Forgive me for I have not posted…
Today is day 263 since my surgery, and I last posted back in February. What a hiatus! I feel I must explain. While the physical aspects of my situation have drastically improved (although not enough and not as fast as I would like), the mental aspects aren’t abating as fast or well as I’d (or anybody?) expected. Or perhaps it’s all in my mind…
Remember the Rubik’s Cube? Where every time you move a spot, other spots are also displaced? That’s kind of what my brain seems like. Things like my senses and memories and who knows what else are continuing to shift around in my head from place to place. A study I read says this sort of thing continues indefinitely with folks with moderate to severe brain injury, and I’m guessing that’s why I have good days and bad days, good weeks and bad weeks, with no rhyme or reason to it.
What’s persistently annoying is that I find I can’t really focus on work very well, and on a lot of everyday life. I start things and don’t finish them, like work projects, home projects and to-do’s, and even conversations. I can’t seem to focus on more than one thing at a time, and when I try to switch tasks or topics, I can’t really get switched over and end up in limbo more often than not. Or maybe I’m just having a bad day today.
Anyway, so I thought I’d try to put down here what I think I’m going thru. It could be just a fantasy, or a rationalization for me just not being…me. I’ve been reading a lot about other brain injury/surgery people, situations, and neuroscience studies. And see a bit of me in a lot of other, much more serious situations like head gunshot victims, battlefield TBI, etc. I shouldn’t be nearly as bad as all those horror stories, since mine was a benign tumor and it came out with no complications.
The most annoying (I’m sure to Nicole and others!) problem I’m having is that I can’t split my attention between more than one person talking and anything else. If someone talks to me while I’m doing something else (like typing this little blog), my brain goes into neutral – I stop doing whatever it was I was doing, but can’t focus my attention on the person who’s talking. For at least a few seconds although it seems like minutes to me where I’m just going ga-ga-ga and trying to refocus on the new thing. This more than anything is why I’m not driving yet – I’m worried that there’s just too many quickly-changing focus points involved in driving and my ol’ brain just ain’t up to the task. I’m convinced it should be. And this problem gets ugly when I’m in a situation where there are multiple conversations going on at the same time – family get-togethers, parties and even restaurants! And my ears are still very sensitive to loud and sharp noises – they hurt – although my super-hearing has abated quite a bit. I no longer hear light bulbs thank goodness!
My neurologist back in March thought I should be pretty much back to normal by then, but I’m just not feeling it, dude. Even now I am really having a hard time focusing on writing this. Let me save another draft and come back to it. —
So back in February we moved into the main floor suite for the duration of our master bathroom renovation – a 4-week project that took 12 weeks. A lot of banging and whining noise, which drove me to the basement or to our next-door neighbor’s house for relief – thanks Charlotte for being so thoughtful to loan me some quiet space! Those 3 months were a blur, but I do remember finishing my physical therapy and being ‘graduated’ to doing the exercises on my own!
During the construction time, my son CJ finished his college search, hello UMBC! I went with him and Nicole to visit the campus, with a little walking around and beautiful weather – that was tiring but very cool. In March, we went to the national CyberPatriot awards banquet, which was difficult even with ear plugs – a lot of loud noise and it was hard to follow everything. But I managed. April saw CJ win the State FBLA competition for CyberSecurity and he also competed in the team VA Governor’s CyberSecurity competition, with his team taking 2nd place in the state. I attended that competition at GMU and lasted through the whole day! So my stamina is improving, at least on good days. Later this month CJ goes to Nashville for the national FBLA competition, and we’ll watch (back home) the streamed awards ceremony where hopefully he wins a trophy!
In May I took my first post-surgical airplane ride – to Atlanta for my niece’s wedding. This was a big deal for me! I had this totally irrational worry that my head would explode during the initial climb to cruising altitude, so it was white-knuckles for the first 15 minutes or so. But it turned out to be quite boring, nothing happened! On the descent I did feel a little dizziness as the cabin pressure increased, but nothing to really matter. The flight did wear me out though, so right to the hotel bed I went. The wedding was great, and so was the visit time with family, although my stamina was pretty low – had to duck out of the reception right after the cake cutting. The trip home was uneventful, although I spent the next 4 days mostly horizontal – very tired out from all the festivities! It was great to see the family and friends and meet Krystal’s awesome new husband! Oh and a little Phase 10 with the family was great brain exercise!
Last week saw the first big work trip for Nicole – to Vienna Austria! But she made sure I was taken care of, our housekeeper Sue was here almost every day that week. I’m not happy I still need babysitting this long after surgery, but it is what it is… The week went by uneventfully, and I even did some minor projects around the house (with Sue’s help). I did have a nasty day or two early in the week, but by Wednesday I was back to sort of the ‘new normal’.
And yesterday (day 264!) was my six-month MRI checkup – to make sure Marvin or his minions don’t make a return call to my brain pan. It was pretty routine, and even the injection didn’t bother me much. I actually enjoyed the MRI sounds as that helped to mask the tinnitus sound I’ve had ringing in my ears since December. I’m convinced that high-pitched whine in my head is somehow related to the whole brain surgery thing, although it could simply be a coincidence. I’ve gotten used to that just like the whole vertigo thing I’ve got going on, so it doesn’t even keep me awake at night – much.
Since I’m frustrated at my slow recovery, that means it’s time to recap milestones. This helps me to see (as my friend Barry keeps reminding me) that I am making progress!
Here are adds to the list I’ve been running through past posts, to catch up:
- Move downstairs, construction starts with lots of noise day 150
- Followup with Dr. Savani, declares I should be ‘back to normal’ by now day 175
- Physical Therapy last day with Kristin day 178
- Attend very noisy CyberPatriot Gala at the Gaylord day 190
- Take group of high school seniors to beach house day 208
- Spend day touring campus at UMBC day 216
- Move back upstairs, new master bathroom with lots of grab bars! day 232
- First airplane ride (to Atlanta) day 244
- A week with Nicole out of the country (with Sue’s help) day 253
- Six-month MRI checkup day 264
So all in all, I am doing much better! Not listed is the important fact that my headaches are mostly just background (like the tinnitus whine), I use the icepack trick perhaps once a week now. That’s actually amazing as I distinctly remember having constant headaches just a few months ago! I’m able to do lots more stuff than I could just a few months ago, and my stamina is measurably better. I still take a lie-down at least once during the day, but often don’t sleep, just stay horizontal and read. That’s also a change as I used to zonk out every afternoon for a couple of hours. Around the house I don’t use a cane (walls are always close by), but most times when I go out I still take my cane – just for balance. I am able to take the dog for a walk by myself (juggling the leash and cane is probably funny to watch), and I’m trying to get back into an exercise routine – my muscles are getting flabby! Hopefully BFD Edy will give me a green light in 2 weeks when he looks at the MRI report and pictures of my brain. And I continue to improve steadily, albeit slowly! Frustrating to me, but I have my awesome wife and son and family and friends and clergy and just everybody who day after day stick with me and help me through this recovery period. I can’t thank you enough!