The first time I heard about Bill Irwin was during a church service sometime in 1990. The pastor announced that there was a blind man hiking the Appalachian Trail all the way from Georgia to Maine and he asked the congregation to pray for him. I couldn’t foresee that we would actually get to meet him, become friends with him in the not-too-distant future or know the deep impact that he would have on my life as disability came sooner than I could ever imagine.
In 1991, my husband decided to start a Came to Believe retreat in Queens, New York. These retreats freely spoke of the influence that the Bible, Oxford group and devotional ideas that helped early AAs to get and stay sober. We thought Bill would be a wonderful speaker for our event and were very excited when he accepted our invitation.
One of the wonderful gifts of The Fellowship is that in spite of the heartache of our drinking and drugging histories, and the price we paid to get to AA, we can find laughter and camaraderie with other alcoholics and addicts. Bill had us hysterically laughing as he shared some of his adventures with us. But most importantly, he showed us the transforming power of Jesus Christ that turned his life around and became a powerful witness to the many who have heard him speak or read his book Blind Courage.
When we met Bill, I was 30 years old and untouched by disability or limitations. I went on a few long walks (would they be anything else but long?) with Bill around Queens and Brooklyn. My husband has never been fond of long walks. One time Bill had him walk from Brooklyn to Manhattan in the snow and then wanted to walk back. He responded, “I don’t know about you, but I’m taking the train!”
We hit it off very well with Bill and he invited us to visit him in North Carolina. He lost his grandson tragically just before our visit but he insisted that we come anyway. My daughter was just five months old at the time and took her first crawl toward Orient. We had a lot of fun and ate fabulous barbecue just about every night. (This was before the Hallelujah Diet!)
We moved to the Tampa Bay area of Florida in 1994 and I had three more kids. Motherhood has not been an easy journey for me. Among four kids we have diagnoses of scoliosis, NF-1, Down Syndrome, a congenital heart defect and learning disabilities. I was overwhelmed just about all of the time.
I was at a Down Syndrome conference around 2009 and remember very clearly the speaker saying that disability would happen to all of us eventually if we lived long enough. Like anybody else, I figured that was way off in the future.
It wasn’t. In the summer of 2010 I began to experience distressing neurological symptoms causing my neck and shoulders to twist involuntarily, as well as a head tremor. I was quickly diagnosed with cervical dystonia, a neurological movement disorder. It is a devastating diagnosis, and doubly so as I was already a special needs mom. I couldn’t drive and could barely get off the couch to take care of my family. Six months after my symptoms started, my son had a cardiac emergency and had to get a pacemaker.
Although I’ve been sober since 1986, depression and anxiety are still a real problem for me. They got worse with the intensity of my symptoms. I researched cervical dystonia online and was distressed to learn of some suicide attempts and drinking. I knew I was in a dangerous place but I could not get myself to a meeting.
I made a decision I was going to hang in there for my family and chased recovery as hard as I had chased drinking, drugs and sobriety. I found people online who were living with dystonia positively. The one thing I found they all had in common was exercise was a big priority for them. Initially I couldn’t walk more than a couple of hundred yards on my street. But with physical therapy stretches and yoga, I slowly started to improve.
And then I remembered Bill and his walk. I started to think that God had sent Bill into our lives as His advance man to show me how to live with disability and recovery. It was hard for me to stay in touch with Bill as our lives had become so hectic, but I often thought about the walk. The part I remember most clearly was when he was crossing the treacherous river. How often I’ve felt like that in my own life.
I was saddened to learn that Bill went Home last week. Saturday I went to bed teary eyed thinking about Bill. Sunday morning I woke up to find out that my son Nicolas had made the cover of the local section of two area newspapers. This is Bill’s legacy in our family. Overcoming and perseverance. I will surely share Bill’s story with Nicolas as he has the ability to understand that nothing has to stop him from living a purposeful life.
Unless God chooses to heal me, dystonia will be a thorn in my flesh the rest of my life. Despite my exercise and shots, some days are miserable. I can get depressed and feel sorry for myself about not being the same mom to my younger kids that I was to the oldest. But God did not leave me comfortless. He sent friends such as Bill Irwin into my path to show me how to live with disability and limitations.
I was hoping to be able to see Bill again and sadly I won’t this side of heaven. But I know that he’s with God now and he can truly see. I was blessed to meet his wife Debra and I just know that God has great things in store for her to continue the ministry that she and Bill had and their message will continue to go forth.