The Truth Will Set You Free

(Warning: This Post May Be Longer than the others)
Lately I have been thinking about the strength of denial and how truth sets us free. I have decided it is time to be very upfront on this blog and write about the exact nature of what Jeff and I are dealing with. Many of you already know the full circumstances. Others may have guessed. Still others might be clueless as to how someone could end up with a serious brain infection that can have such drastic effect on a person that appears to be relatively healthy.

The disease is called progressive multifocal leukoencephalopathy, PML for short. It is one of the opportunistic infections that can invade a body with a compromised immune system, in Jeff's case it is specific to HIV.

He and I were both diagnosed as being HIV+ 8 years ago. Needless to say, it was a very difficult time for our family. We had 4 teenage children at the time and their lives were turned upside down at the news that both their parents had very advanced AIDS. In fact when we went in for our first doctor's appt, the attending nurse said she didn't know how either one of could still be alive.

We never even questioned at that time whether or not to go on the drugs the doctors prescribed. In fact, we volunteered to be a part of a research project and take new drugs that were in the developmental process.

There is no need to go into detail at this point except that we were told the main side effect of the drugs might be fatigue. When it came down to it, fatigue meant that I did not have the energy to lift my arm off the bed. Jeff handled the new drug regiment better than I did. Although a few days after we started taking the drugs, he received a phone call from his dermatolagist telling him that the labs had come back from a mole that had been removed a couple of weeks before. The results were that he had malignant melanoma in addition to the other diagnosis.

To say that was a stressful time for us is quite the understatement because within a few months, we also ended up filing for bankruptcy and losing our dream house as well. Jeff went through surgury to remove the melanoma and was pronounced clean. He recovered well and went back to work. I, on the other hand pretty much lost that entire next year of my life. The effects of the drugs were so harsh on me that I basically could not function.

It wasn't until each of us indepantly cut our drugs in half that I started to find any relief. After 4 years, we made a very conscious decision to quit the drugs completely and just become very pro-active with nutrition and emotional healing. For the first time in years I started to feel healthy again. Jeff too did extremely well. After about 6 months we had our blood tested again and it showed there was no sign of progression of any disease. We were thrilled. As far as we were concerned HIV was no longer an issue in our lives.

Then in July or 2004 our 21 year old daughter Emily passed away suddenly due to a prescription drug interaction. It set us up for an emotional roller coaster unlike anything else we had faced yet. I grieved in the only way I knew how. I felt all my emotions to the extent I needed to, I expressed those emotions in an appropriate way, and then I let them go. Jeff on the other hand worked. He worked hard and his immune system started to shut down little by little.

His father passed away just a year later at the same time he began work at a new job. Once again Jeff just worked hard. Anything to numb the pain of his losses. There were also other emotional issues that worked their way to the surface of his body. But he would not listen to his body or the messages it was sending him. Eventually those messages were to loud to ignore any longer and he ended up in the hospital with ulcers that were eating away his esophagus. It was still hard for us to admit the truth, that this was somehow related to HIV. We never deliberately tried to deceive people, but in in our minds that was in the past and did not have any bearing on his current health status.

It's funny looking back on it now, because of course we knew it might be related to the HIV, but oh, we didn't want to believe it. We wanted to believe that we had beaten it once and for all despite that fact that the medical world says that this disease is incurable. We have a belief that means it is curable from within.

We do not know what the future holds. We only know that much about this disease has to do with an emotional component. Jeff is back on a new regiment of HIV drugs. We do not want to be foolish. Nor do we want to just assume that the medical profession knows all there is to know.

We do see miracles every day. The fact that this has only strengthened our marriage rather than destroyed it is a miracle. We still expect more miracles in our lives. A few years ago, PML was a sure death sentance. Today, we are full of hope.

Each day of our lives is an opportunity to create joy. We try our best.

I will probably post more about this later on. But for now, I felt it was important for this blog for the readers to understand the truth. Because the truth truly does set us free.