My name is LaKia… those familiar with my art call me iLLz . I was a bit of a late bloomer, I think. Always slightly small for my age, with a wiry athletic build that I did absolutely nothing to deserve. As a matter of a fact, I was the exact OPPOSITE of athletic in every possible way. Band Geek or book worm would have been much more appropriate labels to slap on me as a youth, had it not been for my scrappy temperament.
During a typical scorching late August band camp, I recall feeling light headed as I tried to cover down in the last formation of the day. Thinking to myself, “YES” as the, “FALL OUT” command ending practice was shouted by our Drum Major. I head straight to the water fountain completely parched from a full day of music and marching before I… woke up in a hospital bed.
I was then experiencing the onset of what was diagnosed 14 years later as CPT II deficiency. Carnitine palmitoyltransferase II deficiency or CPT II deficiency is a form of MD that is characterized by the inability to break down long chain fatty acids, a necessary source of energy. At 28 years of age, and the peak of my corporate career an illness that robbed me of my sophomore year of high school was threatening to derail my life… yet again.
The past 7 years my physical health has progressively deteriorated, but my spirit has begun to soar. Understanding that I cant change my genetic make up, so Muscular Dystrophy is part of who I am… but does not need to define what I am capable of accomplishing. I began assembling a new team of medical professionals in 2007 who understood my illness, my overtly controlling personality, and my drive to live the best life I am capable of for as long as GOD intends me to be here.
Four years, many dozen hospital admissions, a pic line, three portacaths, and a spinal cord stimulator later… life is better then ever. On the heels of what proved to be the perfect storm of ailments including but not limited to: Gastroperisus, Ulcerative Colitis, A herniated C2-C3, and a smidgen of Muscular Dystrophy, walking at all became an insurmountable task. Six months ago my world came crashing down around me when one day it was not just uncomfortable to walk periodically but painful to bear any weight at all, making my wheelchair a daily reality.
Oh, did I mention we live in a top floor condominium with no elevator? If not, add that to the list of how The Muscular Dystrophy Association helped give me back my independence! I know you’re wondering, “why would you live in a building with no elevator?” I LOVE THE VIEW. Ok, more realistically I was in denial about my personal limitations. But if u know me, that comes as NO surprise.
Never really outgrew that fearlessness of my youth. So hard work and determination win every time in my mind, except when your genetic make up says otherwise I have since learned.
Based on my own ignorance I was completely unprepared for life in a wheelchair, even though I had ample to to do so. Fortunately for me in swoops The Cherry Hill Branch of The MDA to the rescue. In the blink of an eye all my new found mobility/disability concerns were not only address, but quickly and professionally resolved to MY satisfaction. MDA contacted vendors on my behalf, and really took all of the stress and pain out of my transition. Allowing me to focus on the task at hand… how do I get out of this wheelchair? I am not ready to let go of my legs yet!
With MDA’s help I was able to locate physicans familiar with Muscular Dystrophy and willing to look outside of conventional medicine to find ways to increase my quality of life. I had my spinal cord stimular implanted December 15, 2010… and was able to bring in the new year standing on my own two feet!
I am walking in The 2011 Muscle Walk because I CAN! Thank you MDA!
Spinal Cord Stimulator here I come!
penned by LaKia Gooch on Saturday, November 20, 2010
Woke up at 2am… finished my pastry dough prep for the 2011 MDA walk bake sale. Got in the shower, washed & blow dried my hair, then flat ironed it into large ringlet curls. Chocolate brown Tommy Cargo pants with a matching cream & brown knit top, Stilletto Timbs, Tommy watch, and dog tags make it official. My azz kicking attire in tact means its time to go.
Arrived at 8:30 for an 8 procedure, I swear I heard 8:30… nonetheless the office staff was upbeat and more then accommodating. My BS representative Kristin McCabe, who called to introduce herself to me the prior day walks up to me and introduces herself with a smile. Just as I expected I was met with a fresh faced 20 sumthing not yet jaded enough to give up on believing one person can change the world. Kristin walked me thru the trial expectations, answering with ease every relevant, and often completely random question I could dream up. Following a demonstration of how to use my remote control, my nurse sat with me to review my consent forms.
5 e-signatures later… in glides my anesthesiologist, Dr. Enlow. The epitome of cool, calm, & collective… Dr. Enlow quickly, but thoroughly reviewed my medical history paying close attention to my SVT, and drug interactions. We finished up with an IV painlessly inserted for my upcoming Propofal nap. The next 10 minutes were spent with multiple hands on deck to clean and prep the surgical area (my lower back), a soft “I will start your anestethia as soon as Dr. Yanni is ready…” from Dr. Enlow and just like that… here comes Dr. Yanni ~ LIGHTS OUT!!
I vaguely remember a lovely tingling sensation, and the next thing I know I am attempting to sit straight up on the operating table. Or at least I thought I could… all I could hear was a collective, “whooooaa!” As Dr. Enlow gently swoops my EMO doo back in place she follows with, “I love that hair style on u!”
And just like that… I was #WIRED4SOUND!
Spinal Cord Trial
Woke at 6am as if an alarm clock had been set the night before. Feeling completely enveloped with Love , most likely due to waking up wrapped tightly within my wifes arms like a present on Christmas morning. I am anxious to get the day started, while secretly never wanting this moment to pass. My arms are extremely achy… just holding my lightweight smartphone is excruciating. Better days are so close I can taste them! And boy am I hungry!