Transitions: Days to Weeks to Months to….Acceptance and the Next Chapter
by Albee Shanefelter
1/25/2012
The previous chapter of my life begun 5 months ago and I will never be the same… for better or worse.
Following the sudden outbreak of severe, searing pain on the right side of my head/face, I was diagnosed with Trigeminal Neuralgia (TN). Each day got worse. Typical pain was an ice pick through the side of my skull or a letter opener jammed up between my teeth out my cheek or a hot, searing knife in/out of my temple area. Each night I was too afraid to try to go to sleep for the fear I would never awake. I would leave notes for my wife and kids and just stay awake late into the night until I would finally pass out for a few hours due to exhaustion. “How could I be in this much pain and not be dying?” was my only thought.
I wished, prayed, and pleaded (even danced along a few other crazy things I dreamed up): “please, please, please let them be wrong – a tumor? a stroke? just anything but this horrible sounding TN.”
The days turned into weeks of testing and testing, but no luck…all signs pointed to TN. Cycled through a laundry list of different medications - some of which drove me to the darkest place imaginable. Weeks have now turned into months.
Through the months, I have had two neurosurgical procedures – Glycerol Injection and the Gamma Knife, been through Physical Therapy, begun Acupuncture treatments and now ready to add Massage Therapy to this arsenal. All while continuing on the neuro and pain meds, which are often disruptive to my ability to multitask/function as well as to my already less-than-stellar memory/recall function. This entire time, I have been in DENIAL, “I’ll just hold my ground and one day Ill wake up, then it will be gone.”
Well, this most recent brain surgery (the Gamma Knife) really knocked me much harder than I had expected and as I could not stand/walk without assistance for many days, it gave me plenty of time to think. It was very difficult to achieve, but I have now reached a level of ACCEPTANCE and will now be asking each of you to ACCEPT the *new* me as well.
The reality is that I will never be the same again for the rest of my life, but I AM OK WITH THIS. Don’t get me wrong, I am NOT giving up the fight – in my book, the only thing worse than NOT winning is losing, but the reality is that I believe this TN will come back (that is if it ever leaves :).
My belief is that there is NO silver bullet. Although my arsenal and attacks upon this TN are strong and they are helping (i.e. bringing some level relief), they are for the most part just stop gaps, which permit some time period of temporary relief, but I will take it! Heck I have connected with folks that have achieved 10+ years of full relief via this Gamma Knife so fingers crossed as I wait for potential relief to kick in (it takes 2-3 months), but the typical case shows re-occurrence in 2-5 years. If required, I will continue to build my arsenal and up the level of my attacks upon it (i.e. full on traditional brain surgery).
In 2011, I lost one of my strongest supporters – a childhood friend named Bill Poling – to cancer. He was a fighter and through the horrible, miserable experiences of his multiyear battle, he somehow maintained the utmost optimism and positive attitude. We would message often; he helped me live through the early weeks of my condition. He convinced me “to hang tough, I would get used to the pain” and sure enough, I have…Further, he taught how he coped – “it’s OK to let it out - full rage to complete sobbing meltdown from time-to-time, but you must always put it back in its box”. Also, together we came up with the coping strategy to create a Happy Place – a physical place (a room) in which I could go to get grounded – surrounding myself with my fav things and a place to go “let it out” to to go to when I reset while I wait for the meds to do their thing. Was devastated when I learned the news (my poor wife – she has been sooo very strong for me), but over the course of the following days, I began to feel his spirit join mine and I now can hear him encouraging me to be positive, but now from within. RIP Sir Poling.
Also in 2011, I had a friend (not super close one, but someone who I had kept in touch with and had helped me professionally plus vice versa over the years) leave me a vmail asking to call him back, but it did not sound urgent. I knew he had a rough rollercoaster ride over the past few years, but I was in recovery from my first surgical procedure, so I decided to give it a few more days. Before I got around to getting back to him, I got the news – he had given up and committed suicide. He was married with 2 young kids. I was completely distraught learning this and could hardly stand up. I do not believe that I am some sort of super person nor that I could have turned him around, but from that moment on I knew the Universe was telling me that that no matter what it took, I had to get the word out to the world that I am here to help others. Should ANYONE need a helping hand or just need a hug to get through the day, I am here.
With the amazing and unrelenting support and encouragement of my wife, children, parents, sisters, extended fam, close friends, the Phi Sig brethren and of course, all of YOU here on this site, in 2011, I was able to press on through the severe, reoccurring, multiday pain episodes and continue to be functional/productive with my professional/business efforts. You may be surprised, but even in my incapacitated state I was still able to deliver on and achieve 100% of my stated business commitments, goals and objectives. My performance rank came in at the highest level possible (Top 1%) and I was one of the few to be given a formal award Top Performance in 2011.
In some strange way I feel as if the Universe has chosen me such that I could help lead those that must live through chronic severe pain episodes - to show them that you can deal with it and get back out there to live your life as opposed to holing up alone in a dark room all day and seeping into a deep, dark spiral of depression.
Acceptance is a wonderful milestone to achieve, so I ask you to do your best to achieve this as well. Further, I am happy to report that I am already well into the next chapter - LEARNING TO LIVE with this. I am working hard to learn to separate my Mental state from my Physical state. I am sick and tired of giving this damn thing so much of my attention, therefore, if this nerve will not behave and acquiesce, then so be it -I am ready to move on mentally. Sure I will continue fight the physical fight (the meds, the procedures, etc), but going forward my mind will be right here in my present life. I have learned that there is soooo much more to living your life than just avoiding pain. It turns out all along, there has been an infinite list these reasons right here in front of my own eyes. Of course, there will be bad days, meltdowns, relapses, etc., but every day forward I will giving it my all to be myself mentally regardless of what is physically happening to me.
In closing, THANK YOU for all your kind thoughts, prayers, words and support for my family and I over the past five months!
MAY THE UNIVERSE REWARD YOU FOR YOUR KIND SUPPORT OF ME.
PS If I can help you or someone you know in anyway, please privately reach out to me for support as I am happy to help in any way, shape or form. Trying to help give Karma some momentum here. ;-)