A post from the Home Based Life blog.
Scott’s friend Chantal Cermak was the U.S. women’s speed skating champion in 1993 and competed at the 1994 Olympic Games in Lillehammer, Norway. A few years ago Chantal began showing symptoms consistent with lethal neurological diseases, and credits a home based life with greatly easing the situation for her and her husband David. I interviewed her about it:
You had a very successful run as a speed skater, including national championships and a berth on the Olympic team. What was that time in your life like?
Winning the nationals and realizing I was the best female speed skater in the U.S. was really amazing because I had no idea how well I was skating that year. I was 6th the year before and my coach never let on how well my training was going. It was still surreal to me that I could actually be going to the Olympics the next year. Suddenly CBS Sports was spending a weekend following me around and I now had a sports agent. Life was happening fast. I really didn’t know how to separate the accomplishments, in the sense that it caused me pressure to succeed for others’ expectations. Had I grown up and succeeded slowly like most, I probably would have had a good grasp of this and not let it distract me.
Another thing that made it hard to actually enjoy the experience was that I started to get the fatigue and weakness that I now know to be Metabolic Myopathy. I don’t produce the enzymes required to fuel my muscle cells. I also injured my left knee during training that July before the Olympics which made it even more difficult to make an Olympic team. I did eventually get two knee surgeries after the games. All of this was added pressure in the midst of a dream come true. I was happy, scared and excited. I guess you could say the greatest thing about making an Olympic team is knowing God hears our prayers but it may take years to answer and a different road, as I was originally a figure skater. Also, my best memories involve the road to the Olympics. Think about it, the Olympics are 16 days compared to a lifetime of training and competing.
How would you describe yourself now, in terms of home, career, etc.?
I am a stay-at-home mom. I am starting a speed skating club in Bemidji, Minnesota and coach speed skating throughout the North in different camps and clinics. I would eventually like to be a Regional Coach for the U.S. team. This will take time and my kids need to be a bit older. I like being a stay-at-home mom, but I’m very goal oriented and skating is my passion, so I really don’t think I can be a stay-at-home mom only and have peace. I have to give back to the youth what is in my heart, as well as share my knowledge of the Olympic experience and of skating.
Recently you were in a difficult situation where you believed you might have a fatal neurological disease. What tipped you off that something was wrong, and how did you and your husband handle this?
Multiple sclerosis was suspected as well as ALS (aka Lou Gehrig’s disease) and Myasthenia Gravis. It was a matter of elimination. I became so weak that I had to lean over the counter just to do dishes. My husband became very stressed out and had a hard time focusing well on anything. He was worried because all my symptoms pointed to ALS. My symptoms began in 1993 in training. I had a weak grip and my legs shook after training bouts. I would also have higher than normal lactate levels compared to what the other athletes had for the same workout. Later, after my third child, I was losing my grip weeding the garden and baby bottles were hard to unscrew . I love to mow the lawn and actually used to jog but now I felt like I was walking through mud.
What was life like for you at this point? How did it affect your family?
Before my diagnosis, I literally thought I was dying. I was so weak that it was difficult for me to support my torso and head; My neck and back muscles were too weak. I lost 20 pounds of muscle from November to February. My sister in law took my kids for me for three days so I could rest. Dave was trying to be housekeeper, be “Mr. Mom” and provide a living for us too. It was a very difficult time that required a lot of prayer and soul searching as to what is important in life.
How long did you go on believing you had MS or ALS? What were your doctors doing to treat your condition?
This went on for three years. I was finally diagnosed in June of 2005. The doctors were doing nothing for me except monitoring my downhill spiral.
It turned out you didn’t have MS or ALS. What was your real condition, and when and how did you find out?
My condition is Metabolic Myopathy. It is a form of Muscular Dystrophy and rare. [Tour de France winner] Greg Lemond has a form of it. I was diagnosed by the Muscular Dystrophy Research hospital in Minneapolis. My doctor in Minneapolis told me to take L-carnitine, Creatine and COQ10. This gives me fuel for my cells. I drink a drink called E3 and I feel like it saved my life! It is genetic, so I need to have my children drink E3 too.
How are you today?
Today I feel like a whole new person. I feel like I can pursue dreams again, raise my family and clean my house! I am running and inline skating again, although I still can’t push too hard as I have my limits now.
Can you describe the benefits of having David work at home? How much did it contribute to your well-being?
If Dave hadn’t been home I don’t know what would have happened. I don’t think I was strong enough to handle everything by myself. With him home I could nap, call on him to help with the kids and cooking and have a ready shoulder to cry on instead of being all alone. My kids love to have Dad home to play with and to get to see Dad work every day. This will be good for their future and is a good education going on right before them. They actually know what Dad does because they run through his office daily when he is on an important call!
Do you have any advice for couples who might go through a similar crisis?
Don’t give up if the Doctor can’t diagnose you. Support one another because you’re both going through the same difficult time but experiencing different emotions. Be aware that working from home is a blessing at a time like this and give yourself the grace to focus on your business. After all, you are home and that is what counts. You can always reschedule calls if needed. Give your loved one a hug and be glad you can because you’re working from home!