You would think, that while I am being strong, I would not fall back into the darkness of fear...but I seem to climb up the mountains of peace and trust, then stumble down into valleys of fear and doubt and discouragement while on this crazy journey through Huntington's. I want to glorify God through my journey...and I trust him completely as He leads us up and over and around these mountains, valleys, plateaus and ridges...so WHY do I occasionally go through seasons of anxiety, fear and failure? Who sees His glory then? No one. It is frustrating!
Historically, I struggled with panic attacks every morning for 2 or 3 years prior to Rob's diagnosis. I could see symptoms that no one else seemed to see. I trusted that God would take care of us, but I was also busy trying to figure out how. What will we do if he can't work? How will we pay for our house? How can I take care of him? etc.
There really was "no reason" to panic...we had always lived our lives hoping for the best, preparing for the worst, and trusting God no matter how things turned out.
So, even though I KNEW the truth...the uncertainty of the future was overwhelming. I often spoke up about my concerns and the symptoms I was seeing, and many times I felt brushed off and basically told, "he's fine, it's all in your head" (without saying those actual words). So, I started waking up every morning in an absolute panic. The anxiety would start before I was awake, wake me up, and then escalate. Nothing like waking up in a confused panic. Why am I so scared? What is scaring me? What's the matter? Uncontrolled, heart pounding, breath taking, sweating, gasping panic. Into the shower I would stumble, barely able to stand under the weight of the water until I would usually puke and drag myself off the floor to begin a day. For some reason, the puking would make me feel better. Like I was expelling the fear from my body. But there would be some resentfulness in me as I had to drag myself upright and finish showering instead of remaining a puddle on the floor. I had people who needed me. No time to dwell in the fear. Time to move on.
I always prayed intently through the panic. And then I was angry with myself for the anxiety and fear - God does not give us a spirit of fear! Do I trust God or not?? Because I wholly trust Him completely - How can I be worrying and panicking? It was a crazy jumble of emotions and spiritual battle every single morning.
At that time, Robs was having trouble working, but he was completely unaware of his symptoms. He had terrible depression and anger issues. He came home from work every night throwing things across the house and being mad at his boss or his day or the weather or whatever. The kids and I had to tip toe around the house. He was a big scary man to them, instead of the dad that used to be fun and exciting. I was always trying to act as a buffer between him and them...to protect them and shield them from his outbursts. Things kept escalating as his symptoms increased. I now he was not a good employee. I know his driving was terrible. I know his reaction time was slow. I know he broke things he was mechanicing on or forgot to complete tasks at work. But HE did not see this. He had no idea. He thought everyone else was being a jerk to him. He was SO angry.
And then...things came to a head...and I had to tell him it was time to get tested. He was completely unaware that he'd been having symptoms. I'd been seeing symptoms for YEARS. In 2012, I KNEW he had Huntington's. Here we were, 3 years later, and he was completely unaware that he had any symptoms. As we approached the testing...through a lot of prayer, I got over the majority of my panic attacks. Then, when we got the test results January 13, 2016, I immediately stopped having panic attacks.
They came back here and there over the years, as we have had various struggles of living with HD. As our family has faced various stages of HD, I have gone through various phases of dealing with panic attacks. I get SO frustrated and angry with myself, because I really do trust God, completely. But...the panic is there.
Well...here we are, again, living in uncertain times. I hate this Covid stuff. I'm not worried about the disease, but I am watching our country lose our freedoms and unity. America is a disaster right now. And I have kids, trying to plan ahead for their futures. And Rob's cognitive abilities are on a steep downward spiral while his dementia is ramping WAY up. I have to figure out how to care for him. So...the anxiety is back. And I am frustrated.
How often, when we read the Bible, do we not feel like yelling at the Israelites or the Pharisees or the Disciples - DON'T you GET it YET?! How did you NOT learn this lesson the LAST time? As we watch them go through the same struggles, doubts, fear and failures in their faith over and over. Guess what? That is ME! I'm the one who apparently can not remember the lessons I just recently learned! So go ahead and slap your head and say, "Don't you get it yet?!" Because apparently, I haven't!
Yesterday (July 31), I again was panicking before I was even awake. I woke up in overwhelming fear and anxiety. My chest is tight and I start to try to figure out why I am anxious. I have a tendency to think I am doing everything wrong, or if something is happening, it's my fault. The anxiety is like a weight on my chest, so I think, "what if it's Covid?" And I immediately think of all the ways that would ruin my kids' lives - school, new jobs, sports, etc. I will ruin the rest of my son's summer plans! I will ruin my daughter's new job! I will ruin her chances of going to YWAM, if that's what she decides to do. I won't be able to go to work! What about my co-workers? What about my church family? It will be all my fault!!! Who will take care of Rob? He can't even figure out if he has taken a nap or not. How can I have a caregiver come in the home if we are quarantined? I've ruined everything and it's all my fault! And the more I start this uncontrollable thinking the greater my anxiety and the tighter my chest and the greater the fear and the more unreasonable thoughts swirl and the greater my fear and a giant downward spiral...taking me down the royal flush.
See - complete poppycock. Absolutely ridiculous train of thought. But the panic started first - while I was still sleeping. The panic and anxiety are first, for no reason, and as I try to figure out what is going on, the result is completely irrational thoughts. I try laying in bed as still as possible so Rob doesn't know I'm awake, hoping I can pray my way out of this. I just need a minute to calm my thoughts, to focus on the Lord, to call on His name to rescue me. Before I can focus, I barely wiggle and Rob yells "Did I sleep at all?" "Did I sleep okay?" "Is it shower time?"
I can't answer. I just grunt, roll out of bed, stumble to the bathroom and shut the door. I am not even all the way awake yet. My brain is not on. I have nervous stomach issues. I lay on the lovely cool tile floor and pray. Nope - after 20 minutes, I can't shake it, and lay my head on the strangely comfortingly cool porcelain seat. The only way to recover is to purge the fear. I'm exhausted. But, I have people relying on me. So I drag myself off the floor, and start my routine. I'm wiped out and the day has not begun. I long to crawl back in bed, pull the covers over my head, and hide from the world. But...not today! not ever, any day...no time for that.
I start the morning routine and get Rob up and out of bed for his shower. He starts with the same exact conversation as always.
Did I sleep okay? Yes, you got 11 hours of sleep.
How did you sleep? Not good.
I have Huntington's. I know you do.
So, you didn't sleep okay? Nope
Do I have Meals on Wheels today? Yes, it's Friday.
I like Meals on Wheels. I know you do.
Did you sleep okay? Nope.
I don't think I slept good, did I? Yes, you got 11 hours of sleep.
I have Huntington's. Yes, you do.
Did you sleep okay? Nope.
I like Meals on Wheels. Yup, I know.
Crystal has short hair. That's great.
I'm retired. Yes you are.
I have Huntingtons. Yup.
Did you sleep okay? No, I didn't.
I'm a no napper. You just woke up, it isn't nap time yet.
I guess God just wants me to be retired. Big Sigh....
This is how our conversations go...all. day. long. every. single day. (even when I try hard to get him out of his brain fog and present in a conversation)
At some point, I start crying, and just can't stop.
Rob says, "Sounds like you're crying....long pause...I'm sorry you didn't sleep well...I have Huntington's"
Sigh.
I tell Rob I've having anxiety issues and how mad I am about it, because none of the things I am worried about are even worth worrying about. I'm trying to get him a caregiver. I sent in the paperwork to my long term care insurance. The kids are fine. They are off doing their own things. But I am also mad, because I am taking a day off work to spend with my girlie and I'm going to ruin it because I am having anxiety and I'm wiped out and emotional and we won't be able to have a fun day. So - why not worry and panic about that, too, huh? Ridiculous!!! We can't predict what this fall will look like for school or my job or anything until we are in the middle of it. God is in control. I'm trying to express my fears and failures and frustrations.
And after I pour out all my ridiculous concerns to him, Rob says, "So...I have Meals on Wheels today?" All I can do is laugh and cry. It's just so pathetic. I feel so bad for him. He can't pay attention. So, I get myself under control and out of the shower and get him ready for the day.
I am so frustrated with myself.
There is absolutely no reason to panic.
I mean, do I trust God or not?! Of course I do!
100%!
So what is wrong with me?!
We aren't supposed to have a spirit of fear, but a spirit of POWER
We are commanded to DO NOT WORRY, but in everything, PRAY.
I KNOW, Absolutely KNOW these are TRUTH:
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” ~ Isaiah 41:10
“For God has not given us a spirit of fear, but of power and of love and of a sound mind.” ~ 2 Timothy 1:7
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” ~ Philippians 4:6-7
“When I am afraid, I put my trust in you." ~ Psalm 56:3
“Peace is what I leave with you; it is my own peace that I give you. I do not give it as the world does. Do not be worried and upset; do not be afraid.” ~ John 14:27
“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” ~ Joshua 1:9
“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
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” ~ Matthew 6:34
“There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.” ~ 1 John 4:18
“When anxiety was great within me, your consolation brought joy to my soul.” ~ Psalm 94:19
“But now, this is what the Lord says…Fear not, for I have redeemed you; I have summoned you by name; you are mine.” ~ Isaiah 43:1
“An anxious heart weighs a man down, but a kind word cheers him up.” ~ Proverbs 12:25
“Humble yourselves, then, under God’s mighty hand, so that he will lift you up in his own good time. Leave all your worries with him, because he cares for you.” ~ 1 Peter 5:6-7
“Tell everyone who is discouraged, Be strong and don’t be afraid! God is coming to your rescue…” ~ Isaiah 35:4
“Do not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?” ~ Luke 12:22-26
“The Lord is my light and my salvation—whom shall I fear? The Lord is the stronghold of my life—of whom shall I be afraid?” ~ Psalm 27:1
“Cast your cares on the Lord and he will sustain you; he will never let the righteous fall.” ~ Psalm 55:22
“Immediately he spoke to them and said, 'Take courage! It is I. Don’t be afraid.'” ~ Mark 6:50
“Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” ~ Deuteronomy 31:6
“'For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. Do not be afraid, for I myself will help you,' declares the Lord, your Redeemer, the Holy One of Israel.” ~ Isaiah 41:13-14
“God is our refuge and strength, an ever-present help in trouble.” ~ Psalm 46:1
“The Lord is with me; I will not be afraid. What can man do to me? The Lord is with me; he is my helper.” ~ Psalm 118:6-7
“Fear of man will prove to be a snare, but whoever trusts in the Lord is kept safe.” ~ Proverbs 29:25
“He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm. He said to his disciples, “Why are you so afraid? Do you still have no faith?” ~ Mark 4:39-40
“The angel of the Lord encamps around those who fear him, and he delivers them.” Psalm 34:7
“But even if you suffer for doing what is right, God will reward you for it. So don’t worry or be afraid of their threats.” ~ 1 Peter 3:14
“I prayed to the Lord, and he answered me. He freed me from all my fears.” ~ Psalm 34:4
“Do not be afraid of them; the Lord your God himself will fight for you.” ~ Deuteronomy 3:22
“Then he placed his right hand on me and said: 'Do not be afraid. I am the First and the Last.'” ~ Revelation 1:17
“Jesus told him, ‘Don’t be afraid; just believe.’” ~ Mark 5:36
“And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love.” ~ Romans 8:38-39
“The Lord your God is in your midst, A victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy.” ~ Zephaniah 3:17
"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”…He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you…For he will command his angels concerning you, to guard you in all your ways…“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him…” from Psalm 91:1-16
I know these are true. So why do I fear? Why do I panic? Why am I anxious?
The best way for me to battle the panic and anxiety, is to PRAY, PRAY, PRAY, and go Be Still. To get away. I have to escape the noise and distractions and chaos - find some respite...and be still. Then I can hear that clear, calm, quietness of the Lord, reassuring me that He is here, He is leading and guiding us through this journey, He began a good work in me and will be faithful to complete it, He will not leave me nor forsake me. He is my comforter, my all in all, the Holy one, my Father God. I am wrapped in His arms of comfort and love and power and strength and absolute peace.
I cling to these truths and His presence and His peace wash over me and cleanse my soul from all fear.
And I had a LOVELY day. I dropped my son off to go on a family vacation with another family. I CRY with gratitude. The Lord has blessed us tremendously with such amazing friend who have all adopted him in as one of their own. He is my latchkey kid - always finding a house to crash at and a home to be at when he needs to - and they feed him because he is there - and they love on him - and they take him camping - and they take him dirt biking - and they have shuttled him here and there (before he got his license) - and they have all adopted him. We are SO blessed.
So, I dropped him off to go on his family vacation with a different family. Came home, loaded up and got ready to head out the door. When I told Rob I was leaving he told me, "have fun, that's the whole reason you're going, right?" WHAT? I stopped in my tracks. My jaw on the floor.
On a typical morning, Rob will ask me at least 20 times, as I am getting ready to go to work, "are you going to work today?" But today...How did he remember? What is this moment of clarity? I cried happy sentimental tears with a broken heart. There's that guy. There's my Rob. The one who cares. And I heard my Father in Heaven in that phrase. Go, my child, and Be Still, stop worrying, do not fret, do not fear!
So...my girl and I took kayaks to a lake and smiled, and laughed, and had a chance to be still. It was blissful and far too short.
And the evening was VERY busy. And Rob asked me the same questions repeatedly when I got home. And we had the same conversations we have all day every day. Yes, dear, you have Huntington's, you are retired, you had Meals on Wheels and you didn't get a good nap. But I wasn't fearful or frightened or frustrated....
Be assured, He is with you in whatever you face, in the turmoil and struggles, amidst the anxious thoughts and the worries of life. He is there, strengthening, helping, and He holds you in His hands.
God is greater. He gives us the power to live courageously, boldly, fearlessly in this life, when many things that surround us would tell us to be afraid. His truth whispers strong and sure - “Do not fear.”
All of that stuff on your mind? Give it to Him – again. Replace those fearful thoughts with His words of truth. And sleep in peace tonight. He knows what concerns you, He’s got you covered.
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