Change is Beautiful

Autumn is a glorious time. We are enveloped in a world of vibrancy, experiencing a transition that passes us from summer to winter. We are surrounded by the beauty of change.  The air goes from stifling and humid and becomes cool and crisp. We give up our cool lemonade in exchange for a pumpkin spice latte or warm apple cider. The leaves and grass go from a healthy lush green to a cornucopia of orange and red and brown and yellow and deep purple. We turn from backyard barbecues to outdoor bonfires and toasted marshmallows. The fireworks of summer become trick or treat nights. Swimming and boating in the lake become hayrides and hikes in the mountains to view the fall foliage. Vacation time turns into back-to-school events.  Baseball is put away, and football is once again occupying our weekends. And we welcome all that change, because we need the beautiful and relaxing relief from the intensity of summer. We relish the calm and easy-going nature of fall. We are warmed by the show that Mother Nature and God have produced.

As summer becomes autumn and we find beauty in the change of seasons, so, too goes the life of an ALS patient. We start our journey at the height of our lives. We can talk and  walk, eat and breathe, we can hug our kids and dance at their weddings. Then we notice a change…a slurred word or a twitch in an arm. The process of our transition has begun. Like that first morning of fall when you open the door and realize you need a sweater, the ALS diagnosis is jarring. You put away those swimsuits in favor of a warm turtleneck. It’s time to pack up your pool toys and lawnmower and gather firewood and blankets. The same is true for those of us living with ALS. We turn in our running shoes for a walker or a power wheelchair. We no longer write a long, handwritten letter; we trade it for a computer and eye gaze technology. We don’t stand for a long, hot shower, but we luxuriate in a shower chair or have someone bathe us by hand. But I would postulate that all the changes we go through have beauty just like the changes of autumn. While we don’t want the changes, and do everything to advocate and educate to end this disease, we have to accept them.  They are as inevitable as the change of seasons. I see all the new technology and marvel at it, just like I gaze upon the fall leaves and think to myself, “Wow, how gorgeous!”  I look at my husband as he scratches an itch that I can’t reach, and I see the warmth of those fall bonfires. I can still eat the cheesecake and see the joy in the eyes of a fellow pALS as he relishes my bite as much as I do, while he loads his feeding tube with formula. There is extraordinary beauty in watching the ALS community grow and change. We may not have the strength to pick up a grandchild, but we can give them a ride on our laps at six mph or let them climb on the Hoyer lift. I may not stand up and dance at my son’s wedding, but I will use the eye level riser on my wheelchair and spin with him in circles and I defy you to tell me that is not beautiful. My new normal may look different than I planned, but finding the beauty in my changes is a gift from God. My medications may not mix well with alcohol, but I bring the party with me in my heart and spirit. ALS has become my superpower. The changes thrust upon me have lifted me from ordinary to extraordinary. I see so much more clearly, with so much deeper love, the people and things in my life that matter. And that is a beautiful change.