Apr
01

How did I get here?

By

This goes beyond the question posed by Talking Heads in “Once in a Lifetime” (a personal all-time fave). And it’s most definitely because of many-in-a-lifetime events.

big mike bourbon betty and junie d 1953First, let me introduce you to Mike and Betty Casey (Mike’s in the center, and Betty on the left, of the picture). The woman I knew as Aunt Junie (no blood relation, but much connection nonetheless) is on the right, and Junie’s husband Ted took the picture.

Yes, those are cigarettes. And yes, those are cocktails. It was 1953, and both were socially de rigueur, particularly in the subset that Mike & Ted belonged to: Navy fighter pilots.

I learned a lot about health, healthcare, managing illness, and end-of-life planning from all four of these people, but most particularly from Mike and Betty. My parents.

Mom (Betty) had a rare pituitary tumor, an adenoma, that went un-diagnosed for several years as doctors – all male – patted her on the head and told her that the headaches and visual disturbances she was having were all just menopause.

In 1979, the new doctor at the US Embassy in London (where Mike was the FAA rep for the North Atlantic), who was a woman, asked if anyone had ever taken an x-ray. They hadn’t. She did. Tumor discovered! The surgeon who was, at that time, the global expert on pituitary adenoma and its surgical removal practiced in London, and performed the surgery.┬áThe aftermath was that mom couldn’t see to drive, and was on cortico-steroids for the rest of her life. She was OK with that, and felt lucky to have been diagnosed before the tumor grew large enough to give her a frontal lobotomy.

She was not, however, easily swayed by the White Coats: when my family returned from England to the US, and mom shifted her aftercare to a neurosurgeon at Bethesda Naval Hospital (now Walter Reed Bethesda Naval Medical Center), he told her that the tumor was growing again, and that he needed to perform another surgery. She knew that her pituitary gland had been completely removed, and with it any risk of recurrence. My mom suspected that Dr. White Coat just wanted to get in there to see what the London expert had done. My very lady-like Admiral’s daughter mother told the Bethesda neuro, and I quote … “Get stuffed.”

Mike was dx-ed with Parkinson’s in the mid-’80s. He learned everything he could about his disease, and stayed on top of research. He asked a lot of questions at his neurologist visits. He joined the Parkinson’s Foundation. He even became a vegan for a while – a huge behavior shift for a very enthusiastic omnivore.

I advocated for both of them at various points through the ’90s, when they had hip replacement (Mike) and other issues (Betty). My father’s hip replacement was badly botched on its first pass, by a surgeon who should have known better. After 18 dislocations over as many months, the replacement was replaced – by a different surgeon. Learning experience, all around.

Mike & Betty wrote very clear advance directives in 1992, and made sure that we (the kids) knew their wishes and had copies of the documents.

In the last two years of their lives, I found myself having to advocate for them almost daily, and managing their transition from independent living to assisted living to a nursing home, always together and always connected to each other.

They died 29 days apart at the end of 2002.

What I learned from them is that your health is your responsibility, and that you must ask questions and work to understand the answers. If the doctor you’re working with isn’t working with you, you need to find another doctor. And if you need help, you need to seek it out.

And you always have to be ready to surrender to the process. Death is part of that, and I sat holding Mike’s hand for two days as he took the final journey to whatever comes next.

I’m a health activist and e-patient because I am the daughter of e-patients.

It’s in my DNA …

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