February 2012: Reality sets in…

Quite Positive - This is my life after the test came back.

On Wednesday, February 1, 2012, I was released from OU Medical Center in Oklahoma City and walked away a ‘free man’. I had been in the hospital for more than a week.

The sheer joy I felt as I walked through those sliding glass doors on the way to my mother’s car is absolutely indescribable. I kept thinking, “The nightmare is over.”

I was no longer sick — in fact, I felt better than I had in at least two months. I no longer had to wait for nurses to satisfy simple requests. There was no more waiting on news from doctors. I was in my element again. I was on my own and free to resume my independent life.

It may sound terribly cliche, but all I could really think about at the time was how much I was craving a greasy hamburger, huge order of french fries, and vanilla malt.

Only minutes after driving away from the hospital campus, I had completely returned to my former state of normalcy. As happy as that sounds, the simple truth is that I was in complete denial about the seriousness of my condition.

What I would soon find out was that the nightmare wasn’t over… it was just beginning.

Denial

If there is one thing that I can say about denial, it’s this: it’ll help you through tough times! Just ask Tom, my boyfriend at the time.

I had spent Wednesday night recuperating at my parents’, but by Thursday evening, Tom and I were back at to normal… completely normal… as if nothing had happened.

I met him at his apartment that evening.

The truth about what happened that night, however, is that we didn’t have a deep, serious conversation about my infection as most people would have expected. Nor did we cry or comfort each other, or discuss about how this life-changing disease had impacted my life (and possibly his). He didn’t go out of his way to support me or tell me that everything was going to be okay.

That night, Tom and I did what we always did: enjoyed a nice dinner, sat on the sofa and watched movies, had seriously hot sex, and fell asleep.

You heard me right… we had sex. We both knew I was HIV-positive. We both knew I was at the most infectious stage of my illness. Yet, we did it anyway. Tom and I had seemingly forgotten the eight-day medical Hell that I had just been through and ignored the risk we were taking with his health.

I didn’t want to admit that my normal sex and dating life had come to an end, and neither of us wanted any change in the relationship that had been going so well prior to my hospitalization. We were clinging to the past, oblivious to the reality in which we were now living.

I left Tom’s house early the next morning to drive the 120 miles back to western Oklahoma for work.

Working in a small, tight-knit office can be pretty tough even when everything in your life is normal. Everyone knows your business, and everyone talks about it to everyone else. There were no secrets in my office.

I got along with everyone in my office, and thought highly of each of them. We were all ‘friends’ of sorts, and all enjoyed honest interactions with one another. As close as I was to my coworkers, however, I wasn’t ready to tell anyone what was going on. At that point, I wasn’t even sure that I wanted to tell them period.

I hadn’t come to terms with my HIV diagnosis myself, and couldn’t imagine the thought of having to deal with others’ reactions at that point in time.

Yet, the fact remains that I had been missing from work for the better part of two weeks. My coworkers were full of questions. They wanted to know what was wrong. I did the only thing I could think of… I lied.

“I just had a really bad virus,” I explained.

“They’re putting me on some powerful medication next week and I should start to feel a lot better.”

Their responses seemed to be awkward and disbelieving. They knew there was more to the story, and I knew that they knew. My smiling assurances that everything was ‘okay’ covered feelings of nervousness and helplessness. I simply wasn’t prepared to go any further with the real explanation at that time.

I finished out the day with a sense of normalcy that I hadn’t felt in a while. It had been nice worrying about clients and deadlines again for a change.

After the work day had ended, I turned right around and drove 120 miles back to Oklahoma City. I didn’t even take the time to stop by my apartment before leaving town.

I stopped by my parents’ house for a few moments before heading back to Tom’s place. It was a night like any other: dinner, movies, and sex yet again.

That Saturday, I split my time between Tom and my parents. There’s not much worth mentioning about this weekend except what was going through my mind.

I was still in denial about the seriousness of my condition, as was everyone else around me. It hadn’t yet ‘kicked in’ that I would be spending the rest of my life trying to figure out how to pay $3,000.00 per month in prescription costs. It hadn’t yet hit me that I’d be spending the rest of my life defending myself to everyone that found out about my HIV status. It hadn’t yet hit me that I’d be spending the rest of my life getting rejected by guys, avoiding sick people, and lying to employers and coworkers. I had no idea the extent to which my life would soon change.

The only specific thing I can remember thinking that weekend was, “I still feel like the same person that I’ve always been.”

And why wouldn’t I feel that way? I was no longer sick. I wasn’t yet taking any medication. Only a few people around me even knew that I had HIV, and none of them were talking about it.

I spent Sunday with Tom and — as per my usual routine — awoke early Monday for the drive back to work. I suppose it during the course of that boring, westbound drive along Interstate 40 that the magnitude of my situation began to set in.

Reality

It was Monday, February 6, 2012.

As I trekked the 120 miles back to western Oklahoma, I started thinking about everything that I had been through the previous few weeks… and I started to wonder about my future.

What if I didn’t adjust well to the medication? What if the medication didn’t work at all? What if I got sick while working in western Oklahoma, where medical resources are limited and there are no physicians specialized in HIV care? What if everybody in this conservative little frontier town found out about my condition and I became an outcast? An endless list of frightening possibilities was buzzing through my head.

It was then that I made my first difficult decision resulting from my diagnosis… I would be moving back to Oklahoma City.

I arrived at my office that morning shortly before 8:00 A.M. I said hello to my coworkers and went about my daily routine.

My boss — the owner of the company — arrived around 11:00 A.M. Shortly after Noon — when I noticed that he had a free moment — I stepped away from my desk and asked for a moment of his time.

As with the rest of my coworkers, I had always enjoyed a friendly and open working relationship with him.

I plopped down into a chair that faced his desk, and he asked me what was on my mind.

“It doesn’t take a rocket scientist to figure out that I wasn’t in the hospital eight days for a cold,” I said.

A concerned look washed over my superior’s face. He nodded, signaling that he understood.

“I’m very sick.”

He replied with an escalated level of worry. Yet, he chose his words with obvious care. I sensed that the conversation was making him nervous.

“Is this something that you’re going to recuperate from soon, or is this something that will last the rest of your life?” he asked.

I paused, casting my gaze to the floor. My hands began to tremble, and I struggled to answer his question.

“It’s… it’s something that’s not going to go away. It will get worse with time.”

“Do you mind if I ask what’s wrong?” he inquired.

A few moments of silence passed, before I lifted my head, looked him in the eyes, and began to speak.

“I…”

I couldn’t get the words to come out. After a few moments of dead silence, I continued. My voice broke and I could feel my eyes beginning to water.

“I have… I have HIV.”

I don’t know why I told him. I was under no legal obligation to do so. I suppose more than anything, I felt bad about the resignation that was about to come. I wanted him to understand that the decision had nothing to do with the company, him, or my coworkers.

He was shocked, of course, but took the news well. I educated him on the facts of the disease, my prognosis, and how I found out. I offered optimism, telling him that I would likely live a long, normal life once I started antiretroviral drug therapy.

He was satisfied with my detailed explanation, though solemn.

I informed him of my decision to leave the company, and he understood completely. I told him that I didn’t feel comfortable in western Oklahoma, and wanted to be closer to friends and family. We agreed that April 1, 2012 would be my last day.

I also informed him that I would need to leave early the next day for an appointment with my HIV doctor.

I walked out of his office that afternoon realizing that life as I used to know it no longer existed. The denial was gone, and reality was finally beginning to set in.

That decision was the beginning of what would become a very dark post-diagnosis period for me.

Loneliness

I left work that day miserable, realizing that the stability I had once enjoyed in my life was now gone. I’ll never forget the moment that I walked into my apartment that afternoon. It was about 5:30 P.M. I hadn’t spent the night in my apartment in nearly three weeks.

As I strolled through the door, I was taken aback by the cold, dark living room in which I found myself standing. It was lifeless and devoid of character. Something about it was poignant. It almost seemed a stark reflection of how I was feeling at the time… alone.

My mother and father were 120 miles away, as was Tom. I didn’t have any close friends or family in the area to whom I could turn for support. Sure, all of that would change come April 1, but what the Hell was I supposed to do until then?

I was depressed, uncertain about the future, and questioning just about every single decision I had ever made in my life.

Prescriptions… Finally… Sort-of

The next day, I worked until Noon and drove to Oklahoma City yet again for my appointment with my HIV doctor. It went well… initially.

We covered the do’s and don’ts involved with living life as a HIV-positive man: do use protection if I decide to have sex, don’t miss a dose of my medicine once I start it. We reviewed my CD*4 count and viral load numbers and did more blood work. My physician’s nurses and assistants asked me dozens of personal and sexual questions that made me blush.

But other than my low white count and HIV status in general, I was in good health.

I was prescribed three medications: Prezista and Norvir (proteas inhibitors), and Truvada (an NRTI – nucleotide reverse transcriptase inhibitor).

My dosage would be as follows:

  • 1 Prezista and 1 Norvir each morning
  • 1 Truvada in the afternoon
  • 1 Prezista and 1 Norvir each evening

… for the remainder of my natural life.

As my HIV doctor handed me my prescriptions, however, she began to ask about my insurance (Blue Cross Blue Shield). She asked if I knew how much it paid on prescriptions, if I had to pay a percentage or flat copay, and if I would be needing financial assistance.

“Some of these medications can be very expensive,” she said.

“If you can’t afford them, call me and I will set you up an appointment with the Case Management office to see if we can qualify you for financial assistance.”

I smiled and nodded in response to her helpful offer, but I wasn’t too worried. I had insurance and a good-paying job. I left her office and took my new scripts straight to Wallgreens.

I knew that the prescriptions would be expensive, but had no idea to what extent. I figured that if they were a couple thousand dollars before insurance, my copay might be $500 at most — I could handle that. Boy, was I ever naive!

After a moment’s wait in the pharmacy, I was hit with the reality of my prescription drug cost. Without insurance, the meds would have cost me more than $3,000.00 per month. After insurance, the copay would be around $1,300.00. There was no way I could afford the treatment without help.

I left Wallgreens — without my prescriptions — and immediately called my physician.

Another Waiting Game… and More Reality

As she had promised to do, she immediately scheduled an appoint for me with OU Case Management. Later that afternoon, I received a call from my case manager.

Although we would need to meet in person the following week to sign paperwork and exchange documentation, she informed me that based on my income, living situation, work situation, and condition, that I would likely qualify for full financial assistance to take care of my astronomical copay. That was a relief!

Yet — as the week pressed forward — my mood continued to deteriorate.

More of my casual friends and acquaintances were beginning to question my recent hospital visit, wondering why I hadn’t yet offered a definitive explanation for my condition. I began to tell more people about my condition.

It’s amazing how many people disappear from your life — or reappear from the past — when they find out you have HIV.

Some people reacted with compassion, asking about my health with true concern. They asked questions about HIV/AIDS, expressing genuine interest and care. Yet when the initial conversation ended, they disappeared. Their texts, calls, and Facebook messages stopped… and they stopped returning phone calls.

I won’t lie, many of them were single gay guys who I suspect had been interested in me sexually. Yet, surprisingly, a few of them were straight friends and former coworkers to whom I had once considered myself close.

And some people that I thought had disappeared from my life permanently suddenly showed back up at my side. Allen — my former partner of seven years with whom I had been somewhat estranged — began calling and texting every day to check on me. Clay, with whom I endured the worst and most hateful breakup imaginable, also showed back up in my life to express his concern and support. Two other old friends with whom I had been estranged for close to 5 years also popped back up — calling, emailing, and texting me.

My social circle was changing at light speed as people found out about my condition. It seemed so unfair.

I felt like the same person that I had always been… in some respects, I even felt better. The malaise and lethargy that had engulfed my mind during my Acute HIV Infection (seroconversion) was gone. I was no longer ill. I felt as if I could run a mile blindfolded. Yet, people abandoned me and judged me based on the utterance of one little abbreviation: HIV.

This chilly week in early February was made even harder by the realization that my lifestyle had been drastically altered. No longer could I jump from job to job, town to town, chasing down better opportunities to improve my career. I would now be forced to make employment moves solely based on the ability to maintain my insurance. The dream of owning my own business was slipping away. I realized that I would need to find other activities in life to fill the void that dating had once filled.

This week even brought a thought to my mind that I had never once considered in 29 years of life: suicide.

“What’s the point of prolonging a life that no longer has any meaning?” I thought to myself.

Through it all, however, I still had Tom. We texted and emailed throughout the day, and talked on the phone at night.

Yet, as the end of this dark, sad week approached, I noticed that our conversations had begun to change. We were no longer talking about movies and restaurants, plans for the future, or our pasts… we were continually talking about my HIV status.

It was just a phase, I thought to myself. As I came to terms with my illness, our interactions would return to normal. I would be proved wrong.

Breakup

After what had been a miserable, seemingly endless week, Friday finally swooped in with what I thought would surely be the beginning of a wonderful visit in Oklahoma City with Tom and my parents.

It was February 10, 2012.

I worked that day, and had been excited since the moment I woke up about being able to spend the evening with Tom. We had made plans to spend Friday and Sunday together.

I finished my work day that afternoon about 4:30 P.M. and went to my apartment to pack a bag for the weekend. I left soon after, and arrived in Oklahoma City shortly before seven o’clock.

After dinner and a brief visit with my mother and father, I went over to Tom’s as had been planned for days.

This night, however, would be different from the ones we had spent together in the past.

Tom and I cuddled and kissed as we watched Twilight that evening, but he was less affectionate and more sexually hesitant than he had been in the past. He spoke less that evening, limiting his questions to ones about my health and HIV status.

I stayed the night, but to my dismay there was no sex. I left the next morning curious and somewhat alarmed.

I spent Saturday hanging out and shopping with my parents, and before I knew it, Sunday had come.

I was growing concerned and shocked with Tom, however. He normally texted me a few times per hour, and called each evening. He had been dead silent since our Friday meeting. I knew he had been spending time with his family, but this was out of character for him nonetheless.

Sunday evening rolled around, and still no word from him. He hadn’t called or replied to my last text. It was then that I sent him a message: “Is everything okay? I am getting the vibe that something is wrong.”

He replied immediately.

He was torn, he informed me. Part of him wanted to be with me, but the other part of him was scared. He had a family. He had obligations to them. He could not risk getting infected. Although he could easily be my friend, he could not see us in a long-term relationship due to my HIV status.

Tom was shaken and upset, but firm in his decision.

Part of me wishes that he had been cheating on me, or had met someone new. At least then I would have been able to come up with something to change his mind. This was the first breakup that I had ever been through where I was bound to blind acceptance without a fight. I had an incurable disease, and that was his reason for leaving.

I had no defense, and there was nothing I could do about it except cry, hurt, and try to move on. I had lost the one bright light that had been guiding me through this darkness.

Monday morning, I returned to western Oklahoma shattered. I would remain that way for nearly two weeks.

Quite Positive - This is my life after the test came back.

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