In 3 1/2 weeks my brain injury turns two. Like living with any toddler, I don't sleep well, everything takes far more effort than it should, my memory isn't what it used to be, I have to turn down many social events, and I'm always exhausted.
When I wrote my first blog entry two years ago I was trying to inform everyone about why they weren't seeing me. At the time of my accident I was playing outdoor soccer during the spring and fall, and indoor soccer during the winter. I was volunteering with PFLAG, I was part of the Safe Schools Coalition, I was the Diversity Liaison for our school, I was teaching high school and writing course content, I was very involved with our then 4 year-old son, we attended church regularly, and I was always attending professional development workshops. In fact, I was on my way to a Holocaust Educators workshop on the morning of my car accident. My first blog post was my way of writing a single letter to answer the many questions I was getting from the many people who had been accustomed to seeing me. Two years later I'm writing this and wondering who will read it. I feel so disconnected. One by one all my involvement in all my activities stopped. I'm attending a brain injury support group now, and one woman put it this way: "At first your friends keep inviting you to things because you're still seen as part of the group. But little by little the invitations stop. ...and you find yourself grateful when they stop because then you can stop turning down invitations and you don't know what you're missing anymore."
It's New Year's Eve. My now 6 year-old son is at a kids' climbing gym, celebrating with noise makers, hats, snacks, lots of other kids, and walls that are literally made for climbing. Amy dropped him off, and will celebrate the last day of 2014 with her brother and sister-in law. I've been having occasional searing pain in my head today, and don't want everyone to keep quiet on my account, so I have elected to stay home tonight. (I'll be asleep well before midnight.)
I joined a Traumatic Brain Injury support group just last month. At one meeting I reported that I was surprised that when I worked with a Rubik's Cube for about an hour one evening I suddenly got a killer headache, and the next day I felt like I was nursing a severe hangover -- tired, groggy, sensitive to light and sound, and dragging myself through obligations I wished didn't exist. They looked at me with astonishment that I would attempt something so completely insane. "A RUBIK'S CUBE?!?! FOR AN ENTIRE HOUR?!" I shrugged dumbly. "I love puzzles. In the past I might pull a jigsaw puzzle out of its box at 7:00pm, and at 5:00am I'd still be working on it, surprised that all that time had passed. Why should I assume that one hour at a Rubik's cube, TWO YEARS AFTER MY INJURY, would cause such strong symptoms?"
And that is the question that continues to perplex me. How can I still be like this after two years?
It was during that same meeting that we celebrated the accomplishments of another member of the group, who had successfully sorted hundreds of record albums by genre and then alphabetized them with her boyfriend -- a major undertaking that left her very tired, but feeling proud and accomplished. She's an engineer, so alphabetizing and sorting are not typically things one would celebrate. Such is the aggravating condition known as Traumatic Brain Injury.
My expectations of myself are shifting of late. Six months after my injury I was trying to schedule comprehensive cognitive testing with a neuropsychologist. She said she wouldn't be able to get me in for a couple of months. I expressed concern that by then I would be so much better, and might not get a good baseline if we waited too long. She assured me that two months wouldn't make much difference. That confused me at the time. Now that two years have passed I get it. Eighteen months ago I was looking forward to when I'd be able to return to soccer, and go skiing, and go backpacking when Kaiden got old enough. The injury has aged me. Now my first reaction to plans for camping or vacations is that of anxiety. I've accepted that I won't play soccer again, because another blow to the head could have devastating effects which would impact all of us.
In April of 2014 I was informed that my job with Boulder Valley School District was being cut, so I found myself unemployed when the school year ended. The previous year I had gradually let go of all my extracurricular activities, and now I was out of a job as well. Despite being unemployed, which seems like it would result in dozens and dozens of hours of extra time in my week, I am just as exhausted and behind on projects as ever. I didn't write the annual Christmas letter this year. Last year at least I wrote the letter, and ordered photo greeting cards, but never got around to mailing them. With all those hours I'm not working it seems I could at least write and send Christmas greetings to our friends and family.
This inability to keep up with ordinary tasks simply reveals how much my mother was doing for us. For the first 18 months after my accident she was here every month, staying anywhere from 1 to 3 weeks. She would get Kaiden up and going in the mornings, get him to school, shop for groceries, cook our meals, clean the kitchen, do the laundry, walk the dog, wash the cars, play with Kaiden, get Kaiden to karate, read to Kaiden, get Kaiden bathed and ready for bed, and on and on. Since I lost my job my mother hasn't had to come out here, and instead of working I'm doing all the things just listed. I'm so grateful that my mom was able to lend so much assistance, which allowed me to continue working through my brain injury for 18 months.
Even though I am still taking one pill to help me sleep, another to keep my heart from racing wildly while I am sitting still, and another in the morning to help me focus, Hyperbaric Oxygen Therapy (HBOT) has been shown to be the only thing that can heal brain injuries. I have now had two courses of HBOT. The first course of HBOT consisted of 40 sessions, 80 minutes per day for 40 consecutive days, every day of the week except Sundays. Patients enter a chamber that is sealed and pressurized to 1.5x sea level pressure. Once the desired pressure is reached (about 10 minutes) the patient puts on a plastic hood into which pure oxygen is pumped for an hour. After the hour is over the hood comes off and the pressure is slowly let out (another 10 minutes). The idea is that the tiny little blood vessels in the brain are forced further into the cortex, and then filled with tissue-healing oxygen. The first course of treatments had profound improvements. I noticed my sound and light sensitivity had diminished. This meant that I could go out to restaurants, I could follow conversations, I stopped needing daily naps, I could interact with others more effectively, and I had more endurance to interact with Kaiden. In June I noticed the benefits wearing off a bit. While I spent the entire month of June with my parents in Illinois, I was unable to visit several people I had intended to see. I started needing my afternoon naps again. I was forced to go lay down because conversations and normal Doyle household family commotion were overwhelming to me.
I just finished the second course of treatments -- twenty this time -- last week. To have the headaches I've had today is bewildering. The pain is more severe than normal. I can only hope that the headaches are indicative of newly operational regions of cortex, and not signs of doing too much with my brain.
Despite what I am realizing is extensive whining in this blog post, Amy and I are continually aware of how blessed we are. Her job has sustained us, and she was given a promotion in 2014, so my unemployment status has not left us in financial crisis. She travels a lot with her job, so we are both stretched to the ends of our capacities, but while we're usually exhausted, we're getting through all this okay. Kaiden seems none the worse. We have very good health insurance, which we've been needing A LOT.
Additionally, we know that we have wonderful family. It is because of my accident that my mother has been a very supportive, consistent and wonderful presence in my life and in Kaiden's life these past two years -- something that would NOT have otherwise taken shape during our annual or bi-annual visits to Illinois. Having heard from so many who have lost their mothers, I am fully aware of the incredible value of the time we've shared since my accident. Finally, we are also aware that it could have been so much worse. I'm not sure how much of my former energy and cognitive ability will return as I continue to heal, but the accident was a doozie and I'm happy to have survived it at all, and with four working limbs and no more significant physical or cognitive ailments than I have. Life is Good, and we are blessed.
If you've made it to this point in the blog post I applaud you. Thanks for continuing to be a friend, despite my disconnectness. It's always good to hear from friends, especially through emails I can respond to when I am able, and with enough time to compose a reply that makes sense. Take care, and be well in 2015!
