Since I could not cope with the side effects of weekly chemotherapy for the rest of my life (some people are fine with it, and it really helps them, but I really reacted badly), the steroids were pure hell, and I did not fancy risking my eyesight with hydroxychloroquine, my options were few and far between. I could let the disease progress without a fight and possibly, even probably not be around for much longer or I could look at safer alternative treatments. Heck, the doctors hate me so much I was prescribed Celecoxib for the pain caused by the inflammatory arthritis…side effects? Sudden stroke and heart attack in otherwise healthy people with no reason to have either of those things. Oh yes, and should not be given to those with bleeding issues, which I have had on and off. In short, after deciding to have the minimum possible to do with the doctors who appear to be trying to off me and make the bit in between miserable as can be, I had to come up with something.
I read an article detailing the use of classical psychedelics for the modulation and possible cure of autoimmune disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500993/ All barely comprehensible, but the long and short of it was that it works in rats and in petri dishes, they can’t get permission to try it out on more humans than they have done, and the science is there. The only ‘trouble’ is that microdoses don’t work for this particular issue….
Let’s just mull this over a second, a medicine that has been used for thousands of years, which is known to be non toxic, if a little feisty psychologically, which has no financial benefit to Big Pharma, and has been made illegal by straights and control-monsters, and has documented benefits to those suffering with crippling depression cannot get permits to try and save chronically, and potentially fatally ill people because…er….tripping is bad and shit? Seriously? I couldn’t even find an impossible to get on trial for this potential treatment. Now I am not saying I took matters into my own hands, but all of a sudden I have an absolute adoration for Jerry Garcia and the Grateful Dead, I used to hate carrots, now I eat them for breakfast, I am overwhelmed with love and compassion for my fellow human beings, even the shitty ones, perhaps especially the ones who act out from fear and illness, and my edge has disappeared off into a shiny happy people kinda rainbow of fairy bowers and mandalas.
But now down to the good stuff. My hands are not totally cured, but much better. I have to use a stick, but I can still walk around. The burning water pain in my legs is reduced by about 55 percent. The vasculitis in my fingertips is not totally resolved but better than it was, my ulcers have healed up and I have only minor new ones. I do get absolutely exhausted on non-medicine days and sleep a lot, but on medicine days I am up and about and mostly smiling. No, I am not cured, but I am also not puking in a corner of my bedroom, weeping about my hair falling out, nor am I wired on steroids and my eyes are fine. So, no, not totally cured, not even close, but controlled more than not doing any of it? Yes, I think so. I have not coughed up blood in a while, which was a terrifying symptom. I am still very weak, and very shaky, but coming to terms very fast with my future. It is helping me accept that I might die and that even if I do, that is ok.
It is helping me tell people how much I love and care. It is helping me forgive, if not forget. It is helping me let go of trauma. It is helping me draw boundaries and work through a lot of trauma that is stuck in my body. It has shown me that keeping all that upset and pain and suffering inside and all that anger at my life being dragged through hell for decades was hurting me more than anything else, so it is also helping me be still, be calm and manage my fears. It is cheering me up. I have sat there crying with laughter at things I don’t care to explain right now, but that might involve mad hatters and quokka. It has had me staring in wonder at the universe unfolding before me, and me a tiny speck within it all. In short, it has not been the disturbing hell ride it could have been.
On the other side of things….man oh man have I become a hippy. It is wall to wall 13th Floor Elevators, Grateful Dead and Skip Spence in my apartment. I like floaty scarves and pretty things. I cannot listen to the Velvets on medicine days, as the dissonance just is too harsh, but I have discovered I love to dance.
I always dismissed The Grateful Dead. I used to find them boring. I would spout off about Jerry Garcia noodling and their lyrics being cheesy. In short, my ‘edge’ would not allow me to see just how special this band actually is. This is a band that wants to know ‘are you kind?’ Jerry and his band of merry men preach a secular hippy peace, love and understanding. They are a band of great beauty and great humanity.
They are a band which tells you that ‘help is on the way’ and that ‘I will get by, I will survive.’ The missing ingredient is love and compassion which can’t only be accessed by psychedelics, but in this modern world missing all the shamanism and all the ritual of love, replacing it with a book that is all distorted, forcing us to look at love through a twisted outdated lens of judgement and hatred, they sure do help. Or so I have heard. I think it would be possible to meditate your way to enlightenment and stillness. I don’t have enough time left for that. It was as if a veil had been lifted and all of a sudden I could see The Dead as an immensely altruistic group of dudes who wanted nothing more than to help the hippies have good trips and spread some calm, love and good vibes.
Saint Stephen can untangle the most twisted trapped feeling at the heights of the universe with that ‘lady finger dipped in moonlight’ beauty and the hippy rose garden that we all need to get back to. China Cat Sunflower provides wiggle and energy and fun. Want to trip well? The Dead know how to help you do that, and in the meantime they spread happiness and love in a dark cruel world. Not liking the Grateful Dead is like not liking sunshine or Robin Williams movies. Those long guitar solos? They don’t get in the way of the experience and soar and glide along with the mind. Who needs dissonance when you have Jerry Garcia’s sweet guitar?
The most difficult side effect so far has been being nicer, wearing tie dye instead of my usual black tee and jeans uniform, and realizing that I like to move with music, not just listen to it. I might also have taken a bit of a left turn with my writing, but that is ok too. And the carrots. I still don’t know what to make of liking carrots for the first time in my life. It is just plain kooky.
If I can live as well as possible while I am breathing on this planet, if I can die well when it is time, well I guess there are worse things I could be doing with some of my time.
Now, ‘scuse me while I kiss the sky, I have some Hendrix to listen to, some Beatles to wonder about that Rubber Soul disease where everything just bounces off compassionless and fails to make an impact, I have some Grateful Dead to sway along with and wonder at the kindness and love of a band that I failed to hear properly before, and some sunshine to drink. Life is as good as it can be. I just hope I can stay housed, stay fed, stay well as possible, and stay with the Boy, at least until I become too much of a burden to those around me, and it is time to move on.