JODI

Individuals with AE & AEA Community Support Groups

What motivates you in your work at the AE Alliance?

The support it provides to those diagnosed with AE, as well as family members and people involved in their care.

My AE journey began in September of 2015. I was a Type A corporate professional one day. The next day I couldn’t walk, had trouble speaking, and was catatonic during most of my waking hours. I went to numerous doctors and medical facilities all over the country. After 15 months, I was diagnosed with seronegative autoimmune encephalitis. It took another eight months to obtain insurance approval for treatment. AE is a rare disease. Lack of awareness in the medical industry causes significant delays for those with the disease. For the best chances of recovery, early diagnosis and early treatment are critical; six weeks is optimal.

Like many others, I’m no longer able to work. After my diagnosis, I struggled with the effects of the disease. I also struggled with the lack of knowledge and awareness about the disease. I thought I was alone. When I found the AE Alliance, I learned more about the disease and met others with AE. I now have support and life-long friends, many of whom I haven’t even met in person. This support is invaluable to me. I want to provide that support to others in need. Raising awareness about AE is critical in offering that lifeline.

As life continues, I live in the present and with intention. When I wake up each morning, I envision a jar of colorful marbles. These marbles represent my physical and mental energy for the day. The question is, “How do I want to spend my marbles today?” I constantly remind myself to spend my marbles wisely. Sometimes I’ll try to cheat and tap into the next day’s supply of marbles. Unfortunately, it always catches up to me. So I’ve learned to appreciate the value of little things – things that won’t take away from my marble supply. Here are a few of those little things:

• Watching a dog with its head out of a car window
• Climbing into bed with clean, fresh sheets
• Sitting on the porch watching the twinkle of lightning bugs
• Seeing a child with a milk moustache
• Smelling freshly cut grass
• Looking at the sweet little dimples on a baby’s elbows and knees

I could keep going, but you get the idea.