She covers her eyes with her hands and starts to cry. “I thought you’d be mad.”
It was the second time today she had burst into tears. The first was disappointment. The hysterectomy she had been looking forward to having was being postponed. She had been preparing herself mentally for weeks and last night we had worked together to prepare her body. Oh those unpleasant enemas and douches. We were both glad when that was over. She had her last sip of water at 11:30 pm. “Nothing to eat or drink after midnight” the directions said. “Be at the hospital at 11 am.” We were there at 10:30.
Her oxygen levels are too low. The anesthesiologist is not about to do surgery. “Are you sure you’re feeling okay? Have you been short of breath? We’re sending you to ICU to see how to get your oxygen levels up. We’re calling in a pulmonologist and a neurologist.”
A very kind and skilled nurse brings in a spirometer and teaches her how to exercise her lungs. I have rarely seen my daughter so motivated. Motivation is not a strong suit for someone with myotonic muscular dystrophy (DM). She is told to use it every hour. She uses it several times in the first hour, proud of herself when her breath pushes the ball into “good.”
DM is a slowly progressing neuromuscular disease. Until Medicare kicked in a year and a half after she was awarded social security disability and before the Affordable Care Act was passed, she went without medical care except for a few trips to the emergency room and twice a year visits to a doctor through the Muscular Dystrophy Association’s clinic in West Chester. When she needed an endometrial ablation in 2013, she paid for it out of the back pay she received from Social Security. When her fibroids grew and began pushing against one of her kidneys, it was time to have her uterus removed.
General anesthetic is dangerous for someone with DM. Thanks to the Myotonic Dystrophy Foundation, we have pages of instructions for the anesthesiologist. The plan was to give her an epidural.
The anesthesiologist seems to know what she is doing. She tells me later, “You will need to advocate for a neurologist.”
I soothed my daughter’s tears the first time they burst forth. “I think this is good. You will be getting the medical attention you have needed for years.”
She is in panic mode. How will she manage her time off work? She has been granted six-to-eight weeks leave from her cashier position at a local discount department store where she has been working part time for the past several years.
Yes, she works part time since the convenience store where she had worked fulltime for seven years closed. When someone with DM wakes up in the morning, they feel as though they have already put in a full days work. My daughter has insisted on working and living independently for as long as she can. She lives with the fear of being in a wheelchair someday. I hope you can appreciate how big that is. Motivation is not a strong suit for many with DM.
“We’re going to take this one thing at a time,” I tell her. “For right now we need to get your oxygen levels stabilized. We’ll see what happens after that. You won’t be the first employee whose medical attention didn’t go quite as planned. Your workplace will deal with it.”
“What makes you think I’d be mad?”
I ask the question but I already know the answer. I cringe. Her fear harkens back to old behavior on my part. So much about the way someone with DM manages their world is foreign to me. In addition to the fatigue my daughter experiences with her muscle weakness, the executive function deficit that is part of the disease makes it difficult for her to plan ahead, organize her life, keep her living space in order, attend to personal hygiene. The list goes on and on.
As a perfectionist who needs order in her life, I have been impatient with her and sometimes guilty of angry outbursts.
She says, “You weren’t expecting this. You had your schedule all arranged for the surgery to be today.”
I’m retired. I have no employer to contact. I have plans with friends to rearrange and reworking my memoir can be put on hold. My daughter doesn’t know about the spiritual practice I have adopted. I have been working to maintain serenity and equilibrium in the face of any stress that comes my way. I’ve been working hard to let go of my need for order while she has been living with me in preparation for her surgery. I set an intention to extend loving kindness to her. She deserves that and so much more. She lives her life heroically.
I tell her, “I’m sorry for anything I’ve done in the past that would make you afraid I’d be mad today.”
I atone for past transgressions. My relationship with my daughter continues to heal.