Spasmodic Torticollis, otherwise known as cervical dystonia, causes the most extreme pain I’ve ever been in, (luckily I have a high pain tolerance that is probably due to the condition.) The name means “twisted neck,” and that’s exactly what it is. For me it means I grind my neck due to spasming muscles so hard and so often that the neurologist is injecting Botox into the offending muscles to paralyze them and, while this certainly helps, the improvement is more modest than I’d like.
For me this brings up questions of free will. I’ve had tics my whole life. Tics are not voluntary, but nor or they entirely out of my control either. The muscles build tension that can only be relieved by doing the tic. So if I’m holding a cup of coffee I can hold in an arm jerk long enough to put it down before acting out said jerk. These spams, a relatively new symptom for me, are entirely involuntary. They just happen. I feel an electric pulse and the muscles twitch or pulsate or do whatever the hell they’re gonna do. I have these spams in my thighs and my feet, my arms and my hands, but the neck ones are the painful ones.
I’m not sure where tremors fit into this, but the level of voluntary is in between a tic and a spasm. I can stop myself from tremoring by resting my hands, but if I hold my hands up they’re gonna tremor at least a little bit and I can’t stop it.
Just some thoughts on my increasing loss of free will over my own movements.
Even the mentally healthies of individuals will come out of prolonged solitary confinement with psychiatric issues and emotional distress. Add a psychotic thought disorder, not to mention hallucinations, to the mix and it, in my not so humble opinion, is torture.
Humans are inherently social beings. During the nine months I was incarcerated I was in solitary most of the time for stretches as long as a month or more. But some people are deprived of human interaction for years at a time. They put us in a cell too small to even pace in with nothing but a toilet, a sink and a concrete slab with a pad on it to sleep on (sleeping on concrete.) Theoretically inmates in solitary are supposed to be taken to an outdoor cage for an hour a day, still alone but at least able to feel a breeze. In practice, however, you’re lucky to get this twice a week.
The way I handled solitary was to retreat to an inner world of voices and delusions. Indeed, I elected to be sexually assaulted and raped on a regular basis over going into solitary “for my own protection.” Still, they continually put me in solitary any time they decided I was in danger, be it from myself or others. They can say it’s not a punishment all they want, but they aren’t the ones sitting there alone in that cell.
After two years of relying on a cane I had a dramatic upsurge in mobility problems and physical symptoms including dizziness, difficulty moving and exhaustion. I spent four days in the hospital over last Christmas and was hospitalized again last month, eventually receiving a diagnosis of Functional Neurological Disorder.
For me FND manifests primarily with difficulty moving accompanied with generalized weakness, exhaustion and dizziness. It seems to be progressing, and has gotten to the point where I’m having difficulty with fine motor movements like typing (this blog took a while,) using a fork, turning pages in a book (or even holding the book sometimes,) and some of the activities of daily living like bathing and dressing.
Unfortunately it seems not much is known about FND. My neurologist was unable to suggest any treatment except physical therapy. And so I’ve started going back to the hospital as an outpatient for special neurological physical therapy. So far I’ve only had two appointments, but they did put me in a standing machine. It gave me a major wedgie but it was the first time I’d stood in over a month.
PT said it would be a long road to walking again, and so I’m navigating the world in a wheelchair or, in the case of long distances, a motorized scooter. It sure is a brave new world. But I’m using the manual as much as I can because I figure that way at least I’m exercising my arms.
I’m having great difficulty moving my legs and increasing difficulty with the arms. I’m tired all the time and spend most of the time in bed. And my own online research indicates that FND has the potential, even the likely potential, of progressing further. I’m hoping to avoid the world of speech machines and nursing care, but I think it’s better to know what I’m up against.
So I’m working on all this, but I have to admit, right now FND is kicking my ass.
Chicago MCC is a federal prison right in downtown Chicago that appears to have been designed after Azkaban (a tall triangular tower.) I was an inmate there for a couple months and for those of you planning on entering the federal prison system, this is one destination you won’t want to miss.
I was there for a competency evaluation to see if I could do the whole trial shit. They ultimately decided that I couldn’t, but it took them two months to reach that conclusion. I was initially given the opportunity to be in general population on the thirteenth floor, which was very welcome as I’d arrived after several months of complete isolation. I lasted about a day in general pop and was then sent to solitary in the special housing unit (SHU) for banging my head. They left me in restraints for about ten hours, then I was kept in solitary for a couple weeks.
But eventually I made it back to floor thirteen, and having the opportunity to actually interact with other human beings, even though some of them were dangerous criminals, felt like being reborn. We were given the opportunity to go to the gym in the basement of the tower twice a week and the yard on the roof of the tower another two times a week, plus we had weekly trips to the law library. It was a pretty sweet deal compared to the other prisons I was in, and although I was victimized by other inmates, it wasn’t sexual like it was in other places.
I felt bad though when one of my friends kindly told me, “Hey man, they sending me to a max.” Most of the people there were pretrial, and they would be sent all over the country after conviction, winding up wherever the government wanted to force them to work for twelve cents an hour. But for the time I was there I had some friends and some relatively sympathetic doctors. It was perhaps the least rough prison I was ever in. So thanks to Chicago MCC.
When I’m writing a longer story I try to write at least a little bit every day so I don’t lose track of the plot. For picture books, I get a first draft in two or three hours and then edit it over and over again for several months.
Seeing children enjoying something you wrote is a truly magical experience, because the world children live in is often so magical. Especially the little kids. For them, everything is still possible. They live in a world without limits, a world where the crushing reality of broken dreams has yet to fall. So if I can make up a story that’s as magical and innocent as they are, then that’s my cure for the clouds and rain.
Although I came out as transgender eight years ago, I’d been gender fluid, that is sometimes male and sometimes female, until last year. I’ve been full time for ten months now.
Weight Watchers is what finally gave me the courage to take the plunge. Passing and looking good is so much easier sixty pounds down. And, as I continue to lose weight, I get to get new female clothes, so I stay motivated.
It’s true, and endlessly frustrating, that people who knew me prior to transition still use the male pronouns, sometimes by accident and sometimes on purpose. But, after several months of practice, I’ve gotten to the point where I can almost always go out in stealth if I’m with people who never knew me as a man. I took voice classes too, and I’m almost perfect on the phone (I think I’ve been read as male on the phone maybe two or three times in the past six months.)
I have two months to go before completing what they call “the real life test.” Basically it just means you’ve been full time for a year. But I know I’m never going back.
I’m never finished writing. Publication (and I’ve only done it twice) only comes when I can’t find anything with my editors to make a story better. No doubt I will find things I don’t like after the physical book is already in my hand. At some point you got to just let a story go, even knowing there’s always ways to make it better.
But I think there’s a huge difference between fiction and non-fiction. Of the two books I’ve published, one is fiction and one is not. The made up story is much more like a child. You’ve invented all the characters and nurtured them, watched them grow and change through every rewrite. And, I have to say, I find myself unable to let go of Sammy the dragon and his friends even now. That’s why I’m turning it into a series. Sammy shall live on! I’m simply not done with him yet.
But with my memoir I was my own protagonist. And, I have to say, I was eager to get the story out there and be done with it if for no other reason than how painful it was to relive my experiences and tell readers a truth I felt needed to be heard. But going into details about a PTSD experience inevitably upsets you all over again.
I don’t celebrate when I finish a story. I wait to celebrate until publication day (and I have one this month!) But hey, that’s just me.
Picture books! Hands down! Here is where silliness and pure imagination are the most rewarding.
A major challenge with picture books is to get across a message to kids without being preachy. Ideally with a fun and original world and loveable characters. Unlike grown-up books, picture books are designed to be read over and over again.
And they’re short. I’m about to publish one that’s about 750 words. Given that they’re usually large hardbacks with colored illustrations, it’s an expensive venture. So publishers only take the best stories, and they edit the heck out of them. That’s the challenge of picture books. But it’s so worth it!
As I was gearing up for launching the new year, a year in which I’m putting out two books, I had a little trip to the hospital. Coming in on Christmas eve, I spent four days there, and the only time I was allowed out of bed was for a few minutes of physical therapy every day, and they had me using a walker.
I had been in the emergency room several days before, and a CT scan found a throat infection. I was sent home with antibiotics. But they didn’t seem to work, and the illness began to zap away at my strength. Eventually it got to the point where my blood pressure went down every time I tried to stand, and consequently I started having balance issues. And so the advice nurse told me to go back to the ER, by which point I was almost completely non-ambulatory. After several hours I was admitted to the hospital, where I stayed for four days.
But I got better. My throat didn’t hurt so much, and I was sent home. Ever since I’ve been getting physical therapy at home. The main exercise I’m doing is trying to stand while holding onto the kitchen sink. Gosh does that drain me. I never knew something so simply could be so hard.
What I’ve learned from this is that being young doesn’t make one immune from health problems. But having the support of your friends makes all the difference.
As you look back on 2017, with all its successes/failures, if you could backtrack, what would you do differently?
I think, overall, 2017 has been very good to me. I signed my first book deal for a book that is both my first children’s book and my first work of fiction ever to be published. In addition, I’m putting out a new edition of my memoir. And oh yeah, I won my first book award! Well, that was for 2016, but I didn’t find out until this year. And my successes have gone beyond the written word, as I’ve lost over sixty pounds this year. Oh yes, it’s been a very good year.
So what would I change if I could? I need to work on my publicity and marketing skills, which I hope will come with time. When I’m doing a signing and selling books in person, I don’t know what to say to secure the deal and get them to buy the book. Given that the successful author has to sell several books at several events, this is something I definitely intend to work on as I go into 2018. Social skills have always been a challenge for me, but I have to be a good saleswoman.