Interview With Mark Reiman
An interview with Mark Reiman, 45, who was diagnosed with ALS in 1991 and died in 2003.
November, 1999
Do you feel that with each day you are better able or equipped to cope with ALS?
There are two parts to coping with the challenge of ALS. The financial/physical/mechanical aspects of successfully dealing with disability which include living on a fixed income while dealing with ever increasing medical costs along with continually adapting to the loss of physical abilities present tremendous challenges and concerns for the entire family. Thankfully, I don't have to reinvent the wheel. Many expert PALS (people with ALS) and their families have already faced these problems and have found great solutions and outside resources who can help me and my family.
Technology is constantly providing new and improved ways to communicate, stay informed, and be purpose filled. Our local ALS support group, God bless them, have been a tremendous help to us. They are an invaluable resource. ALS also presents a mighty challenge to our attitude and spirit, both to PALS and their families. Scientific research has proven conclusively that our attitude directly effects our immune system and our entire physical well being. So, while it is not always easy to stay optimistic and positive as I lose my physical abilities a little at a time, I know that I truly have a choice about how I look at things. I have come to understand that my life has a new and different purpose now and so I choose to focus on that new purpose and what I *can* do, not on what I cannot. Since the beginning of time history has never been about what happens *to* us. It is about how we *respond* to those circumstances. Each morning I wake up thankful to have one more day to make a difference in the world through what I *can* do, even if that is just love my friends and family. I believe with all my heart and soul that our greatest value on this earth has very little to do with arms and legs and has everything to do with a positive attitude and a loving spirit.
How has healthcare changed through the course of your battle with ALS?
I was diagnosed in 1991 when there was no accepted treatment protocol at all for ALS and little or no hope in the minds of the doctors who treated me. In the last five years there has been an explosion of research, drug trials, public awareness, fund raising, and subsequent scientific interest in ALS. The clinical knowledge about how to treat PALS, extending our life expectancy and improving the quality of everyday life is increasing every day. The FDA approved Rilutek®, the first drug for ALS, in early 1996 and, while it is a good start, we need to work harder for even more effective treatment and a cure. We need the federal government to dramatically increase funding for ALS research. What is discovered along the way will undoubtedly benefit other CNS (central nervous system) diseases as well.
What words of advice do you have for people (and their loved ones) coping with ALS - perhaps those who have been recently diagnosed?
- Seek support. We cannot effectively fight this battle by ourselves, nor do we need to. Connect with other PALS and their families and your nearest support group. Not only can they help, you have support and help to offer them, too.
- Hold fast to hope. Every day researchers are one day closer to the answers to this complex and baffling disease. It could be tomorrow, or next week, or next month.
- Be active in your own health care. Take the medications that are available; stay as active as possible; be every bit as informed as your doctor, if not more; don't procrastinate: prepare and anticipate for monetary, physical, and home needs in advance; exercise moderately: as the saying goes, "use it or lose it" and stay as strong as possible as long as possible.
- Realize that your life may have changed but it's far from over. Discover new purposes for your life. Use your gifts and talents in new ways. ALS is about living every day with purpose and true appreciation for life...not about dying. Each day *everyone* is one day closer to their last day, so we're no different. Carpe diem! Seize the day and make a difference.
- Practice your greatest freedom. Choose to make this defining moment in your life an opportunity for your greatest love, your greatest vision, courage, determination, and compassion. Surround yourself with positive people and positive thinking.
Do you feel you have changed as a father and a husband since being diagnosed with ALS? If so, in what ways?
I'm definitely not the best one to answer this question and it's obviously not all sweetness and light. In some ways I have become more focused on myself: health, nutrition, exercise, activities, and "stuff I need to know". Maybe that's selfish and narcissistic. In other ways I believe that I more truly appreciate and am grateful for my wife, my kids, my friends, and the blessed opportunity to live, love, and be loved for just one more day. I know that as my life changes it powerfully effects the lives of those around me. I just hope that it's powerful in a most positive way. My hope and prayer is that I haven't lost any of the good things about me and that my journey with ALS has helped smooth out some of my flaws.
What brings you the most joy?
A sweaty bike ride with friends and a cold beer at the end.
What brings you discomfort?
Fear, anger, ignorance, people hurting one another and destroying our earth.
Last year, you became the first person to sing the National Anthem at all 30 Major League ballparks in a single season. What did that mean to you?
It meant a hot dog (some good, some bad) in every park and that I was the most fortunate baseball fan of all time. It also meant that together we can do great things that we could never do on our own. When we work together, combining our talents and resources, we can show others in the most powerful way possible, which is *by example* that with hope, determination, hard work, and spirit we can make a real difference in the world...for ourselves and for others. But we all need to pull on the rope in the same direction.
