I have ALS and have a decision to make. I have to decide how long I want to live.
ALS (Lou Gehrig's Disease) is a neuromuscular disease that gradually destroys the muscles of its victims. Most people with ALS die when their diaphragm and intercostal (between the ribs) muscles become so weak they can no longer breathe properly. As a result, carbon dioxide builds up in the bloodstream, they fall asleep, and they do not wake up.
A way to delay this event is to use a BiPAP machine. I wear a BiPAP machine at night. It blows additional air into my lungs with each breath I take. I will use it more and more during the day as my ability to breathe becomes more compromised. Eventually, the BiPAP will not be enough to sustain me and that is when I must decide if I want to have a tracheostomy and be put on a ventilator.
A tracheostomy is a surgical procedure in which a hole is cut in the front of the neck into the trachea. A tube is inserted and a ventilator will be attached that will do the work of breathing for me. The tracheostomy could extend my life for years. I will need more care and my disease will still progress. I might reach the point of losing all muscle movement, including blinking my eyes, and be unable to communicate. I would be what is called “locked in” with an active mind but completely motionless. In a 2004 New York Times article a doctor reported that 90 percent of ALS patients choose to die rather than accept a tracheostomy and ventilator.
The decision I have to make raises many questions. What is a “natural death?” I always assumed I would die when my life was taken from me. When I was sick enough to die, I would die at home in my own bed surrounded by my loved ones. My heart would stop beating or pneumonia would kill me or organ failure of some kind would end my life. I would not want tubes and monitors and intravenous lines that would prolong my life but decrease its quality.
Is it a form of suicide to refuse life-saving but invasive surgery such as a tracheostomy? I have accepted the placement of a feeding tube through my chest wall and into my stomach. I would already be dead without it. When do I say, “No,” to additional procedures and technology such as an internal catheter, intravenous feeding and hydration, and being bed bound 24hours a day? Life is a great gift, but is it wrong to passively let it go when it becomes miserable?
fines “quality of life?” Surely, the answer will be different for different people, so what defines quality of life for me? I know what I want to avoid: chronic pain, social isolation, uselessness and unending boredom. What positive things are my requirements to keep living?
What makes my life worth living? The things that I enjoy now are visits from my daughters and friends and my writing. My faith is a tremendous comfort and challenge, and a deep source of joy. When my daughters move away, will it be enough to see them a few times a year? Are my friends enough to sustain me when I can no longer communicate with them? Will they be comfortable visiting when all I can do is stare at them? When I cannot move at all will writing be enough, assuming technological advances make it possible? When all I have left is God, will that be the time to “let go and let God” take my life?
When is enough, enough?
