Upon hearing the story of what happened to me at age 28 (getting sick; the beginnings of physical disability), most people look at me with pity in their eyes and sympathy stitched on their faces, and tell me how sorry they are. I understand this is a response born of compassion and of a desire to comfort. But it also stems from the inability to relate, ignorance of how this part of my life experience has played out and affected me, and misunderstanding of my feelings concerning my illness and disability.
You see, I am not sorry about becoming ill and disabled. And if I’m not sorry, why should you be? It’s true my life changed completely back in 2009 – all the dreams, goals and plans I’d had for myself fell out of reach; all the hard work I’d put into earning my Master’s degree and being a Special Education teacher became meaningless; life as I’d known it for 28 years disintegrated. At first, I admit to being full of self-pity. I felt wronged by life, a victim of cruel circumstances. I felt depressed, angry and hopeless.
One evening, I was crying out through sobs and tears, “Why me?” over and over. All of a sudden, a new and seemingly alien thought occurred to me – why not me? I was perfect for this situation! I knew how to modify my environment, sometimes with ordinary household items; I knew the services and organizations that were at the disposal of the local disability community; and the whole time I thought I’d been teaching, I’d been the student. The children I worked with had shown me how to be determined, motivated and enjoy the life I was given. I could choose to wallow in grief and pity or I could embrace the new circumstances of my body and do my best with what I still had.
Since then, I’ve gone through many stages physically, mentally, emotionally and spiritually. I’ve learned a lot about myself, about how strong I am, what I’m able to handle. I’ve learned new coping skills. I’ve learned to accept my illness and prognosis and have arrived at a peaceful place with it. I’ve learned how to use my voice to advocate for myself, and now for other parents with disabilities. I’ve learned how to educate and be effective in my community. I’ve learned that my abilities and strengths far outweigh my limitations and weaknesses.
I’ve also been brought so much closer to God. I didn’t even believe in Him back when I was diagnosed, but can look back at that night and get chills because I now believe He loved me enough to be in the ER with me that night, regardless of how little I thought of or felt about Him. The director of the ER had written his doctoral dissertation on my extremely rare neurological disease and was able to diagnose me, which not only brought back some of my eyesight and saved my life, but ended the three-month-long search for what was going so wrong with my body.
My faith is strong these days and carries me through the difficult times, the scary times and even the times when doubt may creep in just enough to cause worry lines to form on my face. I believe He’s watching over me and loves me very much. He doesn’t see my failing body, my medical equipment or the awkward way I sometimes wander through the days – He sees my heart. To Him, I’m perfect. And, most days, I’m able to see myself through His eyes.
Because of getting sick and losing so many abilities of my body, I’ve been able to find gratitude, which I honestly didn’t have much of before becoming disabled. I’d spent 28 years taking every moment and each movement for granted. Now I savor each day and rejoice in what my body is still capable of doing. This has been yet another gift from what so many people seem to view as “a tragedy” in my life.
Please don’t feel sorry for me. For 28 years, I lived in a healthy, able body but had a broken, damaged and deteriorating spirit. My outlook on life was negative and my self-esteem near non-existent. Since my diagnosis, the situation has reversed itself. Now, my body doesn’t work so well, but my heart and soul are overflowing with joy, peace, contentment, self-confidence and a zest for life. I’m grateful for each day and enjoy every moment. How could I be sorry about that?
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