Finding Hope in God when you are at Risk of a Degenerative Disease

What do you do when you are at risk of your health failing? How do you remain hopeful in the face of a degenerative disease, one that is fatal?

I’m taking deep breaths before I write today. I’ve sat on the fence on whether to use my platform to talk about this. But I think awareness is often a good thing, and if today’s post helps someone else, it’s worth it.

There are many diseases out there, and plenty of degenerative ones too. And in my family line we’ve been faced with the reality of carrying the Huntington’s Disease gene.

If you’ve never heard of Huntington’s disease, it’s because it’s a rare disease. It’s described as a cross between ALS, Alzheimer’s, and Parkinson’s. It’s a slow, degenerative disease that progresses over 15-20 years. If you have this disease you’ll eventually lose your ability to walk, and to talk. It’s always fatal.

If your parent has the gene you have 50% chance of inheriting the gene and dying of the same thing.

There’s no cure, and really, no good treatment.

All my memories of my grandma include her being sick with HD. I never had the chance of knowing who she was without the illness.

My mom carries the gene. Which means, I have 50% chance of having HD as well. I don’t know if I have it because I’ve chosen not to be tested.

About 90 percent of those at risk choose to not be tested for it because there’s no cure and it’s a heavy burden to bare. Many people, myself included, are not sure they can handle the knowledge of a positive result. While I may get tested one day, I need to be able to get out of bed in the morning for my kids, and I worry about how I would react if I knew that I had it.

You see, people with HD often die due to pneumonia from aspiration because they struggle with swallowing their food properly. But, the #2 cause of death for those with HD is suicide.

I’ve always known I’m at risk for the disease, but it’s something I haven’t given too much thought about. Blame it on my youth, it was one of those, “some day this could happen” kind of thing.

But often the onset of symptoms is between 30-50. I’m 39. And suddenly I realized if I have it, my time is limited.

In our family we are very fortunate to continually have late onset of the disease. My grandma lived into her 70s. For those with HD, living till their 70s is not super common. My mom is not showing symptoms at this point at 58. And I am so thankful for that. I’ve read countless stories of kids growing up with their parents having it, and trying to manage their childhood with a very ill parent.

But the gene can change from person to person which means just because my grandma had it hit late doesn’t mean her grandkids, if any of us have it, will be as lucky.

So, what do you do when reality sets in that your future might be cut short? What do you do when you realize you have a 50% chance of having a future that involves complete reliance of others to take care of you? To eventually not even be able to have a voice to talk to those around you? To be wheelchair bound? To struggle just to swallow food?

I wrestled with this at Christmas time. It hit me what this all really means. And I spent many days crying. I worried about my future. The future of my children who would be at risk if I have it. The future of my husband who may spend decades taking care of his sick wife.

What if I couldn’t read my Bible one day? What if my mind is completely gone eventually? What if I have to go into a home?

And on top of that with this knowledge I found myself laying in bed wondering if that flutter in my muscle is a twitch and if it’s a twitch is that a symptom? Or when I forget what I was looking for in my cupboard, was that a symptom? When I felt sad, did I just feel sad like people do at times, or is it a symptom? If I was irritated with something was I being irrational and did that mean I had Huntington’s?

I had no choice but to go to God. These questions were going to slowly kill me before any disease did if I didn’t get on my knees before the Lord and cry out to Him, because there’s no way I could live every day of my life in fear of HD.

DOES GOD MAKE MISTAKES?

We know this answer. God doesn’t make mistakes. Which means my life, HD or not, is not a mistake. My mother’s life, my grandmother’s life, it wasn’t a mistake. Our lives don’t have less meaning because we either carry or in my case, could carry a faulty gene.

We didn’t do something to cause it, and while we may feel that one day we may be a burden to our families due to the care that will be required, it all has purpose. That can be hard to understand, but I believe God can use everything – including a degenerative disease – for His good. Disease is here because we live in a broken, fallen world, but God can make beautiful things out of brokenness.

I spent a lot of time walking in those early weeks of wrestling with this. On one of my walks a thought came to my mind. Jesus only lived to the age of 33. His ministry started at 30. That means His ministry was only 3 years. And yet He changed the world.

Obviously I am not Jesus – I can’t change the world in ways He did. But my purpose is to serve and glorify Him. and no matter how many years we have on this earth, we can do that. His purpose for our lives are meant for how many years He gives us.

The truth is, none of us know how many days we have on this earth and so we need to use our time wisely. Live life to the fullest. Serve God and love our families. Work hard and play hard because tomorrow isn’t promised.

BUT HOW DO WE DEAL WITH THE FEAR OF YEARS OF SUFFERING?

I wish I could say I no longer fear this, but I’m human. However, it’s not sitting like a dark cloud every day over me. The truth is, we’re all going to suffer some time in this life. Some suffer more than others. Some suffer longer than others. But suffering is part of life.

The Bible talks a lot about suffering. And it talks about having joy amidst the pain. That isn’t an easy one to do, but I believe we can work at finding joy in suffering.

Here in North America we do absolutely everything we can to NOT suffer. We want to be comfortable at all times. We take supplements and do special diets to try and be pain-free. And I don’t think there’s anything wrong with trying to feel our best, but to expect a life without pain isn’t realistic.

One of the things I did in the midst of struggling is look up videos of people with HD. I needed to know there were people out there who struggled with the disease but found joy. Well, I found it. One super memorable video for me was a man whose health was deteriorating, and yet he talked about the goodness of God. Another story that encouraged me was of a man with HD running 5k races even though he couldn’t even run in a straight line anymore.

If you get sick one day you may not be able to do all the things you once did. But that doesn’t mean you won’t be able to do anything. If, even in the suffering we can find joy in the things we ARE able to do, I think it’ll make handling an illness that much easier.

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me -Psalm 23:4

God will be with you every step of the way in your suffering. We don’t need to fear. Yes, if you have a degenerative disease it’s going to get hard in ways many of us can’t relate to. If I one day develop HD it will be a heavy burden to carry. But the blessing is that I don’t have to carry it alone. God is the one who will strengthen me.

In the end, I could end up without the gene, but I have two brothers which means out of 3 of us, the chances of no one having it are extremely low. Most families with multiple kids generally have at least one, sometimes all of the kids who carry the gene. It is not done with our family. And many other families out there struggle with the same thing. Or, if it isn’t HD it’s another genetic disease.

But today, today I don’t have any evidence of HD. And so, I will try to live my life with perseverance and hope. I will hang on to hope that God has a plan for my life, no matter what the future holds. Your life wasn’t a mistake, no matter what your genes say. God wanted you to be walking around on this earth and He has a purpose for your life.

So the question is, what are we doing in our lives each day? Are we loving our families? Are we serving God? Are we embracing the small moments?

I know I want to.