Mama was diagnosed with Common Variable Immunodeficiency (CVID) in the late 1990s, right around her fiftieth birthday. She had a big birthday bash planned at The Palm. She had bought a fabulous new dress: white floor-length silk, off one shoulder. It would show off her tan and her long, dancer’s neck. As her birthday got closer, she tried on the dress and it engulfed her. She was suddenly losing a lot of weight.
Mom had always had terrible allergies and was prone to getting serious infections, like staphylococcus. She took antibiotics like they were vitamins for most of her life. But this weight loss was different.
I’m not sure of the exact early progression of the disease. There were a lot of tests and they basically treated the variety of symptoms as they presented. From the start, we knew this disease would probably kill her, but never exactly how. I remember once in those early days being summoned home to see her. She lay on the couch and tried to prepare me for the idea that she might die, like soon. She could not breathe. She was being treated for asthma and bronchitis, but she was just not getting enough air. She was so scared.
She got through that bout. For a long time her illness was a mystery. Eventually they diagnosed her with CVID, an actual disease with an actual treatment— a monthly blood infusion to boost her immune system with cells her body wasn’t making. The treatment itself was hard on her and had terrible, debilitating side effects. The technicians often had to try several times to find a vein that would sustain the flow of the treatment. Her veins were tiny and weak and would burst unexpectedly during the day-long process.
She had pounding headaches for a couple of weeks after each treatment. She said it felt like a Mack truck was parked on her head. She also had terrible nausea and vomiting. She had thrush in her mouth and after a few years, her teeth started corroding away from the frequent vomiting.
It was no way to live. But it was all she had. So she worked with it.
Still, the disease progressed, and when she went on disability, she gave up the treatments. Disability would only pay for treatments in a group setting in a hospital and she was more afraid of being exposed to hospital infections than she was of the consequences of giving up the treatment. The treatment was always only a stop gap. Her illness had no cure. But by stopping the treatment, she essentially made the decision to let it run its course.
So followed years of rheumatoid arthritis, pneumonia, asthma, more nausea and headaches and then the drugs to address these things, and then the side effects from the drugs, and then often more drugs to address the side effects.
All the while, she became more and more isolated. She was afraid to go to public places or be around people. Over time, she physically couldn’t. And also over time, people stopped coming over to visit. Even phone calls with friends became less frequent.
Chronic illness presents a challenge of acceptance that most people find very difficult to meet. It’s hard to understand either emotionally or intellectually that a person is never going to get better, but they’re also not terminally ill—death isn’t imminent. They simply have good days and bad days and you all just have to cope with them as they come. I’ve read about compassion fatigue and how even the closest friends and family of chronically ill people often reach a point where they just wish their loved one would let go and die. They can actually act out in anger at the ill or dying person for seeming to hang on. The futility and helplessness is stressful, and it’s easy to forget that it isn’t about you. Only the innermost circle of friends and family will endure.
Joan Halifax writes about different archetypes that caregivers can fall into. I think I went through all of them: the Hero, the Martyr, the Parent, the Expert, the Priest. What I wanted to be was the Daughter. I played that one out, too. The Bratty Daughter, the Helpful Daughter, the Helpful Daughter Resisting Being Helpful, the Daughter Who Wants to be Helpful but Whose Mother Doesn’t Want Her Help, Even Though She Obviously Needs Her Help…
I wonder if we had actually named what I was doing and not doing, if that would have helped us, given us more clarity on our roles. But, we did what I suspect a lot of people in our situation do. We winged it. We tried to maintain our normal (if neurotic) modes of relating and then struggled with why they didn’t work anymore.
Was that acceptance or denial? Was that attachment or aversion?
Chronic illness reveals the nonduality of these pairs of concepts. Mom accepted her circumstances better than I think many people would have. Managing her pain required effort sometimes on a minute-by-minute basis for days a t a time. But she would NOT be defined by her pain or her illness, which required what many would say was a considerable amount of denial.
When her physical world became mostly limited to her home and back yard, and her relationships mostly limited to just the closest friends and family, she used her imagination to expand her world. She made the most of what she could experience in her garden, with her pets, on social media and through music and TV. She appreciated what she could see of the world outside: the daily sunset, bird and butterfly migrations and changing seasons from the perspective of her back yard.
And then, when that wasn’t enough any more, I also think she made up stuff. At first I would challenge her stories with anger and frustration. I remember visiting and her telling me she had gone to the opera.
“How is that possible!?! I talk to you every single day and you never mentioned going to the opera! How could you leave out that minor detail?”
Later there were other stories that I believed. I let myself believe that she had a music teacher and was taking cello and violin lessons at home. I let myself believe her vivid description of feeling the vibration of the strings throughout her whole body, how alive it made her feel. How different it was from the sound and feel of playing her piano, which she still did every day, although with less dexterity as arthritis made the fingering more difficult and painful. I let myself believe that the birds were so familiar with her as a part of their environment that they sometimes landed on her outstretched arm.
Now, what you really need to understand is that I actually DID believe these things. It has only been in the years since her death that I have questioned them. The years of her illness were horrible, but also magical. She figured out what she needed to do to endure, and I accepted the parameters she defined. She lived, and later died, on HER terms, in the reality of her making. That’s not really all that different from what we do every day in full health. I think about that a lot.