Life and Lyme

Muddling Through Life with Lyme Disease

I\’m at an age where I\’m thinking hard about what I want out of the backend of my life. Moving has only heightened the scrutiny, and the process is not one that lends itself to definitive answers. For some people that isn\’t the case. They will stay where they are, basking in post-retirement bliss in a home they\’ve paid off with kids and grandkids (and some with great-grandkids!)all living nearby. That\’s supposed to be the dream, right? Not for all of us.

Dreams have a way of changing, or at least mine have. There was a time in my life where that sounded pretty good to me. I think it changed when Katie was twelve or thirteen. I\’m not sure why, other than I was unhappily married with a daughter who adamantly insisted she was never going to have kids. At the time, I thought it was all a phase. Still, the seeds of change had been planted. As the years went on, I got divorced. Katie never changed from not wanting kids. I went to graduate school for writing (a big change in and of itself) and I got Lyme disease.

All future thought was on hold at my sickest. For six years, I thought of nothing beyond surviving through another year. Now that I am definitely \”stable\” (meaning  a random pattern of wellness punctuated by relapses), I think about the future. What do want to do with myself? I made a list:

  • Torture my dad with my presence for his remaining years (who am I kidding? Dad an Keith Richards will be here long after I\’m gone. They\’ll dance on my grave.).
  • Take care of myself. This includes having the time/energy to work out, cook, go to movies, have adventures with friends. It also includes lots of down time to relapse without feeling guilty.
  • Travel. I want the time and money to go see friends, to travel to Paris, or Palm Springs, or wherever to watch tennis, and to go and see the world. I may even spend time living in one of the places  part time.
  • Have a home base in Denver with Katie.
  • Write, write, write.

I suppose I\’ll do all of this as long as I can and see where I end up. Ultimately, I\’ll end up dead, of course, but that shouldn\’t keep me from planning the future. If the present is any indication, I\’ll be with Katie permanently at some point, subject to being \”taken care of\” by my daughter. As long as I don\’t kick up too much of a fuss, I should be good there.

Some people might be shaking their heads at the things on my list, or the inclusion of Katie in my future. I\’ve long given up on what people think of my relationship with Katie. I\’ve pretty much given up on what people think of my choices in general. But the stuff with Katie goes waaaaay back. She established her \”difficult child\” bona fides by the age of three. I got plenty of advice over the years on how to deal with her, mostly from people who didn\’t have a child like Katie. Don\’t ask me how or why some of us end up with children who can\’t or won\’t conform to what an ideal child should be. A child who doesn\’t care about pleasing you, or is simply different. Rather, ask me what to do about it, because unconventional children require unconventional answers. At her worst, I worried if she would want to live. At that point, making her to do dishes or go to school seemed pointless. My decision to let go of all those preconceived \”shoulds\” and \”ought tos\” ultimately proved to be right for us.

I still didn\’t trust my intuition about other decisions, even though I knew deep in my bones that I was doing the right things with Katie.  We joke about our entwined futures, but neither of us envision future plans without each other in some form or fashion. For us, the immediate future holds a flip: I\’ll be the one coming and going and making the home will fall on her shoulders. My gut tells me this is exactly what I need—what we both need—but I\’m still settling into this decision.

Really, it wasn\’t until Lyme that I have learned that I DO know what is right for me and sometimes those around me, often before I\’ve weighed all the pros and cons. Interesting, isn\’t it, that it took serious illness that completely shook me to my core to realize that.

Knowing intuitively what is best for me and actually doing it are different things. Nothing about planning a future is easy, even when you\’re older. The process of stripping my life down to the essentials induces something akin to pure panic sometimes. Letting go of anchors like possessions and places may leave me feeling unmoored, adrift in a new sea that has tides and waves I\’m not ready for. However, it is better than being anchored by those same things, firmly grounded where I don\’t want to be, held down by them instead of freed. It\’s time to let go and trust that I am more than things, and that Katie is perfectly capable and more than ready to create a home that also has a place for me, just as I have done for her.


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