Ever since I was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in 2005, I have noticed that people are 100 percent confused about the deadly disease. I need to set the record straight: having ALS means that your motor neurons are dying off; you start losing your motor function in different parts of your body. It is like being trapped in your own body, with your mind intact.
For me, ALS started in my right index finger and progressed to hand and arm weakness on my right side, which eventually migrated to my left side. Eight years later, I can still walk with assistance, but spend most of my time in a wheelchair. I can still speak, but my speech is soft and slurred.
That said, the things about me that have not changed include my eyesight, hearing and brain function. In fact, I believe that some of these functions have been enhanced as other parts of my being have diminished.
Recently I was hospitalized with a bacterial infection, and although I received great care, I was astounded by the number of nurses and doctors who spoke to me slowly (as if I couldn't understand them) and loudly (as if I couldn't hear them). If medical professionals are confused about ALS, or Lou Gehrig's disease, I can understand confusion and lack of awareness within the general public.
The experience in the hospital and a recent visit with family members, who I hadn't seen in a while, prompted me to write this blog post. It needs to be said: people with ALS (PALS) can see, hear and perfectly understand what you're saying.
Recently, while perusing Facebook, I came across this powerful image by designer, Mohamed Ghonemi.
This simple image perfectly communicates everything PALS feel every day. It is very frustrating to have a head full of thoughts and ideas that you are eager to share with others, yet you have no easy way to express them.
Folks, although my mobility is impaired and my speech is slurred, here's a partial list of some of the things I can do: run my household from my iPad, give my partner orders, pay our bills, research the latest medical advancements, hire my own caregivers, communicate frequently to family and friends, help raise funds and awareness in the fight against ALS, communicate with my doctors, order my prescription drugs, buy our groceries, buy my clothes, organize our taxes, find college students to build me a robotic arm to help me feed myself and continuously make friends with other PALS up to 3,000 miles away.
Granted, I get frustrated when my partner and caregivers can't read my mind or carry out my instructions as quickly as I am thinking. But the simple message is this: we can hear, see and think. And, we have plenty that we want to communicate! Just know that the next time you meet a PALS, try to look us in the eye when you are talking and, remember, there is no need to shout. We can hear you!
Randy Pipkin was diagnosed with ALS in 2005. He is the 2013 Chair for the Breakthrough ALS campaign for the ALS Therapy Alliance.