Survival Day #16, A Year of Loss and Discovery
Updated: Oct 23, 2021
This year, Survival Day began at 1:45am when a searing phantom pain disrupted my precious sleep. Awareness dawned before physical reaction and I was able to clamp down on the rising scream before it erupted into the night. Irena still slept beside me. I propped myself up on an elbow, wondering if that was just a single pain, or the beginning of an onslaught.
Within seconds a follow up pain, more intense than the first, burned through the space where my lower left leg should be. I buried my face in my pillow hoping to muffle the moan that was escaping my clenched jaw. When it passed, I took off my cpap nasal mask and gulped down some water and two Percocets before the next pain hit. This would be an onslaught.
Irena is always aware when I suffer through a night like this, but I still try my best not to wake her. An onslaught of phantom pains will be random and intense, and tends to stretch out over a long period of time. If it was just one or two minor pains I would stay in bed and try to find what ever nerve is causing the attack to massage it away...sometimes that works...but when it's going to be bad I need to leave the room and give my wife a chance to sleep through what remains of the night. The next wave of phantoms began their assault as I reached for my robe (Jedi...bathrobe).
Unseen flames licked at my phantom feet as I pulled my robe around me. The Force was not dispelling this phantom menace; in fact, it was paralyzing. I collapsed on the end of the bed, breathing heavily, unable to form a coherent thought much less transfer safely and quietly to my wheelchair. Fifteen minutes of continuous phantom burning later, my breathing had intensified enough to rouse Irena from her sleep. She placed a gentle hand on my back and asked if I had taken the Percocet, as she knows I resist turning to the narcotics as much as possible in an effort to avoid addiction.
"I've already taken all I can." I reply through clenched teeth. Moments later, the pain subsides enough that I can transfer to my chair and leave the room. I tell Irena that I love her, and to try to get back to sleep, as I leave. I go to the garage and watch the nocturnal activity of our quiet street from the open garage door, mindful of our neighbors as I still try to control the urge to release the pain in the loudest screams possible. This is not how I wanted to begin my Survival Day.
It has become a holiday for me, like a birthday of sorts, as it is the anniversary of the day that I didn't die. That's actually minimizing all of the days following the car accident that I also didn't die; the weeks spent in a medically induced coma until my body was strong enough, and my injuries healed enough, for me to begin to return to the world of the living. But October 22nd, 2005 was the date of the event that started me down this path. In the early days this was a day that loomed over me while I fell into depression and aggravation as the date drew closer, but in time it became a day that I look forward to. A day of introspection, a day of reflection, and a day of survival.
Looking back on this past year, that survival has become all the more precious. There has been a great deal of loss this past year. We have lost family, friends, family of friends, members of our congregation and community, and even a beloved pet whose presence somehow made dealing with all of the other losses more bearable. Covid stole my friend Scott from us right after I had to put my 21 year old cat to sleep; the first pet who came to live with me after I lost my legs. Hobbs' absence somehow made the loss of Scott Isenhart all the more unbearable. Something I am still struggling with.
This past year has also been a year of discovery for me. Through both my outreach consulting work for a local non-profit, and my step-son's high school athletic career I rediscovered skills that I had long since thought lost or inaccessible to me due to my disability. (People often ask how long it takes to adapt to acquiring a physical disability. Well, as of today we're sixteen years down the road and my family and I are still learning new things. I say "we" because my family acquired my disability right along with me). In the course of my outreach consulting work I connected with a virtual exercise club whose workouts reminded me of the types of warm up exercises we did when I was a teenage kid taking Karate lessons.
I earned my first black belt in Shorei Goju-Ryu when I was sixteen years old; I earned my second black belt before I graduated from high school. At the age of 46, there aren't many left in my life who were present to witness those achievements. When I lost my legs due to burns sustained in a car accident caused by a teenage driver, I felt like all of the time and effort that I put into those two black belts was a waste of my youth. As I began learning to use prosthetics during that first year after the accident though, I realized how much I was actually drawing on the body awareness that I had developed through the effort earning those two black belts to now adapt to walking with artificial legs. The time spent in my youth was still useful, vital, in fact, to my adaptation but I was certain I would never again practice Shorei Goju-Ryu.
Through connecting with that virtual exercise club I wound up helping one of their members, a young woman with Downs Syndrome who lives in Georgia, to complete her senior project on martial arts. For the authenticity of her video project I ordered a new Gi (karate uniform) and belt that fit around my body...a body that seems to have expanded considerably since I was 18. I drew some of the young man I once was back into present day to demonstrate punches and count in Okinawan, but truly performing the martial art was still a thing of the past.
Around the time that I completed my virtual work with the high school senior in Georgia, my youngest step-son, Cade, qualified for the National High School Track Meet in Pole Vaulting. Not only did this create an opportunity for Cade to have a rare end cap achievement for his senior year of high school, but it also, quite literally, flung him off the top of a pole into his college career at UIndy! Regardless of my disabilities...and I have acquired more than just one as a result of that car accident 16 years ago...Irena and I were not going to miss the opportunity to watch our son compete at Nationals, which was held in Eugene, Oregon. So, with barely three weeks notice, we had to figure out how to get me, and all of the equipment that has to travel with me because of my amputations, and sleep apnea, etc, across country on short notice without going broke.
The answer, of course, was to face another one of those activities that I had long ago told myself I would never be able to really enjoy again because of my disability. Camping. In this case, driving across country, pitching a tent on the ground each night, sleeping in a sleeping bag on an air mattress, cooking over an open fire, camping.
It was absolutely wonderful! At Theodore Roosevelt National Park we fell asleep with a clear sky full of shooting stars over our heads, and woke up with buffalo eating their breakfast in a field less than 50 yards from us. We discovered that I can still camp, and that with the right equipment (for example, the off-road wheels that accessABILITY recently purchased on my behalf...I would have been far more mobile if I'd had those on the trip) it will be even easier.
We also discovered that you can buy a set of hand controls that you can temporarily install yourself into most vehicles, for less than $160 on Amazon. You need to know how to use them, of course, but they are very secure, functional, and can be installed or removed in under ten minutes. Sixteen years ago, when I was trying to return to my old career managing the operations at the Walden Inn and Conference Center on DePauw University's campus, I went through Indiana Vocational Rehabilitation Services to have a set of hand controls permanently installed in my Honda Civic (new at the time), so that I could drive to and from work independently. It took a year and a half from the time I made the appointment to the day that the hand controls were installed. Indiana paid a little over $1000 for the hand controls and professional installation. It cost us $150 and took one day of shipping to add hand controls to Irena's Santa Fe.
The year of discovery didn't stop there. Shortly after we returned from our travels I received a message from the Sensei (Teacher) who worked with me the most when I was learning Karate. His schedule had opened up and he was ready to re-start my training in Shorei Goju-Ryu if I was still interested. (I had reached out to him over the summer before I had agreed to work with the young woman from Georgia on my own, but he had not been available). Rather than approaching it as if I were a new student, for the last month we have been working to modify the martial art to my "new" physical form. So, tomorrow, the day after my 16th Survival Day, I will have my third Karate lesson in almost 30 years!
This is new territory for my Sensei and I. We're certain that I cannot be the first bi-lateral amputee to attempt this, but I've checked with the manufacturer of my Power Knees, Ossur, and their representative said that he is unaware of any Power Knee users who are actually utilizing them in martial arts. We've decided to approach my training by focusing on Kata (form) first. First walking the pattern of the Kata without worrying about strikes, kicks, or even stances (some of the mechanics of which are simply not possible with my prostetic legs), and then rolling through the pattern in the wheelchair. As the patterns unlocked memories covered with 30 years of cerebral dust, we gradually began adding in the strikes and approaching the stances as closely as my legs would allow.
After our first session I immediately called my Prosthetist because I had over rotated my right "ankle" and the foot was not snapping back into proper position without manual manipulation. After a diagnostic visit he determined that both "ankles" (each 7 years old) were worn out. New "ankles" have been ordered, but the old ones still provide enough stability for me to practice. Please watch the videos below to see both of our current modifications of Pinan Shodan, the first Kata in the Shorei Goju-Ryu style of Karate.
Tomorrow we will begin modifying Pinan Nidan. I wonder what new discoveries will unfold in my seventeenth year as a double amputee and burn survivor?
Feel free to ask questions, and please let me know your thoughts in the comments section. I will try to respond to comments at least once a week. If you wish to contact me directly, or would like to learn more about me, I can be reached through walkingspirit.org. Please visit and share https://gofund.me/b689d4ee to support the family of my friend Scott Isenhart, who still need our help.