It’s 347 days since my brain surgery, and the recovery has been much slower than I expected or hoped. But I have some pretty darn good news to report – contrary to the title of this post, I think I’ve seen a miracle at work and underway in my noggin! Just about every week for the last month or so, I’ve gone in to see Dr. Esty and get a short treatment. Let me quickly chronicle that experience:
- First treatment: for about six hours afterwards I felt lousy, which Dr. Esty said (in advance!) was quite normal, patients often feel a flashback to their original injury or situation. But that evening (day 313) I felt better mentally than I’d felt since the surgery. It was quite a high, and lasted for a couple days, gradually decreasing. But I remained feeling better than I’d felt before the treatment.
- Second treatment: the flashback was negligible, but I didn’t get the enormous improvement like after the first treatment, just more of an incremental one.
- Third treatment: unnoticable flashback effect, and another incremental improvement.
- Fourth treatment: I didn’t dip at all after the treatment on day 342, and over the next 24 hours I continued to improve.
So what do I call ‘improvement’? Before starting the treatment I’d say I was feeling very foggy, unconnected, and with darn little initiative, drive, gusto, or any of the characteristics I’d like to say helped define my life before Marvin (the tumor). Unable to start tasks, unable to focus, unable to finish without someone continually reminding (ok, nagging) me. And I’d say I was pretty depressed about my perceived lack of recovery – despite my BFD Edy’s assurances that I was “in the 85th percentile” compared to other patients with similar circumstances. My hearing and concentration issues kept me away from most social situations – restaurants, get-togethers and any situation where there was more than one thing going on at a time. Those kind of situations quickly kicked my ass and I ended up with a pounder of a headache, barely able to walk (with assistance), and having to spend most of the next few days horizontal. Given where I was just under a year ago, post-surgical with a drainage tube coming out of my head, screws keeping my skull in place and barely conscious, even back in July I was so very much better, but wasn’t really feeling it.
I’m happy to report that today, day 347, I feel really good! I still have good days and bad days, good hours and bad hours. But the goods are vastly outnumbering the bads. I feel much more alert and heck, over the weekend I was able to go to a restaurant and sit through a dinner, engaging in table conversation with the five of us, and go home with nothing more than a mild headache, like a 1.5 on the lego pain-meter. That is, to me, an enormous difference and improvement! It helped that I have a fancy new set of Bose noise-cancelling earbuds which cut out most of the hub-bub of being in a noisy room. I was at a friend’s house with them last week, but they weren’t as effective – mostly because I had to turn them off in order to hear the conversations I was in! I’m still learning how to use them effectively for my situation, but they are really doing a great job of keeping me from turning into a pumpkin shortly into a social situation. I just hope friends, family and folks I am around these days understand that I’m not ignoring them and listening to music, the earbuds are usually not even connected to anything.
So today I’m going to give driving another try! Have to take my wife’s iPad into the Apple store for a hardware fix (the earphone jack is busted), and I’ll take Sue (bless her heart!) for a drive instead of having her drive – a first! And if that goes well, I’ll try driving (with someone else in the car for safety) every day or so to get back in the saddle, it’s been about a year since I really drove, so I’m outta practice. I’m mostly worried about the multi-tasking issue – can I be watchful of all the aspects of driving at the same time to keep from hitting something or being hit? I feel pretty confident that yes, I can. But I don’t want to take a chance, so I’ll have a buddy with me at all times I’m behind the wheel. Heck, it can’t be any more risky than a teen driver, right? And I’m sticking to side streets for now, and I won’t try the beltway till Nicole gives me the go-ahead.
Just re-read my last post, and I guess I need to play a little ketchup. But I’ll try to avoid boring my readers by detailing every little thing. Some highlights:
CJ graduated from high school in June, yay! Even better, he won the FBLA national championship in cybersecurity – top high schooler in the country!!! His name has been up in lights at Marshall HS’s jumbotron on Rt. 7 (last name misspelled lol) all summer long. I’ve gotten even prouder over the last 10 days as we’ve moved him into UMBC Patapsco Hall, and he’s become Mr. Independent – learning the ropes at college, making new friends, and figuring out things like local bus transportation and how to solve life’s little problems. Nicole and I miss him terribly, but are so happy for him we could burst – he’s truly ready for college and life. I think we did a decent job raising him, even with the hiccup of the last year!
Attended a few social events that went more or less ok (much better after starting the neurofeedback treatments!). Including a few summer concert events at our temple, most of which I did just fine at. The last one kind of overwhelmed me, and I’m glad my buddy Barry Holt was there to rescue me.
Did a few work-related stuff including helping get the new Marshall HS PTA website launched, along with fixing a few recalcitrant computers for folks. Just dabbling at this point, and successfully (I hope).
Took a 10-day vacation to the shore, and walked on the beach. Great connection with the sand in my toes, first time in a year. Got a lot of rest, and a great visit with our wonderful family friends the Holdens and the Highfills. My beautiful friend and Reiki mentor Melanie gave me some great treatments and re-awakened my Reiki perceptions, which had been pretty much dormant since the surgery. I’m now back to self-Reiki’ing daily, yay! Although I spent most of the week at the beach laying down in bed, I did get to spend a lot of fun time with the families and kids, Toby is starting his 2nd year at Drexel, both CJ and Yana are off to college this fall, and the kids are all getting more grown-up every summer! I’m so glad we get our families together every summer for some fun times either at the beach in DE or at the lake cabin in NH!
Got a hearing evaluation to start working the tinnitus issue. Yes Martha, I have high-frequency hearing loss. The doc attributed that to my years of living as a ‘normal’ person, being around loud noises a lot – as a musician in a rock band, as a rangemaster in the Navy, mowing lawns, going to loud performances and theater performances (movies and live theater). The usual stuff we all do. He did give me a great insight: during the surgery I was of course fully under, but my ears were probably uncovered and the loud noise of the bone saw giving me a pumpkin-head carving might very well have been the tipping point for the hearing loss!
By the way, the doc was at a loss to explain why the tinnitus gets louder when I turn my head to left or right, in his experience tinnitus isn’t affected by that. So I have hope that there’s something else either creating or exacerbating the noise I hear inside my head 24/7. S’matter of fact, I’m going to see a Craniosacral therapist next week, perhaps he can adjust my head bones or something and make the noise go away. I’d even be happy if he was just able to reduce the volume a bit, but I’m not expecting another miracle – or maybe I am? He was referred to me by my 2nd resident miracle worker, Dr. Esty, so I’ll remain hopeful. Of course my 1st miracle worker is Dr. Edy Aulisi who will forever be my BFD. Found a nice video of him on Youtube, take a gander!
So all in all, this post is a 180 from my last one in June. I am pretty much over my depression (yay!), am much more engaged with life and really starting to see a light at the end of my recovery tunnel. I will continue the neurofeedback treatments till Dr. Esty or Nicole or I proclaim myself ‘cured’. I’m starting to work a bit more, especially now that we are empty-nesters – I’m realizing that CJ’s schedule and my involvement filled massive time in my work week, and that’s all free now. So I’m looking at taking Practical Help to the next step (still have to figure out exactly what that is), and getting back to (and more involved in) affairs at our temple. Once I’m driving again (hopefully soon!), I will be much more able to do a lot of things that I couldn’t really – I hate having to beg for rides everywhere.
So let me close with a quick ketchup of the milestones list I started last year:
- attended CJ’s graduation ceremonies, lasted throughout and didn’t fall down (Opa did, whoops!) day 271
- six-month checkup with BFD Edy, MRI report said my brain was ‘unremarkable’ day 278
- all-day orientation at UMBC with lots of meetings and walking, lasted throughout day 279
- Brain scan reveals I do have abnormal activity (voltage) day 305
- Had lunch with my good friend Debbie Jardot at the same restaurant where Nicole I I went and got the initial tumor diagnosis (didn’t freak out this time!), day 311
- First neurofeedback treatment, fantastic results (slightly delayed) day 314
- first sand in my toes since surgery day 319
- hearing loss confirmed but no help for tinnitus day 334
- become an empty-nester 🙁 day 337
- attended first shabbat service since surgery day 343
- 10 consecutive days of clear-headedness! day 347
And so it goes, my recovery seems to be picking up steam and my outlook is becoming quite bright. It’s sunny days ahead! I’m looking forward to starting to drive again, starting to re-engage in life and work, and even perhaps becoming more self-reliant.
Let me close with some thank-you’s, starting with a big shout-out and thanks to my sister Lisa who came here for the surgery and CJ’s graduation and has filled in for me on this blog when I’ve not been up to it and been so engaged during this whole time!
I’m so thankful for all of you who’ve helped me through this last tough year, my family, clergy, friends & neighbors, and most especially Nicole – my rock! She’s been so supportive, I don’t know how I could have survived this without her, and hope that in the coming weeks I will progress enough so that she can stop worrying about me and also not have to do so much for me (that self-reliant thing y’know). As we celebrate our 22nd wedding anniversary (and 1st anniversary of Marvin’s discovery), I am in absolute awe of her and feel a bright new chapter in our lives together starting…right now!
And my other rock, CJ. You’ve become such a great young man, and really stepped up to the challenges of growing up and taking on responsibility over the last year while I’ve been just laying around. I’m so proud of what you’ve become and glad I was able to take some small credit over the last 18 years for that – but it’s really you who’ve met and overcome life’s challenges and gained the maturity and values that will see you through great successes to come in your life! I’m sad to see the end of childhood, but overjoyed to be around to watch your future self emerge. Congratulations!
Oh stop! now I really must close!
- Hook ‘Em Up Doctor
- One Singular Sensation