My journey began many moons ago. Happily, my ataxia has progressed slowly, over 20 years. For a while, I could still walk unaided. Then I eventually … But I digress. Most of you know the common symptoms of ataxia, so I won’t bore you with too many details.
I have been grappling with who I am. I am still me, but I don’t always feel it. Where is the girl (now woman) who hiked the Grand Canyon and kayaked in Alaska? Where is the Shannon who went to graduate school, got a good job, and had a condo of her own? I miss that person.
I know that things happen (I certainly didn’t plan on this), and I have begun to learn, too – learn how to come to terms with being on disability, learn how to rollate with grace, learn how ask for help, learn how to let go. It has taken much time and effort to accept my new life, and I am still working on being a new Shannon. I am getting there, I hope, rising from this sinkhole of denial. Even though I don’t have a Magic 8 Ball to tell me my future, I can tackle ataxia the best I can. Let me tell you what is working for me.
I’m building a support system. I have moved close to family, to the Midwest (but still cheer on my beloved Washington Nationals). I’ve made lifelong friends from ataxia support groups in the DC area and in Chicagoland. I’m proud to say I’ve been to 7 National NAF Ataxia Conferences, and I hope to attend many more. I also have Facebook friends and belong to several ataxia groups. I enjoy being with others who understand and don’t judge.
I try to be adventurous. Maybe not like before, but nevertheless, I take example from my ataxian friend who competitively rock climbs and another who wheelchair paddle-boards. And some ride really cool recumbent bikes for long distances! Amazing role models. I’ve tried my hand at indoor sky diving too, and I have been out sailing. Next year, I will go on a safari trip to South Africa. There, I’ll even get to use a beach wheelchair.
I’m keeping active. NAF and ataxia professionals all say to exercise, exercise, exercise. So I’ve taken up yoga and Qigong. I also like to rollate in the local park on the hike and bike trail and tool around to the public library and the market. When I don’t sleep in, I go to the gym on the weekends and hang out with my friend, the elliptical. I’m engaging my brain by belonging to several book clubs (I love to read e-books and books in large print), staying active in Toastmasters, and organizing/leading a new ataxia support group.
Meet the new me and my “strategy.” Of course, do what works for you, but I encourage you to build a support system, keep active, and be adventurous. It’s helping me face my ataxia and embrace the new Shannon!
Shannon is busy reviving the St Louis Area Ataxia Support group. Do you live near St Louis –southwest Illinois or eastern Missouri? She welcomes referrals of ataxians and friends! She can be reached at firstname.lastname@example.org