12 Months Post Brain Surgery Update: Still Struggle, but getting Stronger and Smarter Month by Month
Been extremely quiet for quite a while now…you know it takes a lot of time and energy to conduct the world’s largest pity party (self pity that is…) and frankly in many ways it is not fair to my Wife, my Kids, my Parents, my Sisters, my Extended Family, my Friends, my Colleagues and my Business Partners to share all of this, but holding it all inside and grinding through it all is just not healthy either. Therefore, I choose to share and in tandem apologize to all of the above for any angst or unnecessary concern my sharing may cause you. Keep in mind I am AlbeeStrong TM here!! and realize that even though I am far from “fine,” I will be OK!!!
The reality is that I am not so fine. It has been so utterly difficult to accept that I have a chronic illness and most likely will struggle in one way or another every single day for the rest of my life. I spend a good deal of my day hiding my symptoms from everyone I encounter. Also, every single day I spend a great deal of time doubting myself, my abilities and struggle sometimes with simple tasks. If you ever ask me directly “how are you?”, there is a 99% chance I will say “I’m good” or “I’m fine” when the reality is that I am “the same.” From the moment I awoke after surgery, I knew that was just not right, but it many ways it was also better. Confusing…
Let’s go back to last Jan 2013. I was very slow to recover from the invasive brain surgery on many fronts – physically, cognitively, etc. I was improving and improving slowly but surely until July when I had a few major TN attacks that rocked my world (we were having severe weather here in MD/DC). It gave me some serious pause. In Aug, I finally gathered to courage to register and attend an 8 Week Mindful Based Stress Reduction clinic and I began to learn to meditate. Throughout the Fall, I was up and down, still struggling from Type2 TN pain in my teeth on a daily basis (where it feels like I need to just rip a tooth or 2 out, then I’d be better, but then the next day it was on a diff set of teeth) along with chronic fatigue and occasional electrical storms. Also, the daily struggles with the Anesthesia Dolorosa (AD) continue where various numb areas continue to burn. Mostly it is my tongue and lips that burn. I try to chew ice and ice them, but it’s very difficult to keep ice around 24x7, so typically I grind through it – although I am learning an advanced practice of decoupling “pain + suffering” as I may not control the pain, but the suffering is optional. Also in the Fall, I began to have TN pains in my teeth and on the left side of my face, which also rocked my world as I was not prepared to deal with any of this bilateral TN business. It just completely freaked me out.
Then, as the Low pressure eased into the MD/DC area during late Fall, it was like kryptonite to me. I grew lethargic, weak, attacks were more frequent, gained weight, found it very difficult to function and every day was becoming more of a struggle. Around Halloween time, I got a sick like a simple cold/cough and spiraled until they finally ended up treating me for pneumonia… They say I just need to be super careful with germs, washing hands, etc as my immune system is weaker ie more susceptible to catching illness. I got the Pertussis vaccination and am on deck for the Shingles and Pneumonia vaccination plus I have been super careful since. Knock on wood, so far so good. Also I could rip up the family, move across the country to a drier, less varying climate, but then again I could do that and cause my wife to not keep her great job (whose benefits we use today), my kids away from their friends and into new schools only to find out that I am exactly the same there as I was here. Or worse totally come out of remission for the ice-pick-to-the-head TN episodes that were unbearable (the major surgery last year did put these into remission = yay!!). This along with the fact that I have tried nearly all the medicine options, have had so many procedures that I may have permanently damaged the nerve and there is not much else to try to “fix” has been very, very difficult to process, but I am getting there. What can I do? Kill myself?? Yeah, not gonna happen – I still like me even with these chronic problems. Ha ha
Meanwhile, the Mediation practice is helping a great deal. Found a great iPad/ipod app called Mindfulness Meditation for Pain Relief and I am mediating like life depended on it (because it kind of does). I am trying to learn to drop the word “Pain” from my vocabulary and trying to begin to use the phrases “intense sensations” or “extreme discomfort.” As it turns out our Thoughts and Emotions are tied together and a simple word can trigger all sorts of unnecessary storming in the mind and the body. Further, I am beginning to zero in on decoupling the idea of that Pain and Suffering are permanently linked. The pain may be unavoidable, but the suffering can become optional. I am an extreme newbie to this advanced practice, but slowly it is sinking in and I am learning to “focus on the breath.” I am going to take on the world, one half-breath at a time.
As part of the MBSR class training, I am learning to lean in and get to know the “intense sensations” as opposed to just trying to distract myself and grind through them. Doing so I documented at least 8 different manifestations of TN/ATN/AD that I struggle through on a regular basis– wow! who knew, but once I started to slow down , really peel back the onion and put them into the “field of my awareness” I started to realize that these were all not just generic “TN/AD attacks,” but each manifestation had its own individual characteristics. The 2nd part of this exercise is to give them silly names – sort of a rebranding if you will.
This is not all of them, but I’ll give you a peek into the most pervasive ones. There is Glinda - she is my current nemesis (these have been full on TN attacks that are bone level searing from the eye down through the nose and out the teeth) – everyone thinks Glinda is such a good innocent Witch, but underneath – the parts you cannot see- she is horribly wicked just like this disease. Then, there is Jimbo (should be Stanley, but Jim Carey cracks me up so Jimbo it is..) who represents an invisible Mask I wear that is very heavy along with sensations of pulling, tightness, that feeling of spiders walking across it and on some days actually feels like it alive and pulsating (this used to REALLY freak me out, but now I’m actually used to it…whack I tell ya). Then there is Pedro - the daily burning/stinging in my mouth and on my tongue similar to the sensation I once got from downing a few habanero as a dare/bet from guy named Joe. Realize he was not named Pedro, but Predro is much cooler name, so Vote for Pedro! And of course, Hermey – what a pain that guy is…you know the elf who wanted to be dentist? Turns out he is a crappy dentist- ha ha! This represents the daily tugging on my teeth or that painful feeling that if I just pulled a few teeth out, life would just be better, but of course the next day I awake and its an entirely different set of teeth. Yikes! Anyways, Hermey should have stuck with building toys. ;-D
This all said when I hit 12 months post-Op this past Jan, I felt a fire burning deep inside like a massive source of positive energy that I have not felt in a long, long, long, long time – like not at all (not even once) in the Year 2013. It is a very strong desire to make things happen (big things), set& accomplish grand goals, get back out there in front of customers, partners and most of all I am craving to do big-time deals again – love that stuff!!! Also, I am getting smarter in dealing with my limitations and challenges. For example, there no more leaving so I arrive precisely at the airport check-in counter line at T-31 min before the flight leaves and instead of a 5 city/5 day trip, I’ll keep it to a 3 city/5 day trip. I may not be able to work 3 full screens + 2 phones at once any longer, but I can work 2 screens + an iPad + 1 phone. Also, the chronic fatigue is tough to grind thorugh, so here is my thought process: OK I get it self, I am going to be tired every day, but must I be tired and weak?? HELL NO!! I can be tired and STRONG!! Still wearing my fitbit and seriously try to walk every day to meet the 10K steps/day goal – it would be great if you could join me on this quest!! (giddyup you slackers!!!) Seriously, take the AlbeeStrong challenge and join in. Also, nearly every day I do my Lumonisity.com training. There are a lot of naysayers out there, but you should know that many of these “games” are the same exact games they had me do in the in-person, time-hogging and costly “speech therapy.” I can tell a difference in a major way and it helps me be mindful about what I am ingesting and how that may impact my brain function. Still crushing my age group and up as well as the under 25 and the 35-45 year olds, but those damn 25-35 year olds are just too solid. Some day.
Anyways, suppose I am just at a point with all this where my options are to either dig a hole and crawl into or get back out into the world a do something super fantastic with the rest of my life. Strap yourself in, because the next chapter of this journey is under way and think you will enjoy the ride.
Thank you again for all your love and support over the years!! As it turns out, I may need just a tad bit more (or a shitload more) along my journey through this world, but knowing you all are out there pulling for me (and now I am clear and mindful that I am rooting for me too), I think I can do this.
Be Well, Be Strong and Be Kind,
Albee Shanefelter, TN Survivor