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Over the past few years, I’ve written memorial posts about members of my family that have died, notably my mother and father. But I haven’t talked much about my sister Patricia, whom we called Pattie (or sometimes Patty). She died in her sleep in 1998 when she was only 44 years old. Medically, she died of heart failure. There was virtually no warning. Because she died at home alone, local law required an autopsy, and that report said her aorta and coronary arteries were almost completely clogged. She was a skinny woman, too, which shows that what’s on the inside isn’t always reflected on the outside.

My family doesn’t have a good set of genes. As best I can tell, we are genetically predisposed that our bodies start falling apart once we hit about 40. It’s like we get the smallest possible window to pass on our genes, and then that’s it. I think of it as Evolution saying “You had your chance, pal. Now get the hell out of the way!”

There were four kids in my family. First came two girls, then two boys. I’m the first boy, which means something in an Italian Catholic family. I was expected to “carry on the family name,” and in general make people proud as hell. I think with my writing career I managed the proud part. My choice in spouse, although excellent, precluded the family name part, though.

Pattie was the second girl in the family, and was only about 18 months younger than my eldest sister Marie, which inevitably led to unfair comparisons both inside and outside the family. Marie did well academically and socially all through school, and Pattie was always expected by family and teachers to measure up. Naturally, she rebelled. Marie graduated from high school, went to nursing school, and graduated as an RN. Pattie graduated from high school and went to work as a teller in a bank. She did well there; her social skills were excellent and over several years (and over the course of a variety of bank acquisitions) she ended up as a branch manager and eventually became the by-then Savings and Loan vice president of marketing. When the Savings and Loan crash of the 1980s and 1990s happened, her institution was purchased again by a much larger bank, and she was among the human casualties. Making the change from being a valued member of a tight management team that worked well together to looking for a job in the teeth of a industry-wide shakeup and recession was difficult for her. Losing such a long-familiar work and social situation hit her hard, and it took her some time to regain her balance. She bounced back and ended up at GE Capital, seeming to once again be in the kind of supportive environment in which she thrived.

Looking Out For Number Two

In her personal life, she tended to prioritize other people’s needs above her own. I was as close to her as anyone (we shared literary interests and I think we both felt kind of lost in our family), and along with the rest of the family, I was sad and felt keenly that she never found the supportive and committed relationship she always wanted. She ended up being one of those women who are consistently attracted to charming schmucks who were incapable of returning the wellsprings of love and caring she could bring to a relationship. She drifted from one of these losers to the next, never finding what she needed. As my brother-in-law recently said, “She was on a quest, but never had a clear destination.”

She was devoted to our father and our grandmother. We lost our mother a few years earlier to pancreatic cancer, and Pattie put aside her own grief in order to help our dad deal with his loss.

Community Work Leads to a Find

Perhaps to fill the missing part in her personal life, Pattie spent more than 20 years in community service and held leadership positions in many different organizations, including the March of Dimes (maybe as a reaction to me being born with spina bifida). She also spent time working for the City of Hope, an organization that saved my brother Robert’s life with a bone marrow transplant, at a time when it was still barely out of the experimental phase (and my sister Marie deserves a huge amount of credit for being the compatible donor).

Early this year, before my own medical situation took a big turn for the worse, I was cleaning out a nightstand drawer, and Dori reached in, plucked out a small silver spoon, and said, “I didn’t know you were big on coke when you were younger.”

“I wasn’t; that was my sister Pattie’s. She wasn’t a heavy coke user either, that’s an award pin she wore on her lapel. It’s called the Silver Spoon Award, and it commemorates her years of service with the Garden Grove Chamber of Commerce Women’s Division. See the engraving, and the pin on the back?”

“Yeah, and it’s too big to be a coke spoon, anyway.”

That inspired me to take a picture, have some talented friends change it for me,  and write this post. Pattie had a good sense of humor; even though she died only a few years into the Web’s existence, I think she would have thought this commemoration to be a hoot. On the other hand, I can’t be sure that she wouldn’t have been an avid consumer of some fake news sites (especially the left-leaning ones).

I’ve been meaning to write this memorial post since March of this year. Sorry to be so late. Still, better late than never, and better to have it done before my own cancer prevented it. Writing it has made me feel closer to my sister I lost 18 years ago.

Pattie, here in my own twilight, I can practically see you sitting next to my hospital bed and feel you holding my hand. I know you would be here if you could.

I love you, sis.

toms_spoon_final

Photo illustration courtesy of Lesa Snider.
French to English translation courtesy of Kirk McElhearn.

I’ve never thought of myself as any great beauty. I can’t even go for the “ruggedly handsome” look. Yet there was a day in 1996 when the title of a beauty queen was kind of thrust upon me. It’s an odd story that involves the combination of my lifelong disability, my eternal willingness as a book author to hype my work, and some very nice folks that wanted me to help do some good in their community.

Let me set the medical stage. I was born with a congenital birth defect called spina bifida. Kids with spina bifida are born with something wrong at the lower end of their spinal cord. Sometimes the deformation is so mild that the patient has essentially normal function, and may never find out about their spina bifida until they get a x-ray later in life. In moderate cases, which is where I fall, there could be a bump under the skin at the bottom of the spinal cord. This bump is usually made up of fatty tissue, and often snags and holds the spinal cord in place (which is why it’s sometimes called tethered cord syndrome). The doctors knew I had spina bifida because of that bump right above my butt (surgically removed when I was 9 months old; before the advent of CT or MRI, so they were practically working blind), and I also had some ancillary problems, such as a club foot and some neurological defects. I had a bunch of corrective surgeries throughout childhood, and something medically awful happens to me around every ten years. It’s had nothing to do with my current cancer, though. Still, I was in relatively good shape, because kids with more severe spina bifida are born with their spinal cords hanging outside their body in a little sac. They are usually paralyzed from the waist down and therefore live out their (often considerably shortened) lives in wheelchairs. I was born in 1956, and very few people who were born with spina bifida in my age cohort are still alive. In contrast, my spina bifida was mostly under control in 1996; I was completely ambulatory (didn’t even use a cane) and people who met me generally had no idea I had a disability.

Enter Kentucky

So one fine day in 1996 I got a call out of the blue from a very nice gentleman who was working for the Spina Bifida Association of Kentucky. At the time, I had written a few books, and I was a Contributing Editor at Macworld magazine. I was certainly no celebrity, but I fit the criteria he was looking for, which was basically Spina Bifida Folks Who Have Made Good. He asked if I would be willing to come to Paducah, Kentucky to take part in a spina bifida awareness event they were having. They would pick up transportation and lodging, I could bring a case of books to sell at a get-together with other folks from the community, and a local computer store wanted me to give a talk about the Macintosh. It looked like a fine two-day trip. They was no pay, but I figured it would be fun just to do. Travel arrangements were made and I flew into Paducah on one of those little prop planes. My hosts met me, and then we were off to the B&B where they had secured a room for me to stay. As we were driving there, I chatted up my host and mentioned that there certainly seemed to be a lot of churches, given the town’s size. He told me that there were probably more churches in town than in any other in Kentucky, and depending on the church you belonged to, it would make a major difference in the prosperity of your business. I thought how different that was from Southern California, but held my tongue otherwise.

The next day was the event, and we started out at the computer store where I had a talk about Macintoshes ready to go, which I delivered to about 30 people. I noticed something a little odd; all of my hosts were unfailingly polite, but there was something a little off in the way they were treating me. I finally figured it out: because I had spina bifida, they had expected me to show up in a wheelchair. Well, I couldn’t be responsible for their expectations so we continued on to the event.

There I was sat down at a table where I had a chance to talk to several younger people with spina bifida, and we had some good talks about how it was possible to make your way in the world even though you had a disability. I think I was able to help them with my perspective as an adult, even though I wasn’t in a wheelchair.

My table mate was the lovely and talented Miss Kentucky, Veronica Marie Duke. It was kind of cool to see how she did autographs; she had a pad of photographs with her picture which she would sign, tear off the top sheet, and hand it to her adoring fan. The little girls, in particular, were knocked out by that crown. I chatted a little bit with her, but she was mostly strictly business.

The Sign

But here’s the thing that I liked the most about the whole trip: the sign on the front of the table we were sitting at. I have the original in a box somewhere, but I’ve mocked up this exact replica.

TOM NEGRINO

MISS KENTUCKY

Thanks to whoever was knocking out those signs for writing them that way.

And on the flight home, as the plane banked away from Paducah I realized something: I felt pretty.