Life and Lyme

Muddling Through Life with Lyme Disease

July 4th is tomorrow. I asked Dad if he wanted to do anything and he gave me the look that said not only \”no,\” but \”HELL no.\” I am okay with that. In fact, since Lyme, I don\’t celebrate most holidays very much, certainly not like I used to. My theory is we celebrate most holidays for the kids or, if there are no kids, for ourselves.

Chronic illness can put the kibosh on any holiday; the pressure to \”have a good time\” or \”can\’t you have (insert whatever food or drink I can\’t have here) it just this once?\” often caused unwanted relapses because I did too much. Fortunately for me, Katie and Dad are easy. Most of my friends have worked to accommodate my needs without making a big fuss, so I can celebrate holidays with them when I feel up to it.

That\’s what happened in November 2015, when I was really sick. Katie worked at a kennel and volunteered to work holidays because she knew I was too sick to care. I had enough energy to cook the Saturday after, but on the day itself, Katie was at work and I was huddled on the sofa, so sick I could barely watch the Macy\’s Thanksgiving Day Parade (while  looking up the proper name for this, I see that this year my birthday falls on Thanksgiving Day, so now you all have something to truly be thankful for). The sky didn\’t fall, and the turkey, dressing, mashed potatoes, broccoli and gravy tasted just as good. We had an epiphany that day: holidays can be any day you want them to be.

So now I pick and choose, doing what I have the energy to do and celebrating holidays that make me happy. Katie pointed out that I always put up Christmas decorations, even when I am at my sickest. For those of you who know me, this might seem funny, given that I have been an atheist forever, yet I am an enthusiastic secular celebrator.  I happily put up decorations and lights and blast Christmas music between Thanksgiving and New Year\’s Day, and I do it whether there is anybody else present to celebrate or not, because I like it. On a cold, dark afternoon, the lights and decorations cheer me up, and more great music has been written in the name of Christmas than any other event. I don\’t have to be Christian to enjoy Handel\’s \”Hallelujah Chorus.\”

That first year I managed to get decorations up at some point after Thanksgiving, I can\’t remember when. We didn\’t open presents until Christmas Day afternoon, or maybe the day after. I watched sappy Hallmark movies and cried a lot, not because I was sad about MY Christmas, but because I was deep in the throes of neuroborreliosis, and crying was only one of the uncontrollable emotions I had then.

After that, celebrating a holiday when it was convenient for us or ignoring it altogether became easier and easier, until not celebrating was the norm. I let holidays choose the time. It seems logical, since nearly every day is a work day when you have a chronic illness. This past year, I\’m not embarrassed to say I had no idea it was  Easter Sunday until two days after.

I think holidays are important, if only for the brief respites they provide during the year. I also think they are just random days, except for the solstices, astronomical event that occur whether we notice or not.

Our society has made celebrating holidays almost fetishistic, a demonstration of one\’s patriotism, or faith, or devotion to dressing up, or cooking massive amounts of food. We have wreaths and signs and lights and candy and presents and fireworks and flags and tchotchkes galore. Popular culture makes me feel I must be a sad, pathetic person, or worse, a bad mom/daughter to not care about and mark each and every holiday.

I talked to Katie about it, suddenly anxious that I hadn\’t done enough in the last 8 years. She doesn\’t care, a sure sign she is my daughter. She also has happy memories of every holiday and can recite the foods, decorations, and celebrations that we shared. As an interesting side note, we talked about how holidays can shift in importance over a lifetime. When she was very little, it was all Christmas, birthday, and Halloween. Then July 4th and Thanksgiving started to take on a new importance. By the time she was out of high school, Halloween had dropped off her radar and Thanksgiving had become her favorite (except her birthday has stayed #1 forever, in her mind, she has a birthday month). Thanksgiving is my favorite, too, because it is simply a day to enjoy family, reflect on what is good in life, and eat.

My point is, don\’t assume that because I forget holidays or choose to celebrate them in my own way that I am unhappy about it. This year for fourth of July I\’ll be cooking ribs, and making potato salad and coleslaw at some point. Dad won\’t touch the potato salad (he doesn\’t like mayonnaise! Is there anything more unAmerican?) but he\’ll enjoy the ribs and a dab of slaw.  Then nothing until Labor Day, the holiday that is supposed to honor America\’s workers that morphed into the holy days of sales. Now it is simply a day off after a long stretch of the dog days of summer, and there is absolutely nothing wrong in celebrating that.


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