Friday, June 9, 2017

Three-page Letter to Doctors (a.k.a., I Have Had It, Officially)

I am writing because I have some concerns regarding my treatment, and—as an autistic person—I feel most comfortable expressing myself in writing. As such, I may not have provided the most appropriate descriptions of my current situation at past appointments. Following the rhizotomy, I experienced severe pain at the site for approximately 3 weeks. Since that time, I have had no pain in that area whatsoever until 2-3 days ago, though it is intermittent and slightly different, which leads me to believe it may be associated with aggravation of problems in other areas. As I mentioned previously, the most severe pain occurs directly to the left and right of the vertebrae in my lower back, as well as right over the spine in the same area. This deep pain is accompanied by muscular pain most of the time, which ranges from tightness to a feeling of cramping. I also experience pain very far to the right and left (more intense towards the right), at or above the crest of my hip. This pain also causes the muscles in the area and in my side to spasm. Over the past year, the pain has seemed to worsen in these places, such that any bending, twisting, or sitting (or staying in any position for too long) causes dramatic spikes in pain. However, I am in pain all the time. The pain seems to be accompanied by a feeling of pressure. I feel physically weighed down in this region, and I feel like I cannot stretch to full extension. Chiropractic adjustments seem to help tremendously with relieving that feeling and the pain that radiates to the outer regions of my lower back. These also help with the pain around the center, though the effects do not last long at all (8-36 hours), and attempting to bend, twist, or move too drastically (which isn’t very much these days), will cause the symptoms to return.

At my first appointment with Dr. Gerszten, I was told that the rhizotomy would be the first in a series of steps aimed at identifying the source of the pain, in the event that the treatment did not result in complete resolution of symptoms. When I was told that I was again being referring to another facility, this came as a shock. I’m unsure of what this means. Will this treatment occur in conjunction with these other steps, or am I being passed along again? I do not mean to sound harsh in this case, but it’s a very frustrating experience. I don’t think I have been able to express just how, but please allow me to try.

The only things that have been able to improve my level of functioning in life—alleviate symptoms of anxiety, depression, overstimulation/sensory overload, intrusive thoughts, and many others—have involved physical activity. Previously, I was preparing to compete at the national level in bodybuilding. I have won several competitions based on my ability to dance. I have played sports for my entire life and built a career as a fitness professional while striving to achieve my long-term career goals. Over the last 2.5 years, I have watched my entire life fall apart. I spend most of my time lying in bed, unable to deal with the thoughts or find any way to stop them. (Medication is not an option. I have tried roughly 2 dozen in my life, almost all of which have resulted in severe side effects. The others blunted my ability to feel and caused depersonalization to varying degrees.) I cannot complete even the simplest task due to a severe regression of executive functioning skills, which is why I have spent hours every day since the phone call regarding the next step trying to write this message. Every task, even getting up to go to the bathroom, has become this arduous. I cannot do very many things myself. Until several months ago, I was able to go to the gym, albeit doing very basic workouts in comparison and requiring assistance to be able to move throughout the facility and lift things to the appropriate position. However, the pain in the central region of my spine has worsened such that this is barely possible, though I continue to try to do as much as I can, within reason. In addition to greatly improving my mental health, these activities have given purpose to my life. I have had none of that over the past 2 years. My entire life has been consumed with pain, just making it through the day. (I’ve also attempted various forms of therapy with no success, and I’m very familiar with the psychological aspects of pain.) Even at my best over these past 2 years, this level of functioning has been unacceptable because I am still incredibly trapped and dependent on others. I want to begin living my life again, and I’m worried about this next option.
I do not want to attempt conservative treatment—lie in bed for 90% of the day—until others decide that I am old enough for surgery. Do the years until then not matter? Or the years I have spent barely leaving my house, losing my home several times, losing contact with friends because I physically cannot do anything with them, losing opportunities to advance my career or return to school? Even at its best, again, it has been unbearable. But I’m not the type of person to show pain on my face. I blame that on how I was raised and a general insensitivity to pain until it becomes life-threatening. (Example: I broke my hand in several places in 5th grade, but I kept skiing for three more hours before I told my teacher.) But I cannot handle living like this, mentally or physically. Even now, I don’t feel like I have adequately expressed the level of distress this causes.

Some options aimed at identifying the source have been presented to me in the past: facet joint injections or rhizotomy (bilateral), another spinal injection, discogram, etc. I’m absolutely willing to undergo all of these, but I need to know the plan, its likelihood of success based on published evidence and clinical experience, and what happens in the event that the plan fails. I’ve also considered asking about Celebrex, as I know that the risk of stomach issues like I had experienced with other NSAIDs is lower. I have had several injections, undergone physical therapy three times, tried multiple NSAIDs, tried two anticonvulsants that both resulted in a reaction referred to as DRESS syndrome, have been through psychological counseling/treatment in various forms, and I just don’t know what else to try at this point. What else could give me my life back. And that is important to me: MY life. And that’s not a life of sitting around, watching movies, and the like.

I do have some additional information about symptoms that might be interesting. When I have been able to make it to the gym, I squat using a weight belt, which I began doing 6 months ago. After squatting while wearing the belt, I’ve experienced a complete reduction in pain upon taking it off, which lasts 20-40 minutes. I do feel some level of pain if I attempt to move suddenly during these times, but I found this to be quite curious. The problem I have is that, even in pain, I can still do a 2-minute plank (down from 4 min since injury), and my abdominal muscles always outlast my back. I have attempted to do back exercises to strengthen these muscles as well, but the issue is not about form or weight. If not in pain, I feel confident that I could do everything I could before. However, I have been experiencing another symptom that I did not believe was related. I’ve been having pain in my very low abdominal area that extends to the groin on the right side, which seems to worsen with strenuous activity or sitting completely upright. This has been going on for 8 months, though I originally assumed it was related to the general abdominal swelling/discomfort I have had for about the same amount of time. I have been unable to make my appointments for an ultrasound, so I still do not know about this. It’s been difficult to leave the house, though I intend to reschedule soon.
I apologize for the length of this message, but I do not feel that I have adequately explained how desperate I am, how incapacitating this is, and how much work it takes (physically and mentally) just to make it into these appointments or leave my house in general. Again, this is not acceptable to me, and I can’t continue living this way. If the best conservative treatment can offer me is being able to shower and walk down the street—and not allow me to do things I love—then this is not okay with me. I’d really like to discuss an actual strategy. Thank you for your time, and I hope we can talk soon.

Friday, April 21, 2017

Inherently Autistic Ranting (This should be the title of this blog.)

Every time I try to write about my experience as an autistic person, I fail miserably. I get overwhelmed by the very thought of organizing all of that information into something palatable and succinct enough for neurotypical people to remain engaged. Do I begin with my childhood, during which my queerness and neurodivergence were all too evident to everyone but me? During which I remained blissfully unaware that others did not experience the world as I did, until—little-by-little—I learned the hard way that my way is not the only way, that I am not always right, and that no one really wants to hear me talk about Ghostbusters for three hours? Or do I start with telling you about my here and now, about how the last several years have taken me to the darkest corners of autistic experience—where most would have me stay—and brought me back to one of the most fundamental lessons of my millennial childhood? “You are awesome, and fuck the part of the world that dares to tell you anything different.”

I still don’t know where to begin, which I suppose is in itself a very autistic thing. I remain stuck on the same idea, going over the same list of pros and cons in my head ad infinitum. Unless you give me a place to start. Tell me what you want me to write about, specifically, and I’ll have a hard time stopping. Even to sleep.

Let’s just pick something and say fuck it.

Delayed understanding of friendship? Incredible memory? Obsessive? Executive dysfunction? Speed reading? Visual thinking? Experiences of abuse? Being erased? Feeling broken or inhuman? Intense creativity? Comorbid mental health disorders? Well, fuck, here we go again.

I’m sure you’ve noticed a pattern here. Most of the items on the list are inherently negative. Many of them conjure images in my head that almost instantaneously lead to flashbacks of traumatic experiences—flashbacks from which I can rarely escape, with or without help. Therein lies the problem. Almost no one believes that there is anything positive about being autistic, unless you count those who fetishize certain “extraordinary abilities”. I’m a disorder. A disease. A sub-human creature who lacks the understanding necessary to be treated on par with my neurotypical peers with regard to human relationships, employment, education, and healthcare. I’ve been the subject of abusive situations more times than I can count, often believing that I deserved it because it wouldn’t happen if I weren’t like this, if I understood the lessons they keep trying to teach me, or just because people like me need to be treated that way in order to function in this world.

Even in trying to discuss my positive experiences as an autistic person, my mind is invaded with intrusive thoughts about how absurdly non-positive most such experiences have been. [Experiences removed for the internet because I'm not ready for that.] I try to remember, experience, and feel happy things. Positive things. Even okay things. But they are immediately tainted by these memories. I don’t even have to try. They’re always there. I mean, I still feel horrendously guilty about shit I did 20-25 years ago. My emotions are almost always all-or-nothing responses.

I keep getting drawn back into endless conversations about how I just don’t see things clearly, I’m misunderstanding something, or about how it’s not worth it to try to talk to me “when I’m like this”. (You mean always, then. Just because I can hide it doesn’t mean it’s not there.)

My mind doesn’t let go. It can’t. I’m trying my best to be proud of who I am. What I can do. But these things are inevitably overshadowed by past, present, future, and imagined negative experiences.
It’s hard not to feel broken this way.

I want to be in a place where I can write a narrative that isn’t going to evoke feelings of pity or make people really glad they aren’t me. Each time I think that I’m ready, I’m not. But maybe I can try.

I am an autistic person. I see the world in ways you couldn’t fucking imagine, from the intensity of colors and sounds to the images and thoughts that move too fast for words to the being logical to a  fault. My experience in this world is not one of deficiency. I am not lacking something essential that neurotypical people possess, for if I were to define any of those qualities as essential to my being a complete person or even a person in general, I would inevitably be denying my humanity and that of others like me. I would be justifying the abuse and manipulation of autistic people. The myriad research papers that describe me as a burden to my family, “caregivers”, and society in general. I am a scientist considered by science to be incapable of acceptable existence, whose self-awareness is regarded as pathological in someone like me but as an example of “practicing mindfulness” in others. My experiences and words cannot be trusted. I cannot be trusted. I am invalid. I am inhuman.

Take your blue ribbons and shove them up your ass.

I don’t need your fucking ribbon. I don’t need your awareness. Like, you can be aware that you’re hungry, but unless you do something about it, you’re still going to be hungry. 

I need you to listen when I tell you that, no matter how many times I force myself to go out when I’m on the edge of a meltdown—whether I successfully avoid one or not—it’s never going to get easier. I can break your fucking leg a dozen times, and it’s not going to get any easier to walk on a broken leg. In fact, the more I do that to you, the more problems I’m going to cause, and they’ll likely last quite a long time. I need you to just accept that I have to do things my way sometimes or they’ll never get done in any reasonable amount of time. I need you to stop asking me the same questions or wanting to explain the same reasons for things over and over again, like you’ve never heard me mention them before. I need employers to understand that you should judge people based on their qualifications for the job, rather than based on how much fun you have talking to them during the interview. I need society to stop equating the worth of a human being to their productivity or palatability. “You can’t make money for us, so you deserve to die.” “Your life isn’t worth living if you can’t amount to anything.” I need people to stop thinking that asking kids with disabilities to the prom out of pity when you have no interest in pursuing a relationship with them is manipulative, self-serving, and cruel. I need doctors to stop screaming at me. Or talking about me like I’m not even in the room. Or ignoring my concerns. I need people to start caring about autistic people once they aren’t cute little kids anymore.

I need people to stop thinking that my right to exist comfortably and be a part of this world is my fucking problem. That I have to earn my right to be treated well. To not be subjected to pain, isolation, etc.

No, I don’t need people to understand that “we’re all the same”. I need people to understand that we’re all fucking different and that this is actually okay. I don’t need to have my unique experiences erased or glossed over to be considered human. I need people to stop being shitty assholes that think that the world shouldn’t be welcoming to as many people as possible. I need people to stop believing that, if only I weren’t autistic, I could have all these things that other people have. To stop believing that being in a relationship with me is a favor. A gift. A miracle. That loving me is a sacrifice. That I’m lucky no matter who dates me because I’m lucky to have anyone at all.

Fuck you.

This could go on for quite some time. I meant it to be a bit more organized. Intellectual. I meant to use more clever phrasing and take my time.

Instead, I needed to be angry and let you know that I don’t need you to decide whether my anger is justified. That you don’t get to decide that, and I wouldn’t care either way. 

Wednesday, April 5, 2017


I can't believe how long it's been since I've written anything here. Most thoughts have been shared in posts on Facebook or stored away in my phone. I felt the need to write, but nothing's coming out right now. I worked on an article about the potential ability of scopolamine to treat depression.

For some reason, I'm assigned a lot of articles about mood disorders and back surgery. The universe is ridiculous.

This is as far as I've gotten today:

"I'm taking the month of April to get caught up on not getting caught up in my own head, to write more, to reach out to those with whom I've lost touch just trying to keep afloat.

To my friends who have been patient and have been there waiting, thank you for your understanding. To those who have forgotten about me and those that wish I would be less vocal about my ongoing struggle, I express my disappointment, not anger. I may not be the face you think of when you think of autism, chronic pain, or chronic health problems, but that is entirely why I share so much. People deal with far more complex issues than they let others see. I desire a world in which people are free to share what hurts and heals them, rather than feel ashamed of being human.

This world is more than selfies, good reads, and bitter queens. I want to share my soul, and I want to see yours.

You see, I've always felt that the voice I use when writing is my real voice. Everything else is an approximation. An imperfect translation. The written word is the first way I learned to connect with myself, to reflect and learn to deal with a world that could never understand how I'm wired. I can feel more emotion in perfectly placed punctuation than in trying to decipher the sadness in a stranger's face. This is how I am able to think. To love. I feel the rhythm of the written words, but not the spoken words.

Not writing feels like having duct tape over my mouth.

We're not what or who you think we are. Then again, that's usually how it works."

Whether or not I follow through with anything is up for debate. I've felt nauseous and fatigued for several days. I need to sleep.