Candy and Judy took pictures of their brother. After a while they took him back to his room and the dog back to the house, got on their different airplanes and flew back to their jobs. The next day, I arrived.
Something made me not unpack. Something made me go to the hospital first. So I arrived there at about 10 in the morning, my bags lying in the corner, and stayed for lunch. Mace [Mark's partner] and I talked about what the weekend had been like, how Mark was feeling. I kept putting off going to my hotel room. Finally, I said to Mace, "I think I'll wait until Mark's had dinner."
So they brought in his dinner: Thai chicken. I've only eaten that dish once since then. Mark was in the bed and Mace was sitting watching television, and I fed Mark, just as I did when he was a baby.
I cut up the chicken and gave him a piece as he rolled over toward me--he still had a good appetite--and he ate it. And he had his favorite drink, Mountain Dew, with one of those crooked straws you can bend. He had a bite and then a sip. And he rested a minute in between.
At one point, he leaned toward me, and I leaned toward him. He went into a fetal position, and his body began to shake, and he spewed blood from his mouth and convulsed, his eyes rolling back in his head. I screamed, and Mace called for help. They coded it and the cart came, and it was just like television.
I have this memory of bells clanging, but I probably imagined that.
They came in, around six of them, all around a cart, telling me to move out of the way, and they put up a sign on the wall that said KEEP BACK! DANGER OF CONVULSIONS. They strapped him down, they confined him, and they jabbed him full of medicine.
I found myself at Mark's feet--remember, he was 6 feet 7 inches tall--and I had his feet in my hands and I was rubbing them. I heard myself singing. I heard my voice singing this song--the song I sang to all of my children.
Rock-a-bye and don't you cry,
Rock-a-bye, little Mark.
I'll buy you a pretty gold horse
To ride all around your pasture
I rubbed his feet and sang this baby song. All of a sudden, I realized, as we do at times like this, the irony and ridiculousness of my singing that song when my son was in his death throes. And I stopped because it wasn't appropriate, and I stepped back.
One of the nurses at Mark's head looked up at me and shouted, "Keep singing!"
So I went back to singing and rubbing his feet. I realized later you don't know what a patient in that condition can hear, and if there was any chance that I comforted him, it was worth doing.
Mark was never the same after that. He talked for the whole evening--and as fast as he could. I could understand the words, but they didn't make sense. He just strung names and words together like mismatched beads on a string that had no end. We would sometimes catch a phrase, but we wouldn't know what he meant. Mace and I just stood there rubbing Mark's hands, saying, "Rest Mark."
The next day, one of the doctors came in and called us into the hall. "He's not going to last past this afternoon," he said. ...
... I went back to Mark's room at about quarter to 10. And that's when the nurse took Mark's vitals. I saw tears running down her cheeks when she looked up at me and nodded.
My first impression of Eloise was that she was pretty and well put together. I could easily see her entertaining important guests at a reception, as she looked like the classic hostess. She knew how to put people at ease, and she did that with me. Eloise was immediately kind and generous of spirit. She seemed to genuinely care about my very recent and raw loss. I felt that she, more than anyone else, understood. She had walked on the same path. ...
... One day while we poured over plates of slippery linguine, Eloise pulled a newspaper clipping out of her purse. ...
She handed me a copy of the newspaper dated June 2, 1995. The editorial read, in part: The senator implies that because HIV is spread through risky behavior, AIDS sufferers deserve their fate. ... But to suggest that AIDS victims have it coming and should be punished with medical neglect is no more acceptable than to begrudge a heart bypass for, say, a 70-year-old senator who spent years smoking tobacco and eating barbecue.
I can still recall the disbelief I felt, how I thought there must have been a mistake. But Eloise sat there knowingly, and so did later stories from the newspaper, dated July 1995, chronicling Helms's fight to restrict the Ryan White Care Act.
WASHINGTON--Sen. Jesse Helms, in a biting speech aimed at "the homosexual lobby," vowed Friday to fight a bill that funds medical treatment for AIDS victims. During debate on the Senate floor, Helms reaffirmed controversial comments he made about homosexuality last month.
"Sure, I said it was a filthy, disgusting practice," Helms said. "I said it, I meant it, and I repeat it today."
In another story, dated July 27, Helms said: "I hate to use the word 'gay' in connection with sodomy. There is nothing gay about these people. 'Gay' used to be a beautiful word, but it has been corrupted by these people." ...
... I didn't know how I could write to a powerful senator. What would a man like Jesse Helms care what I thought? But, I went home and wrote the letter on yellow legal paper. And I cried as I did it, thinking, Who do I think I am?
I am Mark's mother, I told myself. And I will stand up for him.
June 5, 1995
Senator Jesse Helms
When my husband (and your strong friend) Harry Clarke died in a plane crash at the Asheville airport on March 9, 1987, you called me in the night. You told me of your sorrow at our loss and of what Harry had meant to you as a friend. You placed your praise for him and his principles in the Congressional Record. You sent me the flag flown over the Capitol in his memory. You did all of these things and I am grateful.
Harry and I had a son, Mark who was almost the image of his father, though much taller. He was blessed with great charm and intelligence, and we loved him. He was gay. On March 9, 1994, exactly seven years to the day that his father died, Mark followed him--a victim of AIDS. I sat by his bed, held his dear hand and sang through that long, last night the baby song that I had sung to all our children: "Rock-a-bye and don't you cry, rock-a-bye little Mark. ..."
A few days before he died, Mark said these words: "This disease is not beating me. When I draw my last breath I will have defeated this disease--and I will be free." I watched him take his last breath and claim his freedom. He was 31.
As I write these words, I relive the most difficult time of my life. The tears will smudge this if I don't take care. No matter, I will type it so it is legible. My reason for writing to you is not to plead for funds, although I'd like to ask your support for AIDS research; it is not to accept a lifestyle which is abhorrent to you; it is rather to ask you not to pass judgment on other human beings as "deserving what they get." No one deserves that. AIDS is not a disgrace, it is a TRAGEDY. Nor is homosexuality a disgrace; we so-called normal people make it a tragedy because of our own lack of understanding.
Mark gave me a great gift. A quote returns to me from long-ago forensic days: "I have no lamp to light my feet save the lamp of experience." I think Patrick Henry said it. Mark's life and death have illuminated my own, and I am grateful for him.
So that's what this letter is about, and I hope I have written it well. I wish you had known Mark. His life was so much more eloquent than any words I might put on paper. I ask you to share his memory with me in compassion.
Patsy M. Clarke
I felt a sense of relief. I had done the best I knew how. I had not asked for too much--just compassion. And I had not turned my back on my son's memory.
Two weeks later the answer came, and I tore the letter open. Surely Jesse was the man I believed him to be. He was going to say he understood, that he was sorry.
I couldn't have been more wrong.
June 19, 1995
I hope you will forgive my first-naming you. Having known Harry as I did and having read your poignant letter, I don't feel like being formal in this response.
I know that Mark's death was devastating to you. As for homosexuality, the Bible judges it, I do not. I do take the position that there must be some reasonableness in allocation of federal funds for research, treatment, etc. There is no justification for AIDS funding far exceeding that for other killer diseases such as cancer, heart trouble, etc.
And, by the way, the news media have engaged in their usual careless selves by reporting that I am "holding up" the authorizing legislation that includes AIDS funding. One of the homosexual activists sent out a totally erroneous press release (and he knew what he was saying was not true) hoping to cause me problems. He failed. I did file a "notify" request because I have two or three amendments that I intend to offer to restore balance to the spending of the taxpayers' money for research and treatment of various diseases.
I understand the militant homosexuals and they understand me. They climbed onto the roof of Dot's and my home and hoisted a giant canvas condom.
As for Mark, I wish he had not played Russian roulette with his sexual activity. He obviously had a very great deal to offer to the uplifting of his generation. He did not live to do all of the wonderful things that he might otherwise have done.
I have sympathy for him--and for you. But there is no escaping the reality of what happened.
I wish you well always.
I cried. I walked the floor. I agonized for two or three days, and then I got mad.
What made me the angriest was that Jesse didn't understand what I had written. All he talked about in that letter was the fact that "the militant homosexuals ... had hoisted a giant canvas condom" on his house.
I had nothing to do with that. My letter had nothing to do with that. He missed the point entirely. The greatest thing that could have happened would have been for Jesse to be like Paul on the road to Damascus, and have one of those "Ah-ha!" moments. He doesn't realize how he has made so many people suffer.
The only thing that would have made me feel better is if Jesse had retracted his statement about AIDS patients deserving what they get, if he'd stated that he really didn't mean it that way. But he never denied it or acknowledged it. He ignored it.