Wearing the Red Ribbon

I remember when I was first diagnosed in the late 80's. At that time not many people were infected so the health department had the resources to send people out to newly infected persons and teach them on how to live with the disease without spreading it.

A nurse showed up at my door and she gave me the rundown on the disease and at one point she asks if I have any bleach. I'm thinking to myself, she does laundry to?! Cool! But no the bleach was for a different reason. It was to show me how to bleach the silverware I used and also how to wipe down the toilet seat after each use. I didn't know it at the time but it was introduction to stigma.

The sad part is that now we're several centuries later and the mentality of fear that still exist of people who have HIV and peoples fear of catching it from a simple touch or handling an item that someone positive has handled.

HIV stigma is sometimes hard to describe. We know that it exists but sometimes for those who are negative, they don't fully understand what it feels like to be stigmatized. Stigma can create barriers to proper healthcare, create negative self-identity and progress often to discriminatory behaviors.

We are now about to recognize those living with HIV/AIDS and those who have passed from the disease as another World AIDS Day is here. I've attended many functions each year and each time I notice something interesting. At each event they hand out red ribbons and a pin for attendees to wear during the function.

At that moment we're all infected or affected by HIV/AIDS. At that moment.

The interesting thing that happens is when the event is over and it's time to go home. You notice the removal of the red ribbon before people leave the building. The removal of the ribbon before they go into the general public or before they get on the subway. Because they know what that ribbon represents-stigma.

Yet for those living with the disease we don't have the luxury of removing the red ribbon. It's something we carry with us everywhere we go. Of course our status doesn't show on our lapel but we blend in as much as we can. in certain neighborhoods or regions of the country we still have that early eighties mentality of ignorance where we have not progressed in our understanding of what it means to have HIV/AIDS.

So this year i throw out a challenge to those attending World AIDS Day events this year. I challenge you to wear your ribbon home. If someone has questions help educate and eradicate the ignorance. Show that you are truly affected and join the chorus of those living with the disease.

Wear the red ribbon with pride and help show that AIDS doesn't have a certain face or race. That truly we're all affected by HIV/AIDS.

And as a last note I give pause to those who have moved on to a better place and honor your spirit not just on the first of December but everyday.

God bless

Giving Thanks

As we come up on the Thanksgiving holiday, this is a perfect time to reflect and recognize all the events and people that have brought me blessings this year.
I first have to thank God. Being connected spiritually with him has made dealing with life so much easier. I won't lie, in my early days of my diagnosis I used to be angry at him, gave him the silent treatment and refused to speak his name out loud. But amazingly, he never gave up on me. He was always consistent through my inconsistency. And like the lyrics of the song states, "I never would have made it without you." And coming up on 25 years of living with this disease I know that he's there with me until the end and beyond.

In a weird way there's a certain thanks to having HIV. Believe me if given another chance I wouldn't want it but the fact is that I do have it and it has taught me the value of living a true fulfilled life. It has placed things in perspective and made me reflect on what is important and what is minor. It's given my life drive and a purpose. My cup runneth over when I know that the only person who can stop my dreams is me and I'm to busy building my dreams for me to be my own destroyer of my goals. Yet it hasn't always been the most fabulous journey but I've walked many trails and been able to walk through doors that I thought were closed to me, now opened for me to experience a true rich life.

I thank the many friends and people I've met who has accepted me for who I am and not judge me for what lies in me. Those who have given me words of encouragement or affirmations and walked toward me and never showed me their backs. I'm also thankful for the people who are honest with their lack of knowledge and honest enough to admit it. We're sometimes learning together as the rule book is different for everyone who is positive, yet your openness doesn't bring offense but a opportunity to teach. And that learning is a two way street where I'm enriched by you.

I also have met some incredible people who are living with the virus and they give me inspiration as they give me new challenges through their challenge. We're talking about people who speak publicly about their status, people who have run around the entire city of NYC not letting their status hold them back and those who stand in the face of stigma and faced it down daring anyone to deny them the same rights as others. The passion that you extend feed my creativity and fills my soul. You do what you do not for accolades but because its what in your heart.

Of course I save the best thanks for last and that thanks is for the people who have put up with my ranting and ravings on the 20+ blog. You've let me be raw and naked with my emotions. You allowed me to not hold back and find a way to release built up frustration. Even when I come off as a Pollyannna you stayed with me.  Sometimes I've offended people which was never intentional but you calling me out on some of my writing gave me another way at looking at the subject. And I appreciate each bitch slap back to reality as I'm still trying to figure this virus out after 24 something years.

The greatest thing is knowing I helped someone or made someone feel like they were not the only one going through something made me feel like my words had value. You looked beyond the typos and found something you could identify with. In the sharing you've told me about your own struggles and each time I'm reminded that despite our status, we're all going through something but whether we face success or adversity, we can learn how to not just 'handle' it but to take advantage of it. If we want to succeed in life, I've learned we must learn how to make the most of both victory and defeat because we're certain to encounter both along the way.

So this year I give thanks and know that although there may be times when I feel lonely I'm never alone.

Thank You

Giving Back To HIV

It's hard to believe that the holiday season is once again upon us. In several weeks we'll be passing the turkey and gravy and soon after that opening gifts. Yet not everyone will have this experience as holidays can do the opposite of making you feel connect and instead can remind you of the disconnect you have either with your friends, family or people in general.

I know for myself I hated the holidays as I was not close with my family and the actual holiday reminded me of my loneliness. I just couldn't wait for Thanksgiving to be over so I didn't have to be reminded. Happily life make changes and I'm not in the same place I used to be as I now have cultivated a circle of friends and reestablished relationships with family.

I always believe that no matter what you're going through that someone is going through something worse than you. You may have the ability to leave your house and feel the cold air on your skin, to walk unassisted with canes or walkers and fortunate enough to admit your health is good.

For others, especially with HIV they are sometimes home-bound and don't have that luxury. Some would love to complain about their commute to work as it meant they could leave the house and also it meant they had a job to go to, yet based on their condition they're stuck in a house sometimes with no support from others.

I'm offering a cure for those who feel that the holidays bring out their reflection of depression. The cure is to give back to those in need. Challenge yourself to volunteer your time at many food programs offered for home-bound HIV residents and make a difference. Here in New York City we have several, the biggest one being God's Love We Deliver, a daily program that utilizes volunteers to prepare meals and delivers them to clients throughout the city. Thanksgiving is one of the biggest day and the biggest need for volunteers.

By giving back you can make that Thanksgiving a day of removing any remorse and make it truly a day of giving and receiving thanks. You can also be an important person who can make an impact on someone's life. Even if you don't live in NYC just Google for local agencies in your community looking for volunteers this holiday. I say this now as many agencies are preparing for the big day and usually they may have you attend a brief training.

The greatest thing is it brings you out of that bubble of not having and places you in a position of realizing what you truly do have, the power to make a difference. At the end of the day you still may have issues with your family members, still dealing with your health and friends who may not be who you want them to be, but there's therapeutic value in helping others. And from my experience of volunteering you always make a new friend who is also giving their time.

HIV may have taken so much for you but show it you have the power and give back to those living with HIV and make a difference not only for someone in need but also yourself! Give back to HIV!

On Bended Knee

I have a condition that most who know me are aware of but don't understand. In fact I don't understand it myself. I'm not talking about my HIV status but something that has affected me for the last three years.

I can't bend my knee.

It started in my right leg and the first time it happened I thought it was just my leg falling asleep as I would soon gain mobility as the day progressed. Eventually it got to the point where the stiffness I was experiencing started to stay around much longer. I was puzzled to what it was and as if I didn't have enough to deal with already.

I questioned if it had to do something with my current medicine regime. At the time my body was resistant to all medications based on my inability to take my medication on a timely basis. Because of my actions, there was nothing to prescribe as my body was rejecting everything. The only option for me was to inject myself twice a day with a drug called Fuzeon. This involved a needle of which I had no problem with others inject me, but doing it to myself brought out my fears. Luckily or maybe unlucky for me I was eligible for a study of a needless gun called a Bio-Injector where it shoots the liquid medication through your skin by using small carbon monoxide cartridges.

Although I could shoot myself anywhere I chose my right leg as it was more convenient. Sometimes it hurt; sometimes it was like a mosquito bite. Ironically it was around the same time that I started to feel the stiffness in my right leg. Needless to say I stopped the study right away.

Yet three years later I'm still dealing with the after effect. I've been playing Scooby Doo wondering if the Bio-Injector was responsible or was there something else going on. So far in my investigation I've been to three top notch hospitals and in each my case is like an episode of the X-Files. The doctors just can't understand what's going on with my leg. I've gotten diagnoses from polymyostis to 'stiff person syndrome' to “we just don’t know”.

And the worst part of not knowing is that they throw drugs at you hoping it will work; only it ends up as a band-aid. So I have had my experience with Presidone (steroids) to Valium which relaxes your muscles but has an addicting factor. As well as compromising your immune system even further.

So currently exploring hospital #4 and hope I can find answers there. As it's a immune disease it's frustrating, yet I see others in worse shape in me in wheelchairs or using walkers and I remind myself not to complain, Until I find out what's going on we're going all natural with acupuncture, treadmill, swimming and stretching.

Lessons if any to be learned. It’s never about the disease. There are always side effects that your body exhibits. For those who think it's all about taking a pill, think again. The virus branches out and affects other parts of your body and it's not always an easy fix. I may still be able to climb the mountains displayed in the ads, just going to take a little longer.

Yet what keeps me going and not complaining is remembering that no matter what I'm going through, there's always someone worse off than me. So still finding blessings in my discomfort. Taking that into account I may not be able to have a bended knee but I can stand tall in the struggle!