The heartbreak of helplessness seems to be my worst Lyme symptom these days. Yes, I still have headaches, anxiety, body temperature and heart irregularities, yadda yadda yadda. They don’t compare to the pain of seeing my baby suffer and not being able to fix it. She’s not really a baby, she is 15. You other Moms understand though. She is my baby. And so beautiful.
If there was a phrase that best described the way she manages her illness it is “Never let them see you sweat.” She doesn’t talk about it per se. She will complain about symptoms, i.e.: My neck hurts, I’m tired. She doesn’t talk about what it is doing to her spiritually. That scares the living poop out of me. I know what it does to us. I read, day in and day out, the misery this illness causes. Depression. Such depression caused by losing oneself, abilities, desire to keep fighting. I live it, so I know she lives it too. But she never vents. She projects in her own special way. She takes all the poison that builds up inside her and hurls it at me. There are no words. It is all silence and subtle behavioral quirks. I know when she is having a bad day because she shuts me out. It is like she encloses herself in a plexi-glass box. I can see in but can’t reach her. Touch her, hug her. If she speaks it is inaudible mumbles that drip with contempt for my presence. She will lay on the couch under a blanket covering her head. I see a glow of the I-phone or Mac through the blanket. She will shut everyone out and look at the world digitally. Rather than talk, she will surf stupid useless pop culture crap that fills the empty void in her life that used to be filled with figure skating and strength training.
Somehow, she manages to complete school work. At least she reaches out for help when she is overwhelmed on that front. I read her assigned honors English books so I can help her find words to write papers when her brain is completely fogged in. How can she write a scholarly paper about Sir Gawain and the Green Knight when she can’t comprehend “Dick and Jane -See Spot Run.” I don’t do the work for her, but I can advise and coach her in the right direction. My husband is a mathematical whizz and will spend three hours a night (after working a 10 hour day) to help her with algebra. Her willingness to fight for her grades is beyond the call of duty. She is a storm trooper when it comes to school. And for that, I am humbly thankful.
I don’t for a split second underestimate how fortunate I am that she doesn’t act out in a million other ways that can be devastating to her. Drugs… wouldn’t touch them. No interest in drinking. Boys: Can’t be bothered — too much drama and she thinks they are all pretty much jerks at this age. I know inside she probably calls them assholes, but she doesn’t even swear, so…. Smoking: She finds that repulsive. When I weigh all this I graciously accept the generalized contempt she seems to have for me. I am after all the person that gave her the disease. When she is deliberately uncooperative and snarky beyond belief, I am learning to embrace it like she has given me one million hugs.
So imagine my profound disbelief when I pulled the lid off the garbage can to pull the bag of trash out and found a Ziplock baggie of pills. I reached in and grabbed the baggie. I stared at for what felt like an hour- identifying every item. Plaquinil, nystatin, biaxin, malarone. At least one week’s worth of treatment was floating in the baggie with a paper towel that I’m guessing was supposed to hide them. I felt my insides dissolve. What, why, I don’t understand…. my mind swam in every direction and with total lack of self control I immediately turned to her and said, “What do you know about this?” I’m sure it was filled with accusation and as corrosive as acid, but I was reeling. She shrugged her shoulders and said, “I don’t know.” I continued with, “They are clearly your pills because the plaquenil are cut in half.” She just said, “I didn’t realize I threw them away.” I put the bag on the counter and went upstairs to hide in my bathroom.
A few moments later, my husband walked in. I told him about my discovery. He paled a bit, and said he would talk with her. His discussion yielded nothing new. So now for days I am asking why. Why did she do this? Did she seriously just forget to take them and just emptied her lunch bag out and thought they were garbage? Did she purposely throw them out because she has given up? Did she purposely dispose of them that way so we would find them — as a cry for help? Tell me…what am I dealing with? I’m at a total loss.
I just want her to really understand how much I love her and am in awe of the amazing person she is becoming. I tell her that– a lot. I’m not sure it sinks in. There are words to a song by Coldplay that are the only words I can find that may penetrate deep enough into her heart so that she understands my feelings for her. The song is called “Yellow”. The words: “And you know, for you I’d bleed myself dry. For you I’d bleed myself dry.”