3 Years

3 years.

3 years ago on this date, April 8, 2014, I was told I have ALS. 3 years ago I was told that the average life expectancy for someone with ALS was 2-5 years. 3 years ago I could have given up hope for my life because I was going to die soon.

Well, the past 3 years have been among the best 3 years of my life. I don’t say that lightly or without thinking hard about why I say that. A friend asked if I wished I never had ALS. Of course I wish I never had it, but I do, as I live in the here and now.

The moment I was told I had ALS I stood up and limped to the window. I knew ALS was bad, but I didn’t know what it actually did. I didn’t know that the motor neurons die and because of that my muscles will stop working. As my muscles atrophy I eventually, I won’t be able to walk, talk or move any body part. Eventually, the muscles that control my diaphragm will stop working and I will stop breathing.

3 years. Over the past 3 years I have met many pALS (people with ALS) in person and online. In the past 3 years I have lost well over 100 friends to this disease. Some had been diagnosed before I was, but many were diagnosed after I was.

3 years. In the past 3 years the number of clinical trials and research studies have more than doubled, but there still is no cure or effective treatment for people living with the disease

3 years. During the past 3 years I have not given up. I have not lost hope. My faith in God is stronger. My love for others has deepened. My relationships with my family, friends and Karen have more purpose and depth than ever before.

3 years. The past 3 years have not just affected me, but it has affected all of my family and friends, but person I think has it harder is Karen, my wife. Over the past 3 years, Karen is going to have to do more and more. She is going to watch me die as she helps me live. She is going to see the dreams and desires we had for retirement die as I progress down this ALS road. She has to do all this with her personal ailments and difficulties. She is not going to have a day off from being a caregiver, which is the absolute hardest job a person can have.

3 years. In the past 3 years, my love for life has gotten stronger. I appreciate each and every day that God is giving me to enjoy. I know there are going to be some very hard and trying days to come, we have had many already. I am sure there will be days I want to die, as there already have been many. But I am thankful I am still here, 3 years later.

3 years. I wouldn’t trade the past 3 years for anything. I have met some of the strongest people I didn’t know existed. I have friendships across the world, not just the USA. I have been asked to do things I never would have done, yes, public speaking – Arghhh. I have love for others I didn’t know I needed to have, and that is awesome. I thank God for each and every day. I thank you for your love, support and encouragement. I thank Karen for everything she is and does.

Love Life, LIVE LIFE!!!


3 thoughts on “3 Years

  1. We met on the Silver Sea Muse in March. I was the guy who was born and raised in Washington and we spoke about where you lived and went to BCC High School and talked about the Redskin players of the good days. It was certainly my pleasure and an honor to tell people that I met someone like you, with your upbeat personality and positive outlook on life. I think of you often and wish you and your family all the best. I would like to make a donation in your name. Please let me know where it would do the most good. God Bless

    1. Hey Ray. How are you doing? my ALS is finally progressing. It is still a slow progression but making it a challenge to stand. My arms are pretty weak so I need to plan things as come along. I hated being late, but I am late more often than not. We are still hoping that we are going to see some of the national parks north of us. If you are in Florida and bored, come on out and we can be bored together. No, I can’t sit still, or stay in one place might be a better term. I have missed our infrequent emails. I was nominated to work with a team of scientists from the Department of Defense. I may not get that opportunity and I am fine with that. I need to leave something for the kids to do down the road.

      Have a great week and terrific summer. I am glad that the virus has been slowed down here in the states. No more cruises unless it is a river cruise. The Mississippi would be great as would rivers up in Washington.

      I am thanksful I met you. Ken asks if we are still in contact with each other. I hope that we get to talk again, but you never know.

    2. Hello Ray.

      I hope you are well with this COVID. I can’t believe that I am coming up on 8 years living with ALS. I have to get to bed. It has now completely stopped me from walking and driving. Breathing is still ok, but more labored. I feel bad for Karen. Her mom has Alzheimer’s, her husband has ALS, her school had to shut down and our youngest moved to Oregon. She never thought that any of the kids would move. Jordan and his wife did, but they moved back.

      I tried to reply vis the old email address but had no success. I called one of the pharmacies and left my name. Nothing came of that. I do hope you are well, safe and healthy. You lit up my life when I saw your email. Thank you so much for saying hello.

      All my best,

Leave a Reply