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.
No comments:
Post a Comment