A Life Altering Experience – Part 2
So many losses. Mercy. Words painted gray with disappointment in my head. What was wanted didn’t come. What came wasn’t wanted. We’re left with shattered lives. In the dark, there resides a pounding and persistent uncertainty between us. Ron isn’t who he was. I’m not who I was. The lost parts of ourselves are vast. How do we proceed with a life altering experience? Good Lord, what’s next?
With a blood clot still in his brain two years after his stroke, Ron, tried to settle into the reality of a different life, and so did I. Physicians had decided that the episode of dizziness that Ron had at work was actually his first stroke, not a pinched nerve. Well, that pissed us off. You mean he was misdiagnosed? How do you miss a stroke? A little more than a week later after his “pinched nerve” on that September day, a major stroke turned his life upside down.
There were many activities he could not do. I was sad for him. He hated taking blood thinners to prevent additional clots. He hated the caution he needed to take so he wouldn’t bleed out from unintentional cuts or injuries. He hated me pushing him to do more than retreat to the sofa. He was quiet, withdrawn. Depression was a companion. He battled to accept the many losses of things that were once routine: his job, playing sports, being able. Now he was disabled with no job, and could only watch sports.
It was about this time that I noticed a tremor in my hands. Like that jitter when you’ve had too much coffee. Except I didn’t drink coffee. Maybe it was a fluke. When I saw my PCP, she thought it was anxiety–stress from Ron’s condition and the stress of my job, and stress of medical bills, yeah, stress. No doubt. I had that!
Anxiety medication did nothing, the tremor remained. Then one day at work when providing an oral report in the daily meeting that takes place, the paper I was reading from was quivering. It was quivering because it was in my hands.
Now I was having anxiety over this alleged anxiety!! Then, while in treatment to determine the cause of my hand tremor, on January 18, 2012, my employer of ten years, suddenly and without warning, “eliminated my position.” What? I was devastated. Wait, what? Crushed. Hurt to the core. I laid in a fetal position betrayed. No one could console me. I didn’t understand. I did nothing wrong. Why did they do this? Was it my hand tremor? Because I was unable to hold paper still?
Ron was on disability and I had no job. Fear pooled in all the spaces left in me.
There were many tests of my nerves, muscles, brain, and blood. There were second and third opinions from the best movement disorder clinics. In April 2012, a month before Ron’s third stroke, at the leading Movement Disorder Clinic in the country, I was diagnosed with Parkinsonism at Rush Memorial Hospital in Chicago. I have the symptoms of PD, but it has not progressed into the full-fledged disorder.
I must seek a way to put myself back together because I feel like someone dropped me on the floor. I’ve broken into pieces. What was God doing? God broke me. He dropped me and I broke. What was I going to do?
I didn’t have much time to reflect on that question. Ron came to me saying he had a headache–that’s kinda a big deal when there’s a blood clot lodged in the brain. He also had sudden vision problems.
Back to the hospital where they again tried to remove the blood clot stuck in his brain. No go. It’s still in a location that they didn’t want to mess with. The physicians agreed he should be transferred to Northwestern Memorial in Chicago where leading neurosurgeons were having some success with cases like Ron’s. Well, that could be a life altering experience.
Nope. After a gazillion tests at Northwestern, they weren’t going to touch it either. But they did discover that Ron’s left carotid artery in the neck is 50 percent blocked. Wonderful. Ron’s lodged blood clot is on the left side of his brain. Oh, AND, he’s diabetic. He’ll need insulin injections, twice a day. Okay, so now I know this was some kind of joke, right?
So that’s the story of the past six years. This is how I became a Life Coach and blogger. Ron does a lot of volunteer work at church and it’s given him a purpose in life and it makes him happy. He gets tired quickly, his speech is off, his attention span is non-existent, and he forgets things most of the time. But he’s stable.
We’re both on disability. Oh, and, we’ve lost everything.
I know there are many people with disabilities that are in even worse situations, I empathize. Tell me how you make it through the day. I want what I don’t have. I wish things were different–the way they were before. I play moments the way I want them to be, not as they are. Damn Reality! A life altering experience.
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