I, petunia

Yesterday evening I tended my garden with a childhood song going through my head: “I’m a lonely little petunia in an onion patch.” (Yes, they don’t write ’em the way they used to.) It played itself mercilessly, grindingly, until I had to wonder why. With neither petunias nor onions before me, why was that lonely little petunia singing its country heart out in my head?

Why did I even have to ask? I’ve been thinking about loneliness. And about aloneness. Being alone is not the same as feeling lonely any more than being with others is the same as not feeling lonely. But both have been orbiting in my thoughts, like phasing moons.

The other day I heard friends talk about taking risks, about making choices without a clear vision of consequences, about holding to principles. Each owning her singular way. Each her own petunia in her own onion patch.

I just lived through three weeks without family nearby. They were gone, and I was terrified. I hope it didn’t show. But the time was instructive. I learned that a long time living without family nearby is just as scary as thinking about it. Onions to the horizon. And me, petunia.

Mine was the voice singing that redundant song. On some level, I had embraced my inner petunia.

I think loneliness and aloneness are not avoidable, and I also think we need not run from them. To know ourselves, we must be alone and must feel lonely — sometimes. Aloneness is harder for some than for others, to be sure, but loneliness is hard for everyone. That singing petunia was plaintively human. And insistent in my head.

It sang of life. Much as we need other petunias, it’s the onions that teach us our lives are on us.

Family knows

It is now about 7:30AM. Eighteen years ago this hour I called my mother. She was in the hospital’s oncology wing, and I was at home ready to make my list of what she wanted me to bring when I visited. We chattered as usual, but then Mom started talking about the clock. She didn’t make sense. Then we were back on track. Then her subject floated away again and I couldn’t figure out what she was talking about.

I told her I’d see her later, she said ‘bye, I hung up and immediately called the nurses’ station. “Is my mom OK? Did she have a stroke?” The nurse assured me that Mom had been observed and nothing alarming had been noted. So I went on with my morning. Before long, the nurse called back to ask how soon I could be there. I was stunned by the sudden urgency.

As I learned later, Mom’s oncologist had been in the nurses’ station when I called. Within seconds, the nurse had relayed my concern to the doctor, who grabbed Mom’s chart and made a beeline for Mom’s room, saying to the nurses, “Family knows them better than we do.” She checked Mom and instantly transferred her to Intensive Care.

It was the day from hell, and Mom died that evening. My memories of it are fire and smoke: searingly bright and chokingly obscured. But the doctor’s words rose out of it: family knows.

Those words resounded through my caregiving years. Deniers who said I exaggerated and medical personnel who considered me irrelevant tried to undermine my faith in my own insights. But I clung to the doctor’s words and I pass them on to you. If you are family caregiver, believe in yourself. Family knows.

GQ Dad

I would argue that Dad was by nature a man of questionable fashion sense. It can be reasonably opined that I inherited this, but “it takes one to know one” strengthens my argument. The Fathers’ Day ties I gave him were likely no help.

Bad ties aside, Dad was obsessed by red. His wardrobe, his walls, his cars, his lawn would have been blazing scarlet and sultry ruby had he his way. Every time Mom bought a black dress, he would observe that it would be much nicer in red. I’m sure he thought her iconic potato salad would have been better with a dousing of red food color.

One fateful Christmas, someone bought Dad a brilliant crimson shirt, and thus was born his favorite Christmas ensemble: red shirt with a painfully green St. Patrick’s Day tie. He wore it annually with pure euphoria and we dove for sunglasses.

Dad usually looked good, though, because Mom governed when it came to clothes. His blacks and beiges and pristine white shirts were her doing. And, protests to the contrary, they were his preference for most occasions.

But after Mom died his daily wardrobe became more expressive of his inner Matisse, and one day he emerged from his bedroom in full bloom: brown tweed trousers and red-plaid flannel shirt. Over the shirt — wait for it — a beige sweater with green and orange polka dots. That became his favored fashion statement his last autumn. Blaming the dementia would be handy but not fully honest.

The world according to Dad was brown tweed with red plaid with green and orange polka dots. His spine was straight, his head high: the proletariat could wear whatever — he rocked the look.

Happy Fathers’ Day to all dads who rock the look!

In our blood

Thunder woke me. In those first micro-seconds of brain fog, as I instinctively struggled against the waking, I felt something in my mouth. I tasted it. Groaning, I willed my body to move and bumped my way into the bathroom where the mirror confirmed it: a mouth full of blood. It looked like red paint all over my teeth and tongue.

So there I was, in the wee-hour pounding of an Indiana summer storm, spitting blood into the bathroom sink. Spit. Rinse. Repeat. Try not to throw up.

“A mouth full of blood.” It sounds absurd. Who am I — Dracula?

It took a photo to clarify to my doctor what I meant by “mouth full of blood.” She whisked me to an otolaryngologist, who diagnosed HHT Syndrome, also known as Osler-Weber-Rendu Syndrome. Hereditary Hemorrhagic Telangiectasia is an uncommon genetic disorder which causes abnormal blood vessels, and it gets worse with age. Swell. As though aging doesn’t bring surprise enough.

I was born with this but didn’t know it until 70 years later. Apparently my dad was born with it too but he never knew. His long history of nosebleeds foreshadowed my own and revealed the source of the problem gene (thanks, Dad).

Nosebleeds. “Piffle!” think people who don’t know better. After all, who hasn’t had a nosebleed? Right. But HHT is not about your run-of-the-mill nosebleed. And it isn’t just about nosebleeds, which are bad enough. HHT is about missing capillaries, about tiny abnormal blood vessels (telangiectasias) that rupture and can lead to anemia, about large abnormal blood vessels (AVMs) which can be life-threatening. It’s about hearing doctors say “I’ve read about it but never had a patient with it.” It’s about all the ramifications of having an atypical vascular system.

For me, it’s been about learning not to take ibuprofen or fish oil supplements or melatonin, about watching my intake of fish, raw cranberries, red quinoa, famotidine. About having ocular migraines. About avoiding vasoconstrictors. It’s about learning that HHT was the likely reason for my post-tonsillectomy hemorrhage circa 1948.

It’s about living with and aging with a disorder largely unknown to doctors and dentists but sharply relevant to their treatments and procedures.

It’s about wondering if small hemorrhagic strokes contributed to my father’s dementia, and if I have passed this on to my children and grandchildren.

It’s about bleeding from my nose and mouth, and knowing that I might some day bleed from ears and face since I also have telangiectasias there. It’s about knowing that internal bleeding is possible. It’s about knowing I am luckier than many others with HHT.

June is HHT Awareness Month, and this is my part.