My Life With ADEM
It’s amazing. Things can happen to you when you don’t even know it.
Take ADEM, for instance.
It was an unexpected event. I was at my computer, typing an article for a soon-to-be published book, but when I read my words to myself, all they said was gibberish.
That event changed my life forever.
I was 55 when a mysterious glitch in my brain stopped transmitting the right signals. After a visit to the ER, three hospitalizations, many scans, cancer screenings, MRIs, and countless blood tests and consultations with neurologists and other specialists and then one with Dr. Johnson (Johns Hopkins Medical Center, Baltimore), my medical event finally had a name –Acute Disseminated Encephalomyelitis.
But how could this mysterious condition befall me? Thinking back, we had just returned from New Orleans. I thought, perhaps, I was bitten by a bug or breathed something dangerous during those post-Katrina days. All that I knew was that I had a relatively uneventful medical history until then. I was proceeding with my life, writing as I had always wanted, and being compensated for it. I had recently opened an office in space I shared with my husband. The paint on the walls was barely dry, the space newly carpeted and my desk messed by my old habits.
That began my ADEM journey.
The gibberish that my words produced prompted an ER visit. It would be the first of three hospitalizations at different hospitals. It took two months and many physician experts to give my condition a diagnosis.
The first doctor to diagnosis me said I had suffered a stroke. He admitted me to his hospital. A CT scan and spinal tap revealed nothing. Then, an MRI revealed 13 enhanced brain lesions. No stroke, but what happened? The mystery still unsolved, another neurologist discharged me, recommending that I be seen at his sleep clinic. No diagnosis. Convinced that his advice wasn’t entirely altruistic, I sought counsel from my husband’s cardiologist who we turned to because we knew he could offer good advice. He set in motion the course that led to the right diagnosis, but that was still two months of stay at Washington Hospital Center (DC) and National Rehabilitation Center (DC), which was followed by a consultation with Dr. Johnson, the noted neurologist at Johns HopkinsHospital in Baltimore, who was convinced I had ADEM. Not Multiple Sclerosis, as some thought but a MS’ relation.
What did I learn from it all? I learned the value of patient advocacy, especially when you can’t advocate for yourself. In my case, my husband became my advocate, and eventual caregiver, giving new meaning to me of ‘for better or worse’. I learned never to give in, especially when I’m not entirely convinced by what I’m told.
In all, I lost and regained the ability to read, to write and to walk. I had inpatient and out-patient therapy. My writing isn’t as effortless – and beautiful – as it once was, so I depend heavily on a computer keyboard. Eventually, I retired the wheelchair and swapped it for a cane. With it, I walk slowly, but then again, what’s the hurry?
But I can still put words together and put them on a page, for everyone to read. I always believed that I should write about meaningful things, maybe impact, or better yet, change someone’s life. And now, there’s me and ADEM.
Barbara Kreisler
