My disability story (that I didn't send)

I want you to know that I understand that I’m not living in reality, but in some story in my head. I wish I could change the story. I wish so much that I could flip a switch and I could be a different person. You know, a happy person or at least someone who isn’t so damned negative. But it isn’t that easy. Believe me, if I could “just snap out of it,” I would.

For 10 years, as my wife’s disability left her increasingly debilitated, I had to carry on, keep up a façade and not crumble. I did it as long as I could. I needed to mourn her loss at each step of the way. Each lost ability was a tragedy that I wasn’t allowed to grieve. I had to suck it up and just do what was needed to care for her. This became an exercise in futility, as she declined and there was nothing I could do to make anything better.

I had to watch her die. I had to witness her go from a horse riding, outdoor loving, saucy farm girl to being trapped into a role we both despised – that of a bedridden MS patient. And I was her reluctant caregiver. I grew frustrated and angry, though she developed a remarkably even tempered attitude toward her plight. She would try to reason with me, comfort me, talk me down – and I was supposed to be the one making her feel better.

So many times I just didn’t rise to the occasion. I sulked. I longed for release, relief, anything to not have to witness what I was witnessing. I made the commitment to never leave her or send her away and I kept to it, but the cost was more than I knew.

I began to get health issues in 2016 that resulted in me taking time off work. First I took family leave. Then when that ran out I returned to work only to become incapacitated by some kind of mystery abdominal ailment. I spent the majority of 2016 (and thousands of dollars) attempting to get answers from the medical profession. I underwent a whole slew of tests and changed my routines and diet around. Although I never got an answer to what it was that had caused me such pain, I did eventually begin to recover, somewhat.

I had been off work for close to 3 months and had even enlisted the help of a live-in surrogate to do the caregiving while I was incapacitated. Once I recovered enough to go back to work, the help also left and I was again in the dual role of caregiver and breadwinner. All the while my wife, Sharon, was steadily declining.

It hit the fan in 2017 when I was mentally and physically unable to do both jobs. My decision was made for me when, after requesting family leave for the second consecutive year, I was terminated from my employment. While I was relieved on the one hand, to have less responsibility, I was cast, full-time, into a role which was increasingly hard to bear.

Watching my wife dying was the hardest thing I have ever had to endure. It has been almost 9 months since she passed away. I still cry more times a day than I can count. Every reminder of my wife twists my heart into a sour knot of pain. Guilt and regret make my life unlivable. I have difficulty engaging with everyday tasks and contemplating the future is impossible. All I see is my own death, creeping up on me in every ache or new symptom of my unknown condition.

I just want to feel good, but it isn’t on the menu. I don’t speak to people or go places. I don’t engage in the activities that I would have thought I’d be enjoying, now that my days are mostly free. Freedom is my new hell. I can’t conceive of anything in this world that I would enjoy. I just want to check out.

I don’t know if I will eventually make it happen or not, but I welcome it if it happens on its own. I long for it. To just go to sleep and not wake up as me is my one wish. But I keep on waking up in this lousy body, with this messed up brain. I need rest, but even at night I am plagued with insomnia. I am tired. Too tired to tell my story.

More notes:

I wanted to try again and attempt to redo my remarks, make them less nasty and negative, but my eyes are killing me already. And when I contemplate the actual writing of it, I can’t imagine it coming out any better or making me any more likeable. Maybe if I got into some program to help me with my mental issues and got somewhat better I could begin thinking about training for a different career. I can’t really visualize that right now, though. I just try to get through a day at this point.

I was waiting for Medicare to kick in before pursuing any more therapy for my psychological issues. I haven’t been helped much by the Sutter-Yuba mental health facility in the past but they were all I could afford without health insurance.