June 20, 2011
Two days out the hospital, 2008.
This piece originally appeared in Rae's blog, Diva Living With AIDS.
I have AIDS and there is no denying this fact. It doesn't matter how good I look, how wonderful I sound, or what schedule I push myself to maintain -- I have AIDS.
And while I put up a good front at normalcy, there is nothing normal about my life. The fact that I try to maintain, "Normal," isn't even normal. And over the years I have learned that people seem to focus on the wrong thing when it comes to my health. Like fresh out of the hospital, people tend to focus on how "good" I look rather than what I may need to help me recover.
And I've often wondered if that is a form of denial for themselves to help them deal with the fact that I'm so terribly ill or is it their excuse to half ass on their support for me.
I've been giving a lot of thought to this because lately I've been pretty sick and this week in particular was designed by the devil straight from hell. Over the years, I have had soooooo many people say that it didn't matter what I needed, that they would be there, but in the end to find myself alone or doing it myself.
I've had people jump on my celebrity bandwagon at its height and disappear at its low point. I've had people who started out with me and faded along the way because dealing with my health is exhausting. Just too fuckin' much; so they just stopped calling and stopped doing. Over the years I've learned to accept their broken promises and keep it moving.
Having a chronic illness is lonely. I can't even explain what its like to be in the hospital receiving IV medication on Tuesday by myself. I'm grateful for my Twitter family because they keep me laughing and my mind preoccupied as best as they can and it helps to get me through that long day. But then I have to come home and crawl in this damn bed and at that point it's just me and Sophie. And the trauma that my body is going through is nonnegotiable, I can't avoid it, I must endure it. Enduring the physical is a hard hit to one emotionally.
And God forbid that I have to pull myself together and be "normal" while my body is still traumatized. Like the last two weeks. Week before last, I got on a plane and went to San Francisco to speak for the 100 Black Men and turned right back around to come home for a personal event that was important to me.
But then last week, after 6 hours of trauma, I had to make myself be "normal" again. Dress and then get to my Tweet-Up for National HIV Testing Day and that took every freaking thing I had in both my body and spirit. But I did it, because that's what I've trained myself to do. But just because I do it, doesn't mean that my body isn't going through the same trauma as if I were to crawl into bed. And actually it's going through a tad more, because I've focused myself to do, when I should be resting. Any who, I wonder what people actually think about their role in caregiving and what it really means for me to be sick. Like where do you fit in? And where do I fit in?
Caregiving is hard! I did it. My mother had cancer for 3 years and I took care of her and myself. It requires sacrifice. Unconditional love is even harder! Yep, I did that too, because my mother was the mean ass woman sick and dying that she was living. But what I did was in spite of her and because of me. ... Because of who I am and what my God expects of me.
I've learned over the years, that people take caregiving lightly. They say, if you need something call, but proud people typically never pick up the phone and call. Which frees them up of actually doing anything. And when people tell us, do we really hear them? Like for example, when I say, I can barely hold my body up, I wonder what that means to people? I wonder if they wonder how I'm eating or even making it to the bathroom for that matter? Or what effort it must have taken for me to get dressed, given the fact that holding my body up is an issue.
But let's take it a step further, if I can barely hold my body up, then cooking is not an option. Even if I put it in the microwave, then do dishes ever get cleaned? I just wonder if you have ever just showed up on the door step of your family member or friend with AIDS or another chronic illness with a meal in tote or a mop to clean for them. Or do you bring them a meal, look at their dirty dishes in the sink and keep it moving. I wonder do you know more about my life with HIV/AIDS than your family members or good friend? I just wonder. ... Do you take them to the doctors and drop them off or have you actually stayed with them. By the way staying says, I love you and I'm not ashamed of you.
Because you give in one area of their life, is it OK to be insensitive in another area of their life? The thing is, their health effects ALL areas of their life.
The role of the person who is ill will never change -- that is to get better. Whether you show up or not their life will move steady and typically we adjust. I've learned to do what I must because I have no other choice especially with no family. But for sure my life is NOT normal no matter how it might appear. And while I try hard normalcy, I fall short and that in and of itself is a crude reminder that AIDS dictates much of my life.
Fighting an illness day in and out takes a toll both physically and emotionally on top of what they have to endure with the original illness. The side effects from the medication are a nightmare. I know they are for me. The expectation of normalcy is not fair. Nothing is normal for them. Nothing. Yep, I'm going on record: My life is a bitch. I fight hard to keep it together but this shit is hard. It's even harder trying to go it alone.
I just want you to think about how you really give care to that person you love. Have you dismissed what they have told you about their health because they look good? Is it denial because to consider the real health issues is to much? Do you give care out of convenience? Don't ask them what they need and then don't show up or show up with an unfair expectation of them, that hurts more than going it alone.
Or is how they "appear" an easy way out? She's cool. I saw her on Twitter She's at an event so on and on. Have you really taken time to think about the value you can truly add to someone's life based on the real information they have given you about their health?
And when you actually do give, is it predicated on their ability to give back? Their capacity is limited no matter how it appears. I will say it again, their life is not normal. And why do you have any expectation of that person other than for them to get better? Be better.
Have you really thought about what role you can play even if it's in a small way? I use to say to the church folk and I say it again, people need more than prayer. Jesus preached to the hungry souls of the 5,000, but He also fed their hungry bellys.
Post Script: I am still very ill. I will blog as much as I can, but I will have guests this week as well. What kind of caregiver are you?