I had an appointment this week with my pulmonologist in Green Bay. Each visit I am asked to perform specific test to evaluate the strength of the muscles my lungs need to function properly. The average or normal person has a forced vital capacity (FVC) of 80%. Prior to my hip surgery in December 2018, my FVC was 74%. This is when I noticed my body wasn’t feeling right. In February 2019 my FVC was 59% and in March it was 47%. Today it was 36% and this brought up a conversation with the doctor that I again was not ready to have.
He said that I would need to begin thinking about whether I would want a tracheostomy. This is a huge life change not just for me, but for those who are caring for me. I am still uncertain at this moment what I will do, so I am asking you to pray that I make the right choice for me and my family.
I have images of being unable to speak, breathe or eat on my own. I know right now how frustrated I become when unable to communicate with others due to poor speech or being on my ventilator. Images of watching my grandson play and not talking to him or telling him jokes. Me being unable to tell my wife how much I love her. Unable to speak to my kids and communicate my love for them. Images of solitary confinement in my body fill my mind. How is that living? On the other hand, I would be around longer to see my kids and grandson grow older. As long as God allows, I would have Cindy by my side. Please pray I do the right thing.
The Day to Day
There are days I feel like giving up. My mind tells me I can do things I’ve done all my life, so I get out of this chair and pursue my interest to only endure a short time. My legs feel weak and my breathing is laborious. I’m fooled by “mind over matter.” Experiences like this make it difficult to stay positive. It seems like every Sunday I feel worse in the morning than other days. There have been a couple of Sundays I chose to stay home and not preach. Most of the time I power through and go to church so I can bring the message.
The apostle James tell us that we are to give thanks for all things. I’ve learned to thank God I’m faced with ALS. This experience has taught me more patience, compassion and understanding the feelings of others. My eyes have been opened to all the hurt around us each day. I thank God I’m still alive. I thank Him for the good days I have and the bad days I live through. I thank Him for my wife. Oh, how she has been a blessing to me. I’ve never felt so loved than since this journey began. Cindy has been so understanding and patient with me.