Learning to be a Worshiper Facing the Goliath of HD

Several months ago, Kenny and I attended a support group meeting for HD families in Tulsa, Oklahoma.  At this meeting we met Wanda Clarke, a wonderful, inspiring woman who is battling HD.  We became Facebook friends and have kept in touch via social media.  Last week, I asked Wanda to be a guest writer on my blog.  Here is her essay.  I am humbled and so deeply touched by her words.  

Learning to be a Worshiper Facing the Goliath of HD

The story of David in the Bible is one of my favorites. Not David the King or Warrior but David the Worshiper. It was David the Shepherd/Worshiper who had no doubt Goliath was going down that day! So with a stone and a slingshot he silenced the taunting threats of a Giant who was used to getting his way. David’s worship made him intimate with His Creator and caused many others to worship God after the battle that day. I have to fight fiercely to be a worshiper. What used to be so easy and natural and one of my favorite things in this world is not so easy anymore. I forget to read my Bible, pray, worship, and all the things that have kept me close to the one I need the most.

My day is wrought with uncontrolled emotions and medication is needed to keep them in check. I continually lose my train of thought, losing words in mid-sentence. They come back to me less often now and there HD is again... taunting me like Goliath in the Bible story. My brain's circuitry is burning out and I can feel it. It feels like what early-onset Alzheimer's must be like, especially when I am searching for a word or thought that can't be found, or when I get lost and call one of my children in a panic. Or simply when sound itself becomes too much to bear. That's when I have to run and hide and escape from the world.

So I isolate myself in my room. It's a place of solace away from everyone and everything. There is loss of concentration and focus with panic attacks almost daily. There are deep cycles of depression that medication can’t bring me out of. These symptoms will only get worse as time goes on if a cure is not found. Five years ago I drove halfway across the country by myself. Now I have to be careful to drive within a very small radius close to home. So...my world is getting smaller with each passing year. I have tremors in my hands, loss of motor skills, (dropping things often), and I lose my balance at times. These are the same symptoms generations before me have experienced. HD has crossed 4 generations of my family line in my lifetime. We now know my youngest daughter is suffering with it as well. Here comes the taunting voice of HD again with this gut-wrenching news and the knowledge that it can cross over to the next generation. My grandmother, father, siblings, children, grandchildren, aunts, uncles, cousins either have or had HD or are at risk.

So...where is the hope in all of this? 

Well…like David I have a long-standing relationship with the Creator of the Universe. My Heavenly Father hears my cries and knows my heart as He does each of us. That brings me great comfort when I can’t concentrate to read or pray or worship like I think I should. He reminds me that He knows ME – He hears the prayers of my heart as well as my lips. Saying Thank you is a form of worship even when I don’t feel very thankful. I have some good days when it is VERY easy to say Thank You Father, Thank you Jesus and mean it wholeheartedly! I have a wonderful church that teaches the Truth of God’s Word. I can’t always get there in person so the internet and FB have been Godsends for me when I can’t get out. I have grandchildren who bring me so much joy. I have a million or so stories of the things they say and do. I try to keep track of as many as I can, and my, oh my can they make me laugh! My children know me well and are there when things go awry. They encourage me, forgive quickly, and still after everything we’ve been through, want me in their lives. I’m grateful. They seem intent on doing things I would enjoy with them and the kids. Bucket list? Maybe...but I highly recommend it to everyone!! Life is short….moments are precious and treasured memories are waiting to be made.

I live in a mother-in-law suite at my youngest daughter’s house and thankfully she likes to cook because I will forget to eat during the day. When I do remember it’s late, I’m starving, and I eat ALL the wrong things. So, when she cooks I eat at a regular time and it sure helps that she’s a very good cook!! She sure didn’t get that from me! My oldest daughter is a nurse and is quick to spot when I may not have taken my medication and knows how to help calm me down when feelings and impulses become out-of-control. My son loves to walk so that helps me get a little exercise. Motivation is hard to come by and even though I want to care about certain aspects of my health, I simply don’t. I am so grateful for all of my children.

I have three amazing friends who love, listen, and counsel me. They give spiritual and practical advice and help give me back the credibility that HD steals from every person who has it, if they live with it long enough. They pray for me and bring hope on the days when everything is closing in on me. Decision-making is very difficult for me. I am absolutely certain one minute about what I should do and the next minute, hour, or day have decided the exact opposite. My children and close friends give me their input and I have learned to at least hear what they have to say about some of my great ideas. They have encouraged and given me advice as I wrote a children’s book and had it published recently. A dream I never thought would be possible (It only took 7 years) and last week I got to read it in my 7-year-old granddaughter’s first-grade class. She was thrilled and I hope it will be forever etched in her memory and heart.

So…Here’s some practical advice I’ve learned from a very impractical person – ME! – Learn to worship God in all things. Hold on to the people God puts in your life. Don’t run from Him and don’t run from them. They are His treasure and gift to you. They may just be your Armor-Bearers carrying five smooth stones and a sling-shot waiting for the day you have to confront your Goliath. They may be the ones who read the Bible to you when you can’t – the Promises of a Faithful Father. They may be the ones who bring the sound of worship to your soul when emptiness is all you feel. They may be the ones who pray with and for you when you need it the most and the ones who bring God’s Light into the darkness. What about the ones who are searching for a cure? The ones doing the research, bringing awareness, telling their stories, fundraising, participating in clinical trials? Pioneering spirits – trailblazers who hold a stone as well…Getting to be a small part of their lives and seeing the work being done and progress being made…I know that God is in their midst and we have more hope than ever for future generations! Goliath most certainly is going down and God will most certainly get the Glory! Just as His Word says in James 1:17 “Every good and every perfect gift is from above and comes down from the Father of lights in whom there is no variation or shadow of turning. “ God never changes! He is and always will be Faithful…and In Him my hope remains for all generations!


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