The sunset bicycle photo symbolizes my joy in recovering bike riding for work commuting as well as for enjoyment. I also really love this quote for the AN journey, "Life is like riding a bicycle: to keep your balance you have to keep moving."

This piece reflects the AN survivor. The swan can be very calm, beautiful & peaceful, but also feisty & determined. AN patients have to have these same qualities. When an individual meets someone who has gone through an AN diagnosis, they may never realize how much determination & daily coping that person is capable of.

This piece reflects the AN survivor. The unique Hungarian Racka sheep depicts our unique diagnosis.

2002 Poem by Mary

2005 Poem by Jilliann

My day job is painting large, outdoor murals with my daughter. This mural is all about nourishment. Being the portal to a roof top community garden, the association with food is obvious. But we recognized that the soul needs nourishment, our emotions need to be fed in positive ways, what is sapped from us just through daily living needs replenishing…this would require a good dose of inspiring beauty: art as nourishment.
The entranceway is designed as a portal, a fantasy transition from the ordinary to the fanciful. To have our passage bear fruit, we often need to let go of what was, to allow for what may be. The AN, and the resulting SSD, robbed me of the ability to be the kind of musician I was, a performing percussionist, who also blew the shofar at my synagogue. But the letting go, sometimes forced on us, allows us to focus on what is behind the particular form of doing, to uncover what is the essence of our being. I now have a ministry in hospice care, sharing songs intimately with our patients and families…totally unexpected and both gratifying, and humbling.
All doorways are like this, we go from what we know to what awaits. The poet Rumi says it well, as he concludes in his poem, The Guest House: “Be grateful for whoever (whatever) comes because each has been sent as a guide from beyond.”
Finished mural: FOOD ROOF, my partner-daughter is in the doorway celebrating. The interior, except the roof, is a UHaul, self storage facility.

My day job is painting large, outdoor murals with my daughter. This mural is all about nourishment. Being the portal to a roof top community garden, the association with food is obvious. But we recognized that the soul needs nourishment, our emotions need to be fed in positive ways, what is sapped from us just through daily living needs replenishing…this would require a good dose of inspiring beauty: art as nourishment.
The entranceway is designed as a portal, a fantasy transition from the ordinary to the fanciful. To have our passage bear fruit, we often need to let go of what was, to allow for what may be. The AN, and the resulting SSD, robbed me of the ability to be the kind of musician I was, a performing percussionist, who also blew the shofar at my synagogue. But the letting go, sometimes forced on us, allows us to focus on what is behind the particular form of doing, to uncover what is the essence of our being. I now have a ministry in hospice care, sharing songs intimately with our patients and families…totally unexpected and both gratifying, and humbling.
All doorways are like this, we go from what we know to what awaits. The poet Rumi says it well, as he concludes in his poem, The Guest House: “Be grateful for whoever (whatever) comes because each has been sent as a guide from beyond.”
From a drone, you can see the gardens on the roof, and how much all the color enlivens this area just north of downtown St. Louis.

“Interiority" - the surgery brought my attention even deeper into the interior of my body: my brain, ear, balance mechanisms and abilities, overbearing sounds (tinnitus), and a gigantic feeling of isolation from others and the world. I had to move slowly and carefully at first as if the cellular matrix of my being was, for the first time, making me take notice. I no longer could take any movement or bodily ability for granted. All of me was on alert and highly sensitive. My handling of paint changed and still keeps changing. I don’t really know why but only know my focus is somehow different and my stamina/force has been modified. I used to paint with large paper or canvas on the floor. I no longer feel good doing this, putting my head lower than the rest of my body. I now need more rest and sleep is good for me. If I push myself too hard I get very edgy. I don’t like this anymore whereas before for maybe 40 years, I thrived on my edginess and force. The nature of all these things are morphing. So be it.

Putting into words what I feel in my head every day isn’t easy. “Normal” isn’t a word I claim. Physical, mental and neurological conditions that are not visible from the outside present new challenges I’ve never experienced. Having an AN and subsequent surgery has permanently changed my senses and impacted my activities, profession and life course. Because the symptoms are not visible it can lead to misunderstandings, false perceptions, and judgments. This art piece depicts the contrast of what others see versus how I feel. From this experience I’ve learned that when we meet others with kindness and compassion it can help them cope.