The shadow of permanent disability

I’m trying to figure out if as a result of having a tumor removed from my brain recently whether I will have some sort of permanent disability. The short answer is that it is way too early to know. But certainly some of my assumptions on my recovery are proving incorrect. It’s easy for me to think my condition is way better than it actually is.

Part of this is that the brain is absolutely essential and it’s been reconfigured in a way, certainly changed as a result of the tumor being removed. Also, I don’t have much detail of the surgery and what happened. I thought I was in surgery for a couple of hours. My wife says it was more like six hours. I certainly have what looks like a zipper head at the moment. Forty two staples in my cranium look like a zipper. They should be removed next Thursday but I’ll have to be driven all the way to Boston to have them taken out.

Then there’s the question of whether the tumor was cancerous. I’ll probably know on Monday when I do a telehealth visit with Massachusetts General Hospital. It takes that long to grow cultures from the biopsy and get results. The tumor was described as very much on the surface of the brain and well contained, which suggests it was neither deep nor particularly cancerous. But in much of medicine there is a lot of waiting around and few clear answers. If it was cancerous, there is probably radiation treatment and chemotherapy in my near future. But generally these days the prognosis of a full recovery is pretty good.

The brain doesn’t have pain receptors. If it did perhaps I could judge the extent of my injury better. My brain is trying to sort itself out to its new tumor-less reality, so some of the mass probably has shuffled in some minor ways. It’s possible I’ve lost some capacity but can’t notice it. Much of the right side of my face was swollen for a while. In general, I fatigue easily. I am getting physical therapy and can walk slowly but readily. But my left side balance is not great. Physical therapy is helping but it’s a slow process.

There are rules and there are relationships. The anti-seizure drugs are behind me but I’m supposed to keep my head at all times above my heart. I want to do more things like make dinner but I’m really not supposed to. I’m not supposed to lift more than ten pounds. I scooped out the cat boxes yesterday morning. This drove my wife into panic. She had a seizure disorder and both episodes came on suddenly. I had to pick up the pieces. She’s afraid I’ll keel over unexpectedly, fall unconscious and maybe die. To me it doesn’t seem likely and I believe I can detect if I am going to feel faint. My blood pressure is fine. At times I feel a tad light-headed. I get outside once a day and use poles to help ensure my balance, but I don’t really feel like I am at risk of fall. It’s just that I’m not really the one who should be assessing my own condition.

Given I like to be independent, some sort of marital conflict from this was inevitable. I can try to be more sensitive to my wife’s feelings, but I also feel somewhat overly accommodating. It would be hard to do this forever.

What little I can do takes a while. Paying bills or wrapping a present is a slow process. I’m not allowed to drive yet, so I order gifts online when I can find the energy and the focus. My life has changed in some major way that wasn’t apparent to me before. I don’t know if a return to full health is possible or how long it will take. So there is not much to do but take things one day at a time.

I’m optimistic by nature, but life is ambiguous. I may meet my maker long before I expected to. If I were going to though I would think the signs would be much clearer. Instead, I exist largely housebound, bored with most things including computers and even YouTube. For me, living is not existing, but challenging life. Just existing seems in some ways sort of pointless.

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