the sort of frenzy where I was frantically thinking of whether I’d even be remembered in any way shape or form. Which of my friends did I need to reconnect with? What good I could do if I didn’t have a great amount of time left?
How long could it be? … 5 years? … 5 weeks? I knew nothing of this disease.
I went home and obsessed over online articles about it, finding out that a woman in Kilmarnock died within 48 hours of it being diagnosed. It had attacked her vital organs and that was that. My mind-set became yet more frenzied, mixed up and scared, but at the same time weirdly focused on what I could achieve and how fast I might be able achieve it.
Now, the fact that I’m here writing this article might be proof enough, but thankfully, the second time around the medication worked and I’ve been in a remission state since. It can come back, but my doctor feels that I should never have to worry about it again. However, those months left me scared with a fear of dying and not achieving what I wanted to achieve as a human. It took away the majority of my calm, but also, maybe paradoxically, made me a person with a lot more patience. The irony is it took a disease that physically fought my body to mentally fight my mind.
This illness was a big reason I created The Eagertongue. This month, this particular adventure became 1-year-old and I look back on the growth as work well done. At least if I went today, there’s something. But more will come, I cannot rest on laurels. But I have also realised that it’s impossible to live every day fully awake, I need some sort of tiredness, some rest.
One day I will leave this world, I have a tattoo of Death himself across my thigh as a constant reminder of this, but I just hope that when I do leave, I leave it on my terms. I hope that I leave without my body and mind fighting itself into a submission. That’s how I’m living, because nobody is promised the lifetime they want. As Henry said…