|2 days out the hospital 2008|
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 then 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 had people jump on my celebrity band wagon 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.
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 crawl in 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 care giving and what it really means for me to be sick. Like where do you fit in? And where do I fit in?
Care giving 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 excepts of me.
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, 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.
Fighting an illness day in and out takes a tool both physically and emotionally on top of what they have to endure with the original illness. The side-effects along 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 care give to that person you love. Have you dismissed what that 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 care give 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 then going it along.
Or is how that "appear" it 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?
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 5000, but He also fed their hungry belly's.
Post Script: I am still very ill.. I will blog as much as I can, but I will have guest this week as well. What Kind of Care Giver Are You?