So, I’m at Ellen’s house the other day and I see all the lovely birthday cards lined up on the windowsill. We all know how much I love birthday cards, since in a good year, I get no more than three. In that moment, I was struck with both shame and horror. I forgot the lovely Ellen’s birthday!
I scrambled like mad, scouring the edges of my inner sanctum for some recollection of when it was.
And then it hit me. Not only did I remember her birthday, I attended her party at Margie’s. I even baked a gluten free cake.
I’m really getting sick of this. It is almost worse to forget something that was lovely and wonderful than to have failed completely and forgotten.
My short term memory is awful. Like brain tumor awful. I remember sitting at lunch with my dear friend Bill who had a brain tumor. I made it a point of telling him the same joke over and over again, thrilled that he would laugh every time. I’ve never been good with jokes, but telling that one over and over again gave me a sense of accomplishment.
But then, he started in on the mustard. “Who put mustard on my sandwich?”
“I did, Bill. You asked me too.”
And then, he would bite in to the sandwich again.
“Who put mustard on my sandwich?”
“I did, Bill. You asked me too.”
And again, and again until that mustard-laden sandwich was in the belly and gone from both sight and taste.
Mary and I laughed and laughed and laughed just to keep sane. We could barely eat that lunch, the laughter raged through us. It wasn’t as if we were lacking compassion. It was just SO funny. Wild, crazy laughter. It kept us from losing it. He didn’t remember. He wasn’t ever going to.
When I look back on those days, I still can’t believe she survived it. Mary, his wife was and still is my hero. Their son Max, who is now in college, was just the age of my son now. He was a little pre-schooler, with a very sick dad.
I wonder, too, how I am surviving this. I wonder how my kids are coping. I watched my big son’s face tonight, as we talked about Dad working both Christmas Eve and Christmas night. His anger over the fact that we aren’t a normal family is huge. He thinks it is so unfair that Dad spends his holiday with rich people instead of with his own family.
It is unfair. And, I’m tired of it. I’m tired of being sick. Tired of not being able to work a full time job, not having the energy to bathe my son, not having the energy to make sure their clothes are clean.
I thought the 90’s were a tough decade. I married the wrong man, too soon after the death of my father. I had horrifying nightmares that I now know to be Bartonella. I got divorced. Bill got sick and died. My cousin, Bliss, was murdered. We became homeless for the 1st, 2nd, 3rd, 4 h time due to my Multiple Chemical Sensitivities. I lost a baby, most likely from Lyme.
As I approach the end of this decade, though, I’ve never been so glad to see one come to a close. I lost my last remaining parent. My little baby got very sick and nearly died. I started getting crazier, weaker and began to lose feeling and balance. I got diagnosed with a disease that has no cure, and found out I passed it to my kids. I treated for a full-year and feel no better than I did last year. In some ways, I feel worse. I learned what it is like to live with chronic pain, neuro symptoms and heart palpitations. I’ve lost friends, learned what it feels like to be ignored, and experienced abandonment that rivaled becoming an orphan.
But there was beauty in the decade. I have two beautiful, strong, courageous sons. I have a partner who sticks by me, even though the Bartonella monster is difficult to stick around for. I’ve met great people, most of them through online support groups, who walk with me through this insipid disease. I’ve reconnected with college friends. I’ve done some great radio, inspired kids to write more, and biggest of all? I’ve stared into the face of Borrelia Burgdorpheri, Babesiosis and Bartonella, refusing to let it beat me.
I need to keep treating, and treating aggressively. Even if I don’t remember what I did yesterday, where I put that $20 bill, or that I celebrated Ellen’s birthday I still need to treat aggressively. Treat like my life depends on it.
And on the really bad days, I just need to remind myself who put the mustard on my sandwich.