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Fight rare neuro-immune disorders. Together.
Just when I thought that life was perfect, I came to the painful realization that life was not perfect after all. In 2009, I was at a point in my life where I had achieved everything that I had ever hoped for. I had two healthy and beautiful children, a loving husband, supportive parents, and had achieved my educational and professional goals. Everything was together in one package, until it all changed in a matter of seconds.
I was rushed to the hospital early in the morning on June 3, 2009, due to severe neck pain and numbness of my left arm. Within an hour, I became paralyzed from the neck down and was intubated. I was diagnosed with Acute Transverse Myelitis at C6-C7, and the cause was unknown. I ended up with a tracheostomy connected to a respirator and with a feeding tube to maintain my nutrition.
I received extensive rehabilitation for four months in an acute rehab hospital. I gradually progressed with slow return of movement of my extremities. After I made significant improvement, I was discharged home and continued my rehabilitation and recovery surrounded by my loving family in a familiar and comfortable environment. I went home with a tracheostomy and respirator support at night. I was able to walk slowly, but still with significant weakness of all my extremities.
At home, it was a difficult road to recovery. I was surrounded with memories
of things that I was able to do and faced with the reality that the perfect life that I thought I had was no longer there. Being at home with my three-year-old and five-year-old children, who didn’t understand what was going on, was very difficult to see. All they knew was that I was home again, they didn’t realize that I was no longer the same.
My journey to recovery was not easy. It was a road with a lot of uncertainties and fear. With determination and strong faith, I was eventually weaned off from my tracheostomy tube and respirator. I was transitioned to use a BiPAP machine that assisted my breathing while sleeping.
Living with transverse myelitis is a life-awakening journey to a new me. Life-style modification is a must in order for me to function and meet the demands of being a wife, a mother, and a full-time Nursing Director. Living with fatigue, muscle weakness and pain are some of my daily struggles. I continue to require a BiPAP at night to assist my muscles for breathing.
Being at the lowest point of my life made me realize the impact of strong faith that contributed to my recovery. Having strong family support and friends who were around to support my family also gave me the reassurance that things will fall back into place. Life may not be perfect, but I am eternally grateful to have been given the chance to live life a second time around.
Genevieve Castillo, RN, BSN, MSN
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