PINCH ME. Seriously. I simply cannot be REALLY living this life I’m living. I’ve never experienced such a roller coaster of emotions as I have these past 8 months, particularly the past 4 weeks.
I just left a wonderful, uplifting movie about the great, (though difficult) man Steve Jobs, founder of Apple Computer. One of the things I’ve discovered has enabled me to endure the difficulties of my life is the mantra that Steve Jobs lived by. Do not live IN the world; Go out and create your OWN life. When catastrophe strikes, be it devastating illness, the loss of a limb, the loss of a loved one, then ending of a career, it is those people who go out and create their own lives, NEW lives that flourish and dare to be different. I happen to believe that I’m one of these people. Whenever I hit an obstacle, I’m always able to find my way around it, and to make that obstacle disappear in the future. I can always find my way, both literally and figuratively.
I know where I get it from, my awesome mother, who saw herself out of a terrible, dangerous abusive marriage some 30 years ago. She ‘found a way’ to raise two girls and keep a sense of normalcy while keeping a roof over our heads as a housekeeper for Vera Wang. We had horses, 4-H Club, Girl Scouts, Swimming, tennis, soccer, and music. She did that. She found a way by putting herself through wallpapering school then starting her own business so she could make her own hours and be there for us each and every day. She refused help in the many forms it was offered. Yet she found a way.
I’ve felt like I’ve owed it to her to do the same. When I got diagnosed in college with a rare eye disease, I hit the books and did the research on doctors and treatment (before the invention of Google). I had no health insurance, and needed tens of thousands of dollars worth of testing. I got a credit card and worked three jobs to pay it off. I too, had found a way. I knew no matter how bad things would get, I would make a life for myself. Sadly, no longer as a budding future pharmacist, but I did have an awesome palate and wealth of wine knowledge, and a passion for horses. So what did I do? I figured it out by making a name for myself as a promising young woman in the wine business. I networked, I wrote, I tasted thousands and thousands of wine, all to better equip myself for an uncertain future with my eyesight.
When my father passed away, leaving me a costly horse to upkeep, I began training and teaching students, then showing and shipping horses to keep hay in the manger and shoes on his feet. I bought a truck and trailer, and trained with some of the best instructors in the world. I bartered, I scraped, and did ANY job that came my way, from mucking stalls to braiding manes for the show circuit. I got it done, because I was busy creating my world.
Fast forward nearly 15 years, and my life has changed dramatically. I’ve continued to slowly lose my sight from a rare form of Uveitis, and now, glaucoma. I’ve created a world in which I can not only live, but THRIVE in, due to the blessings of Guiding Eyes for the Blind in the form of my Guide Dog, Elvis. My life is not only different from what I had envisioned for myself, it is better.
When my disease came out of remission five years ago, I was terribly depressed and afraid. I had never actually spoken to a blind or visually impaired person, and I felt so scared and alone, uncertain of what my life would look like. I was in debt, unhappy in my job, and about to go through a series of chemotherapy and surgeries that would transform the way I lived my daily life. I gained nearly 50 pounds, developed debilitating migraines, and had terrible side effects from the high dose steroids I was on.
The expression, “When God closes a door, he opens a window”, really holds true here. Thanks to my friend Alan Gunzburg, I found a way to get help through social services, teaching me how to live in the world as a visually impaired person. Through my friend Scotty, I found a way to have my own voice at work and advocate for myself. She introduced me to a whole new world of people like me through the power of social media, allowing me to feel part of a community of people again. Through my wonderful customers in the wine industry, I was offered an opportunity to become my own boss and to create my dream job of being a business owner and wine educator. I had found a way.
Now, as I face another tough chapter in my vision loss, I find it overwhelming to look back at how my life has changed for the better, and the world I’ve created for myself through great friendships and wonderful cheerleaders along the way. Eight short months ago, I was in total physical disrepair, reliant on painful cortisone and numbing injections to even handle walking to the bus stop or up a flight of stairs at the train station. I had ballooned to a size 14 from my size 4, and avoided mirrors and social settings and hated any photos I saw of myself.
When the chemo stopped working to control my eye inflammation, I found a doctor who specialized in autoimmune related eye disease, and had invented a special implant that controls the disease without the systemic side effects. Yet again, I had found a way to keep seeing, despite what the statistics said about my eye-sight-robbing diagnosis. I bought myself more time. Time to check off things on my “Vision-loss Bucket List”, or as my stepfather prefers to call it, my “Things to do before I can’t see anymore” list. I bought myself three good years where I got to travel to California, Italy, and all over the United States meeting amazing new friends and supporters along the way.
Last year, after my 9th eye surgery, I had an anaphylactic reaction to a drug, causing my adrenal and thyroid glands to stop working. My weight ballooned yet again, and I became frustrated living on egg whites and Greek Yogurt. A fortunate turn of events brought to light my adrenal issue, and I got on the waiting list to see one of the top Endocrinologists in the country. I called and called until they had a cancellation, determined to FIX my broken glands and get back on track to good health.
As luck would have it, I fell and broke my foot on the day my surgeon finally agreed to let me get back to exercise. My friend Carol helped me ‘find the way’ around the broken foot and back into the pool, a place I loved as a kid and high school swimmer, that would allow me the benefits of exercise without hurting my foot. Pretty soon I became hooked on it, and started taking spin classes with my friend Wendy, my fiercest supporter.
By chance, I met the woman who opened the biggest door for me this year, Caroline Gaynor, the triathlon director for a veteran’s Charity known as Team Red White and Blue www.teamrwb.org . Caroline specializes in guiding visually impaired athletes in all types of running races and triathlons, from sprint distances to Ironman. I had no idea that blind folks could even attempt something like that, let alone complete it.
Suddenly the world of encroaching darkness and my urgency to ‘see it all before I can’t’ faded and I was able to live in the present again. I always like to say, “Expect the worst and hope for the best,” and I truly meant it. While I can prepare and not avoid the fact that I’m going blind, I can do what I can to prepare for it, and then get on with my life.
Through the sport of Paratriathlon, I’ve now met more than a dozen blind athletes, and chatted with several dozen online. Who KNEW that this community even existed? I used to look at my impending blindness as a sort of death; the death of my ability to see, but I realized that there is light after darkness. There is a whole world out there I didn’t know existed, and these folks are welcoming me there with open arms. Through the power of social media and incredible organizations such as Achilles, Challenged Athletes Foundation, and Team RWB, I had found my way.
In 8 short months, I’ve completed 5 triathlons, gotten sponsored by a triathlon club to race, recruited to a top sports agency, and trained with the top coaches in the country as a triathlete, with an eye on the 2016 Paralympics. Seriously, is this my life? I’ve received scholarships to attend camps, and run alongside Ironmen and women at the top of the sport. I’ve lost nearly 40lbs, and fit into those skinny size 6 jeans again. I can’t BELIEVE the life I’ve created and the folks that have helped me achieve this success in such a short time.
While I’m still very afraid for the encroaching darkness that will ensue, I find comfort in seeing my peers succeed and thrive as blind athletes, engineers, software programmers, lawyers, writers, comedians, massage therapists, and so much more. I won’t just have a life after blindness. I am going to have a great life as a triathlete, business owner, advocate for the blind, and sommelier. My ‘Bucket List’ is no longer the giant laundry list it once was, and I now realize I can still do ALL of those things after I lose my vision. Thank you mom, for teaching me, that yes, We ALL can “Find our Way”.