Life and Lyme

Muddling Through Life with Lyme Disease

Picture of Tucson sunrise over the mountains from dad's yard

Two years ago I sold my big house, bought a smaller townhome with Katie, and left for Tucson to live with Dad. I did it with somewhat vague intentions, influenced by COVID, my own health, and my dad’s health. I spent zero time wondering if I was doing the “right thing” logically, and trusted my intuition. I was leaving my social network and the city I love, taking on an unknown role that might not work out. I was trusting Katie with a large investment in a new home as a co-owner. I didn’t and wouldn’t have an LLMD for my Lyme disease. No car, because I sold my car when we downsized. No job, except for a vague plan that I’d “find something remote and part-time” online. Somehow, though, I knew deep in my bones that this made sense and would be beneficial to all of us.

After two years, I’m happy to say that my intuition proved to be smarter than my logical self, as usual.

One of the appealing things about living with dad is that it would be largely stress-free. How can that be, you might ask, if your dad is in his 90s? Well, my dad is one of the lucky few who has reached 95 with relative ease. Sure, he forgets some things, and needs help with technology at least once a day, but my “caregiving” amounts to cooking, cleaning (both of which I would be doing at home in Denver), taking care of household maintenance (I do all the arrangements, and he okays them), and going with him to some appointments. I have my own wing in the house with its own entrance, so privacy is not an issue.

His retirement community has a pool, weight room, and hiking trails. It’s situated at the far east end of Tucson next to Saguaro National Park East. The views are wonderful, and the community is lively and invigorating.   

There are some drawbacks. The walkability score here is zero, which means you have to drive for any services at all, which I do not like. That’s somewhat minor compared to the fact that I have discovered I hate the desert. Yes, the pictures are lovely, but the desert is not. I don’t like the extreme heat for over five months out of the year (that dry heat argument? Bullshit. It’s like walking out into an oven. In cold weather you can put on more clothes and go outside. Not here, not at 110°). Everything is designed to hurt or kill you. It’s barren. The sun shines almost 100% of the time. It’s not for me.

The job quest has proven to be much rockier than expected. For one thing, I was sick a lot the first year. Secondly, there aren’t a lot of jobs that fit my needs: completely remote, flexible hours, and easy enough that I could do it when I was sick. I’ve found several gig jobs that allow me to pick up projects that are all short-term. Yes, there are gaps, but I find I need them.

Finding my community here has been quite easy, as it turns out. I already knew people here from my past visits, so when I moved here, I intentionally laid low. I didn’t go to community meetings or parties or throw myself into activities. No, what I wanted and craved was isolation and time to myself. This proved to be by far the smartest choice I made. I slowly met people while out walking Rocky every morning (that’s another thing I hate. Six months out of the year, I have to get out of bed and be walking by 5 a.m. because it is over 90° by 7 a.m.), or at Spanish table, or the pool. But mostly I stayed close to home, sleeping, being sick, writing, sometimes just doing nothing.

The last few months of the first year we had several big things happen at the house; the a/c conked out, as did the hot water heater and dishwasher. I’ve noticed that when people live somewhere a long time and get older, they often don’t maintain the house as well as they used to. That was certainly true of dad. I started to see a lot of things I could be doing, but I held back.

The second year marked the start of a flurry of activity around the house. I hand-scrubbed the tile (all 1500 sq ft!), shampooed the carpets, washed the baseboards and walls, and finally deep cleaned dad’s room and bathroom. I hired a handyman and locksmith, and finally, last month, scrubbed the outdoor teak furniture and I hauled away stuff from the garage and cleaned it. Dad has been extremely happy to have all of this done, and the house is now clean, fresh, and operating smoothly. I see that my job here is to take care of everything around him so he can age in place comfortably and safely.

This past six months, I’ve noticed that I have been sick less and less often, and when I’m sick, unless it’s a direct result of something like getting a vaccine or traveling, I’m not sick for very long. My brain fog lifts for days, even weeks at a time. I’ve grown far more confident at reading my body and symptoms and starting medication early. I would say I’m well more than I am sick now.

Meanwhile, although I feel anxiety about the future, I have also found the space to heal. One of the more intriguing topics I’ve been exploring is the link between childhood trauma and chronic illness. Here, I have the time to think deeply about my own traumas, and time to grieve. There have been a few surprises; I never thought being deaf in one ear to be a trauma, but it is a daily and ongoing trauma since the age of seven. Often, I’ll do almost anything to avoid thinking about traumatic things (see all the house cleaning above) but I’m embracing the emotional journey more readily now, and maybe that has something to do with my improvement. I can’t know anything for sure, but I’ll stay on the healthy train as long as I can.

I must have known all of this intuitively when I decided to barge in on Dad and stay here. Notice I didn’t say “move here.” Tucson is not my home. It will never be my home. My home is in Colorado and the mental distinction is extremely important to me. This opens the door to the only ongoing stress I have, and that is the knowledge that time is not on Dad’s side. He may prove to be like Jeanne Calment, the Frenchwoman who outlived her son and landlord and died at 122 years of age. He seems indestructible right now, and that’s a good thing, mostly. I feel as if I am in limbo, unable to move forward. It’s like senior year of high school with no end date; I’m excited for what comes next, but scared and clueless at the same time, and happy enough where I am. At any rate, I’m here for the duration.

 

Picture of Dad's house in Tucson where I currently live as a caretaker.

Comments

One response to “prescience”

  1. Mark Guarino Avatar
    Mark Guarino

    Thanks for writing this. I think many people have faced, or will face, this kind of situation so your insight is really valuable. Your journey was long and complex, but for the reader — me — your frank approach to the highs and lows is really appreciated. Why do people have to love everything about their situation? That expectation is not real life. The sacrifice you are making is honorable and is just part of life. You know it is temporary, which is tough to accept in and of itself, but one day you’ll look back at this experience and find it had its own rewards that would have been impossible anywhere else. Give us more! I love living in this world you’ve allowed us to enter.

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