Tag Archive: terminal illness


http://www.cnn.com/2011/HEALTH/08/10/hiv.tattoos/index.html?hpt=hp_bn6

I recently read an article about HIV positive men getting the biohazard symbol tattooed onto them after diagnosis. My mind went in several directions as I read the article. The first thing I thought was “Wow! Fantastic idea!”

It is – even though I thought several other things during the course of the article, I recognize this for a great idea. I believe it is a step in moving AIDS from one of the terrors of the night – a disease so feared people are ignorant about it – to a terminal illness that can be lived with, and loved with.

I am 29 years old, and even as late as 6 years ago, I was paranoid about AIDS. It was the ‘dirty’ disease. Only homosexuals or drug users got it rightfully, but they could — and would spread it — just because they wanted to make other people miserable too. I remember hearing a store about people putting HIV infected needles in the change returns of payphones, and sticking them into theatre cushions with a note that said something along the lines of “Congratulations, you’ve got HIV.” Does anyone else remember this?

Anyways, my viewpoint began to change because of my MA teacher in college. She asked the class “If you had a loved one that was dying of cancer, would you refuse to take care of them?” Naturally we all answered “No.” Of course we would take care of them. Then she asked “If your loved one was dying of cancer, would you refuse to love them?” The very question was offensive! Of COURSE we would love them! Then, she said “So, if your loved one had a terminal illness, you would still love and care for them?” Yes. Yes. Of course, yes!

“So, why would you treat a loved one with AIDS any differently?” Well, because its AIDS. You know, we can catch it! Wait, though, we were in medical assisting classes. We’d learned about safety precautions. We’d learned how AIDS was spread. We all knew you couldn’t get it by living with someone, by holding their hand, by giving them a kiss on the cheek. We also had learned things like even if you got infected blood on you – you were okay as long as you didn’t have an open wound, and washed your hands and such immediately.  I really started to think. To evaluate my understanding, and even to do a little bit of research on it. My viewpoint began to change.

AIDS is a terminal illness, and I acknowledge it as such. Just as I acknowledge that my daughter has a terminal illness. People with AIDS should not be treated as lepers, and I am happy to see that some of those that do have the disease are trying to take control of their own life, promote awareness, and still find love in the time that they have left… and with the drugs that we have out now, they can have several years.

I still have some improvement to make, though. One of my coworkers is a homosexual male. During one of our downtime conversations, he mentioned dating a man that had AIDS. I was horrified. I shouldn’t have been, but I was.  I asked “Weren’t you afraid?” My coworker looked at me patronizingly and said “He was safe. He did every thing he could to keep me safe. He was honest about his disease, and cared about my health.” I felt like I should crawl under the desk at that point in embarrassment. My old ignorance had reasserted itself.

Even though my viewpoint on AIDS has changed dramatically, there are some things that has not changed. Even if a man offers to wear a condom, I will not screw him if I know he is HIV positive. I might give him a peck on the lips, but there will be no deep kissing. I am too paranoid about catching the disease. However, I will hold his hand. I will laugh with him, hug him, love him, go places with him, wipe away his tears… There are many things I will do that I would not do a few years ago.

Hopefully, in a few years, the worries over AIDS will be moot because we will have developed a vaccine or eradicated the disease.

I applaud those that have made the decision to get the biohazard (or equivalent) tattoo. If I see that, I know that that person has made the decision to not hide his illness, and is taking a step towards educating others (because everyone asks about interesting tattoos) and letting others know that their health when they are together is a priority (albeit in a roundabout way). I am not saying that I think all people with AIDS should get a tattoo – and that if they don’t, they are hiding the disease or putting others at risk. I am sickened by the thought that once, not so long ago, someone suggested that tattooing be a requirement.

It is time that we, as a society, moved from viewing someone that has AIDS as a walking death-sentence to everyone to someone battling a terminal illness, but still entitled to a full life.

…and yes, I mostly said “he”, but please do not think I’m stupid enough to think that only males have HIV.

Shortly after Lily was taken off the ventilator, they started trying to bottle feed her. The first time, she ate 5 mLs. Soon she’d moved up to 15 mLs (half an ounce). However, she seemed stuck there. Now, when she was in the regular cardiac unit (C5), we concentrated primarily on feeding her.

L snuggling with the stuffed toy some friends of mine sent her.

It soon became apparent that her feeding issues was not something going to be easily fixed. Around August 11th, they came to me and said it was either an extended (months) hospital stay, or we could put a Gtube in (Tube through her belly) and send her home. Obviously, I opted for the Gtube.

August 14th, Lily was released from the hospital.

They had told me when Lily was placed on the ventilator that there was a chance she would not be too fond of eating afterwards. Negative associations or something like that. However, soon a pattern developed. Lily would eat like she was starving up to about an ounce to two ounces… then she would just stop. Abruptly. You couldn’t coax her to eat anymore. She was receiving most of her nutrition via an NG tube (feeding tube up the nose.)

Lily with her G Tube. At home.

And that was Lily’s journey through open-heart. I thought things would get better after this. Boy, was I wrong.