Anyone who is familiar with ALS knows that it is tenacious and a master thief. It robs its victims of the physical use of their bodies, but maybe even more damaging is how it rapidly steals away elements of life like privacy and dignity. Once the initial shock of hearing that you have 2 to 5 years to live starts to settle, a whole other category of stress begins to mount by the minute.
What am I going to do about my job? Will I get married? Will I have kids? That’s where it starts and somehow you find yourself wondering, What if I can’t wipe my own ass? I assure you that this is not listed in the ALS brochure.
There is a term that my girlfriend and I use, “the new normal,” which I think is paramount in staying ahead of the daily challenges that a progressive disease presents. Unlike other diseases, there is not much of a treatment plan given to those with ALS. And if lack of treatment wasn’t frustrating enough, its progressive nature makes ALS a moving target. With my body and abilities ever changing, we are forced to constantly adapt. It seems as though the moment the ‘new’ way of doing something becomes normal, it’s time to adapt again to the ‘new’ new normal.
These days I pee like a 4-year-old boy. There, I said it. For anyone that has potty trained their son, the scene of a bare butt, pants around the ankles, little person standing in front of the toilet is a familiar sight. That is my new normal. Without the use of my hands or arms I need someone to unzip my pants and pull them down (and then back up after I’m finished) every time I go to the bathroom. You can imagine the challenges that are presented when out and about with friends and family. Lets just say I have seen my share of women’s restrooms.
Fortunately for me, I have been and remain to be an extremely positive person before and after my diagnosis. Sure, having to have someone cut up my food or feed me while at a restaurant was difficult at first, but as time went on and I continued to surround myself with the right people, it became second nature. As the disease has progressed I do need more help throughout the day from the moment I get up to the moment I go to bed.
Thanks to the ‘new normal’ mantra, my family and I have always maintained a very accurate and candid view of ALS and how it affects us all every day. This positive thinking applies to every process from brushing my teeth to having my hands placed on my desk so I am still able to work on A Life Story Foundation every day.