Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.
I’ve been weighing the pros and cons of getting trached, that is to get a tracheostomy and use invasive ventilation to breathe for me when my diaphragm and intercostal muscles grow too weak. I haven’t decided what I’m going to do when that time comes, but I think about it more than I care to admit.
Pros: stay alive, see my grandkids grow up, continue to enjoy my family and friends.
Cons: 24 hour carE, painful transition to a new normal, greater burden on my family.
People with ALS in the U.S., who are not veterans, also must contend with exorbitant medical costs. In countries with universal health care, prohibitive cost is not typically a factor. For example, In the U.S., five percent of people with ALS choose to extend life with a trach; In Japan, where they have universal health coverage, 80 to 90 percent of people get a trach. Let that sink in.
Yes, I have personal knowledge of friends with ALS who have chosen to die because their families could not afford the cost of keeping them alive. Others chose not to extend their lives because the are tired of suffering which is completely understandable. No judgment about that here. My point being, it is unconscionable that we, one of the richest countries, don’t adequately take care of our children and people who are elderly or disabled. Downright shameful. I didn’t realize the magnitude or consequence until I was one of them.
To live or not to live. That begs the question, what defines being alive? Heart beating, breathing, communicating, walking, working, playing? It’s relative.
Let’s switch it up a little. What makes you feel alive? What’s your purpose? What brings you joy? My answers are changing, paring down, as I lose physical function. Peeling back the layers, I’m left with what’s truly important. Family and friends, loving, encouraging, supporting in good times and bad, that’s what makes my life worth living. I want to make a difference.
Are you living? I mean living, not existing. Get excited, set a big, hairy, audacious goal and make it happen. Volunteer. Bless one another. Get busy living the one life you have.
I’m Forgiven and Free and living the life given to me