Life with AIDS
A deadly infection and the private perseverance of a husband and wife.
by Jenny Miller*
I’m glad I found out in the summer. I wore sunglasses a lot and could cry without being noticed.
I would go on my daily walks . . . and cry. Mow the lawn . . . and cry. And no one ever knew. Eight years later, they still don’t know. Oh, I’ve broken down and told a few people — and been sorry I did. People can’t really help. They can’t keep up the day-to-day care required to support someone who lives with AIDS that long. Especially when that someone looks perfectly normal.
When we found out, I thought I would be a widow in a year. Ben’s* CD4 count was as low as it could go: zero. And his viral load was so high: 880,000. I remember holding his hand tightly when the doctor told us the counts and seeing the rims of his eyes turn red with suppressed tears.
It was our twentieth anniversary. We were leaving for Jamaica in two days, and I had to be tested before we left. I wouldn’t get the results until we came back.
It was a long ten days — the first time I ever went to an all-inclusive resort and lost weight. Food had no appeal or taste.
Message from God
I went to the library before we left, checked out a book on the immune system, and read it by the pool on our vacation. My husband slept a lot. I looked for anything positive to tell him.
One day we were sitting by the pool, and a little group of Jamaican singers were performing. They strolled up to us and sang, “Don’t worry, be happy.” The group leader was a tiny old man — his only tooth gold. I stared into his eyes wondering if God was sending a message through him — that it would be OK.
When my test came back negative, I told Ben that I could put all my strength into fighting for him. We realized that his one-time exposure had happened fourteen-and-a-half years prior. During that time, we had had our only child.
I began to clearly see God’s protecting hand over it all. If we had found out earlier about Ben’s condition, we would have never had a baby. Unimaginable! If condoms hadn’t been my chosen form of birth control (something I have since heard is unusual for married couples), I might have gotten the virus. We used to joke when we decided to have a baby that it took one try, and I was pregnant!
Also, Ben didn’t know the diagnosis until the AIDS “cocktails” had been developed, so he didn’t endure the trials and errors with drugs that people in the eighties went through. Those people built up resistance to the drugs.
The combination of medicines Ben started on almost immediately brought his viral load to undetectable, and it is slowly but steadily raising his CD4 count. Also, the doctor told Ben that because he was exposed only one time — and so early in the history of the disease — his infection was probably a more pure strain. Multiple partners pass on built-up resistance to various drugs. It can get very messy.
In addition, I knew right away where to turn for information — not only on the disease and drugs but also on natural healing, vitamins, and herbs. Ben actually takes more vitamins and herbs than he does pills, and he gets fewer colds and illnesses than almost anyone we know!
Ben is doing well eight years later. But, of course, AIDS has changed him; it has changed us. I latch on to articles that say AIDS is becoming a chronic illness, but still feel sick to my stomach when I read, “AIDS, always fatal.”
For a long time, Ben woke up at 3 a.m., unable to go back to sleep. He would go downstairs to his keyboard and write music. Beautiful music. Christian songs. He’s in two praise bands, and people come up to him after they hear one of his songs and tell him that the words spoke to them.
Hunger and thirst
I started a seven-year Bible study and began to teach a couple of adult Sunday school classes. In one of my studies, I read Deuteronomy 8:3: “He humbled you, causing you to hunger and then feeding you with manna [the Bible].”
I realized that’s exactly what happened to me: I really do thirst for the Scriptures. I learn so much every day that helps me endure and takes me beyond our situation. I listen hungrily to Christian radio programs. The ones about trials speak straight to me.
Good out of bad
I’ve learned from the story of Jacob that actions have consequences and that while God will almost never remove the consequences, He can turn them into blessings: “In all things God works for the good of those who love him, who have been called according to his purpose” (Romans 8:28).
Praise in pain
I’ve discovered that it pleases God when we can praise Him in the midst of our trials. This is harder for me, since most people don’t know what I’m going through and can’t see how well God helps me cope. It sets me apart from people somewhat but makes me depend more on God. I wonder if He’s setting me apart as He did the Israelites in the desert until I learn what He is teaching me.
I am trying to ask, “What does God want me to learn from this?” and “How can I honor Him?” I see in the book of Habakkuk that when the prophet prayed to God, his situation didn’t change. The Babylonians still took Judah into captivity. But in His conversation with Habakkuk, God removed the prophet’s doubts and fears.
So my prayer life is stronger; I talk to God constantly.
God is everything to me, and I try to thank Him for everything, realizing it could be gone in a minute. But I love the Giver, not the gifts.
It’s still not easy, though. You would think something like this would make you appreciate every minute — not sweat the small stuff. It does for a while, but then you get used to it.
I would say to my husband, “I’m so afraid that you will live to be 90 and look back and say, ‘I wish I had realized at age 40 that I wouldn’t die young and then not have worried so much.'”
All life is temporary.
My husband and I know many people who weren’t sick when he was diagnosed but are dead now. Cancer and car accidents. All those people we took food to and prayed for; nobody knows about us. We haven’t been able to share our pain and fears — or even get a pat on the back for how well we are coping. It’s hard.
But God asks us to trust Him. He never promised us a smooth ride — only that He’d get us through. We have each other and we have God.
So we go on.
Scripture quotations were taken from the New International Version.