The Gift Of A Wonderful Life

What does one say about a partner of 22 years?

When I met Susan -- online initially -- I was only 24 myself, living in an apartment in Ohio. We met on a website, when she responded to a personal ad I had posted. As with much else in our time together, it was Susan who made things happen. She had decided she liked me, and within weeks of our initial email exchange, she had convinced me to fly out to the Seattle area, to stay with her at her house for a week.

I have always been a naturally cautious person. I tend not to take risks. But after our happy first meeting, she pressed me to move in with her. The sooner, the better. In March of 1998, I packed up my more important belongings into my small car, mailed some others, sold a few items, and left the rest behind in my apartment. I drove from Ohio to Washington State, with a stop off in Colorado to visit my parents.

Susan had a head start on me in life, an 18 year head start. I had only worked one job, for minimal pay, and had yet to land my dream job writing software. She already owned a house, worked as an administrative assistant. She had two children by a previous marriage, 12 and 11 at the time. My parents thought I was making a crazy decision. It was uncharacteristic of me. Yet it felt right, and I didn’t question it.

In my mind, I compare that buoyant woman, full of boundless and unstoppable energy, with the one lying beside me tonight. Mentally I draw a line between then and now, a line 22 years long. We’ve had some grand adventures along the way, and I’m proud of what we’ve achieved. I just wish the line were longer… and that genetics had dealt her a better hand.

Susan’s life has the makings of a Greek tragedy. She attracted me with her brilliant mind. She was strong, determined, unflappable, kind, playful, creative, courageous, funny, and wise. I described her as a genius. She was certainly smarter than me, and I benefited repeatedly from her wisdom throughout our years together.

Back in college, she studied German, because it was the most difficult subject she could find.

The tragedy lay in the fact that such an incredible mind was housed in a body seemingly designed to thwart her at every turn. She was always a big girl; she just didn’t let that slow her down. Trouble started when, shortly after I met her, she bought a new car, and the scent made her sick. She had, or acquired, Multiple Chemical Sensitivity. After that, we had to move to a new house, free of carpets, free of mold, free of chemicals to the greatest extent possible.

Houses with hardwood floors in the area were all too expensive. Undeterred, we decided to build one. Susan did the vast majority of the work on this project. She went through about a thousand house plans, looking for one with bedrooms on the first floor for the kids, leaving the upstairs for the adults. She found one she liked, though it needed some revisions. We hired an architect to make the changes, a building consultant to guide construction. We found a plot of vacant land in Newcastle, with a view of Lake Washington. Early in the new millenium, we moved into our dream house.

Building a house together is a task that drives many couples apart. Susan and I never had an issue. We were well matched in temperament, worked perfectly together as a team. We hardly ever argued, about anything.

Susan had sleep apnea; she relied on a CPAP machine to breathe at night. To ensure her needs would be met even if the grid power went out, we had designed the house with support to be powered (partly) by a gas generator. It saved us more than once.

I can’t discuss my relationship with Susan without touching on polyamory. My personal ad, to which she’d first responded, was posted on a polyamory website. Our relationship was intended from the beginning to be an open one. It remained theoretical for the first seven years or so; we were both just happy with each other. Around that time, I started dating some other people. Susan was supportive, allowing me to be myself and to follow my heart where it led. For her part, she made hardly any attempts to date others. She told me I had spoiled her. She couldn’t find anyone else who compared favorably to me, and she certainly couldn’t imagine living with anyone else.

We did attend some really interesting parties, though.

We had some neat adventures. Shortly after buying a new car, a Civic Hybrid, we elected to break it in, with a trip up to Canada and eastward to Michigan to attend my brother’s wedding. Again, Susan was the mastermind, and the powerhouse behind making it happen. She planned out a route, made reservations at some fancy hotels. I did the driving -- by that point she preferred not to drive, herself, if she could get me to do it. After the wedding, we returned westward across the northern United States, visiting Mount Rushmore and Yellowstone and the Corn Palace.

It was tricky to navigate my role with regards to her son and daughter, both going through their teen years with a newcomer under their roof. Susan was always supportive, nudging me in the direction of a parental role. They say stepchildren don’t accept you as a father until they reach twice the age they were when you met them. But in time, they did -- and so did the rest of Susan’s large, close family.

Susan’s parents, Harley and Maudie, were seniors when I met them, but funny and feisty. Susan and her siblings (two sisters and a brother) weathered the loss of first Maudie, then Harley. I remember Maudie sitting at their kitchen table, wearing an oxygen tube. They say you can look at someone’s parents to get a glimpse of how they themselves will look, someday. Susan’s path differed from Maudie’s in many ways, but she eventually ended up needing oxygen herself. She was diagnosed with sarcoidosis; a compromised immune system led to a few bouts of sepsis. Each time, she refused to succumb.

Over time, her health issues began to accumulate. She experienced muscle pain that limited her mobility, eventually confining her to a wheelchair, though she could still climb the stairs in our Newcastle house. The muscle pain was due to anemia, an iron deficiency whose source was never pinpointed. She began getting regular infusions of iron that helped to restore her red blood cell count.

For a time, we worked at the same company, a small software development shop called I/O Concepts. It was not just small, but unconventional. They were willing to accept my recommendation that they hire Susan to do Q/A. I was writing software and Susan was finding ways to break it.

Her employment at I/O Concepts ended when her growing health problems made it impractical to keep coming into the office. Being a small shop, they weren’t required to support her; they simply let her go. Pissed off by how they’d treated her, I quit as well. Soon after, Susan applied for disability and was eventually approved. She never took another job.

She wasn’t idle, though. She loved to create. She made collages, decoupage. She loved to color, and to paint. She especially liked making jewelry. More than stringing necklaces together, she really loved collecting beads, and organizing her collection. We spent hours at Shipwreck Beads in southern Washington, me pushing her up and down the aisles in her wheelchair, so she could pick out the ones she liked best. She liked a lot of them best. For a while, we tried selling some of her necklaces as an independent seller on Amazon. We didn’t make any sales, though it was fun trying.

She developed a wound on her stomach, a reopening of a place where she’d once had surgery. Once opened, this wound refused to close again. We started making regular trips to the wound care clinic, and I began learning about Mepilex and Tegaderm and zinc cream.

Over a decade and a half of practice made me an expert at applying these bandages. Just recently, after demonstrating how to apply Tegaderm to bandage one of her wounds, a nurse asked me about my medical background. I explained that I was a software developer. I have a lot of experience in some areas of medicine, but only working with one patient.

We found a shared love of the works of Terry Pratchett. We tried reading his Discworld books aloud to each other, and quickly determined that it worked best when I read, and she listened. We went through the entire Discworld series (at the time, some 25 books) -- and then went through almost all of them a second time. We bought every Discworld book we could get our hands on.

Though we lived together, shared a bank account and a house and the work of raising two kids, we didn’t elect to formalize the relationship -- not publicly, not for years. We did have a commitment ceremony early on: just her, me, and her close friend Chuck, sitting in a grassy field together, reading vows we’d each written for the other, followed by a picnic. But we remained unmarried. She’d had a bad experience in her previous marriage (the father of her two kids) and wasn’t eager to give the institution another try. Formally, for the purposes of insurance, we were domestic partners. Ironically, it was same-sex marriage being legalized that forced the issue. We weren’t able to remain domestic partners, so we got married instead.

The marriage itself, again, was a tiny and modest affair. It took place on the 15th anniversary of the day I’d moved in with her, March 15th, 2013. We had a small ceremony at our house, officiated by a friend from the polyamory community, witnessed by my parents and her father. We put all our planning, and money, into the reception: a big Discworld themed party, in which everyone was instructed to dress up as a Discworld character. Susan dressed as Sybil Ramkin, myself as her husband Samuel Vimes. We decorated the tables, adding small information sheets about different Discworld characters and locations. The walls were likewise decorated with Discworld-themed posters and banners. There was a castle for the kids to play in, and to color with crayons. Another friend from the polyamory community acted as photographer. Two of my other sweethearts attended, and one of them sang for us, while the smaller children handed out flowers. In lieu of gifts, we accepted donations to my family’s charity, the GPK Foundation, started by my parents. We convinced a band, the great Gaia Consort (now called Bone Poets Orchestra), to perform several songs for us. Adults and kids danced. There was karaoke -- I performed a sort of love song, Skullcrusher Mountain by Jonathan Coulton. We had gobs of friends and family in attendance. It was the most fun party I can remember.

When my parents elected to celebrate their anniversary in Hawaii on the Big Island, Susan and I turned it into an opportunity for a honeymoon. Due to her disability, we couldn’t join them at the hotel they’d selected for everyone else. Again, Susan rose to the occasion, finding the perfect place: the Lava Lava Beach Club. They had a cabin that was wheelchair accessible. Though the flight out to the island was difficult, it was marvelous when we arrived. The cabin had an outdoor shower which Susan could use while seated. Its view of the beach was superb. There was live music at the restaurant each night, which we could hear quite well from our porch. We were delighted by the geckos (though less so by the cockroaches).

What was most remarkable is that Susan’s breathing seemed to improve while there. It seemed to fall back to its old level when we returned to Seattle. We soon tested this with another trip, a slightly longer one -- partly at Lava Lava again, partly in a rented house. This convinced us the effect on her was real, and we decided it was time to move. A couple years ago, we went for broke. We rented another place, to act as a base of operations while we house-hunted. Well, once again, Susan did 95% of the work. Among other candidates, she found the house we ended up buying. The purchase went through surprisingly quickly. For Susan, there was no return flight to Seattle -- she has been here on the Big Island, living in this house in Waikoloa with its gorgeous views, ever since.

For myself, I still had my job with Amazon, and I had not yet convinced them to let me work remotely full-time. (I was already working remotely one day a week from Newcastle, to make it easier to care for Susan.) I managed to arrange a compromise: I flew back and forth, staying in Newcastle for two or three weeks, then in Waikoloa for two or three. For significant portions of my time away, Susan was left to her own devices. These separations were hard for both of us. Since moving in together back in 1998, we’d never spent as much as a week apart.

At first the house wasn’t terribly disability-friendly, so we had to get some construction work done to renovate it. Gradually we made it work for her, replacing carpets with wheel-friendly vinyl flooring, widening doorways, adding grab bars in the bathroom. We hired help to visit a few times a week and do the chores she couldn’t manage.

Selling the Newcastle house was a lot of work, and wouldn’t have been possible without the help of Sean, Megan, and her partner Ray. We ran very short of funds by the end, paying two mortgages. But at last, the sale did close, just over a year ago. I kept flying to Seattle, staying in a studio apartment.

It was only this year, in February, that I got permission at last to work remotely full-time. My next flight out to the island wasn’t intended to be my last, but then Covid-19 happened. Amazon instructed all its employees to work full-time remotely if possible. For the past ten months, I’ve been doing all my work from various rooms of this beautiful house, with Susan always nearby. Most frequently, I worked while sitting across the room from her.

She will be leaving us very soon. We are saying our goodbyes. I’ve always known it was a likelihood that I would outlive her. I went into the relationship with open eyes, and though this stage is painful, I don’t regret my choice. I didn’t expect it to end this soon. It’s been heartbreaking to see Susan’s mobility decrease over these past months. It seems that just as we got everything arranged the way we wanted it, our story together is drawing to a close. It’s far too early. There should be more chapters, more visitors to our lovely new home, more paintings and coloring and jewelry-making, more happy grandkids running around (or at least, seeing more of the same four happy grandkids).

We’re blessed to have spent so much time this year with Megan, her partner Ray, and their two girls; and to have gotten once again to see Sean and his two boys. They have all been an enormous help, and a force for healing merely by being here with us. Her legacy is not her crafts or artwork, as much as I like them. Her legacy is the family to whom she gave everything, and I realize how lucky I’ve been to have become part of that family and to share in her love. Now it’s up to all of us, to care for each other, as we adjust to living in a world without her in it.

Thank you Susan, for the gift of a wonderful life. I wish we could start all over again.

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