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!