After I was hospitalized for a week, I took a medical leave of absence from school to recover, my mom went back to work, and my brother went back to school. Days were spent painting, cooking, researching, and re-watching The Office. Although this sounds like a dream to some, I was not happy...not at all.
My junior and senior year I had worked so hard to maintain a 3.9 GPA, to actively participate in my extra curricular activities, and did community service so I could be afforded the opportunity of a good education. I had applied to ten schools (got into nine) and applied to over 50 scholarships in which I was a grateful recipient of many, including one presidential scholarship covering over 60% of my tuition. My point in sharing this is not to brag about my accomplishments, but to set the stage of the feeling of loss and resentment.
When I got sick and was forced to stay home to recover, which included getting my first Rituxan infusions, seeing many specialists, and regaining sensation in the lower half of my body, on top of having low self-image because of the copious amounts of drugs that distorted my face, I was so resentful. Why me? Why did I get sick? Why did the person who worked so hard to get accepted and afford college get so sick? Why. Me.
I will never know exactly why I got sick. NMO is an orphan disease which means not much research is being done and any research that has been done shows that there is no pattern to who is afflicted with this life-threatening disease. The only thing I can do is continue on with my life and strive to be healthy and happy. I've learned at a very young age that I can never take anything for granted and I try to live every day with that "YOLO" mentality.
I am by no means saying that I have mastered the art of acceptance. There are moments in my life that that feeling of resentment creeps back; moments like people talking about their freshman year experience or when people say things about their freshman year friend group that became their 'forever friends'. And if I ever had another attack, the same wave of trauma and devastation that hit me the first time would probably overcome me again. But I have at least learned that on my good days I have to appreciate the feeling in my legs and on my bad days to continue being strong because things get better when you treat your body with love.
In dealing with the grief of my newly diagnosed disease there were good days and bad days. Healing, both physically and emotionally, is not a linear process. Bad days were sitting in the basement or in bed completely numb to the world around me. Bad days could also be terrible spasms that ached, a burning bladder, or pops and zaps in my spine as nerves reconnected. Good days were days spent being productive, learning to cook the AIP way or family visiting and doing something as simple as grocery shopping. It gave me something to look forward to. Good days were also the days that the spasms calmed down or the buzzing in my feet and spine slowly started to cease.
I was never alone in the process of recovery because of my strong family and the resources I was provided.
While home from college, I went to a child life specialist. A child life specialist is someone, like a therapist, who talks and does activities and helps a child, specifically afflicted with traumatic health problems, cope. It was a time in the week that I really looked forward to because I could vent about my frustrations and fears to someone who understood.
My Aunt Linda was also someone who made this time easier, and at times a lot of fun, for me. She lives in Manhattan and because my doctors are in NYC, she would meet me at appointments and then have me stay at her apartment with her for a few days. She'd take me for great food, to awesome exhibits, watch my favorite guilty-pleasure TV shows with me, and let me wander around the neighborhood - allowing me the freedom a normal college kid was supposed to have. Looking back, I have nothing but smiles and good thoughts when I think of her and how much she helped me through the trauma.
Writing about this now, even 15 months later is really difficult. Looking at old pictures and remembering that pain...there are no words I have that can describe the heartache I feel. However, that same heartache that can debilitate me, also, inspires me. It inspires me to eat healthy and take care of myself as to not trigger an attack. It inspires me to really take a hold of my life and get the most out of it. It inspires me to dream big and reach for things that are seemingly impossible, improbable, and unrealistic because the impossible has already happened to me, I got sick and made a 95% recovery. And for that, I am truly thankful.
Comments