Rare Disease During the Holidays: How Much Can You Handle?
December 17, 2013
by Janet Mills
My first Christmas season knowing I had CADASIL (a rare genetic neurological disease with no treatment) was bittersweet. Christmas has always been my favorite holiday. I didn’t want to feel cheated out of the joy and spirituality of the season, yet at first I was reluctant to embrace it, just in case it was my last before a disabling stroke.
I didn’t start decorating the house right after Thanksgiving as I typically would. I didn’t hurry to change my car’s satellite radio channel over to seasonal tunes. I didn’t blast my favorite Christmas CDs while I wrapped gifts in colorful paper and bags. Christmas cards? Maybe I would never send those out again.
The magic of the season prevailed, however, and after a delayed start, I delved into all the Christmas activities that brought me such happiness in the past. Wonder of wonders, they still did! My usual optimistic self kicked in, and I was soon dancing to “Jingle Bell Rock,” stepping into Christmas with Elton John, and making a joke of Chet’s nuts roasting on an open fire. I felt more grateful than ever for a savior born in a manger so many years ago.
All this fun does come at a higher price now, but I am willing to pay it during the holidays. Stress exacerbates my disease symptoms, so I make sure I get plenty of rest and let that perpetual small stuff go. I remind myself to stop and smell the pine boughs and scented candles, and enjoy all the unique sights, sounds, and flavors of Christmas.
If I’m having a rough day, my self-care kicks in. I say “no” if I cannot do something…and I give myself permission to let go of the guilt. (That one is still difficult for me!) Family and friends can help by not putting more on me than what I say I can handle (and then read my body and facial language to see if I’m being completely honest).
I encourage readers of this piece to consider strapping on a pair of angel wings and donating to a rare disease charity of your choice by the end of the year. This is where I insert a plug for CADASIL Association, which is striving to raise funds to finance research toward a cure for CADASIL. A donation of any size is appreciated more than you may imagine: https://www.cadasilassociation.org/donate
May you too experience the blessings of the season!
Janet Mills is a CADASIL patient and a trustee of CADASIL Association. She is active in several patient advocate and support groups online. Janet worked as an elementary school teacher for twenty years and is now on medical retirement. Her previous published writing credits include romantic contemporary and historical fiction. (www.janetmills.net)
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