Braingate, Day 138 (Hello delirium, my old friend...)

Can't sleep. Experiencing insomnia in anticipation of tomorrow's CAT scan and follow-up consultation at Mass Eye and Ear's Sinus Center.

The more I think of it, and the more I analyze the quality of my sensory inputs, the more I feel like my grinding and TMJ problems--the jaw soreness and clicking, and the unrelenting ear pain, pressure, and tinnitus that come along for the ride now--are a SYMPTOM of the distortion and pressure in my face and head, and not a/the CAUSE.

I've noticed that, when I lie down such that the left side of my face is touching the pillow, the feelings of distortion, pressure, vertigo, and tachycardia and palpitations become elevated substantially.

The feelings of pressure and sharp, hot, burning, stinging, stabbing pain in my face and my head feel like they're searching for an outlet, a path of least resistance. I feel like they find this path through the ridge on top of my head, which is now more acute than it's ever been in my life, and prominently extended all the way down my once-flat forehead.

My forehead and the top of my head are becoming narrower, evidenced by recent changes in shape that can be felt by anyone with a pair of hands, and the intense pain and pressure in these specific areas that's been corresponding with these changes. And my upper jaw is becoming wider... evidenced by the intense pain and pressure in my upper jaw, extending back, through the depth of my palate, into my rear nasal cavity, the shifting of my teeth, and the subsequent loss of my incisor.

If I want to move past these issues and restore the quality of my life to its former levels, I'm convinced now that everything is riding on my concerns being taken seriously tomorrow (well, at this point, today), and Wednesday (my maxillofacial surgeon appointment at MGH OMFS on Wednesday).

I just want to be taken seriously.

I just want this nightmare to end... I'm tired of wishing I was dead and having responsibilities and obligations that prevent me from granting my wish. (I'm not going to kill myself. I manage my suicidal thoughts like anything else. I graduated from a psychiatric hospital day program a few weeks ago... It was a complete waste of time. My problems are most definitely physical in origin... My intrusive suicidal thoughts are a product of being in severe chronic pain for so long while being told over and over that it's "all in my head". I have my psychological mechanics of dealing with anxiety fairly well under control now.)

I just want to be able to work again, to pay my mortgage and my bills again... my overdraft fees just keep piling up at this point, while Unum still fails to pay my LTD claim. (My old doctors at Hallmark Health are taking their sweet time in faxing my records to them.) I've unfortunately been in a couple of financial circumstances like this before, but that was due to being laid off and getting caught off-guard. I'm still employed today, just working zero hours due to severe memory problems--short-term and working--caused by my chronic pain. Software engineering is impossible without the ability to use my brain for complicated cognitive work right now. I know some people would be able to work through this kind of an experience anyway, but for an autistic guy like me with hypersensitive sensory perception, it's enough to make all the difference.

I just want to get on with my life and leave this all behind me.

Is that really so much to ask?

Braingate, Day Infinity

It feels like it was a lifetime ago when I first wrote about my ongoing struggles with the steady deterioration of my mind, my body, and my (quality of) life.

I wish I could say that everything has changed for the better and I'm living a dignified life again.

Instead, I sit here in isolation reflecting on the stress and the monotony of the last few months, wondering where I went wrong. I spent three months of my life waiting for an appointment with a provider who was set on turning me away before I ever stepped foot in her door. Those three months of false hope took their toll on my life. When Dr. Jeyapalan at Tufts, the doctor who was supposed to help me get my life back, pulled the rug out from under my feet in the cruellest display of bait-and-switch I've ever experienced... I fell hard.

I became a shell of a human being, devoid of hope for the future. I could no longer imagine any tomorrows. With her arrogance and indifference, I was relegated to a state of existential limbo.

You see, according to her, my problems were just anxiety ceaselessly manifesting itself in progressively debilitating physical ways... regardless of my attitude, temperament, or levels of emotional excitement or engagement. And because of her title and her tenure, all of my other regular health care providers decided she was right. So much so that my psychiatric prescriber dropped me as a patient, without ensuring I had a viable backup plan and abruptly cutting me off from my supply of antidepressants, merely because I didn't feel I could afford the expenses of ineffective talk-therapy. I was experiencing a medical crisis! No, I didn't want to talk about my feelings; I wanted to get help for my problems!

I couldn't find a new prescriber.

My comedown from my psych meds was rough. I became deeply depressed and suicidal. I became even more irritable and angry... reactive... explosive...

I checked myself in to a psychiatric hospital day program, mostly to save myself from my obsessive, ruminating mind. I had no hope, no answers, no professional support of any kind, and Unum's disability payments--which weren't going to cover the mortgage, anyway--were about to stop. I felt like my life was being ended for me.

I started to fit some pieces together. Could the un-corrected birth defect in my head--craniosynostosis--be the culprit? I started searching for cases of other cranio adults with symptoms like mine. My search eventually led me to some online support groups, filled mostly with parents of cranio babies, searching for traces of hope and reassurance in the dark voids of uncertainty that reality throws at us all, and adults who were given the surgeries they needed when they were young and small, showing everyone the way through. I was desperate for validation of my experience.

I found it. I got recommendations for specialists across the country, and across the globe, who have performed corrective surgeries on adults. And I was made aware of another condition that I'm now certain is directly responsible for my new hell: chiari malformation. Not only did this explanation make sense, it also provided deep insights into phenomena that I've experienced since childhood that I never knew were abnormal, didn't know how to recognize and express, or couldn't convince anyone, even my doctor, to hear about.

I now have appointments pending with a neurologist and a neurosurgeon at MGH.

Unum isn't paying me anymore, and so I don't have an income right now, even though I'm still technically employed. That's eating at me in a massive way. There's no way I'm going to be able to pay the mortgage next month... I've already exhausted my savings.

But I finally have a way out, shimmering on the horizon, that doesn't involve measures too drastic or too permanent. MGH has become my Mecca.

I hope Unum pulls through with my new long-term disability claim. My family needs an income to survive.

I hope APS still has a place for me when I eventually recover from this. I can't imagine spending so much time at a home away from home with anyone else. I can't accept the possibility that I won't recover.

I hope I finally get closure at MGH. They're my last hope. They're receiving every last bit of fight I have left in me to spend.

I hope I don't end up receiving any foreclosure notices. I intend to spend the rest of my life living in this house, however long that is. It is my home and I've fought too hard, even declaring bankruptcy to halt foreclosure proceedings in the past, to lose it now. (Read between the lines. Yes, the thought terrifies me, too.)

I hope my wife and children can still find a way to respect and love me through this ordeal. It's left me feeling like a failure at life, hollow and inept. I neither love nor respect the irredeemable mess that I've become, and I can't imagine why or how anyone else would, either.

I'm doing my best at life. I hope it's enough. It is all I have.