I was watching The View when I heard Cookie Johnson say when her husband ”Magic Johnson” confessed that he was HIV she had to make a choice. Her choice was to leave and let him die or stay and help him live!
She said how hard it was for her when he had to close himself in a room and call all the women he had, had sex with over the past 10 years. I heard her say this and I thought “This is my story in reverse.”
I’m the infected spouse and my husband decided to stay and help me live. He stood by while I had to talk to the health department and disclose my sexual contacts. He wasn’t literally in the room but he knew I was online and on the phone giving names and contacting those I may have exposed or who may have exposed me to HIV. He chose to stay and in the early days or months he probably thought I wasn’t going to be in his life and our children for much longer. He chose to stay and help me fight this disease. He was tested within hours of my diagnosis and tested negative. I thank God for that. He chose to care for me when I couldn’t get out of bed. He drove me to every appointment to sign up for care, for medicines, and everything connected to infectious disease. He keeps me on schedule and checks for any new side effects or symptoms. He drives me to the hospital when I have to go and stays until I force him to go home and rest. I wouldn’t say he’s a Saint but he’s pretty darn close to it.
We still argue as many couples do that have spent so many years together. They are not big fights more of disagreements because we don’t agree on a lot some days. One thing I guess we do agree on and that is that it’s better staying together than being apart. And alone.
I love this man whom I decided to marry so many years ago and will try to make up for the terrible choices I made in a bad time in my life. If he asks something of me I can not refuse and part of that request is keeping my status private from most of our life. Secrets are hard for me and lies are a close second.
Now in our later years we care for one another. I guess the part of the marriage ceremony fits here. “In sickness and in health” We are the elderly couple sitting together on the park bench or walking on the beach. We may not be always holding hands but we will be very close together.
A few years ago, I started a new journey on my own when I moved to a new city. I have been HIV positive for many years, and sometimes I found myself having too much on my mind at one time. It would become very chaotic and overwhelming, so one day I decided to go and sit in my yard to try to relax. I wanted to sit outside and get the sun on my face because I felt like I could draw energy from the sun.
I would breathe in slowly, thinking about nothing but drawing in energy. I keep breathing in until I felt like I bottled up all of the energy I could manage. Then, I would breathe out slowly. While breathing out, I let everything go. I let go of stress. I let go of the things that are outside of my control. I just let everything out while breathing out. I tend to let my arms out too while I’m breathing out because it helps me get rid of that extra energy. When I breathe and meditate, it is about me letting go of the things I cannot control.
My advice for anyone who would like to start meditating is that, first of all, you can meditate anywhere. I used to live by a beach, and I would walk on the beach in the mornings when it was quiet to do my breathing. You can also meditate in your bed before you go to sleep. I suggest sitting up in your bed, crisscross if you can. Then just slowly breathe in and out, focusing on letting go of the things that are outside of your control. The most important thing about meditating is finding a quiet place where you can focus on your breathing.
What I have learned from meditating is that worrying isn’t going to change anything in your life. With meditation, I’ve learned that it is important to let things go and not focus on the things that are outside of your control. It helps to make life’s hardships a little easier to deal with. We have to be okay with not always being in control.
Support groups are everywhere. There are support groups for drinking, sex, gambling, health issues, etc. Having a problem that requires a support group is hard enough but then you add the fear of attending that first meeting. You don’t really know anybody, but you do know that they all have the same problem going on that you do and that’s a comfort. A million thoughts are running through your head when attending the first meeting. Will I have to speak? Am I being judged? How will this help me?
Most support groups are nonjudgemental and a safe zone where you can share your thoughts and feelings with people who understand what you’re going through. Being the newest member of anything is always hard, but being part of something that is helping you better, or get through your life is the best.
I was a new member of a support group about three or four years ago and I was terrified. I didn’t know anybody and was hesitant about people finding out about my status. The ladies of that first group were wonderful, though, and made me feel very welcome. Now it’s years later and this group has become such an integral and important part of my life. I love every single person so much and I can’t imagine how I would get through life without their support.
Support groups are there to help us and most of the time they end up being our biggest supporter. I encourage everybody to try one.
First, I want to start off and say, I am not a presenter. I never have been. Getting up and talking in front of people seemed to be the worst kind of torture to me. I hated it and I never could remember all I was supposed to say or do. They say the only way to conquer a fear is to do it often and repeatedly.Recent events have allowed me to put this theory into practice. I have had to come out of my shell and actually speak to people. At first I was terrified about speaking in front of people and having all their eyes on me, it was a nerve-wracking feeling. Well, I gritted my teeth, buckled down to practice and got through it with a lot of help and support from others. Now I have been making presentations on a pretty regular basis, and this mostly involves talking to people about living with HIV and how it has had an impact on my life. Wanting to help other people living with HIV is what gave me the push to tackle more public speaking. I wanted to educate others on the disease, those living with it and those who are not.
Being able to help and educate people was important to me. It’s important that the word get out there that living with HIV is not a death sentence anymore, you can live a long and healthy life. I can’t say I still don’t get nervous before a presentation, but once I’m warmed up it’s usually a piece of cake. I usually practice what I’m going to say the night before, and it really helps when you have a partner to practice with. That way you have somebody besides yourself listening to your presentation, and they are able to give you feedback on it.
I would say you can really start speaking out anywhere, but probably keep it small at first. As long as you have the passion to educate, inform and help people you will be able to speak up anywhere. It doesn’t matter if you have the experience or not. Your passion will shine through.
June 27th is National HIV Testing Day. As we observe this day, take time to create awareness and encourage testing. So, I challenge you to take the first step as well and speak out.
Here are a few sites for additional information:
Share with us the steps that you take in observing this day.
As human beings, we automatically are taught to nurture others and that makes us start on the road of learning to”cheat on myself.” I never thought about that until today. I should be on the path to help myself when it comes to things like bubble baths, going clothes shopping, getting my hair done, etc. I should be open to learn how to see the positive in everything and learn how to enjoy everything that I am doing. If not, I am“cheating on myself.”
Sometimes I have family, friends, or significant others who try to take all of my time away and sometimes it feels as if I am being taken advantage of. The time that I have set for myself should maybe be marked as an important appointment on the calendar and even put it on the phone with an alarm. When I do this, I will make sure to tell others that I am going to be busy and stick to it because I deserve it and so do you. It’s just as important to do this for myself and makes me just as important as someone else is. If I stand up and say “NO” or just saying that I am busy, that should be enough. I don’t feel guilty because this is me that requires rejuvenation.
Just because I learn to say “NO” doesn’t mean that I don’t love others, it’s just that I have decided to do things for me as a women with HIV and it makes me learn about myself, then I will be better at helping others. As a matter of fact, it makes me stronger and maybe I have learned not to “cheat on myself.”
I decided to write about this because I have been letting others dictate my choices and that is not going to continue because it will stress me out and cause me to be sick. “Cheating on myself” makes me forget all of the little things that make mehappy.
Get back to doing you, and stay on track, so that you will be able to have strength to show others why you are so happy, maybe it will catch on.
What makes you cheat on yourself and what would you like to do for yourself that will help you stop?
I love sex. Really I do!! I love to talk about sex, I love to educate people about healthy sex and of course I love to engage in healthy sex. The best part though is the look on peoples face when I tell them I am HIV poz and that sex is awesome in my world today. Ooohh the blushing I witness on a daily basis!!
The majority of people have a mindset that if your HIV poz, 1) No one will want you, 2 Poz’s can’t EVER have sex so they don’t transmit HIV to anyone, possibly go to jail or prison, and 3) You’re gonna die so what’s the use? FOR REAL!!! I have actually had that one said to me. Well, I’m here to tell you that sex is “doable” Ha ha get it, doable?
Sex is the major route of transmission for HIV. However when I was diagnosed I wanted, no… I NEEDED to blame someone. Once I grew up a bit (emotionally, spiritually and mentally), after being Poz for 13 years, at 42 years old, I realized that I was ultimately responsible for my Poz status. Then, I forgave myself. Once I grew up a little I came to be ok with me; I decided that I do like sex and that I want to have more of it!!!
So what’s a girl to do?!?! I mean really!?!?! Dating sites are great, but when do you disclose? In your profile? First date? After he’s in love with me and will not want to leave me? Well, I will tell you that I have done both and it ended well both times. One walked away…the “after he falls in love” one. Then the “first date” one, he stayed and got educated about HIV. He started taking PReP, along with condoms, and it was on for us. That relationship ended after 13 months. But before it ended…I learned a lot about me and my orgasms. That’s right I said it loud and proud “ORGASMS ARE FUN”.
Although I am currently single, I am hopeful for a life partner with the same mindset and sexual drive as me. It was a long road to get here and I am thankful for every part of it. Today I am an HIV + 49 year old sexually active happily orgasmic woman.
Stigma is a cancer. If we allow it to, it eats at your soul. We can’t allow stigma to take over or overshadow us as individuals. HIV is such a small part of our DNA. We were who we are before we contracted or were born with HIV. It is nothing that is our fault and we can’t let it overshadow our goals. HIV is something that moved in, uninvited. We have to be stronger than HIV.
I am a mother. I am a grandmother and great-grandmother. No matter how great the obstacles we face, God never puts too much on anyone that can’t handle it. Believe in yourself. Look in the mirror and tell yourself that you love yourself.
Put HIV in its place and love your life. Continue to live your life and be confident with the woman that you are. I was diagnosed 29 years ago and today I stand before you, undetectable.
Part 4 of our 10 part series!
“Let’s Talk About It’ has a lot to say. Yep, there are options for medical care. (You can check it all out at: http://rwhp.org/sis.html