I wish I could sit for a full tea with both my parents. Of course it would be a full, high tea at the Ritz Hotel on Fifth Ave in New York. It would be replete with little sandwiches that have no crusts, pot after pot of hot black tea that, now, I can no longer drink because of the caffeine. On the table would be small crumpets with jam and crème fraîche. The little pieces of fluffy crumbs the waiter would whisk away with a small table brush and pan of silver, before the little cookies and shortbread came to round out the meal. My thoughts rambled on at the picture. Again, I would explain to them about chronic migraine disease. The chronic, intractable pain that kept me in bed some 15-20 days a month. The endless rounds of appointments with migraine specialists and pain doctors, filling out forms over and over with the same information until my head hurt just to think of it. The prescribed medications costing me out-of-pocket upwards of $20,000.00 per year.
After losing my interior design business to the 1991 real estate crash in New York, I had difficulty settling into another job. My inability to continue taking a pile of pills so I was able to stand up and work 18 hour days had taken its toll. After 25 years, my body was starting to rebel, and I had to regroup. Who knew the regrouping would take over my life? Who knew then that I had an incurable disease that was genetically acquired? My parents adopted me, and had no medical history from my birth parents as proscribed by New York State Law.
I often think of my Mother who died 9 years ago from multiple myeloma, a slow-moving cancer that my Mom fought valiantly, knowing she would lose eventually. She did not want to give up a second, and made the rest of us, (when I say “us” I mean me,) miserable. My Dad died 8 years earlier, also from cancer. In some ways his passing was much more difficult than my Mother’s. As in life, he had trouble communicating, and the last couple of weeks he spent thrashing in bed, arms waving, mumbling to himself. I tried to talk to him, but never got any clear responses. He died at home, with my Mother and I keeping a watchful eye at the end. My Mom was the main caregiver of his illness. She was angry about it. Perhaps the reminders of caring for her own mother for 3 years at age 18, having to leave college to do so, she wanted no part of caregiving ever again. As a social worker with all her knowledge of hospice care, helping her husband of 56 years go through his last days was not easy for her. I was present only during the last week of his life. He was a private person, and remained so unto death.
Not so my Mother. Everything she did was very public and out-loud. She had wrongs to right and was as outspoken a person as one could be. Embarrassing to me as I was growing up to have such a forward and vocal parent, I came to admire her fearlessness in the face of all the causes she put her energy towards: aiding the socially disenfranchised, the elderly, or any others she thought might need her help. After retirement, she kept up her social work first as a volunteer, and later paid, unable to keep her hands out of anything she thought needed fixing. There was a lot she thought needed fixing.
Both my parents were highly intelligent, community minded, lifelong learners, left-wing liberals. They appeared to their friends and colleagues as paragons of open thinking, clear-headed reason and logic. My Dad was had a BS and MS in Chemistry, and later an Ed.D in education. One would never know he was the first of 12 children in his family to go to college. My Mom had a BA and MS in Social Work. If she had been born 30 years later, I think she would have been happier.
Curiously, their piercing investigations and thinking did not ever extend to their own family. I was a complete mystery to them all my life. I was tall (5’-10”) to their 5’-5” and 5’-6” respectively. In family pictures I was a full head over both of them. During those awkward teenage years I looked like an alien from another planet next to them. Somehow they meshed. No matter how hard I tried to fit, I never did. I was an artist with an artist’s brain. I was smart, but could not compete with their left-brained brilliance. My interests lay elsewhere. I excelled at everything I tried, except the things they did with ease – in math and science. I wanted to write, play music, draw, and paint, and spent long hours doing portraits of everyone I knew. That they both looked at my work, and wondered aloud why I was spending my time doing something no one wanted. My endeavors were met with disdain, and subtle suggestions that I do things they understood. It was not in my nature, as it was not in theirs to see or value what I did.
My first migraine began with a year and a half long headache. It felt like a triangular spike of white, hot metal jabbing up the back of my head on the left side, causing me to double over from the pain, and close my eyes, unable to stand. I was 19. I had a brain scan which showed nothing. My Mother, never having had a headache, was at a loss. My psychiatrist – I was at home after attending 2 colleges, a deep depression setting in which took several years to lift – gave me Elavil, the first of many medications to follow. It did nothing for the “headache” except make me sleepy. My gynecologist gave me Darvon for my period cramps, so I extended their use to help control the head pain. Doctors were much more liberal about opiates then, and I would get 60 at a time and use them as I needed. After the Darvon stopped working, I was given Percodan, and that really got to the spear in my head. Two would knock it out. I could work, and went back to college.
My Dad had fixed opinions and once made, were impossible to change. I did not drink any alcohol, knowing it would trigger the “headache” now diagnosed as “chronic migraine disease” which send me to a dark, noiseless room, with medications and ice. All his life my Dad thought I was an alcoholic, recovering or otherwise, and my refusal to accept wine or a cocktail to him, was proof of my “AA” status no matter what I said to the contrary. My Mother was equally flummoxed. She had never had even a headache. If she had not experienced something directly, it did not exist in her world, black and white, right and wrong, good and bad.
My mother contracted shingles some 3 years before she died. She was left with post-herpetic neuralgia that left her in constant pain on her right side and back. One phone conversation she asked me in the voice of a small child, so quiet and gingerly, it took me by surprise.
“Is this constant pain similar to the head pain you have all the time?” I was silent for a few moments, not sure of what I had just heard.
“Yes. They are migraines, Mom.” Another moment passed. “Migraines are a disease with no cure. There is nothing I can do except manage the pain, just like we are trying to do with your pain.”
“I thought you were making it up all these years. I could not imagine pain like you described. I am so sorry I could not hear you through my own preconceptions.”
“Thanks Mom. I appreciate your telling me.” My imagined tea had been a success, not by my own efforts but by hers. I am ever grateful she had the courage to admit her feelings to me. With that as a pillar to connect us, my Mother and I gradually started to heal all the pieces of my childhood that kept us apart.
My longed for tea with my Dad never became a reality. There was too much to overcome, and time and distance kept things unsaid. It remains a wish unfulfilled. I don’t know if he would have heard me over the din of dishes, conversation and clinking china. I would liked to have tried.