Tomorrow will be the first anniversary of my mom’s death at the ripe old age of 70. That’s not old, but it’s not young, either. It certainly doesn’t come close to the average life expectancy.

My mom had a massive stroke five years ago, just a few days before Mothers’ Day. It left her unable to care for herself and unable to communicate. She spent her last four years in a series of nursing homes, dying a slow death. 

There was major travel involved to visit my parents, so we could only manage one or two trips per year. Every visit felt like ripping open a gaping wound that had only just been stitched up. I cried a lot. I could see her, in her eyes. I knew she was in there, and it was heartbreaking. I tried not to cry in front of her. 

The first time I saw her at the first nursing home, I greeted her with a smile and a gentle hug. She gripped my hair  close to my ears with both hands, and shaking violently, yelled, “AAA AAA AAA AAA AAA AAA” right in my face. Mom was pissed, and she was strong. But what was she trying to tell me? Why was I the one getting this abuse?

There was so much for her to be pissed off about. My parents never had a lot of money. They struggled and borrowed and somehow got by, raising three kids. My dad was chronically employment-challenged, and even as a little kid I knew not to ask for anything “extra.” He had a heart attack at 58 and couldn’t work full time after that. Mom was the one who went to work every day, making sure they had more than just Dad’s disability–which took the usual process of multiple appeals over several years. By the time she was able to retire, they had little more than their house, which they had the foresight to buy in a good school district 40 years prior. By the time they decided to move to the South, they were able to buy a new house and have a little cash cushion left after selling our family’s home. Finally, they could rest easy and enjoy life a little. The stroke happened nine months later.

This situation was Mom’s worst nightmare–sitting there with all the drooling, babbling, diapered old ladies. For a while she resisted the notion that she was one of them. That was the period when she had regained a few words, most notably, “asshole.” There was one nurse she couldn’t stand, and it was pretty hilarious, in a pathetic sort of way, to hear the word burst out of her when that nurse walked by, as if from a ventriloquist’s dummy. I imagine it required a bit of effort, both intellectually and physically (what with a mouth that didn’t want to open). So, yeah, Mom was pissed.

Rewind to the last time I saw her before the stroke. My parents had come to visit for my daughter’s third birthday. I showed them the movie, “Under Our Skin.” I said, “Dad, if anything serious ever happens to Mom, PLEASE get her tested for Lyme.” 

You see, she had felt sickly as long as I could remember. She always had some weird infection or another. She was diagnosed with arthritis when she was younger. She’d had episodes of severe pain and weakness in her legs. She’d had MRSA, and once, a blocked renal artery that required emergency surgery to place a stent. But she ALWAYS felt better when she was on antibiotics. The kicker? Mom had had Bell’s palsy around the time I was struggling to figure out what was wrong with me. She had been with me that beautiful, Indian summer day we decided to go for a peaceful stroll in the woods, happily and obliviously shuffling our feet through the fallen leaves.

My mom was angry at me most of the time when we would visit. I interpreted her disdain as anger for my failure to carry out the instructions I’d given my dad. He did have her tested, and they told him it was negative…but we know that means nothing. The genius doctors proclaimed that the Bell’s palsy from years ago must not have been Bell’s palsy at all, but a previous stroke! Aha! So they can’t bother to understand what OspA is/does, but they can retroactively diagnose a condition based only on current information, which didn’t even include a CT scan. So I knew they wouldn’t have done anything differently if the Lyme test had come up positive, and it was pointless pressing the issue. The last time I saw my mom alive, she was obviously depressed, had gained a substantial amount of weight, had trouble breathing, and was barely mobile. It was no way to live.

A year ago today, I wrote a letter that was requested by a friend from the Lyme community. The letter was addressed to the governor of her state, urging him to compel the state’s legislature to review a Lyme bill, rather than ignore it and let the session expire. It was a pretty big deal for me, considering I had only immersed myself in the online Lyme community a few months before. And I still didn’t feel totally confident that I could write authoritatively enough. But I devoted my Mothers’ Day last year to the only thing that seemed to matter, and it turned out to be the tipping point for me to become activist for this disease. My mom died the next day.

Isn’t it sad that sometimes it takes someone dying for us to understand them? 

Thank you, Mom, for telling me loud and clear that I am on the right path. I know that today,  in your otherworldly life, you’re enjoying a cup of coffee in your flower garden and planning your next goofy prank. I love you, and in this life, my life, I won’t let you down.

Here are a few studies that link Lyme to stroke…and there’s plenty more where those came from.

http://www.ncbi.nlm.nih.gov/pubmed/25882056

http://www.ncbi.nlm.nih.gov/pubmed/18760428
http://www.ncbi.nlm.nih.gov/pubmed/8232882

Categories: Lyme Disease