"I always felt very lucky in life—a true believer in fate and destiny. Never in my wildest dreams (nightmares) did I ever envision my destiny hurling me into life with a horrible motor neuron disease.
I spent my free time gardening, cooking, and dabbling in amateur photography. I enjoyed my job as a graphic designer. I loved planning special outings with my grandchildren. My oldest granddaughter Madison and I often volunteered together at our local zoo. I loved walking, biking, swimming and had even started running and finally hit the two mile mark on my 50th birthday.
Because of ALS, I can no longer do most of those things I love. I earned my second tech school degree when I was 56, specializing in photography and video. Ironically, I now can barely hold my camera steady enough to snap a picture or shoot a video.
After months of frustrating, “it might be this…” discussions with a variety of doctors, I was finally diagnosed in January 2016 with probable limb onset ALS. I went through the gamut of emotions: fear, anger, resentment, discouragement, frustration, worry, confusion, and sadness. Knowing ALS could dissolve all of my dreams and ambitions, I wondered, “How do I deal with this?” It felt like I was in a race to save my life. I set out to find anything and everything I could to stop this disease before it stopped me. I soon found out it would be a daunting task with very few rewards.
In my seemingly endless hours of searches, one website, alsworldwide.org, had answers to many of my questions. Doubtful I would be able to really connect with someone that could make a difference for me, I hesitated, but ultimately filled out the online profile form. The response was almost immediate and before long I had my first FaceTime interview. It filled me with renewed hope. In the months since, I have interacted often with Barbara and Stephen Byer, ALS Worldwide Co-Executive Directors, via phone, email and FaceTime.
I soon came to the realization that ALS Worldwide really truly cares about me! On my most recent visit to my neurologist in Madison, Wisconsin, Barbara took time out of her busy schedule to come and meet with my family and me personally. She listened intently as I poured out my fears and frustrations. She also shared some of her life stories in dealing with her son’s battle with ALS, both humorous and emotional. The fear and helplessness a parent faces when learning their child has ALS can be overwhelming—it’s just not the natural order of things to think you might outlive your own child.
Barbara convinced me that even though I can't do the same things I've always done, I can and should re-channel my energy into other things that will bring me joy and satisfaction. She told me it's ok to feel and accept all my emotions, even the negative ones. I now realize that even though this disease has stolen so much of my independence, I still have things ALS can't steal from me. I still have eyes to see the beautiful world around me. I still have a mind that can envision alternative solutions as I lose the ability to do everyday tasks. I still have a circle of wonderful family and friends surrounding me with love and encouragement to help me through so many agonizing days.
It's up to me to walk my path. And I now have ALS Worldwide by my side."
How do YOU find ways to enjoy life, even though challenged by ALS?