Remember, this is just a journey
…you start to realize you’re allowing your judgment to be entirely misguided.
Not that I anticipate this being read at all, however, this is about to be a long, mostly rambling rant. If you haven’t got the time, move along, as I truly don’t want to bore anyone, I just need to express my frustration with certain things in my life, the main one being addressed in this post.
Some of you actually know me and those that do are aware of the situation involving my younger brother, however, very few have been alerted to the entire story. For the last 6 months its been this weird scenario of people wanting to know why I seem so out of it.
Sincerely, I’m a bit worried. A lot of people know that my little brother has leukemia. While part of it, this is not the complete truth.
My little brother, at the age of 24, has HIV.
In the beginning of October of last year, my mother called me asking if I recalled if he (just so I can give him a slight ounce of privacy, I’m not saying his name, rather, I will be referring to him as LB) had ever had chicken pox when we were kids. Apparently, my LB had this intense rash over his entire body that was puzzling everyone. His fever was high and for nearly a week, wasn’t subsiding. He was in the hospital and no one knew what was happening. My mom thought it was perhaps shingles, which can happen if you’ve had chicken pox. I remembered he had indeed had chicken pox, relayed the information to his doctors and figured he’d be released shortly as that HAD to be it.
It wasn’t. Getting the call the next day that he had HIV was probably the most upset I’d been in years (with the exception of my uncle and godfather passing this year, on the same damn day, but more on that in a different rant). HIV? All I’d heard or knew about HIV was that it was the start of AIDS and AIDS was a death sentence. And leukemia? That’s a cancer of the blood cells. How the hell do you treat a cancer of the blood cells when touching the blood of the affected person would mean death for you?
Not getting into exact specifics, but somehow, it all came together. He’s been getting treatment for 6 months and it looks like the leukemia is just about gone (medicine amazes me these days). But HIV, there’s no cure. He will have it until he dies. This is where the frustration I face comes into play.
My LB has a history with drugs; he nearly did not graduate from high (secondary) school, he would call me on a school night at 5 am asking me to pick him up because he was messed up, and he would try and tell me that raves “were child’s play because the LSD is like, so never good.” Me? I’ve never touched a drug in my life. Nothing, ever. Never had a desire to, never will have a desire to. I’m the tattooed chick that people assume is the troublemaker when, in reality, me even having a drink is a once every 6 months occasion.
In order to maintain and “treat” HIV and be sure it does not turn into AIDS, you have to control it. This means 10-15 pills 3 times a day, everyday, for the rest of your life, along with bi-weekly blood level check ins, once monthly drug re-evaluations to make sure your current drug cocktail is working and a variety of other conditions. He cannot, under any circumstance, consume alcohol.
LB joined the Marines a couple of years after he graduated in order to get his shit together and for about 3 years, he was doing really well. I was a super proud older sister of a US Marine who was getting medals for being an expert marksman and who was being shipped off for specialty training.
Something neat about advances in HIV is they are now able to determine when you may have contracted the virus. They determined that my brother got it 45-60 days before he saw symptoms and before his official diagnosis. Knowing this, I immediately began digging into what my brother was up to just over a month before. Lo and behold, my muskrat of a brother was at none other than Burning Man. I’m a firm believer that there are 2 types of people who go to large music/art festivals of that nature, whether it be Burning Man, Coachella, Lollapalooza or even Warped Tour: those that are genuinely there to enjoy the music and art scene with friends, and those that are there to participate in stupid decisions involving whatever drugs they can get to, thus creating the “bad reputation” a lot of festivals are branded with.
Confronting him with this info, he admitted to having slept with a handful of women (minus protection) and wasn’t entirely sure what drugs he had actually done, he just knew LSD and ecstasy were a part of it.
With all this coming to light, my brothers career as a soldier was immediately over. Leukemia, they can easily put you on a desk job until your treatment is over. HIV? They are training you to go to war; if you’re hit, what then? No medic can touch you if you are bleeding, ever. The end. Somehow, he got away with passing all the drug tests the Marines gave him and he was honorably discharged last December.
Here is the kicker: a week or so ago, I log onto Facebook to see new photos of my brother, beer in hand, shirtless, somewhere in the desert. I may not do drugs or party often, however, it’s apparent to me he is at some sort of “top secret rave”. I’m not a complete idiot. If he’s at a rave, he’s most likely dropped acid or popped ecstasy.
And thus this begs the question: how the HELL do you help someone with a life threatening disease when they don’t seem to want to help themselves? I ask him about the photo, and he skirts around the issue and lets me know he “can’t wait for EDC and Burning Man this year.” Yes, because that’s EXACTLY where you need to be.
My mother’s sister was a drug addict and alcoholic her entire life. My first memory of her was at my grandparents place; she drunkenly stumbled into the room I was in and asked me if I had a lighter. I was 12. In fact, my second oldest sister is not really my sister. She’s my aunts daughter, biologically my cousin. After finding her sister strung out on heroin, my mother, along with my grandparents, raised my “sister” since since was 6 months old. I realize this doesn’t seem like information that is necessary but I always feel it is an insight into how I view addiction. I have been around it my entire life.
To me, addiction is a disease, however, unlike traditional diseases, I feel that addition has a unique blessing: if you want to, you can beat it. My aunt didn’t beat it because she didn’t want to. She died 5 years ago at the age of 49 from cirrhosis of the liver. Knowing that, I’m terrified that my little brother won’t make it. What scares me more, is I don’t know if he cares or if he even wants to.
So, now that the leukemia is just about beat, what happens next? My brother is living with his family back in the same house where we grew up (well, me partially, as I shuffled around) and going to college, thanks to his GI assistance. Apparently he got a job, though I don’t know where at yet.
In my eyes, my LB is still this crazy, daring, fun loving kid who is aching to climb a 20 foot tall tree for fun or learn how to skateboard down the huge hill that is our front street. I want, so hard, to go back to that, but I can’t anymore. Instead, I have a grown adult who suffers from poor decision making skills. I just want to show him there’s a way out and he can so many amazing things with the life he has.
When I was talking with him about the photo in the desert, I reminded him he was doing a good job there for awhile. He started to cry, asking me why any of it matters anymore. To him, having HIV, he thinks no one will ever love him or want him. He doesn’t see that there is an army of us that already do.
Even when I don’t want to care about him, even when he frustrates me to the point that I write a mini novel about my frustrations involving him, I can never stop loving him. And while my emotions may cloud my common sense at times and make me seem weak, in reality, I am stronger today because of my love for him.
He’s my brother.