By Randy Pierce
“The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live the present moment wisely and earnestly.”
I’m home from my six-day stay at the Massachusetts General Hospital and feeling well despite an assortment of apprehensions. While I did provide some social media updates, I wanted to share the real struggle and ultimate result with the 2020 Vision Quest Community. I will try to answer any and all questions and wish to ensure you all know that overall I am well at this point.
I have a long term undiagnosed neurological disorder which may be a mitochondrial disease or something entirely unknown to the present medical community. My first awareness of this condition began in 1989 when I was plunged into legal blindness through the death of my optic nerves. Over many years there have been an assortment of episodes which brought the total death of my optic nerves and complete blindness as a result, a vestibular assault which had me in a wheelchair for nearly two years and what is now termed severe peripheral neuropathy in my feet and hands. These challenge me in various ways, though I’ve overall found compensation methods which allow me to continue a healthy and meaningful life.
On Sunday, February 20, I was running along the Charles river with Rob Webber when I paused, felt an awkward fading of my consciousness, dropped to a knee and with a warning to Rob proceeded to lose consciousness. I was out for roughly one minute before waking to assure him there was no pain. My pulse was steady and strong and my breathing easy. I did black out again for another minute or so and as I came to it was touching to realize how many people in the area were eager to help in an abundance of ways. As we were just about 1 mile from Mass General Hospital, it was an easy choice to visit them.
I had several more episodes of reduced consciousness. I underwent a battery of tests which first confirmed my cardiac health was excellent as that would be a leading concern in any consciousness loss. I was admitted for what would ultimately be six days of intensive testing. Geneticists (due to my past explorations), neurologists, and many other specialists swarmed me with every reasonable test to help them try and understand what was happening. Ultimately they formed a team of incredible experts who will begin a longer term search into my mysterious condition.
For the present they determined a deep brain seizure was likely causing these episodes. I’ve been placed upon Keppra, a seizure suppressant, and have had only one episode since the medication began. For the present we are treating me with the precautions of someone newly diagnosed with epilepsy such that I make choices which do not put me at risk of serious harm should another episode occur.
Despite having had a 10-20 second warning before each loss of consciousness, I’ll be exceedingly careful to ensure I won’t jeopardize myself or Autumn should this occur. This means no unsafe heights, drowning risks or even busy roads alone. I am fully cleared and encouraged to resume my presentations, workouts, and even training for and running the Boston Marathon.
There is continued follow up testing and exploration already in process. I have clear instructions on what to do when episodes occur. I’m comfortable entirely with the response of the great team at Mass General. That said, it is always emotionally frustrating to be reminded of the reasonable frailty which my condition helps to place upon me.
It is a bit intimidating to be confronted with the legitimate limitations and possible complications ahead in my life. I choose to not live my life in fear and struggle to sustain a healthy outlook as much as possible. They are not all strong moments and it is reasonable for me to have a difficult time with all of this. I will continue to put my best effort into all aspects of my life, including the medical investigations.
My reward for this effort are the generally positive results of my work with 2020 Vision Quest, NHAB, Lions and life in general such as the encouraging words shared by many along the way. All any of us can do is make our best attempts at responding as we feel is appropriate and with your help I will continue to do that as I strive for new heights… just not the fall-risking versions at the present moment!