I don’t remember the exact moment that I realized this was it. I don’t know what made this different than all of the other times that my mom got sick. I guess her AIDS was progressing and her blood counts were way too low and so this was just how it was all finally going to end. How our life together…her life…was going to end. After waiting for years (I mean my whole life) for this, it seemed to sneak up on us. It wasn’t a huge monumental moment, just a slow devastating crawl to goodbye.
In those final weeks though, I was determined to make my mom’s life my sole focus. The first boy that I ever fell in love with was away at Military Training and I hadn’t seen him in months. I was supposed to go visit him, but I cancelled the trip. I needed him, but I needed my mom more.
I stopped going to school entirely even though it was the week of midterms my junior year of high school. I only hung out with my friends if they came to me.
This was all new. I was my mom’s primary caregiver, but she wasn’t in constant need of my care. So while her illness had impacted my school attendance and social time, it hadn’t claimed it so completely like this before.
“Mom, You are hungry. Please, eat this toast I made.”
*Mom responds by side-eyeing the toast and then swatting it out of my hands, sending it crashing to the floor.
“Oooookaaayyy…well, mom, you have to eat something! Please! How about a milkshake?”
*Mom doesn’t say anything but a small smile plays at the corners of her lips.
I go to the kitchen and thank god the social worker from the Rural AIDS Alliance was here last week and brought us two whole cases of Vanilla Ensure smoothie drinks to help fatten my mom up. She had always been thin, but now she was disappearing from wasting syndrome.
A few days later we meet our first Hospice Nurse. She asks me how my mom’s appetite has been..
“Well, she isn’t that hungry, but I do get her to eat smoothies sometimes…”
“Has she had anything else to eat?”
I think she is going to yell at me. To realize I am an inadequate caregiver for my mom. I have to prove myself worthy of this job so that they don’t hospitalize her again. I promised her that I would make sure that she died at home.
I am starting to panic when the nurse gives me a sad smile and says, “Its ok, hunny. It’s great that she is eating those smoothies. You don’t need to try to force her to eat anything else.”
I am relieved, but it’s a bittersweet sentiment because the reason that I don’t have to force her to eat anything else is that we know it won’t matter what she eats. This is the end.
When the hospice nurse leaves, my mom and I chat for a little while. She is still speaking a little although she tires easily. In the final days, she doesn’t speak at all.
“Mama, how are you feeling?”
We don’t have television so we just sit together and talk. Mostly I do. I let myself tell her all of the things that I have never told her. Well, not all of them. But I tell her about Tom. His ashes are still at the funeral home because we couldn’t afford to pay for them or have them buried. She wants to be buried with him and I don’t ask her to change her mind, even after I tell her about how he hurt me. I worry that this is too much for her to hear in this vulnerable state, but she is my mom and I want her to know. I don’t want her going to the afterlife still thinking he was our rescuer.
“Will you read from the bible for me?”
My mom can’t read so this is a normal request. Plus, the bible is the only book that we own. I read to her into the afternoon. Until a knock at the door lets us know school is out. Friend time.
“Ms. Arnett! Hey Crystal! How are you two?” My buddies all cram into our apartment, my mom gives me her blessing to go into my room for a little break while she closes her eyes. We close the door behind us and my friends look at me with their faces flashing with shame, grief, fear, shock…confusion. They have only had a week to adjust to the idea that my mom is dying of AIDS. I kept her secret for as long as I could but when we knew that this was it, I felt that I had done my part and that now I needed to open up. I needed to give people a chance to love her for her and say goodbye. I didn’t want her to die thinking that everyone who loved her would stop once they knew the truth. I had to give the people that we loved the chance to be the loving people I knew them to be.
And they were. For the first time in our lives, in those final weeks, people stopped by with cookies, soup, casserole. They hugged us and told us they loved us. They hugged her. I will never forget my upstairs neighbor coming by to say goodbye. I could see that he was holding tears back. He was a single dad and a sweet man. I used to listen to him singing to his baby girl and sit in awe of his love and care. I had not witnessed those attributes in many men. My mom was in a hospital bed set up in our living room. She never wore her false teeth anymore and her hair was matted to her face. She smelled bad. I was doing the best I could but giving her a shower at the end was too dangerous, after she kept having so many falls. Still, he lovingly placed his sweet little toddler right on the bed next to my mom so that they could have one more snuggle. My mom had been his main babysitter since he was a single dad and needed to work during the days. In that moment that this cis, hetero, small town man placed his child in the arms of my dying mom’s arms, I knew it was the right thing to be honest about her HIV status. Maybe it was right to keep it a secret, maybe it wasn’t, but it was right to tell people at the end. They came through.
Back to that day in my room with my friends gathered around. Someone pulled out a flask. They handed it to me while wrapping their free arm around my neck. There wasn’t much to say. So, my friends offered me the comfort that we had been turning to since we became teenagers. We passed the drink around and finally we started to talk. I started to leak out the things that I was thinking about. Worrying about. I wanted my mom to be comfortable. I wanted to take away her pain.
“Let’s get her high…”
A look from me. “I have been begging my mom to smoke pot for years! Just to help her stop throwing up and relax. You know my mom! She won’t do that! She is a good christian lady.”
But after a lot of talking, we decided maybe she would feel different about it now. My mom didn’t know that I smoked even though I had been asking her to try it. She was a combination of in denial and very nieve. But I was willing to come clean to her about my drug habits if she would just TRY IT and feel BETTER! But of course she wouldn’t.
Some of my friends left. They had to go home to their dinners with their not dying families. But one of my friends stuck around. He had the flask in his shirt. Do you want to have a drink with us Ms. Arnett? Just one. Just this once? We think it will help you feel better.
And with my jaw falling off my face, my mom accepted. So my friend poured some into a cup for her with some ice and there we were sipping on our alcohol with my mom. It was weird but also really nice. After my friend left. My mom came out with another surprise for me. “Crystal, will you play that Tom Petty CD you got for your birthday? “Ya, mama. That sounds nice.” So, I took out the Cd that was in there, a book on tape of the bible, and put in the Tom Petty.
My mom sat up. She didn’t do that too often but maybe the liquor was making her feel loose and strong. She started to sing the words. I joined in and soon we were belting out the lyrics with tears streaming down our faces. I crawled into bed with her and we held and rocked and sang that damn Tom Petty Cd all the way through. It is one of my favorite memories of my entire life.
There is more I could tell you about these final weeks. But I didn’t sit down today to tell you about my pain. I wanted to tell you something good about my mama. Something joyful and loving and true. So, I want to leave you with this image of my mom and I wrapped in each others arms singing cheesy lyrics and crying together. There will be time to talk about the death later.
“She’s a good girl, loves her mama
Loves Jesus and America too
She’s a good girl, who’s crazy ’bout Elvis
Loves horses and her boyfriend too
“Now I’m free
Yeah, I’m free
– Tom Petty
I was born in the 80’s in rural Pennsylvania. Both of my parents and my step-parents were HIV+. I need to share these stories that history would like us to forget. We weren’t allowed to speak about it while it was happening, so I will speak it now. Loudly and Truthfully. Thank you for hearing my stories and the stories of my parents lost to AIDS. I currently live with my partner and our three children in Portland, ME.
Written for the From Darkness to Light event. If you’d like to be a part of the challenge, find more information Here. But first, leave a comment and let Crystal know what you think about her words, and be sure to visit her over at Redneck, AIDS Orphan, Survivor when you’re done.