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HIV/AIDS Blog Central

Monday Reflection: Living in the Right Now

By Rae Lewis-Thornton

October 29, 2012

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

I absolutely hate when I don't have something chipper to say. I feel like telling myself "Bitch get over it," or "Here we go again, damn is your life just drama?"

If I feel that way, I know others must feel that way. I know I've lost people in my life because HIV/AIDS is the illness that keeps on giving what I don't want, keeps on intruding, keeps on changing my life. For sure there's never a dull moment living with HIV/AIDS.

I know people say; How can she be sick? I just saw her, she looks great, or she was just tweeting and Facebooking her ass off. Like how can she be struggling "that" much?

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Sometimes I feel like I'm between a rock and a hard place trying to balance it all. On one level, I don't want to make people think you can't live with this disease. I don't want to discourage those who haven't had HIV as long as I have. Looking at my honesty about my health, one could say, "If this is what I have to look forward to then who needs it." Yep, my honesty could have a negative effect on what they need to do to survive.

Nor do I want people to think living with HIV is a one-pill wonder. For sure, this is a hard disease to live with both physically and emotionally, but LIVE is the key word.

Most importantly for me, I've learned there ain't no glory in suffering in silence. I did that for years trying to meet people's approval. But I'm over it. I've decided that I don't want to be a second best anybody! I want to be the best me for me.

No point in pretending! No point in lying or giving half truths so people can like you. If people can't handle the authentic you, then you don't need them in your life.

By the same token, if the authentic you is too much for some people, they have that right to not have you in their life. And each of you has to respect the choices people make for their own life and well-being.

When you are living with a chronic illness you have to accept the days as they come. You also have to accept people as they come and by the same token as they go.

Not having any biological family has made this a hard journey for me. Depending on friends has proven difficult. I can count on less than one hand those who have stuck it out; the good, the bad and the ugly. For sure I had more people in my life when I was on TV every other day and the speaking engagements were rolling in.

This need to fill the void has gotten me into trouble. It's made me overlook danger when it was staring me in the face. By the way, NEVER ignore that inner voice that says this doesn't feel right.

So here I am, trying to do the best that I can with what's before me. Trying to keep my head above water and an ounce of my dignity intact, all at the same time.

Part of my secret to longevity, other than God's got a plan, is living in the right now. By the way, God can have a plan for your life and your free will can jack it all up. #ForReal #ForReal

So I try to stay connected to God's plan for my life. I do what I must to stay alive. I take my medication. I accept the changes and the hits as they come and I do it with just plain old common sense and healthy survival skills. It may mean some days I have to be flexible and kind to myself.

Last week was an emotional bitch. I had this overwhelming darkness that just consumed me and I did what I needed to do to survive. I put all of my energy into designing my Fall/Winter 2012 RLT Collection. Beading takes me to another place and the experts believe that using your hands is helpful during depression. I became single focused so I didn't get swept up by the darkness. I know I didn't blog, but I had to switch up last week so I could be better this week.

It seemed to be working and then on Friday night I felt a physical exhaustion that I first assumed was from a full day, but by Saturday morning I was faced with a reality. HIV/AIDS is doing something to my body. The first thoughts are always, what is it? Is it something major or minor and how long will it last?

The fatigue is all consuming and the nerve pain is everywhere, from my face to my feet. The worst is feeling like someone is sticking pins in my eyes. I spent the last two days literally in bed. I'm praying it's not what I think it is, some weird illness I get every few years that knocks me down.

When it happens, they think herpes is attacking my nervous system to the extreme. I'm hopeful, but not in denial. Maybe this is passing and won't be as totally debilitating. The fatigue is definitely better today. But the pins-and-needles feeling all over my body is not letting up. Maybe in few days or so and I will be back to my normal, sooner than later.

But just the fact that I'm always trying to outthink AIDS is exhausting. For sure, managing this disease is no cat walk. And you must remember, I've been living with HIV for 29 years and AIDS for 20. Yeah, yeah, I know I'm alive and I know I keep it moving more than most and that I don't look or seem sick most of the time. Let me pause and say, don't let the miracle of my ability to keep moving keep you in denial about the struggle of my life.

My body has lived through some serious trauma. At one point I was sick enough that I should have died. There has been serious damage done that cannot be repaired. Not just from the HIV, but from the years of HIV medication. Yes the medications have helped to keep me here longer, but they cannot undo what's been done and they have done some damage on their own.

AIDS is a walking, living, breathing dichotomy. At one level we know the list of opportunist infections that one can get and we know how to prevent most of them, but it's just as unpredictable.

I never know what the next day will be. Shoot I've gone to bed feeling normal and have woken to a temperature of 103 and diagnosed with PCP, AIDS-related pneumonia. The medicine I was taking to prevent PCP didn't work for me.

I've woken up in the middle of the night unable to breathe in a hotel room. Found an HIV doctor, had an X-ray, told that my lungs were normal, come back home, get off the plane and be hospitalized yep, for PCP yet again.

I've been on the road. Gone to bed in a hotel room feeling normal and woken up and couldn't walk, and by afternoon I had herpes zoster sores from the top of my butt to the bottom of my feet.

I've gone to my therapist's office and after the session got in the car and had to take a nap before I could drive home. Then hospitalized for a week to determine that they couldn't determine what was wrong with me. That's when the nerve pain really began. I remember my doctor said to me, "Well we have determined that it's not going to kill you, we just don't know how to make it better, only time will tell." At that point I could barely hold my body up and the fatigue was debilitating and -- don't be confused -- this was all with an undetectable viral load, which hypothetically means you shouldn't have any AIDS-related illness.

Yep, HIV/AIDS is a walking, breathing, living dichotomy. I tell people in my life, just because I was OK last night, don't assume I'm OK today. You better check for yourself. And never assume that it's just me having a bad day, if I change my routine, something is wrong. That's why I try not to go to bed mad, because tomorrow I may be too sick to apologize or make it right. Use my life as a lesson for understanding the people in your life with HIV and their daily struggle.

Living with a compromised immune system for as long as I have is both a miracle and a mystery. I never know what's next. But I know if I live in the right now and not in denial, I'm using my free will in the best of ways, to continue God's plan in my life. Now don't be confused, God don't need help per se, but God gave us this free will for a reason. Sometimes we knock God's plan straight to hell in a handbasket with how we use our free will. Then God's gotta work hard to reel you back in.

My BFF Luke said it best in a documentary on me. I never have a normal day. I don't have "normal" days like everyone else. My normal is abnormal and some days the abnormal is abnormal.

But I press my way because the alternative is death. Don't be confused, I do have advanced AIDS. If I should stop taking my HIV medication I will die a horrible death. Don't be confused, if I surrender to the darkness, it will kill me quicker than the disease. For me, surrendering and living in denial and secret are two different things with the same outcome: death.

No matter what you are facing, you must live in the right now. Living in the right now will get you to your better tomorrows. It does not matter the dilemma you are facing; You must be willing to deal with it today to create space for a better tomorrow.

While I feel a certain kind of way about my honesty, I know it's the thing that has kept me alive. There's no way I can live with the weight of HIV/AIDS and the weight of what you think of me because I dare to share the weight of this disease.

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See Also
Ten Things You Can Do to Enhance Your Emotional Well-Being
Depression and HIV
Feeling Good Again: Mental Healthcare Works!
More Personal Viewpoints on Coping With HIV

 

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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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