[Note to readers of Chronic Healing: Over the course of the last five years I have needed to have regular I.V. infusions to keep my disease under control. I've kept notes throughout. In the next months of 2012, I will share this series with you. This is the first one. The room at the hospital is called Infusion Therapy Room. Thank you. AB]
The day wore on in silence and solitude. The only distractions were the images and ideas that played across my brain's white screen of blankness. I imagined a life where I was just as sick but one in which I belonged to a family. I dreamt I had two children. I fantasized an attentive and caring spouse or companion who was part of the team and in the room with me. These fantasies and dreams were seemingly involuntary but were destructive nonetheless. I summoned strength and forbid myself to engage in them. In the worst passages I tried mightily to console myself. It was an action stemming from pride of independence.
Mostly it was independence fueled by considerable terror that the forces of Adult Protective Services might be a step away from my door -- if word got out I was losing it. The week before I haltingly approached the Infusion Room for the Solu-Medrol infusion. I could barely see where I was going. A nurse I did not know stopped me in the hall and asked where I was going. "I'm going into the Infusion Room."
"Are you alone? Did you come here alone? Does anyone take care of you at home? Who is your doctor?" It was a barrage of inquiries. They were intelligent and important questions to ask, but I wasn't about to answer. The omnipresent words Adult Protective Services flashed through my mind, and this time appeared in neon letters -- ten feet high. At that moment, a nurse from Infusion came out, put her arm around me, and said to the other nurse, "No worries, she belongs to us. Come along Alida, let's get your meds going." I did belong to the Infusion Room and those nurses. I was relieved and grateful to claim them as a family of choice.
I've listened to women in Infusion make calls to husbands or companions or children to tell them when they will be finished. Some are fortunate because they are in families that understand how much we need quiet and sheltering care when we emerge. There are other women who must call home to make sure dinner plans have been made for their families. The woman next to me said into the phone, "So, then, everything's on target. Right? Did you see my note about when to put the potato dish in the oven?" She followed that question with a long and detailed description of what her husband would and would not eat and what and when to put something into the oven especially for his evening meal.
For a brief passage I tossed away the dream of being nurtured. I would be that woman and not one with dinner awaiting me -- or a freshly brewed pot of tea brought into the bedroom. I know this with certainty because that's the kind of sick woman I was when I wasn't doing everything alone. And, if I had become a mother, I would be the woman instructing the children, the husband, anyone available how and when to put the food in the oven -- that I had prepared before I hit the Infusion Room. I would rather not be living the way I do, but neither do I want to be one of the women who is ill and doing everything for the family and pretending that it's easy.
Nothing about chronic illness is good for us or beneficial to family life or relationships. It takes a special sort of family and/or companion to roll along with us, and not tire themselves caring for us. And they must learn not to expect us to pretend we can do it all and then find we get even sicker trying, because we can't do it all for our families. And, of course, we don't manage competently when we're alone in the muddle of disease either. None of it is simple or desirable. Nobody votes for a life with chronic disease as a constant presence.
Sitting directly across from me was a younger woman. She was being infused with the drug I needed urgently. She told me about what to expect when and if my insurance carrier finally approved my doctor's request. "Don't believe it when they say this stuff is a snap to endure. It's not Cytoxan but it's no picnic."
I asked, "But does it work for you?"
"Oh yes, it has worked since the trials. It changed my life."
She was in her 30s with plenty of life ahead to enjoy the expanded parameters made possible by a chemical remission of disease. She was curious about why I hadn't been in one of the trials. It was too complicated to explain I'm missing a crucial antibody that would have enabled consideration, if I had been eligible at all -- if I would have consented -- if my doctor had permitted my participation. Instead I said that I had to travel for work and was away too much of the time. I was grateful that she had no idea who I was. I don't know if she went through the trials in New York, or elsewhere. What was relevant was watching her interact with a daughter too young to come into the Infusion Room to sit with her mother. I learned there was an age requirement, which I didn't know about until that afternoon. Every few minutes the young girl came to the door to see how her mother was doing. The mother told me the worst thing about the disease was how much it scared her daughter.
Assuming I once had young children she asked, "Were you already sick when your kids were young?"
"I've been sick most of life, but I never had any children. In some ways I'm living your life in reverse. I was the sick child frightening the wits out of my mother."
We both laughed but it was only a device employed to guard against tears.
We agreed it could be worse. We had seen evidence of it, when both mother and child are sick with the same or related autoimmune disorders.
I took a break from the I.V. and ventured to the women's room. I saw the little girl seated at a long hospital-issue table in the hallway. She was working with crayons and paper. I recognized the outlines of her activity; she was making things for her mother - Mommy Please Get Well pictures. As a sick child of a physically well but emotionally fragile mother, I carried a heavy weight with me throughout my younger years. I tried to piece together what I (what the disease) would have done to a child's emotional well-being, if I had been a mother. I only know the horrific toll it took on my mother. I speculate often if I had given birth to a child, a girl, would it be into a life with my same autoimmune disease or another one, even worse? No matter how many times I convince myself the mother-daughter dilemma is part of my past, it comes back and socks me in the gut.
When I walked out of the women's room, the little girl waved to me. I waved back. "Your mother is doing very well. I'm sitting across from her." She smiled widely. "I know. She always does." She was too brave for her years. Her mother was too brave for her years. -- As for me? Well, I'm damn tired of being brave after all these years. These diseases stink!
My mother drifts in and out of my awareness. Born before the Titanic sank, before both world wars, and before women got the vote, she then had an unexpected and unplanned pregnancy. She gave birth to me in her 40s when her vocabulary of loss was already overloaded. I saw how much my illness took out of her. I watched it take her down to the deepest part of her private misery, inside the unquiet memory of the death of her first child, a son. He died before my birth, when he was about 7 years old. It must have been sheer hell for her to watch me cycle rapidly through changing phases of disease. She hung on until 101 probably still waiting for me to get better. I understand her now in ways that I couldn't then, and even more since I wrote a book with my doctor.
I've met many mothers of many daughters - all under siege from these vicious autoimmune monsters. I've met mothers without my mother's history of losing a child, but in just as much anguish. I've talked to women my own age, and younger who confessed, in shame or with guilt, that they were drinking too much or using sedatives - using some form of drug, prescribed or self-medicating, to get through because they felt powerless to heal their daughters. I've talked to mothers consumed by anxiety and few all but manic trying to do something, or make something change for their daughters. There are mothers who keep meticulous records of every treatment tried and failed, every test, carefully noted in ring binders. Often they want to show them to me.
They blame themselves; I see it in their eyes. I tell them "No, it's not about you - you aren't doing anything wrong." One night I met a woman right before I gave a talk at a national Lupus meeting. She rushed over to tell me about her daughter, who was then in a serious flare and hospitalized. "All my fault, you know, I am an older mother." What could I say? If I said, it's not your fault, and by the way, I was the daughter of an older mother, I would simply have confirmed her misplaced guilt. Other mothers confide in me they are on their computers for hours, even days, in self-defined obsessive searches through the unfiltered Internet looking for research or answers as if Internet searches were the Holy Grail.
I've met different versions of my mother in a variety of cities. I'm weakened by what I've witnessed and forgiving of all the mothers and of my own. I am compassionate and accepting of her outbursts against me, which were against the disease. I know why she had an increasing distrust of medicine and an enraged sense of powerlessness. I feel emptiness because of all we never achieved as mother and daughter because of my illness. I am sorry I was at the root of so much of her pain. A portion of my psyche is thankful I will never make a young woman or an adult woman (a daughter) as worried, concerned, fitful about me as I was about her. Yet there is this gaping hole in my heart called: Motherhood. -- Never filled and never satisfied. -- Instead, I've been present in the lives of the daughters of other women, my friends, and young women I've met.
More recently I've diverted my attention to the mothers, and not as much to emotional surrogate forms of experiencing motherhood. I feel a bond, a strange kinship to these women who are mothers of girls like I was. I understand their daughters in some ways perhaps better than they do, at least with regard to living as a chronically ill girl, teenager, young woman. And despite the fact that motherhood eluded me, I am also connected to the mothers who must balance their already complex lives with the relentless presence of chronic disease. Mother-daughter-mother-daughter - the circle is never broken.
©Alida Brill 2011
Alida Brill is an award-winning author and advocate for girls and women. Her most recent book is Dancing at the River's Edge: A Patient and her Doctor Negotiate Life with Chronic Illness. It is a dual memoir written with her longtime physician Michael D. Lockshin.