A Tale of Two Lives
What a mid-life crisis I had. Not even a month had passed after my fortieth birthday when I started to fall hard and often. The odd thing about it was that these falls would occur when I was walking normally with no obstacles in my path. One fall was so serious it sent me to the hospital with a concussion. It was this event that began my trek to an ALS diagnosis on July 3, 2012.
Part of accepting my fate, I believe, was looking at my life as two separate entities: my life before ALS and the life I am living now. In my past life, I was not the greatest person. An aggressive, over dramatic, quick tempered quality permeated my every move. I was not a very friendly person, the only time I really smiled was after having a couple of drinks. The best thing that ever happened to me was falling in love and marrying my best friend, Robin.
I do not let this diagnosis burden me. Yeah, sure it can be depressing to live with a terminal disease, but I have accepted this fact. I choose to live with ALS refusing to submit to the negativity this illness brings. ALS has taken my movement and my ability to eat and breathe, but it cannot touch my soul. My appreciation in the beauty of a new spring – ALS cannot touch this. My intense love for music and writing – ALS cannot touch this. My insatiable will to live – ALS cannot have this!
Technology is amazing. Since I am a quadriplegic, everything I do revolves around eye-gaze computing. For instance, I am writing this article on my Tobii I-15. I had a tracheotomy done recently and am being ventilated with the portable Trilogy. This is a great asset because I can go to the park with my wife and dog, Allie. With today’s technology, along with future developments, the quality of life for a pALS has never been better and will continue to improve.
I am happier than I have ever been in my life. This ordeal has brought my family closer together. More importantly, my now intimate relationship with God grows daily, and my faith is unbreakable. It says there will be a cure someday – hopefully sooner rather than later.
Kipling A. Jackson 4/21/2014