Author: Meg Artley

Writer, artist, yoga and mindfulness instructor and big-picture thinker. Not necessarily in that order.

A grateful update

Last weekend, I wrote the email below to friends about the March to End ALS happening in Washington, DC on Saturday, October 4 at 11:15 am. So far, our “They Call Me Big Papa” team has raised over $3,000 for the ALS Association! I thank all of you for your care and concern for my sweet husband of 38 years and for all the people who get this rare disease, but don’t have family, friends, clinicians and advocates to care for them. If you didn’t get the email, here it is:

My husband Tom was diagnosed with ALS a year ago.

ALS (amyotrophic lateral sclerosis) is an always fatal neurodegenerative disease in which a person’s brain loses connection with their muscles. People with ALS lose the ability to walk, talk, eat and eventually breathe.

At this point in Tom’s progression, he can’t use his left arm and hand at all, and his right side is headed in that direction, fast. Though he can get around on his own two feet for now, last month he fell and broke five ribs and was in hospital for three days. He has lost over thirty pounds and because of the progressive muscle atrophy of ALS, he will never gain it back.

I have become Tom’s primary caregiver. It is sacred work and I am grateful I get to do it.

I care for Tom with a grateful heart. I am grateful I can show him how much I love him every hour of each day. I am grateful I get to support him as he supported me through my breast cancer journey, when my parents died and through all of the other challenging times in my life. He is my rock. 

And I’m grateful I am not doing this alone. I have the support of my big-hearted children, lovely friends like you, my neighbors, my yoga sangha, the clinicians at the ALS Clinic at George Washington University Medical Center and the ALS Association.   

October 4 will be the second year our whole family (including the grandkids!) will participate in the Walk to Defeat ALS at the Washington Monument. We invite you to join us there — in person or in spirit. If you can come, just email me and let me know! If you can’t attend, we invite you to join our team and send good energy our way. 

Last year, I wrote to tell you I was walking for Tom. But Tom is doing as well as can be expected. We are muddling through this awful disease.

So, this year, I’m walking for the people who receive an ALS diagnosis and don’t have a life partner, parents or children to feed them, bathe them, and help them into their clothes every day. I’m walking for people who are dealing with the crushing fatigue of withered muscles, but don’t have the insurance that pays for the five-figure-priced wheelchair. I’m walking to raise money for the ALS Association because they are the front line for these people who are alone and/or economically disadvantaged, giving grants, loaning equipment, advocating for and supporting them.

I’ll walk proud because the ALS Association was quick to advocate for maintaining the funding levels for research in midst of the chaotic ugliness of DOGE. Their laser-focused advocacy kept the funding we need to understand this thankfully rare, but utterly devastating disease. This research is key to ensuring people don’t get this diagnosis again, and if they do, there is a cure.   

I invite you to join me in support of the ALS Association this year. Here’s the link to participate.

Tom has an indefatigable spirit. He began walking again only a week after his fall with a walker in our apartment, now he only needs his cane. He received his brand-new, custom designed wheelchair (pictured above) and has already mastered many of its wonderous movements, all done with a tiny joystick that doesn’t require the use of his right arm. It is like learning the space shuttle after driving his mobility scooter around, but as you can see from his smile, there is joy in the freedom it gives him. 

Three weeks after his fall, we got to Virginia Beach for a family reunion. It was a was a shot in the arm for Tom, the one called “Papa” by our grandkids (and so now, by all of us!).

Thank you for your support of our “They Call Me Big Papa” team!

All my love,

Meg
 

A Map to Normal

Unfold the map and choose a random tertiary road in the right-hand corner to start. Follow the tiny road’s meandering in spaciousness, interrupted only by occasional intersections with aimless white lines. Clots of streets will begin to form near these connections, bleeding out borders of townships, then counties. As you draw closer to your destination, the road will straighten and widen. It will turn an officious blue, urge you forward, count down your exits. Finally, it unravels, wrapping under and over itself, forming a four-petaled blossom, the center of which is where you once longed to be: back to Normal.

Laying it on thick
Baby Shower, acrylic on board.

At thirty, my changing body was both miraculous and challenging, a home for a growing fetus and a low-level source of worry about the thickness of my thighs, how my body looked in a bathing suit. A benefit of growing older is pulling back from the boundary of skin, muscle and bone, to see that we are something so much more spacious and illuminating than we thought. When we do, our yoga practice evolves to fit this reality.

“As above, so too below,” is a saying that encapsulates a major thread of Tantric philosophy. Just as the universe is always expanding into being, so too are we, giving birth to ideas — even people! — bringing consciousness into manifest, manifest into consciousness.

A few years back I evolved my teaching of asana yoga into the teaching of mindfulness through creativity to older adults in the DC Around Town program. I emphasize the same things I do in an asana class with those in my creativity classes: stay present to what you experience, and focus on the process, rather than a destination or perfection. There is joy here because you are bringing your always flowing and illuminating mind home to serve consciousness. Minutes, hours can fly by when you are nourishing the mind in this way, whether you are moving your whole body or just your paintbrush or pencil.

Our current project in the art class at St. Alban’s is painting old lunch trays with our favorite lunch foods, inspired by the work of Wayne Thiebaud. His penchant for painting the sweets of his youth, his thick application of paint like icing on a cake, are amazing ways to connect once more to the joy of creating with paint or food, the taste and smell of our favorite foods, the feeling we get when we sit down to eat with a friend. As I painted this picture of the foods and of my big belly at my baby shower 28 years ago, I stayed present to all these things and to the beauty of the color of the acrylic, the way the paint flowed on the board.

To find a path to joy, don’t be afraid to make a mark, to lay it on thick, to eat it all up.

Pull the Tab for Your Reality Show

What if we were to be able to open our perspective as easily as opening a can of tomatoes? There, instead of the wilted basil leaf, grainy juice and slick flesh, was a new way of seeing?

The inspiration for this piece came from The Wisdom of No Escape by Pema Chodron. She speaks about enlarging our perspective through the practice of meditation, of looking deeply and precisely at ourselves with gentleness and then letting go of what comes up. She says this can help us take the black sack off our heads to see that we’re standing at the edge of the Grand Canyon. I would like to take the sack off my head and be awake to something as wide and deep as the ocean.

You have to open a lot of cans to be awake in this saucy life. The practice begins with showing up, just as you are, and looking inside. Many times, it will be like an episode of the reality cooking show Chopped – how can you possibly live a life with a syrup of resentment, a jar of cowardice and a sarcasm cake? Those ingredients also contain your empathy, your resilience and your humor. To transform, you have to see and use what you have inside.

This piece sits beside me as I write this, reminding me to open up, to look inside, and stir the bubbling ocean of juiciness.