I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
It’s December, a month that means so many things to so many people. For me, it means family time, festive fun with friends, traditions, busyness, beautiful twinkling lights, Christmas movies, the miracle of the extravagant grace and love of God, Christmas music — and presents!
Every year, my two children, Brooks and Collins, write a letter to Santa, and he fills their stockings and gives them the “big-ticket item” they had been wishing for. This year, they are wishing for kittens. Yes, kittens – plural. A kitten for each kid. This will definitely be a Christmas to remember.
Seeing the joy of this season through their eyes makes me think about my childhood, my present, and my future. I am blessed to have more worldly possessions than I need, and there is hardly anything on my list of wants. This realization made me think about intangible gifts.
The most obvious wish is the one I’ve had since I was diagnosed with Friedreich’s ataxia (FA) in 2013: a cure for this disease. And while that will always be at the top of my wish list every year until that happens, I am setting my sights on a goal that is within my power to achieve this year.
This year, my Christmas wish is to be content. Come what may, be it good times, bad times, injury, disease progression, new symptoms, treatments, or a cure, I wish for contentment in my circumstances.
I wish to live in a state of satisfaction and happiness about my life, despite the highs and lows, the frustrations, expectations, fears, disappointments, and adaptations that come with living with a progressive neurological disease. I have let the heartache of FA shape my mood, perspective, and outlook too completely. It has been tarnishing my ability to find contentment in my life.
I wish for the aspects of my life apart from FA — such as motherhood, marriage, and friendships — to feel contentment, despite the circumstances FA brings into my life, and however seasonal or permanent they may be. I wish that the rest of my circumstances would be less affected by the negativity that often follows my disease. Perhaps focusing on being content would become second nature and have a positive effect on my relationship with my failing body.
I know that compartmentalizing the complex tapestry of my life is logistically impractical, seeing as my life and FA are intertwined; they are one and the same. I can’t tuck FA into a neat little box. So, my goal is to be present in each moment and try to see the good in the things that surround me. If I can find contentment in these areas, then perhaps I might get my wish to find contentment in my life. Even with FA.
I also know that no one is happy all the time, whether they have FA, or not. I am not naïvely wishing for delusional happiness 24/7. I just wish that I would be able to process my feelings about my circumstances to the point where I don’t let them affect my perspective about other parts of my life.
FA is cruel, heavy, and hard, so I don’t want to focus on that. I want to focus on the good, in just the way that Philippians 4:8 describes: “Finally, brothers and sisters, 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.”
It doesn’t say to ignore the other things, it just says to think about the good things. Spend time reveling in beauty instead of dwelling in darkness. I believe that if I can train my brain to do that, and add in some Christmas magic, I can find contentment. Then I will be prepared for whatever FA has in store for my future.
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