Unexpected Changes

Unexpected Changes

by Steve Jacobs, Trinity UMC Member

Life is full of changes. As I’ve grown older, I’ve come to accept many of them. Even living with ALS is better than the alternative at this point.

For me, many of those changes since the ALS diagnosis have been experiences of loss. I first lost the ability to lift my carryon bag into the overhead compartment in an airplane. I’ve since become a lefty as my right arm and hand no longer work.  Thankfully, I had already retired as a dentist with the Jackson County Health Department. My right leg is no longer reliable for walking or standing, so to save energy and reduce fall risks, I use a wheelchair almost exclusively.  

As with most neurological diseases, these changes make me appear different. Yet, I am still the beloved child God created. I am thankful for a church family that recognized a need and responded—with more accessible entrances and designated pews in the sanctuary that aren’t only in the rear of the church where it’s difficult to see and hear.  I’m grateful that an entire Lay Academy was dedicated to learning how to be a more welcoming church and for the information and insights shared by Dr. J.R. Harding, Disability Advocate, FSU Instructional Specialist.

For those who are fully able, sitting where you wish in the sanctuary with family or friends is not an issue. Thanks to the recent updates, I can now do that and not be an obstruction. I still will not be able to visit in the homes of many friends, as most residences are not built to be accessible. I understand that until you need accommodations you probably have no thought about them. As our congregation ages, we need to consider the requirements of others even more. Including someone with special needs in the planning would be particularly helpful. 

Due to my disease, I will never again sing in the choir, walk to the altar, speak from the pulpit or play handbells. Thanks to the marvelous technology we took advantage of during the pandemic, worship services on YouTube and meetings or classes via ZOOM, I can still participate or even teach (until I lose the ability to speak). And I can always sing and pray, even if only silently. 

Thanks be to God that I developed ALS at 68 when I had already lived a full life and checked many things off the bucket list. Many are not so fortunate. Thank you, church family for recognizing the changing needs of many of us. Your acceptance and support mean so much and make me feel less of a burden and more welcome in the faith community I love.