I Have Post-Concussive Syndrome

I need to figure out how to manage this.

This is a picture of me after a terrible fall last May. On the right is a picture of me in the hospital waiting for more CT scans and MRIs. The left side is several weeks later as I continued recovering. I put these pictures together to show the contrast between what I would ordinarily look like, in comparison to how I appeared after regaining consciousness. I wanted to make sure they were only a few weeks apart, not a hospital photo alongside one a year before, for the most accurate context.

This is hard for me. I don’t understand exactly what’s going on. Sometimes just when I think I’m improving, becoming more accustomed, and accepting of a life that will be different going forward, something happens and it seems to take weeks to claw my way back.

For someone who never participated in organized sports, I’ve had an unusual number of orthopedic-related injuries and issues. Things such as herniated discs in my neck. The surgeries to correct these problems often left me struggling to recover, and always adjusting, having to compensate. A little pain here, or limited range of motion there, the inability to speak for almost a year after the unfortunate paralyzing of nerves in my larynx.

The worst situation was the botched rotator cuff repair made worse by my orthopedic surgeon of many years. His inability to accept that he could have made a mistake prolonged my suffering and caused another doctor to finally step in, sending me to a specialist. The specialist, I feel, saved my arm from amputation. My original doctor had made a bad situation so much worse that the pain had become unbearable. It was relentless, a 24/7 nightmare. I didn’t even have to try to move my arm, at that point I couldn’t. It was never-ending agony.

Despite my regular visits after the surgery pleading for help, I received none. Not even a suggestion of an MRI to see what might be wrong. After 4 months of continued deterioration, it was my insistence on a prescription for physical therapy that finally brought me to the understanding my doctor had failed me and I needed yet another surgery.

Too many bone spurs to count, seemingly everywhere. Fractures here and there, assorted ruptured tendons, the left Achilles twice, and so on.

I continued to adapt and overcome until last May. I’d had dogs since I was a child and always had a fenced yard for them to freely roam. Until that is, I moved out of my home 2 years ago into an apartment, then a townhouse.

I had asked my husband to keep our dog when I left. Although she was more attached to me, she had never been confined or walked on a leash. She was older, and I felt that trying to take her away from her comfortable home to a small apartment and constant leash walking would be a difficult adjustment for her. However, he refused, claiming she would miss me too much.

What he meant to say was, that he was too lazy to care for her and didn’t want that responsibility. At one point, he said to me, she was a burden. So she came with me. She and I adjusted to several daily walks. She wasn’t a fan and it was tough on us both when the weather was problematic, but we managed.

However, when I bought the townhouse she did not do well making that transition. Having never dealt with stairs, she refused to negotiate them and was too big for me to carry up and down. She would pace downstairs all night wondering where I was. Her health was already deteriorating when I initially left my home. The townhouse move greatly exacerbated her demise.

Six weeks before she died, I had gone out after 10 to take her for a final evening walk when I stepped on the edge of the walkway behind my townhouse. The grounds had not been maintained as they should have been and there was considerable erosion of the yard alongside the walkway. The fact that the yard wasn’t level with the walkway caused me to lose my balance, snapping my ankle, and propelling me forward.

It was a terrible fall. I’d suffered many, often resulting in injuries, but this one was so bad I knew as I flew through the air I was in trouble. It knocked me out. A head injury was something I had previously escaped, with a minor exception in a car accident that broke only my nose.

Regaining consciousness, I remember commanding my body to turn itself around, but it was unresponsive to my directions. This is hard to understand if it’s not happened to you. Imagine knowing you need to rotate yourself so that you can crawl back to your house, but your arms and legs won’t follow the directions you are giving them. I’m sure this only lasted a few minutes but it seemed like hours.

Finally, I began to rotate myself on my stomach, with the help of my left hand, I started trying to crawl back to my townhouse. I hadn’t taken my phone with me and it was late, with no one in sight to call out to for help. I couldn’t crawl for long, my left knee hurt too much. Trying to figure out what was wrong, I realized there were pieces of glass and brick chips stuck in it.

What would I do? How could I get back to my house to get help? Crawl on my stomach and use my elbows! Things started clicking and working. Messages my brain sent to the parts of me that were still working were connecting. Suddenly, I remembered watching my Marine friends. The way they crawled on their stomachs, cradling their rifles in the crooks of their elbows in training. I could do that! And that’s how I got back home. I crawled on my stomach using my elbows, dragging my legs.

Once inside, I called my daughter for help, and my husband, to come and take our dog. They arrived within minutes of each other. My daughter took me to the hospital and my husband left with our dog.

I was well cared for at the hospital. The doctor was amazed I hadn’t broken bones in my face. I was thankful I still had my front teeth and assumed I would slowly get better. Parts of me did. There were just so many things wrong.

I went to physical therapy for months, until the therapist said he could do nothing more for me. As of today, three doctors have told me my ankle cannot be repaired. Check. Accepted. Worse are the cognitive issues with which I continue to struggle. I have a much better understanding of the struggles anyone affected by even a seemingly simple TBI must cope with.

Initially, I was told my confusion would clear up within a few weeks. Then it was give it a little more time. Finally, came the diagnosis of post-concussive syndrome. Now I’m being turned over to a neurologist.

Recent months have been the most challenging. I caught norovirus from my infant granddaughter a couple of months ago and it took me weeks to recover.

Then, just over 3 weeks ago I caught a bad cold, once again from my granddaughter, that turned into bronchitis. I was scheduled to leave for a trip exactly a week later. I had improved by the time I left, but the trip was cross country for about 3 and a half days, and it left me so exhausted and weak that when I returned I was focused on not collapsing before I could get home to my bed.

Things I was previously able to manage I no longer seem able to. Why should getting over an ordinary illness leave me nonfunctional?

Concentration is a huge problem. I’m afraid I’ll miss a bill or payment. I’m constantly checking my bank and credit card balances. I haven’t been able to keep things in order since I initially became sick in February.

I miss reading my favorite writers. If I can just get my finances filed and in order, I hope I can get back to managing daily life. That’s all I want. I just want to be normal. Many people don’t realize this, but leading an ordinary, normal lifestyle is a blessing.