Whenever I drive past Steak ‘n Shake, I am reminded of a dear gentleman I had the privilege of spending time with several years ago. Before coming to IUPUI, I worked at the Alzheimer’s Association of Greater Indiana. In my last few months there, I had a series of events featuring an unusual national speaker–retired psychologist Richard Taylor, PhD. At the time, Richard was in his early 60′s and had been diagnosed with dementia, probably of the Alzheimer’s type a few years earlier at 58. He knew what the diagnosis meant, but resolved that for as long as he possibly could, he would speak up about Alzheimer’s and advocate for those with the disease.
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| Richard Taylor and Family |
In our first emails coordinating the week-long visit and tour of Indiana, he pushed me to add more and more events to the schedule. He wanted to reach out to every person he could every moment he was here. There was a true sense of urgency to inspire others to act on behalf of those with the disease, caregivers and professionals who give their hearts to help. But there was one caveat: we had to go to Steak n Shake. Living in Texas, but having grown up in Indiana, he was determined he had to eat at Steak n Shake at least once more while he still could.
During his visit, I watched over him like an overbearing mother as we traveled throughout state. His memory was still fairly intact, but I knew all too well what can happen with this disease. Still, I could not keep up with him! Even while dealing with the unpleasant symptoms of Alzheimer’s, his desire, motivation and energy never failed. One night, I called the hotel lobby because I couldn’t reach him. Every staff person I talked to at the hotel knew all about the disease, how to help those with the disease, and how to advocate because of Richard (turned out he was in the pool counseling a young couple that just had a parent diagnosed). Yes, even the housekeeping staff knew how to advocate for Alzheimer’s. Richard was fearless, but always compassionate, understanding, and appreciative of his time.
When we finally made it to Steak ‘n Shake, he took every bite with extreme gratitude. This simple pleasure meant so much to him, knowing that one day, he would forget growing up in Indiana, Steak ‘n Shake, and even how to eat a hamburger. This was a true example of living in the moment.
Richard sent me a lovely thank you email when he returned to Texas. I keep a piece of it at my desk to remember the power of one person. He wrote, “Stand up! Speak up! Do not become a victim of your own silence! Speak for yourself and those who will follow. Ask carers and friends to do the same. Today will never be here again. Time is of the essence! Use it wisely!” We chatted for months about advocacy, until one day, the emails just stopped coming.
There is no reason we can’t take Richard’s advice and apply it to fibromyalgia and arthritis. He kept telling me one day, I’d do for fibro and arthritis what he’s doing with Alzheimer’s. I always gave a little giggle and knew I would never reach the depth he has. But, his words still inspire me. I only wish I could call him and thank him, but he would not remember who I am, what our time together was like or even that Steak n Shake moment.
I’m asking you to consider Richard’s story as one we can model. Even on many of the worst pain days, we have the capacity to send an email. We have the ability to read what the Arthritis Foundation is doing in terms of advocacy efforts and respond. We can advocate, we can pull together to drive research, funding, and eventually a cure. Those who haven’t found their voice yet, those to come, and the youth affected by these issues are depending on us.
Together, we can overcome.
Kate
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