By Darren Gabbert
My name is Darren Gabbert, and I have an advanced form of muscular dystrophy called Type 2 – Spinal Muscular Atrophy. This genetic condition affects the nerves that control muscle movement. Type 2 of this disease is characterized by moderate onset and progressive weakness in arms, legs, lower torso, and respiratory muscles. I have never walked, but had reasonably good use of my arms through childhood. In the early nineties I lost most of the use of my arms and hands, and by 2004 I began controlling my power wheelchair through a single electromyographic (EMG) switch. From this EMG sensor I can navigate my wheelchair, adjust my wheelchair seating, activate environmental controls and operate all the features of my smartphone.
My life has many challenges. And yet, God has given me much to work with. I have the blessing of being married to my best friend, we have three children and four grandchildren. I have worked for the University of Missouri’s information technology department for 28 years, and continue to do research and grant writing in the field of assistive technology. In 2013, I had a severe pneumonia that required a tracheotomy. Since that time I have relied on augmentative and alternative communication. My life’s journey has been filled with God’s grace, amazing people, technology innovations, exceptional medical care, and a lot… a lot of change.
I am a born-again Christian, and firmly believe that God has a plan and a purpose for each of us. God does not ask anything of us that He is not ready to equip us for. It is my dogged faith in that that keeps me going forward.
I cannot overstate the blessing I received from my mother and father. At the age of 20, during the 1960s, they defied all the stereotypes and attitudes of their rural farm community, moved to town, and raised two disabled children -- two children who would go on to earn college degrees, have successful careers and enjoy happy marriages. That said, chief among the amazing people in my life is my lovely wife Denise. Without doubt, God brought us together. And together we have overcome many obstacles and have always managed to laugh each day. I see a lot of people with dysfunctional marriages, and I am thankful beyond measure to have a healthy one.
We are of the Mennonite faith and enjoy the privileges and responsibilities of a faith community. We bare no burdens alone. The Mennonite faith and culture shows in practice that when one member suffers, all the members suffer with it; or one member be honored, all the members rejoice with it. We enjoy a great deal of security within our spiritual family.
Technology is a fundamental part of my day-to-day life. Trusting technology is a little bit like trusting a cat. But overall, I have been very blessed to have access to life changing technology innovations. For 20 years I was a power user of speech recognition technology, which kept me very competitive in my early career. When I could no longer speak, my boss (and dear friend) never even questioned my return to work. And with the help of some colleagues from Georgia Tech and a technology company in Tulsa, Oklahoma, I was soon being productive again. I can honestly say that, over the course of my life, technology has increased my abilities at a faster pace than the muscular dystrophy has diminished them.
I am 51 years old which speaks volumes to the level of health care that I have received. From the time we met, Denise has been devoted to my care. I admit I have sometimes questioned my sanity for marrying a social worker, but truly I would not be here without her policing every hospital stay. I have a great team of health care professionals at Mayo Clinic that have proactively kept me healthy and active. My main doctor there has treated me for nearly 30 years, and will answer my emails typically within 30 minutes.
But as good as Mayo is, if I have pneumonia, there is no where I want to be more than Boone Hospital. The first time I was admitted to Boone I was in pediatrics (ya, a long time ago). And the last time was this past November. I could text my doctor what was going on, when I arrived the front desk had everything arranged for a direct admit to ICU, and the ICU nurse had recognized my name and had the room stocked for my unique needs. Health care doesn’t get any better than that.
As I said, my life’s journey has been filled with God’s grace, amazing people, technology innovations, and exceptional medical care. And through it all we face change. We adjust to change. We accept change. Many challenges. Much to work with. Life is good!
Who Is Darren Gabbert? from Boone Hospital Center on Vimeo.