October 14, 2016
Each day starts the same. I wake up in pain; I take some medication. Without it, the pain progresses to agony levels. I have no appetite; there is nothing that entices me, but I know if I don't eat something I will feel worse, so I eat. I go back to bed and meditate, often for hours, and then fall back asleep. I wake up, and sometimes I have to go to the bathroom, and I am my own cheerleader: You can do it! Come on big girl, time for pee pee! I go to the bathroom. I go back to bed. I can do the computer for short periods before it is too painful. If I do too much, I have terrible episodes of spinning and puking.
I am alone in Los Angles to try and find out my latest prognosis. I miss my life in Mexico. I ache for my dogs, the friends that need no words, who make me laugh, crawl in bed with me and hug me. My neighbor Adela who lets herself in each morning with tea and kisses, she speaks no English; she speaks love. I keep trying to get my brother's dog to like me, but he is as indifferent as my brother who believes I bought this all on myself. There is only one thing left for me to do. I can love.
I can love my body. The fleshiness I despised most my life is now pure love and comfort. It is so enormous for me to know truly in my heart that I am the Goddess I have been talking about. It is one thing to know about the influence of thin, youth-based society and to defy it, but for so long the feelings were stuck between my head and heart; I am now truly free, free of self-hatred. My body is amazing. It is built to give and receive love and comfort.
I can love the fact that I have persevered for 26 years of pain. I can love my eyes that have seen so much and the way my face is changing, becoming interesting over the 56 years of my existence.
I can get upset when someone says things, such as that they don't believe AIDS exists, or I created my own suffering -- there is no illness; it is all in my head -- or I wouldn't be sick if I had chosen a different path. Have you tried blablabla? All said with no malice but still painful. Just in the few weeks since I have been in Los Angeles, I have been told these things. It is a form of sickness shaming. So, I love myself more and turn the spigot wide open and bathe in acceptance.
The doctors are helpful but over the course of 26 years I have spent 13 years on intravenous treatments, swallowed thousands of pills and given more samples of blood, bone and flesh than you can imagine. I've spent hours upon hours waiting in emergency rooms and doctor's offices. I have seen the best and sometimes the best is the worst. I have tried every diet, alternative treatment, affirmation and therapy. I have spent hours healing myself in meditation surrounded in golden light. I have surrendered. I have asked for help and received it. I do not want or need to be sick; I just am. This is the ride I am on.
I might go to the new doctors, and once again, they might say we don't know what is wrong, or we cannot fix it, and there will be more doctors, more forms, more samples, more tests. If I go there (the unknown future), I get panicky, so I call my friends. They talk me back off the ledge, and I go back to the only place I feel I can survive this kind of existence and that is love.
I have had an amazing life. I have met incredible people and had mind-blowing experiences. I have accomplished so much and survived the deepest levels of grief, loss and sadness. Even though I have had to spend a great deal of my life lying down, this makes it no less remarkable.
I have been broken and that is good because when the walls come tumbling down you have a second chance to experience even deeper forms of kindness, tenderness and love; it is my beautiful brokenness.
I wanted to share my experience with you so that you can better understand what it is like to have survived HIV/AIDS but to have physically paid a huge price. I don't need sympathy or advice. And if you are suffering, too, maybe this post can offer a little hope that unconditional love and compassion can alleviate misery.
To the many friends who have sent me emails and posted on Facebook and just loved me through all of this, thank you. You are my lifeline, you save me everyday. I read your responses over and over, think about you, our story, short or long, and soak in all the love you send me.
Not Dead In The Bed Yet Huston
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River Huston is an award-winning poet, journalist, performer and activist. She travels through the United States speaking on issues related to sexuality, communication, overcoming challenges and change. She has been featured on Good Morning America, Showtime, Nightline, CNN and ABC Up To The Minute. River has written three books of poetry as well as The Goddess: A Guide to Feminine Wisdom and A Positive Life: Portraits of Women Living With HIV. She wrote and performed a one-woman show, Sex, Cellulite and Large Farm Equipment: One Girls Guide to Living and Dying off off Broadway and is currently working on a second show, The Dominatrix Next Door. For more information about River you can go to riverhuston.com.
Subscribe to River's Blog:
Articles by River:
I Feel Good! Attaining Survival Through Illness (March/April 2008)
Goddess in a Muumuu: AIDS Changes Sexual Self-Image (December 1999)
A Positive Life: Portraits of Women Living With HIV (October 1999)
Interviews With River:
White Women and HIV (April 1999)
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