From Tragedy to Triumph
by Gayla Baer
Several years ago I found evidence that convinced me that my husband at that time was having an extramarital affair. I began working aggressively toward a divorce. I promptly began sleeping in a separate room from my husband, with no intimacy between us. I needed to know in my mind and heart that I could provide for our twin boys, then age 3, and myself. Following three months of bartending, I was prepared to take a stand and ask him to leave. The night that I asked him to leave, we had a terrible fight, and I felt physically and emotionally abused. I refused to let him sense my fear. I simply told him, “I’d rather die than live one more day in this marriage”.
Once my husband had moved out, I made a doctor’s appointment to be tested for sexually transmitted diseases. The relief that poured over me when I heard the results were all negative or inactive was overwhelming. I realized I had escaped that marriage with little more than a bruised ego and a bout with cervical dysplasia two years prior. My life would go on and did.
I met a wonderful local man whom I would date for a year and half and found myself in a wonderful career as a buyer for a convenience store chain. Just the antidote for what my emotions needed at that time. My relationship with this man was one that had grown intimate. For the next year and half I would live my life as normal because I was in fact disease free, only battling recurring urinary tract infections time and time again.
June of 1999 would put an end to that belief.
I had woken one June morning and was preparing for a road adventure to a race in Ohio. Being the feminine sort that I am, I had picked up a line of feminine deodorant products and chose to use them that particular day as it was going to be sizzling hot. While at the race, I could feel pains like I had never experienced before. At the risk of being too blunt, I felt as if I were peeing razor blade. I was sure I was having an allergic reaction to the products I had used that particular morning.
First thing Monday morning, I called my doctor and explained what had happened and the physical symptoms I was having. He called in a prescription for a steroidal crème to help with the allergic reaction. Three hours after applying the crème, things worsened. My urinary tract closed off entirely, and more intense pains were consuming my entire body.
Tuesday morning I called my friend at Planned Parenthood where they were able to see me right away. I drove to their office only seven miles away, but if felt more like a thousand. Upon examination the physician told me that I had herpes. I sat there in disbelief as I had been tested and the tests were negative. The only other answer was, in my mind, was that I was being cheated on yet again.
As soon as I could get my prescription for acyclovir filled and get home, I found myself searching for answers on the Internet. I needed to know how to stop this pain. I could care less about the diagnosis at this point; I just wanted the pain to stop. This is when I found a chat room with real people. People who were living with the virus and who really knew the pain that I was feeling.
One woman in particular took me under her wing and told me all the things that I could do with things that I should have in my cabinets to help ease the pains of this seeming nightmare I had just embarked upon. To this day, Patsi is my hero. I don’t think she will ever know just how much she gave me that night. She didn’t just give me advice; she gave me wings and she life. The beginnings of my life as I now know it.
The next year would be such an amazing turn of events. For nine months I read every piece of information I could get my hands on. I dedicated my spare time to helping the newly diagnosed, just as Patsi had done with me. In some way, I felt as if that was the best way to repay her for all she had given me.
While setting in those chats I developed some very deep friendships. These friendships spawned the first social gathering that would take place in Atlanta in February of 2000. I immediately started making plans to attend since this was after all the hometown of my personal hero, Patsi.
The event was scheduled to take place late February. Eager to attend, I had everything lined up. The morning of February 8 would bring about an abrupt change of plans. While preparing to head to my office, I stepped on a patch of ice and broke my ankle in two places and sprained my wrist severely. Plans of course changed. I was not going to Atlanta.
On the night that everyone was at one members loft, I was given the number to call to speak to all my dear friends. The phone was passed around and my friends made me feel as much a part of the event as they could from so many miles away. Through my tears, Patsi’s voice rang like an angel. She said, “If you have a party we’ll come to you”. I could hear the cheers in the background and knew this was something I wanted to do for them. The ones that had kept my spirits up over the months since my diagnosis. With that idea the First Indy Gathering was born.
In my excitement I began making preparations to host a party for about 30 people. As word spread, the guest list grew in number. Here I was, one of two people I knew in the state of Indiana with herpes and I was planning a party for over 300 people. How was I ever going to pull this off?
Offers began to trickle in. The coordinators of the local HELP group had heard of the event that was to take place and just as the shepherd’s in the Christmas story, they came and offered the greatest gift, one of help. It was at this time that Indy H Friends was born. My Co-founder’s and I were the only ones in the social community at the time, but amazingly enough the numbers began to grow. News of the Indy Gathering was spreading, tales of the new team that was taking control in Indiana, was spreading.
News had traveled to as far away as England and the California coast to a little organization called The Antopia Herpes Network. I received an email from Anthony Mathews requesting that I call him in regards to the event that he had heard about. I did. While talking to him, he stated that his partner, Marisa would like to attend. I was thrilled that she wanted to attend this event that was taking place here in the simple heartland of the U.S.
The Indy Gathering brought together people from all over the world. Some newly diagnosed, some who have lived for many years in silence. For the first time, everyone felt “normal”. I don’t think there will ever be words that can truly describe what took place that particular weekend in June. It was far more spiritual than words could ever explain.
Marisa returned to California telling AJ to call me and make an offer. AJ phoned and asked what would it take for me to quit my job and come to work with Antopia full time. I was overwhelmed by this offer and accepted it. That was a year and half ago and a decision that I have not regretted even once.
Just as Patsi helped me in the beginning, I am now able to take that same knowledge and faith and help others.
Since going on board with The Antopia Herpes Network, I have taken my knowledge, my position with Antopia and as one of the founders of the largest, most active social support group in the country and helped form as many as 52 other groups across the nation. Membership has grown from nearly 800 to just under 25,000 members on MpwH, the personal ad site owned and operated by Antopia.
Today I look in the mirror and see an entirely different person than that of three years ago. I am stronger, more educated, more selective in my potential partners. I have chosen to use Herpes as a defining factor in who I have become, not of me as a person.
I currently take suppressive therapy and have chosen not to limit myself to dating only those who have herpes as well. I simply use herpes as a powerful tool to help determine if that man is a person I choose to explore further. By divulging my situation to another, I can clearly see if they are deserving of me. Are they educated? Are they willing to become educated? Are they judgmental or are they understanding? Clearly those immediate reactions will set me on a path of knowing the type of person I am looking at.
Admittedly, even the seemingly strongest people become vulnerable at times. I did. I found myself very lonely and easily lured into a relationship that resulted in a very brief second marriage. That is a story perhaps for another time. But seeing the mistake that had taken place, so shortly after, I was able to escape that situation and move on. Limiting your options and feeling that you have to “settle” is never the answer. It is up to us to reach deep into our souls and allow our psyche to make peace with the virus that hides within. Once you achieve that inner peace, the world is yours for the taking.
The most important message that I could give anyone who might be reading, is to realize that you are no less a human than you were before you were diagnosed. You simply have an issue that needs to be addressed. Everyone in today’s society has issues. Herpes is no different. Certainly it may limit your potential partners now, but those who are not accepting of the fact you have herpes, might have been so narrow minded as to have found as much fault in you if you bit your nails or would squeeze the toothpaste from the wrong end. Do not assume that herpes would be the only defining factor in why things would not work out.
As you can clearly see, my story of living my life with herpes is not one of tragedy but of the truest triumph.
I have chosen not to let herpes define the person I am, but rather the person I choose to be. I have taken control, and herpes will not win.