Living in the Impossible ...
By Rae Lewis-Thornton
August 15, 2012
This piece originally appeared in Rae's blog, Diva Living With AIDS.
Since I made that transition to AIDS in 1992 it seems like I've lived in the impossible. I can't remember a day since the months going into my official AIDS diagnosis that I've felt "normal." Even today with a T-cell count of 618 and a non-detectable viral load I have so much going on with my health that I feel like absolute shit. I've learned that the absolutes with AIDS tend to be dark to grey and that's not the best life to live in, but it's all I got.
My bestie Luke said it best in the "Diva," Documentary on me, there is never a day when I wake in the morning and feel good like everyone else. I have bad days every day, it's just the manner of degrees. For sure I only tend to complain when the bad becomes really intrusive. You would think after 20 years I would be used to it; this is the way of my life. But how does one get used to a darkness that never seems to fade? I'm not sure that you do.
Sometimes I wonder how I seem to live in the impossible. How I glide through life in spite of the life that I have. Resilience must be a gift from God. If I was left to my own mind, my own self I would have quit a long time ago. But I know that I know that my life is not my own, it belongs to God and with this information I seem to have this fortitude, this will to live in spite of the life before me.
People tell me often that they couldn't live with this disease and I say, "You really don't know what you are capable of until you are in it." In the 5 years before I made that transition to AIDS I used to pray often, "God don't let me get AIDS." It was a simple prayer that went unanswered and yet I continue to keep my faith and love God with all of my heart. So here I am muddling through yet again and trying to keep my wits about me. Trying to live with dignity inside of the impossible.
No matter what I'm facing in the morning I try to live in this life. I started to have nerve pain again right before I went to Blog Her, yet I walked those aisles in the exhibit hall learning everything I could to help bring brands to my blog for your benefit and mine. I had 12 hour days and had it not been for Luke I would have eaten McDonald's every night because that's the budget I had. But it didn't matter; I was making the sacrifice to grow. Then with jacked up travel back and very little sleep I went straight to work. Sending out emails, setting up my Mulu Shop and on and on! Read about my Mulu Shop Click Here...
So last night I surrendered to the reality that my body is in pain overload and pain has a way of making you crazy. So I started taking my medication to help with the nerve pain and now I'm adjusting to those side-effects, slow, groggy, drowsy; both in movement and in my thinking. I added 800 mg of Ibuprofen for my endometriosis, which has nothing to do with HIV. The one issue that I have that is not about HIV, but about being a woman. The endometriosis pain feels like someone is inside of my vagina, pulling down my ovaries, no joke.
So my nerve pain Neuropathy is HIV related. HIV causes it on one level and then we think the extreme case is because of herpes attacking my nervous system; which at the end of the day, is all an AIDS opportunistic infection (OI) . Remember AIDS is having no immune system, and not having an immune system causes a host of AIDS related infections. The doctor also told me that my LDL cholesterol was extremely high (also HIV related, most likely a side-effect of one on my HIV medications) so I added yet another pill to my daily regime.
Hypothetically, with a good T-Cell count one should not have any OI, but that's just not true. Magic Johnson said it best, "Everyone's HIV is different." It's true, how HIV will affect a person will vary. Think about me in terms of a long-term survivor, At one point my T-Cell was 8 and my Viral load was 400,000, for sure long term damage was done. Just because they can slow HIV down, doesn't mean they can reverse what has been done.
My Neuropathy, is typically joined by a mad outbreak of genital herpes that requires me to go on IV medication. Remember, I contracted genital herpes in college before HIV, but it didn't become a serious health issue until I made a transition to AIDS.
Thank God that hasn't happened, i.e., genital herpes. My last round of IV medication was 34 days and I thought that I was gonna lose my mind.
But I am having a herpes outbreak in the opening of my butt... Yes I said butt and yes it hurts like hell, but I'm grateful that Valtrex the oral medication does treat this strand for me.
How did I get herpes in the ass? I know some of you wanta ask? And I've removed the herpes blogs from the website and put them in my new book, The Politics of Respectability. Well, ummm, most likely because of improper wiping when I go to the bathroom. Herpes is a touch disease. If you touch an open sore in one area and touch another area of your body you can infect yourself there too. But don't make me lie cause it could have happened from unprotected sex too. I'm not sure... Yes I just said unprotected sex, yes there. Live as long as I have you just might experience anything. For real for real. At least I can be honest *shrugs*
So on one level, I understand that I had a lot of free will and how I used my free will, left me living in the impossible... I tell people every day on twitter make the best choices for your life because some shit you can't take back. Living with HIV is more than popping a pill once a day. This is some real shit, physically and emotionally and you will be forced to deal with them. That's for real... for real.
I also Tweet, at the end of the day I pray that what you think you know about your partner is true, otherwise you are turning your free will over to someone that can't think at the moment beyond your vagina.
Living in the impossible is not joke and no real solution beyond depending on a higher source for the fortitude that is necessary to keep your wits about you when you seem to be falling around you.
I'm also glad that I have some good people in my life. This morning I woke up to a zero balance in my PayPal account, which is my RLT Collection bracelet sales account, not to even mention my bank account and I said to Markeeda "this is the first time in a long time I haven't had a dime in my PayPal" and low and behold, she transferred a dime and then said, "stop crying."
And that dime became symbolic to me. I will keep it in there forever! I understand that life ain't what I want it to be. I understand that HIV/AIDS altered my destiny, but just like Markeeda gave me that dime, God gave me an Ace in the hole, a new destiny. In my brokenness God deposited a dime into my life; Purpose for my pain! And as long as I have purpose for my brokenness, I can live in this brokenness, that seems impossible.
Rae Lewis-Thornton Speaks
Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.
Rae is an active user of social media -- read "Long-Term HIV Survivor Discovers the Power of Twitter," an article on TheBody.com about Rae's social media activities.
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March 5, 2014 - Aging with HIV, Part Two: A Blog Entry by Rae Lewis-Thornton
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