August marks three years since ALS first reared its ugly head. This anniversary has given me pause because this far along in the game many people require ventilator support to breathe. I’m one of the lucky ones because my motor neurons die more slowly than most. Up to this point, mobility has been my greatest loss. I’ve learned new ways of walking, bathing, dressing and driving. So far so good.
I’ve experienced progressive weakness in my core, shoulders, arms and hands. This is to be expected. I’ve made minor adjustments but mostly Steve does the heavy lifting. I use lightweight cups with straws and lids and use two hands for many tasks. Sadly, loss of ability smacked me in the face yesterday morning. I had a pile of paperwork to complete and couldn’t get it done. I can write big letters like my three year old grand daughter, but small printing is no longer legible. I have to stop and deliberately tell my hand what movements to make as the automaticity of writing is gone. Ouch. It hit me again last night when I went to a function and I had to sign in and write my name, email address, phone number, etc. I tried to play it off but an astute observer would have noticed my struggle.
This started a whirlwind of next phase questions. When should I proceed with eye gaze technology? (When my hands no longer work, I can use specialty software that reads my retinas in lieu of a mouse or touch screen.) How long until I have trouble swallowing and breathing? When will I lose my voice? When should I get a feeding tube? Will a diaphragmatic pacer help me? And the biggest decision of all — will I want to go on invasive ventilation? I think about this all the time. I want to live and not miss a thing with my family and friends. But is it fair to ask Steve to give up his entire life caring for me 24/7 so I can continue living? I can’t fathom that right now.
Fear and sadness take control. STOP!
If past decline is indicative of future decline, I have some time. It was two year process to lose all ambulatory function in my legs. It could be years before I lose the ability to type. My breathing was still 100% the last time it was tested. I have some time. I must stay present in the moment as to not fall victim to anxiety and depression. I can’t stay stuck worrying about how I will respond to a future challenge when I have reason to celebrate now.
How do I do it? I acknowledge the thoughts and fears. I validate that they are worthy opponents. I may even be grumpy or sad during this part of the process. Then I switch gears and return to gratitude. Easy, right? Don’t be fooled. I can’t do this in my own power or strength, all I do is surrender. I surrender to the fact that God has this worked out and I’m going to be ok. He hasn’t failed me yet.
… and we take captive every thought to make it obedient to Christ. — 2 Corinthians 10:5
When I’m ready to return to gratitude, I take captive every thought (yes, every thought) and hold it up against the truth. Is this thought helpful? Is this thought praise worthy? Does this thought move me towards gratitude? No? Get rid of it. Dismiss it again, and again, and again until it’s gone and replaced with the truth that everything is going to be ok.
The rubber of my faith meets the road in Philippians 4:4-8
Rejoice in the Lord always. I will say it again: Rejoice! … 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 minds in Christ Jesus. Finally brothers and sister, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable — if anything is excellent or praiseworthy — think about such things. Whatever you have learned or received or heard from me, or seen in me — put it into practice. And the God of peace will be with you.
Here’s the not-so-secret secret: I keep my thoughts on praiseworthy things (practice gratitude) and indescribable peace grounds me.
No victimhood. No whining. No excuses. No white flags.
I may be on borrowed time, but I’m Forgiven and Free and rooted in the peace of God
September 12, 2015 at 7:56 pm
Shelly, you are one of the most courageous and inspiring people I know personally.
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September 14, 2015 at 10:53 pm
Appreciate what you have & take it one day at a time. You are very brave.