Of all the things that have given me hope after my diagnosis of bulbar-ALS in August of 2020, it was the possibility of the world getting reconnected by getting vaccinated. The vaccination of the whole world was a hope last fall. By Christmas it was going to be reality. Now, on the cusp of summer, we’re working our way toward herd immunity. I was so grateful for stories within my family, work colleagues, and others, the opportunities they were looking forward to in order to reconnect with those they had not seen in months.
Reconnection is taking place as we speak. Parents are seeing children and grandchildren in person for the first time in months. Reconnection is oxygen. It is blood flow. It is joy. And reconnection is hope, when months have gone by full of anxiety that we would be one another’s inadvertent lethal presence. This is the moment of reconnection for many of us and our families and friends. Don’t underestimate the power of this reconnection in light of so many who have died and for so many of us who face the imminent impact each morning of our terminal diagnosis. Reconnection is important for us all.
There are a multitude of reconnections important to those of us facing down an ALS diagnosis. The most important one is to wake up each day and reconnect our bodies with the life we lead. Some mornings you wake up and immediately feel the change when you put your feet on the floor and move your weight over your feet. Other days it isn’t until you try to eat or drink and your lower lip folds under your upper teeth and you bite it incessantly. Other mornings it takes a few minutes for you to realize that your weak tongue is actually stuck to the top of your mouth and you have so little control over it you almost have to reach in your mouth with your fingers and pop it off the top pallet like peanut butter you can’t remove.
Reconnection with your body and with the world we live in each day is so important for those of us living with ALS. I am grateful for each day I can wake up.
Initially, every day I woke up and remembered my diagnosis was hell on earth. Somehow, in about 10 months, I have moved from hating the mornings to wanting to get up as early as my restlessly tired body will allow to work, hang out, and just live the life I have as deeply and as intensely as I can for as long as I can. I’ve still got lofty goals with ministry and the teams with which I am a member, as well as the teams that I lead. Personal impacts on the world include finishing articles and books long ago conceived and new ones that have emerged because of my diagnosis and living through the pandemic. These are deeply important. And the other priority I have is to do my part in the great puzzle that is understanding and solving ALS.
With this in mind I’d like to start another campaign to elevate the need for three things I am finding in 10 months of living with this disease. In the spirit of reconnection with the world I am starting a #LoveStrong campaign to reconnect with those we love the most and to give witness to this power through pictures. #LoveStrong means we can stand in the face of the most lethal diseases and times in 100 years and make progress and solve the biggest mysteries of the deadliest disease.
#LoveStong is elevating three areas: