The Edge of the World
MEET WENDY BOOKER When were you diagnosed with MS and what was the first thing you did after you found out? I was diagnosed with Multiple Sclerosis in June of 1998. Like almost everyone who receives a challenging and frightening diagnosis, I went to the internet! Of course the information I read there only increased my fear and added to the many misconceptions of the illness. At the time, I didn't recognize the inaccuracies and the fear people were publishing and others were accepting as truth. The internet remains a frightening place for the newly diagnosed. What advice would you give to someone just finding out they have MS? I would say to take a deep breath. Wiggle your toes, stretch out your hands and arms. Blink your eyes, go for a walk. Then say to yourself, "Okay I have MS now what can I do about it?" Contact your local MS Society chapter, send an email to the MS Foundation (MSFocus.org) ask them what the next steps are for someone just finding out they have MS? Think really hard about someone you know or heard of with MS and reach out to them. Write an email, connect on Facebook. First hand get their story. How did they get to where they are today with a diagnosis of MS? Find an MS support group in your community. Go and talk with others in your area with MS. Ask them who their neurologist is. Find out from the local MS chapter or MS Foundation if there is a Multiple Sclerosis Center (all they see and treat is MS) close to where you live. I started out on my MS journey with a wonderful general neurologist. He is a great doctor but I said to him that although I thought he was a wonderful physician I was close to Boston and knew some of the best medicine is there. Without any ego or trepidation he recommended I go to one of the best treating MS Centers in the country. Once your life has settled down you may only have to see your neurologist twice or three times a year. If you can get to a major city there will be an excellent MS Center there. If nothing else, go for a second opinion on therapy options, treatment and just you and your MS. And keep moving! Human nature is a funny and powerful thing. Our minds can play tricks and talk us into anything. We read and hear that we won't be able to walk or move with MS so we curl up in a ball, lay on the sofa, watch tv and eat candy. All this may make us feel better for the short term and I certainly resort to that position when my life takes an unexpected nasty turn....but you can't stay on that sofa! Over time should you lay there and feel sorry for yourself that is all you will be able to do! You don't want to spend your life incapable of truly living life do you? Don't let the MS take that away! Set small obtainable goals. If you were a runner before your diagnosis don't set out for a 12 mile run, instead run from one telephone pole to the next. Felt pretty good? Add more telephone poles! Try a 5K, take baby steps and celebrate your success! MS prevents you from doing what you used to love? Can't run anymore? Try a bike, walk, yoga (which by the way is awesome for MS!!!) Find something that you like to do and make it part of your life and routine to move, wiggle your toes, make your heart and head feel great!!! What is something good that came out of your MS diagnosis? So much good came from my diagnosis. Far more good than bad. On a very personal level I became more accepting of others. I became more compassionate about illness and physical challenges. I started to become a better listener. I started to challenge myself. I started to run. Just like Forest Gump I kept running and running. The running translated to climbing. Soon I was climbing some of the highest peaks in the world. The climbing took me to vast corners of the globe, to the poles, to Alaska. My story is varied and unique but it is not mine alone. My story can be anyone's. I have heard of others doing amazing things with MS. I decided I wanted to "pay it forward." To take all that I have been able to do with and for MS and inspire the next person just finding out they have MS. To encourage positive awareness around the illness but most importantly to create a positive role model for others living with MS. To say, "Come Climb with Me." as a metaphor for challenging yourself to be the best person you can with and for MS. To define the person you are not because of an illness but because of the unique and wonderful qualities you possess and can share with others facing a challenge. What is your morning routine? I need a good half an hour to become human. I run or work out almost everyday so I set my alarm clock and stumble to the coffee pot. Once I have had that cup of coffee I am up and at 'em! I lay my workout clothes out the night before (okay a bit anal-retentive here) and head out the door for some important 'me' time! I use my runs to do all my mental housecleaning. I set about my day after a good run or physical activity. Too hot to run? It is 97 degrees as I write this and heat and MS don't mix too well. So I look at the weekly weather report and set my work out schedule accordingly. Today, because of the heat, I didn't run. Instead I drove to the beach and took a 7am beach yoga class! Heavenly! How has MS affected your daily life? Even 18 years post diagnosis I so often want to blame every little strange twitch on MS. I fall asleep on my arm. I wake up and my arm feels numb and tingles! Oh no!!! Its MS!!! Not it isn't! I fell asleep and pinched my arm in a strange position and the tingles are the arm waking up. MS has affected my daily life in that I try to be more health conscious, follow good nutrition, exercise and know when I have done too much. I recognize that I don't function well when I have over done or am over tired. Can you remember your saddest memory of your life? My saddest memory was losing my father. He was a huge figure and amazing person in my life. He was a POW in WWII but never dwelt on this. He suffered a great deal of pain his entire life due to the years he was in a Japanese POW prison. He never hated anyone, he never wished for revenge. He never complained about his aching joints and diminished function as Rheumatoid Arthritis took away so much of his abilities. He always looked for the lessons in life. He was a climber, an athlete and used his athleticism to push back at his RA diagnosis. He truly lived by the philosophy of, "It's not what happens to you in life, it's how you react to it." He lived and exemplified that. I took his death very hard. He never knew I had MS. He never saw me reach the top of the world. But he was right there with me the entire way. Can you remember the happiest moment of your life? Reaching the summit of Denali. The first person ever to do so with MS. That summit represented everything to me. Teaching my three sons about challenges and overcoming obstacles. Reaching a goal often deemed impossible for someone with MS. Changing my perception of what I could do physically. Realizing that I could gut it out and persevere despite being told I couldn't, shouldn't or wouldn't. That mountain set me on my path to what it means to have MS. We all have our mountain. Now what are we going to do about it? I knew at that moment that my reaching the top of Denali would forever change me and my responsibility to others living with MS. What is the greatest achievement you have done since being diagnosed and how were you able to achieve it? I am working on that achievement right now! Two years ago I set about laying out the plans for the Climb On! Foundation. I jokingly say forming a foundation is as difficult as climbing Everest! It has been difficult. I have had many set backs but in my heart I know I am on the right path. I took the past 16 years to push beyond my own physical limits to show what people with MS are capable of. To show the value of the Disease Modifying Therapies and to encourage every one with MS to get on to one of those therapies! Whereas I ran that very first marathon just for me, just to see if I had what it takes. I now dedicate all that I have done with MS to those with MS who can't climb a mountain or run a marathon. To the newly diagnosed who want to ignore the illness and just be a twenty something. To every person with MS I now say, "Climb On!" Those are the last words a climber hears before setting out, climb on! It means all systems are go, you are ready and prepared to safely climb. I am so proud of my campaign "From Stories Comes Strength" for it is from your stories that someone just learning they have MS can gain the strength and courage they need to challenge their diagnosis and pay it forward! Any other thoughts you would like to share? Please help grow our campaign, "From Stories Comes Strength" and submit your story to: this page! We are but one voice, one story. But collectively we can move mountains and show the world that we can live full and active lives despite the diagnosis.