"Life goes on" despite multiple sclerosis

September 03, 2015
Ed. Note: This blog post was written by Ed Johnson about his experiences before and after being diagnosed with MS

I miss coaching college and high school volleyball. I was a college volleyball coach for 15 years with various schools. Perhaps the high point was when our Missouri Valley College men’s team was ranked number two in the entire nation. We were so good that year that many bigger-name schools refused to play against us, fearing embarrassment if our smaller school won. That was before M.S.

I always enjoyed volleyball, and I had the time to take it up pretty regularly. I played at various open gyms in the area. My volleyball playing got progressively better, and I interviewed at Everett Community College. The athletic director, Larry Walker, hired me to coach at his school, which I did for nine years.

When I started coaching at Everett, they had won a total of only 10 matches in the preceding 10 years of the program. My first year seemed to continue that pattern, with 1 win and 23 losses. We improved rapidly, and that second year we had 12 wins and 13 losses, an impressive record for Everett. Our performance continued to get better: in the third year we gained 18 wins and only 4 losses and went to the NWAACC championship tournament for the first time in Everett’s history. During the last part of my nine-year run as volleyball coach at ECC, our team won the league championship and performed very well at the tournament, partly due to our coaching and partly due to our recruiting, and of course largely due to the efforts of the women on our teams

During my years at ECC, I also continued to coach club volleyball. Our club team was the most successful in the region, with over 100 girls participating in it. Unfortunately, while our volleyball teams excelled, my marriage crumbled. My wife and I ended up filing for divorce in 1998; however, we had produced two amazing boys, Austin and Kyle.

After the divorce, I had an opportunity to go with a buddy and coach at Missouri Valley College, which I did. I am not sure if it was to get away or for the adventure of a new coaching opportunity, but it sure turned out to be the right choice for me. My first year there I coached the JV women’s team and we did well. I had conversations with the administration and we decided to start a men’s program. I would be the head coach and still continue coaching the JV girls.

The men’s program took off; in fact, during this run, we were ranked as high as #2 in the country at one point. Even with this success, there was still something missing from my life: my kids. I did fly home several times, but it was not as good as seeing them at the drop of a hat. So, in November following the girl’s season, I moved back to Seattle.

When I was in Olympia in January, I was coaching a club team and helping out at Evergreen State College. However, while I was in the gym, I noticed there was something wrong with my walking: I was not walking straight, but like I was drunk. I was having numbness in my face and limbs. There was a nurse in Olympia who suggested that I go to the emergency room to get checked.

The hospital in Olympia said I either had M.S. or a stroke. I feared it might be a stroke. I was saying, “Please don't be a stroke. Please don't be a stroke.” I knew what a stroke was, and I had no idea what M.S. (multiple sclerosis) was. I was in and out of the hospital so much that they thought that it would be better for me to come up to a place in Seattle. I had a lumbar puncture and other neurological tests. I was told I didn’t have a stroke, which was a relief. Instead, I found out that I had multiple sclerosis.

Multiple sclerosis has changed my life almost completely, but I have come to be able to cope with this radical change in my situation. I have learned that, in dealing with this affliction, patience and persistence are crucial. I had hoped to have a long-term career in coaching. Instead, I am now dealing with the challenge of being paraplegic and living on my own.

Certainly, M.S. has caused numerous medical and personal complications in my life, including the loss of jobs that I loved, greater difficulties in traveling, and preventing me from continuing as a successful volleyball coach---recruiting, training, and guiding my students.

Despite the seriousness of multiple sclerosis, which has made me wheelchair-bound, it is not a death sentence. I run a small business selling t-shirts with inspirational messages related to MS, all profits of which go to the local Swedish Multiple Sclerosis Center. I live from day to day, one day at a time. I love my sons, to whom I dedicate this post, and I find things to enjoy every day. Life goes on, although at a different pace.