Noticing the Blessings in Everyday Life

by Leah Leilani | April 17, 2018

Chronic illness can dramatically alter life perspective. If there’s anything I’ve learned from having mitochondrial myopathy, it’s gratitude for my surroundings. I guess I’ve developed a kind of mindfulness from days spent inside my house trying to regain energy. If I’ve drained too much energy, it can take some time to recuperate.

There are only a few feelings in the world that make me realize I’m alive. When the weather is right, I go into my backyard to just sit and relish nature. I don’t notice how stuffy my house is until I feel the wind blow through my hair. I can feel the sun warming my skin, bringing a smile to my face. I love seeing the butterflies and hummingbirds zooming around the flowers. Being out there is much like meditating. It’s peaceful, serene. All the worries of life seem to melt away.

Sometimes my mom and I go on a short ride in the car for a change of scenery. My favorite drive is right down Pacific Coast Highway. We cruise the neighborhoods, looking at the cute houses. In times like those, I don’t dare look at my phone for fear of missing something — even minuscule things like a new sign on a billboard or a fresh coat of paint on a store.

Occasionally, my dog rides with us. My mom and I laugh as his hair blows in the wind, nose twitching while sniffing the air. Sometimes, we drive through Starbucks and order a “puppy frapp” for him — a cup of whipped cream. It’s the day’s highlight to see him get whipped cream all over his cute little face.

Those times make me realize that life isn’t just about working for an income and paying the bills. It’s so easy to get caught up in the motions. Sometimes it may seem like our to-do lists are all that matter. At night, when I pray, I think about my blessings and all the things I have to be grateful for. Even if I haven’t had the most positive day, this prayer is an opportunity to take a second and know that everything is, and will be, OK.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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About the Author

Leah Leilani Leah is a Southern California-based patient writer. She’s been an active member of the muscular dystrophy community since her regional ambassadorship with the MDA beginning at the age of 10 after her diagnosis of a rare neuromuscular disease, mitochondrial myopathy (Mito). Leah advocates for those with disabilities and promotes an understanding of her condition by evoking a positive outlook upon the obstacles she faces. Leah’s work doesn’t just stop at her column: she also doubles as a co-moderator on the MD News Forums. Away from her jobs, Leah is known among family and friends for her artistic creativity and outgoing personality.

Comments

Davide V

Dear Leah, I am a 33-years-old DMD patient. Every day I also experience everything you have described. Some days ago I was in my backyard under the cherry tree, there was a snow of white petals, what a wonderful sight! I was all fill with petals :D
One of my favorite Italian writers said: "We should find poetry in everyday life and this is the secret to being happy. If we cultivate our inner life, poetry would spring from the hard rock of everyday life, because it is an inner condition that feeds on every occasion, even the least showy."
"The poetry of life is to be found every day also in the daily experience of the relationship with others and with the world. Looking for it, with attention and trust." I hope I translated correctly...
I'm reading your posts, really congrats!
Best wishes from Italy, Davide

carlo

I'm Mario's father. He can not be like me
I can not stop looking for a solution for your illness
He is 12 years old, I am 60
The mother does not want to undergo therapy with mesenchymal adult stem cells
He wants to live
how can I continue to live

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