KATHLEEN WILSON
People With MS and the Courage to Give
Chapter 7: If You Follow Your Heart and Use Your Mind, You Can Achieve Anything
WHEN THE DOCTOR’S JOB IS DONE and the nurse’s job is done, when the support group is over, it’s critical to know we have somewhere to go. Through MSWorld (www.msworld.org) we are never alone; we always have somewhere to go to find information, share experiences, and meet wonderful people. People newly diagnosed with MS can find support and discover that MS is a manageable disease. And we all can learn from each other how to live our lives re-creating, rediscovering, and rejoicing in all that we can do.
I was diagnosed with MS in 1995. I was single, thirty-seven and an artist living a very active life in Greece when, bam, the diagnosis put me into a wheelchair and sent me back home to live with my parents. Eight years later I can see that I was given an incredible opportunity to change my life, but back then I felt that I’d been condemned. The despair was devastating.
Very soon after my diagnosis I learned firsthand how isolating MS can be and how difficult it can be to get information and support. The first three months were especially hard. Many, many nights I found myself up at 3 A.M., wondering, “What am I going to do with my life? I don’t even have a life.” It was so hard to imagine starting over. I had loved my life as an artist, and I knew that from now
on everything was going to be different. What kept me going, I think, was my strong belief that there was something important for me to do in this life. I would just have to discover what it was.
Six weeks after I returned home, my mom asked if there was anything in this world that I could possibly want that would make my life better. I’m not sure where the answer came from but it was immediate and sure: a computer. I was up and ready to go within the hour, and we came home that day with my first real computer.
With the intense fatigue I was experiencing at the time, it took a few months to get everything set up and to get online. But once I did, once I brought the world into my home, I knew that this was exactly what I needed to be doing. Relatively little information about MS was available online back then. The few chat rooms and message boards there were offered little comfort, and much of the information appeared unreliable. I wanted to know what MS was and how others were living with it. I wanted to develop strategies for re-creating my own life. I wanted that sense of belonging that comes from sharing a few words with someone else who knows what it is like to walk the same steps. Not finding what I was looking for, I decided to start my own chat room for people and families coping with MS. I started it for me, really, to help me find the support I most wanted. Little did I know that I was on my way toward fulfilling my destiny.
As soon as I started connecting with other people with MS through the Internet, I knew that I had to take this further. Armed with little other than a masters degree in mental health counseling, I started MSWorld, Inc. (www.msworld.org).
Today the MSWorld Website receives over 20,000 visits per day from people struggling to understand this disease and ways to cope with it. We are linked to medical Websites all over the world that report on the latest breakthroughs in MS, and we offer all kinds of support via message boards, chats, email groups,
book reviews, guest hosts, and a variety of other resources. We are also the official online chat and message board for the National MS Society.
At MSWorld our motto is “Wellness is a state of mind.” We offer people a place of belonging—a place where they can learn to deal with the emotional intricacies of living with MS and get information and support so that they can get on with their lives. One of the greatest benefits I’ve received from MSWorld is that I finally have a place to put my disease. Whenever I have questions or need support, I have a place to go. My MS doesn’t have to take up so much space in the rest of my life. I’m not as dependent on people who know even less about this disease than I do for gathering information and getting my questions answered. Having this kind of access is empowering in so many ways, not least of which is that I can participate as an equal with my health team, making informed decisions about my own treatment and care.
Recently, I went to an MS clinic to treat a flare-up. The results came back on a Friday afternoon. The doctor told me, “Well, it looks like you’ve gone secondary-progressive with your MS and we want to put you on Novantrone. When you get home, find an oncologist, call me, and we’ll get started.” Needless to say, I left her office devastated. It was like being newly diagnosed all over again. I had no idea what Novantrone was and had been so stunned by her diagnosis that I just didn’t have the strength to ask.
As soon as I got home, I got online and checked the Website’s message boards, and sure enough, I had information on Novantrone within the hour. I learned that the drug was used to treat progressive MS and certain types of cancer. Somehow I felt in my heart that this just wasn’t what I needed at this time.
By Monday I was feeling better and knew what I needed to do. I sought out two different neurologists, a specialist at the Mayo Clinic and a local neurologist, for a second opinion, and both said “no way” to the Novantrone. Having access
to MSWorld saved me so much anxiety. I was able to seek out the information I needed and move forward with a more informed and realistic perspective.
The Website is currently run by thirty-two volunteers worldwide, all diagnosed with MS, all of whom have been positively affected by their ability to help others. In fact, many of the people who have volunteered at MSWorld have taken flight with dreams of their own. Some have published books, others have learned Website design, and many have started doing public speaking in an effort to help others with MS live better lives. Susan Zachary, our vice president and Web administrator, is a perfect example. She was one of a handful of people in the first online chat meeting. She says, “The minute I got in the room, it was like coming home. I was talking with people who understood what I was saying. I could talk freely.”
Susan helped us build our site, one of the most user-friendly Websites on the Internet, not because she has a degree in Web design but because she had an overwhelming desire to help others. Yes, she has MS, but her passion for building this site and her desire to help others was bigger than her disease. She took the time to read books, talk to programmers, and learn everything necessary to create and maintain our wonderful home online. And now she runs her own Web consulting business out of her home.
The rewards of our work are endless. I receive emails all the time from people who depend on the site as a kind of lifeline. One woman emailed me from a nursing home to let me know how important MSWorld is to her. At forty-nine, surrounded by people who are in their eighties, she was experiencing extreme isolation and depression. “It’s a really difficult time for me. I recently learned about MSWorld and it is wonderful to know it is there.” I emailed her back to see if there is any possible way that she can join us and work on the Website.
I still struggle to walk and see. I have a burning sensation in my right foot that
never subsides, blurry vision that comes and goes, and weakening legs that make me more dependent on my scooter every day. And I’ve learned to live one day at a time, knowing that at any time I might return to the condition I was in when I was first diagnosed. Each morning I strive to revive the spirit of faith that a permanent cure will come along to help me and others like me, who have had to learn to give away parts of us—both mentally and physically—every day. This is the nature of having MS and at times the sadness is overwhelming. But through my work with MSWorld I know that my experiences are making a difference for others. And that’s all the proof I need that each of us matters, that if you follow your heart and use your mind, you can achieve anything.
See Kathleen Wilson’s Website: www.msworld.org
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