My son, Peter, the Chronic Lyme sufferer, is now in what he says is “the worse pain he has ever felt in his entire life.” He cannot sleep, he can barely eat, and writhes in bed all day and night. He cannot stand it much longer despite the 42 meds per day that he swallows. Those are in addition to his PICC line administered IV mega-antibiotics and intramuscular shots of morphine with still, no relief. I cannot stand this much longer either. I am sick with the yearning, the begging, the pleading with Jesus Christ at the very least, for relief for my son. Mary, Mary, you know. I know you know. Can you help, short of death, or is that the only distance you know for pain and suffering? I have already given up one son. I cannot lose another.
What is it I need to do? What do I need to not do? What do I need to know? What am I missing? I pray so hard that my teeth clench. I went to the Lenten series last night at my new high falutin’ church with soul. I sat, I kneeled, I buried my face in my hands. I listened to the heartfelt music, some hymns, some more modern sweetness and one rendition of that angelic girl in the heart wrenching movie, In America, singing, “Desperado.” It made me cry once again. If everyone wasn’t so perfectly dressed and coifed in that church, I might have considered (for more than a moment), throwing myself on the marble floor and wailing, sobbing, and begging out loud for God’s mercy on my son. I try different words in my prayers. I try bartering. I try being firm and I try allowing my weakest self to beg shamelessly. My son gets worse instead of better. God, can you not hear me? I am screaming? So many are praying. Still, still, still. Help me, help me, help me…. as Anne Lamott would pray.
Yesterday — I stared at my son sitting in the medical office for his exam to qualify for disability. I cringed with sadness at his unwashed hair, his messy clothes, his emaciated body that was once that of a star athlete – captain of every high school sports team. I stare at him, mostly in disbelief, wondering how on earth he could have gotten to this limp, devastated state at 26 years old. How, how, how?
Today –changing meds, changing pain killers at the direction of a seemingly very smart pain specialist, invites some withdrawal into the picture. That makes the pain worse while getting off the high doses of opiates switching to lower doses of methadone which one can only increase at a slow and safe rate. She says, “I can’t increase the methadone faster because I could kill you.” I wince. Adding more sleep meds now, the doc suggests we “listen at night to be sure he isn’t having sleep apneas. Check for deep snoring, or irregular breathing. Get a baby monitor and take shifts with your husband to be sure your son is breathing.” Great. I am already barely sleeping. I am in that constant, itchy, someone-please-rip-my-skin-off state. I now need to listen for breathing patterns. My son mentions that this will drive his mother crazy. “She is your mother. That is what mother’s do.” Doesn’t every mother have a breaking point or are we made of something other than normal blood and guts?
Which is worse? Being in searing relentless physical pain yourself or watching your child, the one you love with all your heart and soul, in that pain? Has anyone ever answered that question? Mother Mary come to me, bringing words of wisdom, let it be.