One Mother's Story
The first call came on a Wednesday night, about 10:30 New York time, in May of 1990. It came from Gretchen, my daughter-in-law of almost a year. She told me that her husband, my 24-year-old son Joseph, was in a hospital in Long Beach, California. When I asked what was wrong, Gretchen replied: "His doctor says he has AIDS."
Not HIV -- full-blown AIDS. As we would come to appreciate, Joseph had been sick for some time. Finally, he got sick enough that Gretchen took him to the emergency room of a hospital near their new home in Long Beach, where the attending physician who examined him thought Joseph might have a bad cold, or maybe bronchitis. It could even be pneumonia, the doctor ventured. But it was not until Joseph passed out on the floor of the emergency room that anyone thought to order a bronchoscopy.
That test showed that Joseph had pneumocystis pneumonia -- which, as his doctor thoughtfully pointed out, even before any other test results were back, "is always AIDS-related." The reason it had taken the hospital staff so long to make the diagnosis, we were told, is that Joseph was married, did not appear to be gay, and did not seem to be an IV-drug user. Who would have thought?
Who indeed? Not his wife, certainly. Not his mother. And not Joseph himself. Later we remembered the blood transfusion that Joseph had received, many years earlier, when he hemorrhaged during a routine tonsillectomy, but at the time we could think of no act or event that would have put him at risk of HIV infection. To me, the whole idea of AIDS was unfathomable, unbelievable, unacceptable. I was so sure that Joseph had been misdiagnosed that I told Gretchen to have the doctor call me as soon as he could. I needed confirmation from him that this implausible, impossible news was actually true.
While I waited for his call, I swung into action. I called United Airlines, explained my situation, and got them to give me a seat on the first flight out the following morning. I called my boss, who told me to take as much time off as I needed, and who arranged for a car service to take me to the airport the following morning. And then I began calling my friends, beginning with the ones I thought would be best able to help me understand what Joseph, Gretchen, and I were facing. By the time the doctor called, I had already begun to accept the fact that the unthinkable had somehow happened.
I arrived at my son's bedside less than 15 hours after I got Gretchen's call. I had last seen the two of them nine months before, on their wedding day. On that occasion Joseph was a robust 250 pounds, and we had jokingly referred to him as "Bear." The man lying in that hospital bed was no bear. In the intervening months he had lost 75 pounds, as the unchecked infection ate him from inside. He was gaunt and gray; he was sweating profusely; he had tubes in his arms, his nose, his mouth, his penis. Nutrients, oxygen, and medications flowing in; wastes flowing out -- a great humming, sucking apparatus, keeping him alive.
I did what a mother does in such circumstances: I climbed into his bed, gathered him in my arms, and told him it wasn't time yet: the army had arrived, and the fight had just begun.
By that night Joseph was breathing on his own, but Joseph's doctor told me the future did not look promising and he urged me to let everyone who was important in my son's life know about his situation. The doctor asked me what it was that Joseph wanted most in life, and when I said "a family" he left the room in tears.
Over the next few days I got a crash course in living with AIDS -- which is very different from living with HIV. But mostly I waited for Joseph to recover his health and his willpower. He had been a stubborn little boy, and now I desperately wanted to engage that stubborn streak of his. I had to make him believe that if he dug his heels in, if he resisted being pulled down, physically and emotionally, he could live with AIDS. I believed then -- as I do now -- that if we can keep our PWAs alive in spirit, we've got half the battle won. The rest is up to the healthcare profession.
When Joseph went home, I went with him. I cooked, and he ate. I shopped and cleaned. I helped Gretchen finish unpacking the crates and boxes that were left over from their recent move. And at the end of three weeks I discovered, much to my surprise, that there was not much more I could do. It was time for me to go home.
The next two years were marked by successive bouts of encephalitis, pancreatitis, and a host of other-itises that I'd never heard of. Like so many other AIDS patients at that time, Joseph tried a succession of drugs, alone and in combination. Some seemed to help, at least for a while. Others hurt, causing nausea, fevers, and diarrhea.
In retrospect, the worst of Joseph's problems during those years was his severe peripheral neuropathy, which at times made every step an agony, kept him virtually bedridden, and left him dependent on painkillers. But neuropathy wasn't his only problem: there was also dementia, and black depression, and blacker anger. Bad as things were in that regard, they got worse when we learned that Gretchen was HIV-positive.
The second call came on a Tuesday afternoon, about 4:00 New York time, in December of 1992. This time the call did not come from Gretchen, who by that time had divorced Joseph. It came from one of my son's doctors, who told me that a bronchoscopy had just confirmed that Joseph had PCP again. In 1992, very few people survived a second bout of pneumocystis -- but somehow Joseph did.
Once again I made arrangements for an extended stay in Long Beach. I was there to help him get back on his feet -- and this time that was literally true, because when Joseph came home from his three-week hospital stay, he was so weak and his neuropathy was so bad that couldn't walk. So we got a walker, and a shower chair, and a potty chair. We also got a nurse, who came daily to administer Joseph's medications, and an aide, who changed the sheets after each sweat and spill, and who did countless loads of laundry.
First it was a urinal, bed-baths, and rubdowns. Next it was the walker to the bathroom, then a big step over the rim of the tub and onto the shower chair. (During this period I took a number of unscheduled mini-showers myself.) Then, finally, we took the walker outside. The first day we got no further than the end of the drive. The next day, we made it to the end of the neighbor's drive, and by the end of the week we could get around the entire block.
After a little more than three weeks, I had done what I could do; Joseph's new roommate and his primary care-providers would do the rest. Or so I thought. On the day before I was to leave for New York, Joseph asked me if there was any way that I could move to the West Coast. "I can't do this alone" is what he actually said. And he made it clear that he needed his Jewish mother around all the time, to make him potato latkes and chicken soup with matzo balls.
"You don't have to do it alone," I said. "I'll do it with you. That's what mothers are for." I flew back to New York as planned, but six weeks later I was back on the West Coast -- this time permanently. And from that moment AIDS, every aspect of it, became my full-time job. I was the one who investigated every new therapy, from supplemental oxygen to magnets, from investigational drugs to acupuncture.
Like everyone else in those days, we grasped for any new notion, any new potion, that promised to slow the relentless spread of HIV in Joseph's body. One of those "cures" was something called kombucha tea, which we fermented in the back of kitchen cabinets from a fungus that we grew ourselves. I came to believe so completely in the curative powers of this brew -- which did seem to improve Joseph's health and outlook -- that I began to give "kombucha classes" around the dining-room table on Sunday mornings for other PWAs and their care providers.
And then the magic of kombucha wore off, as the magic always does, and we moved on. I joined a group called Families Who Care (for People with AIDS). Its members share medical, financial, and social information with one another, but their real function is to sustain one another during the bad times -- to keep our PWAs alive in spirit.
Everything got easier when the protease inhibitors became available. On combination therapy, Joseph's CD4 count -- which had been in the single digits for more than two years -- rose to 373, and his viral load fell from more than half a million copies per cubic milliliter of blood to undetectably low levels. Joseph, once so weak that he had to be carried to the bathroom, began to look -- and feel -- like "Bear" again. And he let me know, in the nicest way possible, that my presence was actually cramping his style just a bit. So I moved out.
Joseph lives with his father now. But I live only a short distance away -- just in case. I still belong to Families Who Care, and I still research everything that comes down the pike. I heard about Crixivan before Joseph's doctor did. I'm the one who finds the clinical trials, and attends the meetings, and lines up all of the help that is available to people who are living with AIDS. And I wonder, from time to time, how people manage if they don't have a mother living nearby. Or a lover living with them. Or a best friend across town. In this war, everyone with HIV needs a private army.
Back to the December 1997 AIDS Care contents page.
This article was provided by San Francisco General Hospital. It is a part of the publication AIDS Care.