In June my husband Mark and I held our first yard sale fund-raiser to benefit VHL research. Mark and I are committed to helping support the work the VHLFA does to help us live full long lives. Thanks to all the volunteers and contributors who make this work possible!

I want to just briefly recount some of what has happened to me since February 15, 1998. I was a healthy 34-year-old woman, mother of two, physical therapist, active, and leading a full life. On Feb 15 after singing at my church I went home and had a grand mal seizure. After seeing the physician and undergoing tests — a brain MRI, CT scans, ultrasounds, bone scans — my deepest fear was realized. I have the disease that my mother had. The disease is called von Hippel-Lindau, abbreviated VHL. My mother died at 37, her Mom died in her 40’s, my grandfather died young. Naturally, I was scared.

The disease causes tumors to grow mostly in the brain and spinal cord, but also the kidneys, pancreas, the retinas – every place that you don’t want a tumor. The scans revealed that the first thing that needed to be done was brain surgery. I had brain surgery on March 12, 1998, and kidney surgery in May.

As you can imagine, getting all these diagnoses at once was pretty hard. By the time I was finished I had eight tumors. In only a few weeks I went from thinking I was healthy to having eight tumors — it was catastrophic and I barely survived. But I recovered from those surgeries, and had another kidney surgery in October 1998. I had some catching up to do, having avoided the necessary preventive maintenance for VHL for all those years.

People ask me, and I had to ask myself, How does one go on? How do you survive something like this? It shook my image of myself, and challenged my faith as well. So I had to ask, what does God promise us? Does God promise us health and wealth? (I have to admit that I probably had thought so.) Does God promise us smooth sailing along life’s oceans? That wasn’t my situation! I was in trouble! So what was I going to hold on to?

I grabbed my Bible. At every CT scan, every MRI, I read my Bible. I went to the Psalms, because the Psalms gave me a voice for what I was feeling. David in the Psalms always cried out "God! Help me! Answer my prayer! Rescue me!" He gave me a voice for what I was feeling and I was able to pray through the words of the Psalms.

The Bible is full of stories of troubled times and troubled lives. But I have to tell you something: I don’t like trouble! I don’t want pain! Yet in spite of those fears, I found hope in God who is our steadfast help in time of trouble. "Thou hast been my high tower, and a refuge in the day of my distress. O my strength, unto Thee will I sing praises; for God is my high tower, the God of my mercy." (Psalms 59:17-18)

So did God take the tumors away? No, they are still there. So what does this refuge and strength mean? Well, I started looking at it in a different way. God gives me joy in my sorrow, helps me to see the best in my situation. He helps me to be thankful for what I have. That in itself is a miracle.

I have had five surgeries since March 1998. The first surgery was brain surgery March 12, and I have to say that brain surgery was a "no brainer" – I really mean it! It was nothing! You think that brain surgery is the worst thing anybody could have. But honestly, it went well -- the pain was minimal, I was in and out of the hospital in five days, no deficits whatsoever. The only problem I had was with my hair.

Right before the surgery, I was on the stretcher and getting prepared, and the brain surgeon came in and said, "Deb, we’re going to shave half of your head. You might not like how that looks, so I’m going to give you 20 minutes to think about it. You can have your whole head shaved if you want. I’ll come back for your answer."

I’m having brain surgery in 20 minutes, and he wants me to make a decision about my hair! So Mark and I talked, and I thought half of my head shaved might look a little punkish, and I wasn’t into that, so we both talked and we agreed that I would have the whole head shaved. I thought, "I can do the Demi Moore thing — you know, GI Jane – I can do that!" So the surgeon came back and we told him to go ahead and shave my head.

After the surgery I woke up and there was a turban on my head. I felt around, and I felt some hair, like a tail! And I thought, "What kind of haircut did they give me in the operating room! I’ve got a tail!" I was out of my mind. Of course anesthesia and narcotics weren’t helping! I kept thinking, "Can someone get me a pair of scissors? I have to cut off this tail. This is awful — a bald head with a tail!" The nurses assured me they could see some hair under the bandage. The surgeon had decided not to shave my head after all. He only shaved a little horseshoe on one side.

So brain surgery went well, but kidney surgery was totally different. My surgeon at Lahey clinic had also had kidney surgery himself. When I was complaining about my pain, he said to me, "Does it feel like a bull has his horn in your side and has you pressed up against the wall?" Yes," I said, "that’s exactly what it feels like!" Five days after having that first kidney surgery I started to bleed internally and had to be taken back into surgery. That put me in for another seven days for a total of twelve days. Eleven of those twelve days I didn’t eat anything or drink anything. It was a hard time for me. After that second surgery I felt like there were two horns in my side. I felt like I was never going to get out of the hospital!

When I left the hospital I weighed only 95 pounds. I couldn’t eat and I was still in a lot of pain. It was difficult. But there was still joy in the midst of all that. For one thing, I got to play gin rummy with my Dad almost every afternoon. I love my Dad, and I love to play gin rummy. And I got to watch some re-runs of Gilligan’s Island and Happy Days at 3 o’clock in the morning when I couldn’t sleep. How much more fun can a person have!

I met some spectacular nurses that I never would have met. I had some great talks – those are precious memories for me – I was able to share my faith with some of them. I think the best thing of all was getting to know my surgeon, Dr. Libertino. He’s the Chief Executive Officer (CEO) at Lahey Clinic and I’m the luckiest girl in the world, because I have the CEO of heaven and the CEO of Lahey on my case. Dr. Libertino is a very gifted man and I enjoyed his company. Spending time with people like him, being loved and cared for, showed me the silver lining in the midst of my suffering.

One bit of scripture kept coming to me during this time, a verse from Hebrews 13:5, that says "Never will I leave you, never will I forsake you." When this kind of thing happens to you, you really do feel lost and forsaken by God. My daughter Jessica just happened to be memorizing that verse for Pioneer Girls while I had my brain surgery. She wrote it on a piece of paper and put it on my board at the hospital so I would read it every day. In May during my hospitalization for kidney surgery Jessica was again learning this verse, this time for the Pioneer Girl mother-daughter tea. I was in the hospital and could not be there, which was very hard for me. Just before Jessica went on stage I received a phone call and I heard my daughter live, reciting her verse before the group: "Never will I leave you, never will I forsake you." I think God was trying to tell me something.

Another way that God sustains us is through the people around us. I have felt this deeply through my church. I have never before felt such support. This is why you need your friends around you. I received 3-5 cards every day for at least four months. I had meals for three weeks after each surgery. People I had never met across the country would write to me and tell me they were praying for me.

I have struggled with loneliness all my life. I was raised as an only child. My parents were divorced when I was seven, and my mother died when I was 17. I’ve had an emptiness in my heart for a long time. And I have to say that I haven’t felt lonely for a minute since I had my diagnosis. It’s unbelievable. My community of friends has just enveloped me. And I would say to you, please don’t ever go through any burden without the support of your own spiritual community. I have spent twelve years of my life in churches, singing and ministering and making relationships that God turned around and gave back to me during these trials. And there was no other way that I could have made it through all of this. So "thank you" to all of you who were part of that.

We all need this kind of support at times in our lives. Are you making yourself available? There is someone in your life who is really hurting. Maybe it’s not as dramatic as my situation, but there is someone that really needs you and God is expecting you to be there for them. Sometimes people tell me that they don’t know what to do when someone’s ill, don’t know what to say, don’t know how to handle it. Well, I’ll tell you a couple of things.

1) Be available. Call and check in. You can leave a message on the machine saying "I’m thinking about you today."

2) Send a card. Some people sent me a card every week.

3) Make a meal for that person

4) Offer free babysitting if they have children

5) Maybe just sit and listen.

I have had to face my own mortality in the last few months, and that’s been very hard. But my faith has given me peace and given me joy. After my mother’s death, when I was 17, I had a real hunger in my heart for God. I was not raised in a religious home and I didn’t know how to find God. I found an old Bible. I looked up Psalm 23. "The Lord is my shepherd, I shall not want." I memorized it because I thought if I could have God’s word close to me, then I could know God. Well, I have found Him to be everything He says He is. Hopefully I will live lots of years and raise my daughters, but I have to come to terms with the fragility of life. I am confident that He is going to be there on the other side. He is there for all of us in the storms of life with his sustaining power and his never-ending presence.

"God is our refuge and strength, a very present help in trouble. Therefore will we not fear, though the earth do change, and though the mountains be moved into the heart of the seas. . . . The Lord of Hosts is with us, the God of Jacob is our high tower." (Psalms 46: 2,3,12)

As printed in the VHL Family Forum 7:3, September 1999. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory