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HIV/AIDS Blog Central

Some Days I Want to Give Up!

By Rae Lewis-Thornton

July 5, 2013

This piece originally appeared in Rae's blog, Diva Living With AIDS.

Some days I want to give the fuck up and that's some real talk right here. I've lived with HIV for 30 years and I've known my status for 27 of those years and this has been one fuckin' hard-ass journey and that's for real, for real. My pill load, the ups and down, the infections, the fatigue, the judgements, the doctors, the endless tests, the stigma, the side-effects from the medications, the trying to keep health insurance, trying to keep me alive, the growing old with a disease that's younger than me, all of this is enough to make you want to just stop!

Little Rae

Little Rae

On top of HIV/AIDS I've had to figure out my way in this world a lot sooner than I should have had too. As a child growing up, I had to try to out-think Mama to protect myself from her, which no child on this planet should have to do.

At the same time, I learned all this self-destructive behavior that I thought was normal because the abnormal was normal. Men who should have been protecting me instead violated me and that was a way of life. I've literally been putting food on my table since October of my senior year of high school.

I was 15 minutes late for my curfew and Mama told be to go back where the fuck I had come from. For real! The next day I called home and she said, "Come get your shit bitch!" And that was that. She was mad that her husband was mad and he left. In my assessment, he was mad because I was old enough now to protect myself, since Mama had clearly failed to do so the 5 years that we had been a family unit.

Then I had to learn what normal was and apply it to a life that was abnormal. Don't you know it's easier to do what you know over what's right. My life has been a fuckin' hard-ass mess. But I never quit even when I wanted too. I got 27 years of education with honors, I've worked tirelessly my entire adult life to help the human race live and have a better life. I never quit in all the madness I've been faced with.

The Politics of Respectability

Then I got Delta Sigma Theta Sorority, Inc. trying to tell me that I'm not good enough for them anymore after 12 years of service to them and a lifetime to the human race. Women are still gossiping about me, trying to explain to themselves and justify the rescinding of my honorary membership. Shit, they should give me a fuckin' crown for the shit I have overcome and achieved in spite of. If I'm not an example of a strong black woman, whose fidelity is stronger than her pain, then I don't know who the fuck is. Oh, I forgot, I curse and I'm vulgar and that's an embarrassment to Delta Sigma Theta.

(If you want to get up to date on the Delta drama, read my book, The Politics of Respectability. You can get it from Amazon, click here for paper and Kindle or you can order an autographed copy from my website.)

So here I am at 51 years of age still trying to keep my head above water. As of late, I've felt more overwhelmed and my crisis management skills have short circuited. I'm back on IV medication and this one is not a false alarm. For sure I'm having a herpes outbreak because the pain to my clit is almost unbearable; Yes, I said "clit!" When I feel that pain I wish to hell I had never opened my legs. But some shit can't be undone, you just have to face your culpability in your pain and git and bare it. The bottom line. I have drug-resistant herpes that is complicated by AIDS and the only treatment that will make me better is IV medication.

Getting IV medication.

Getting IV medication.

I decided to do the IV medication at the clinic instead of at home, because I didn't have it in me to deal with my mediport drama. And, no, they have not fixed the problem because two nurses tried to access it on Tuesday and couldn't.

So, it seems that the only person who can access the port is the chief of intervention medicine at RUSH Presbyterian Hospital and he keeps telling me that there's nothing wrong with it. Sigh.

It's a once a week IV infusion, every Tuesday in the chemo clinic. I probably have at least two more rounds. This medicine is a bit more toxic than the one I have at home. I have to take medication to protect my kidneys while I'm on it. The side effects to both are a nightmare.

So, I started IV medication on Tuesday. It's about an 8-hour day and a 5-hour infusion. I've spent the last 3 days sick as shit in bed and today is the first day of any work this week. Projects and commitments have gone the fuck out the window. I'm sad to say that bracelet orders are packed and sitting at the door to be mailed and I'm depressed at shit. On top of that, business has been painfully slow and I'm not sure how I'm keeping the lights on and the phone bill paid. It has been a day to day thing in the last few months and that's for real.

And I tell you what, it feels like I've reached some kind of limit. Most days I'm trying just as hard to figure out how to pay a bill equally as much, to not let depression take me the fuck out of here. I mean, I don't think it would be a cute look to let depression do what HIV/AIDS hasn't been able to do in 30 years. I'm just sayin'.

So yes in all honesty, some days more of late, I feel like I want to give the fuck up. Then I start thinking about Sophie and how she needs a Mommie. Then I start to think about the people who love me and the pain I would cause them. Then I think about God's plan for my life. The Bible says, "I formed you in your mother's womb." Really God? So you knew all along?

Like when I think about it, I spent 6 months in my mother's womb sucking an umbilical cord laced in heroine and God kept me alive for this hard-ass journey. Like, are you kidding me God?

Sophie has been sticking to me like glue these last few days!

Sophie has been sticking to me like glue these last few days!

But at the end of each day, I get it! That God's master plan for this universe is for the goodness of God's people. That means that God can take my nasty-ass life and use it. Use it for someone other than me. Use it for the goodness of others. Use is for those who feel like they can go on because I do.

In my heart I have to believe that God's plan for my life is bigger than any one thing that I'm facing. So I don't quit even when I feel like I can't go on, I just do. I do because a selfless life is a life well lived. If God loved me enough to keep me here, then I have to love me enough to keep me here. So I muddle through these painful, difficult days, one day at a time. Now what's so amazing to me is that God continues to show me the wonder of His/Her miracles. When the phone bill has been extended and the cut off date is fast approaching, even as close as a day before, from somewhere I get a small miracle.

So I keep going because God's plan is bigger than my pain. I keep going because even small miracles come from God. We keep waiting on the pie in the sky, when God sometimes only gives fresh mana for the day.

In the end, all we can do is to keep moving. There is life in movement. For me, it's walking Sophie when I don't want to bathe. It's reading a book, exercising my mind even if I don't want to move my body.

Sometimes it's moving from the bedroom to the living room with the big picture window so I can be reminded of God's wonder, the trees, the birds, the flowers, the sounds, the people, even living in a modest building amongst 4 million dollar houses make me smile. All these things remind me that I am alive. There is hope in being alive because I understand that life means that I'm still a part of God's earthly plan. So I don't give the fuck up, I just keep going with the understanding that God's plan is bigger than my pain.

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See Also
More Personal Accounts of Women With HIV/AIDS

Reader Comments:

Comment by: Devon Alexander Stoney (Washington, DC) Sat., Aug. 3, 2013 at 6:35 pm UTC
Thank you for sharing! I read your posts and share them on my FB page and on my Poz groups! This story resonated with me as it seems our life experiences are similar - from the molestation, bad acts, HIV, and education. I am for one happy that you won't give up as I think there is always a solution.

Thank you again for sharing your story and I hope that God keeps you here a bit longer because your messages do help those that are sometimes afraid to cope with their own life experiences but gain some understanding from people like you that share there own. God Bless you and wishing you a quick recovery!

Reply to this comment

Comment by: Justine (Kampala) Mon., Jul. 29, 2013 at 3:45 am UTC
Yes God's plans are the best. May you live more meaningful life year after year. Just look up to God
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Rae Lewis-Thornton Speaks

Rae Lewis-Thornton

Rae Lewis-Thornton

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.

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