“I grew up in Mobile and have lived here all my life. I was a stay-at-home mom while my kids were young. I interviewed for an insurance coordinator position at Lifelines Counseling Services in 1989 and got the job. Then, I worked with the domestic violence program and was manager of Rape Crisis until I retired.

It’s such a humbling experience for them to reach out and begin to trust you. They’ve been in such terrible relationships and abused in so many different ways that your heart just goes out to them. The greatest gift you can give someone is to know that they can depend on themselves, and they don’t have to rely on someone else

I tried to walk in their shoes. Some of the women that I worked with did prostitution to feed their families, then their boyfriends beat them up for doing it. They are just trying to survive.

Lifelines was my home for almost 30 years, and I miss it. I retired two years ago because I have ALS. If I hadn’t gotten sick, I probably would still be there. I loved my job and we were doing so many good things and developing new programs. It was still exciting to help people.

In 2017, I started noticing I was missing a step in my left foot. They call it ‘drop foot.’ I blew it off until it became constant. I went to UAB in September 2019 and was diagnosed with ALS. I now go to Duke University every three months. The care is excellent, and they are involved in the clinical trials. I haven’t been able to get into any clinical trials because they usually just want people in the early stages.

I was in shock when they told me I have ALS. One day you’re perfectly healthy, and the next day somebody tells you that you have a few years to live. They tell you it’s time to get your affairs in order, do your bucket list, and make the remaining days as good as you can. It was devastating to go home and tell my children and family. Then I came to peace with it. I’m going to make the best out of every day. ALS progresses quickly, and some people die within six months or a year from their diagnosis. I’m lucky that mine is not progressing as fast, and I feel good.

I’m always in a power wheelchair now and don’t have much use of my legs, arms or hands. Some days I can operate the joystick on my wheelchair better than others, but I haven’t had the symptoms that involve breathing, swallowing or speech. I do physical therapy and occupational therapy twice a week and try to stay as busy as I can. But I’m completely dependent on my family. Somebody is always here with me. I try to tell them they can leave me for a little while and I’ll be fine, but the other day my therapist said, ‘You’re fine until you’re not.’ She is right.

They don’t know much about ALS, and the FDA is very slow to approve anything in clinical trials that shows any hope. As patients, we’re pushing to participate in these clinical trials. We’ll do anything to help find ways to slow this disease. I am still finding ways to help others through ALS support groups and help lift each other up

I can’t do anything for myself. On a good day, I can brush my teeth and occasionally stab something with a fork and kind of get it to my mouth. My husband makes sure I’m dressed and my hair is brushed. We try to keep it as light as possible. He is enclosing our garage and building a beautiful, roll-in shower and roll-under vanity. I have a big lift that picks me up out of the bed and puts me in my wheelchair. There’s so much equipment to learn to work with.

We had looked forward to retirement and doing so much. We went to the mountains a couple of times with the whole family, but those dreams and projects we were going to do won’t happen. I’ve been really angry at times because COVID robbed me of the best days I had left.

I heard another ALS patient say she would ask God, “Why me?” And then she learned to say, “Why not me?” I’m not any more special than anybody else so why not me. There may be a reason for this.

I have nine grandchildren, four daughters, and sweet son-in-laws, so I have a lot to live for. Having them all around me is enough. We also have gorgeous sunrises and sunsets. I go in the backyard and put my wheelchair back to watch the clouds go by or listen to the birds. I find joy in the simple things.”

Jan