Gifts From A Stroke: A Hard Look At America’s Health Care is not just my story. It is podium for others to share their stories. I will publish more stories as I finish my book. Here is Gerrit’s Story. Please feel free to share:
My stroke experience began in August 2003 with what felt like a sudden crick in my neck. The pain started interfering with my sleep and for some reason I would begin to black out if I held my head a certain way. I went to see a chiropractor, but his neck manipulations did not help the pain. He didn’t realize that he was actually aggravating a tear which had formed inside my vertebral artery, the real cause of my pain. After three days of treatment I quit, but a clot began to form at the tear.
Then at 10:30 PM ten days later, the clot broke off and entered my brain. My right arm went numb, and then my leg. Then my speech slurred. I took some aspirin since I thought I was having a stroke and called 911. Apparently the EMT’s did not agree since I did not fit the normal stroke profile (I was only 48 and in good health). My right side continued to lose functionality as we made our way to the hospital.
There I had a CAT scan, but it was not high definition enough to show what was going on. My doctor, like the EMTs, suspected at this point it was a hysterical episode rather than a stroke. Later the next day I had an MRI, but the doctors were still not sure what had happened. I lost function several times on my right side but it mostly came back each time. After four days I was discharged. The doctors now suspected a VAD (vertebral artery dissection), leading to a stroke. They told me to take it easy, which I took to mean I could take a nap if I wanted to. I left with slurred speech, poor functioning on my right side, the inability to make a fist, and a determination to overcome what I thought was a temporary setback.
I charged back into my life vigorously. I exercised and tried to ignore my persistent dizziness and partial loss of function. I even agreed to ride my son’s new motorcycle back from central Oregon for him. This was a big mistake – the helmet pressure on my neck pushed what was in fact a VAD into my brain and gave me a second stroke, much more serious, about three weeks after the first. Fortunately I made it home before it hit. I woke in the hospital completely paralyzed on my left side this time, and spent a month there recovering only partly as well as before.
There had been a whole series of mistakes leading to this point. First, I should not have gone to a chiropractor for my neck pain. I should have seen an MD, a medically trained generalist. Second, I should have paid attention to taking it easy and not have rushed back into my life, and especially not ridden a motorcycle for hundreds of miles. My first neurologist, it turned out, was having a mild heart attack during the time he was reviewing my MRI when he missed the positive signs of my VAD. No one noticed this until after my second stroke. I wonder if the second stroke would have happened at all if the VAD had been correctly diagnosed the first time.
I am very thankful I had health insurance. I would have been bankrupted without it. Being self-employed, however, meant that I had to take out a home equity loan to pay my bills while I recovered. It took me three years to pay that off. I was also lucky to be able to go back to work and not have to rely on Social Security disability. That takes a year to kick in even if you are approved.
Insurance paid for my enormous hospital bills and also good rehabilitation therapy in the hospital and at home. The nurses were wonderful and played a key role in my recovery. I regained a good part of what I lost, but rehab is hard work and requires a lot of self-motivation.
Recovery, however, is not always a straight line. After six months of recording milestones and making progress, I hit a wall. I stopped improving and fell into a near suicidal depression—my failing marriage at the time of my stroke had indeed fallen apart, I was crippled, I could no longer play my beloved guitar, and I felt like I was living a nightmare in a body that was no longer my own.
As I contemplated suicide, I realized I could “take my life, or give it away.” I realized that no matter how awful my life had become, I could still make a positive difference in someone else’s life. That was the beginning of my real recovery. I began reading to seniors in a nearby nursing home, volunteered at Food Lifeline, and helped out panhandlers with granola bars. I took the helm of the Young Adult Stroke Survivors support group, gave generously to family and friends, and began to look much more charitably on the less fortunate. It only took me 50 years and a near death experience to figure out that the greatest happiness comes when you give freely of yourself with no expectations.
I have found I can use a synthesizer to perform music again, in a different way than before. I still cry at the drop of a hat thanks to the emotional lability which often comes with a stroke, I walk with a limp and a cane, and I sound like a drunk if I am too tired. I am very lucky not to have had any cognitive impairment, though, and I have returned to work full time. I even wrote a technical paper which was accepted for publication. Six years after my stroke, I found love and remarried.
I am reminded of what I lost every day. But I have also gained a great deal and have become a better person in ways because of my near-death experience. I’m one of the lucky ones.