Last Monday I was sitting at the a table in the local hackerspace, just having fetched and consumed dinner along with a couple of others. Suddenly I felt a tingling sensation in my right leg which rapidly got worse. Within minutes the leg had gone fully numb except for occasional surges of pain in the appendage. For the next hours I had to wait and hope that I'd get the sensation back in the leg before I could cycle home.
Last night I got woken up because my right arm was tingling and hurting. After a couple of minutes the pain lessened and I was able to fall asleep again. For the past days I can feel a numbness and mild discomfort in both my right leg and arm. To say that this is disconcerting would be an understatement.
For the past twelve years, it's been made very clear to me that do not know what I am talking about. All pains I merely imagine. Everything that I think my body is, is false.
It hasn't just been with medical things, either. Working my last job in the Netherlands was unpleasant and traumatising, along with the horror that was sharing an apartment with someone who did absolutely not have my well-being in mind and which ultimately led to me losing all of my belongings. It's not been easy to keep believing that things could get better.
Meanwhile I have a good job at a great employer, yet to get there hasn't been easy, either. Medically some progress has been made, but it looks like I still have many years - if not decades - ahead of me to get anything like a resolution. Anything beyond this... just no. Forget it.
Whenever I try to think of my future, or merely try thinking of heading to the run-down apartment I currently live in, my mind practically blanks out in fear. When thinking of contacting a real-estate agent to get started on finding that house to buy, there's about 1-3% of my mind which feels up to it, with the rest again blanking out in complete terror.
Most of my days are filled with the struggle against that general sensation of terror, accompanied by brief or longer periods where I find myself thinking about suicide.
When people then tell me to think about how great it would be to have a house of my own, and that I should look at real-estate websites for homes for sale, they are completely missing the point. Such things are guaranteed to make me feel that terror because of all the uncertainties and crushing disappointments which come naturally with such things. It's a sensation which I can resist for a short while (minutes, maybe), but beyond that it will invoke a suicidal depression because of it having drained my energy and with it the resistance against such thoughts.
In short, I can't do this.
I can maybe work up the energy to contact a real-estate agent and pray that this will suffice. I would also have to get a loan together, which would also be very emotionally taxing, but very likely less so than dealing with landlords and kin. Being confronted with my actual monetary worth (or lack thereof), is depressing, but at least I wouldn't be judged by anyone as a person.
Yet none of this will be easy. I'm not sure anyone here comes even close to understanding any of this. How would I even be able to explain any of this to someone else? Between being intersex, gifted, hyper-sensitive, ambidextrous and severely traumatised, I don't really feel like I am inhabiting the same universe as others. It would definitely explain why others keep expecting me to be able to do all the things which they can do.
I have a traumatic disorder. I cannot function in daily life the way others easily can. My traumatic experiences colour the world around me in a bleak and horrifying way most of the time. I cannot bring myself to trust people. Not yet. Not at this point. Not after everything that they have done to me. It frustrates me so incredibly that people will listen to me talk about all of this, then smile, nod and just tell me 'good luck', as if none of what I experienced and suffered was relevant, or real.
The chronic pains I suffer are real. The traumatic disorders are real. I can choose to ignore both, but doing so will not help me in any way. Other people ignoring both is not helpful, or right. Both have to be acknowledged and handled appropriately. Anything else will just increase my suffering.
Maybe I'm just misunderstanding this all, though. After all these years of not knowing what my body is, or who or what I am, and having multiple psychologists and kin judge me as being delusional, it could be me who is the problem.
I just want an escape out of this literal madness that I still find myself trapped in. Something has to make sense at some point. Probably. I hope so.
I have no clue who or what I am. Whether up is up or actually down. Maybe left is right and right left. The sky is blood-red, not blue. Everything can be true. It's all relative. Maybe everyone is wrong. Maybe this is all just in my mind. Maybe this is what it feels like to go crazy. Just an endless nightmare.
Maya
2 comments:
Dearest Maya,
I so enjoy that you share your life with me. It does me so well to see you working on yourself. To see you going forward. To see you working. Even though it is hard and it is impossible to know what to do next sometimes (Who could possibly know?) you keep making positive progress.
I know that sometimes progress is slow. Other times it must seem like you are going nowhere or maybe even backwards. But you are still making progress. Even somebody who is outside, like myself, can see. You are sorting through and finding value in some places and you are learning other places to avoid. The thing is though, that you keep working. That is success in its own way. Things will fall into place in time. That is how it works. Everything will be fine even if you have to tough it out for a while.
Personally, as I look at my own life I see so much failure. I wish that I had been a better parent. I wish that I had taken better care of myself, and many other things. Still I am nearly finished. After my next surgery I shall finally be rid of an infection (strep infection) that has basically locked up all of my joints. Wrists, knuckles, especially my knees and hips. The doctors kept telling me "fibromyalgia." I kept telling them "no, it is real." They did not believe me, but soon it will be over.
I also will be moving soon. I have purchased 10 acres of land in Utah. Very beautiful, but in the middle of nowhere (literally). I will slowly build a small block home there with a wood burning stove and solar electricity. I will plant trees and perhaps raise a cow. I am looking forward to this as I simply do not like people that much.
The point being that if we continue to work, everyday, we will be fine. It is really that simple. It may not be easy, but it is simple. Just work. Just do it everyday. everything will be fine =)
Also my friend, you are always welcome to visit me. I am not rich, but I have lots of space that I would not mind sharing for a while.
~Devin
I'm glad that things seem to be working out for you, Devin :)
In my own little world I just try to do at least something every day, just to stay active, as you said :)
Post a Comment