Tom's Nature-up-close Photography and Mindfulness Blog

My beloved wife Marla passed away on 10/07/20 due to complex complications from Wilson’s Disease. Her Hepatologist at the University of Chicago Medical Center said that it was amazing that she lived as long as she did. This makes me feel that i succeeded rather well at helping her with her illnesses. Marla was very brave and went through a lot of suffering. She was born with Wilson’s Disease, an autosomal recessive genetic disorder rendering the body to be unable to eliminate excess copper naturally. She had an auto-allergic reaction due to the penicillamine medication that she was on for Wilson’s in the past; penicillamine has a lot of very bad side-effects. At that time, she almost died from ARDS and ended up with only half-lung capacity. She suffered from dystonia — a strong tightening of the muscles involuntarily — and had to have Botox injections deep in her neck every two to three months. Due to the chronic dystonia of her neck, she had to have 8 cervical vertebrae replaced with titanium implants. She then lost the ability to swallow and had to (permanently) eat via enteral feeding (i.e., by a tube going into her stomach area). Before i retired, i was a teacher for the multiply handicapped, and — for decades — helped with enteral feeding (i.e., stomach feeding tubes) with some of my students; so i was very experienced with helping Marla with hers. Marla then had to have shoulder surgery… and then reconstructive shoulder surgery. She had Elastosis perforans Syndrome, a skin disorder (on her thighs) caused by having been on the penicillamine for years before getting on the better (less intrusive) new zinc therapy. She often told me that she had a low threshold for bearing pain but she was way more brave and stalwart than i could have ever been. Despite her pain and struggles, we had a whole lot of great, joyful times together.

I fell in love with Marla largely because of her warm and compassionate heart. She always put others first and was always thinking of others. She often made things for others, like quilts, fancy embroidery things, and homemade lotions. She was a nurse and often would take her elderly mother to the doctors. Everyone who met Marla loved her radiant, caring personality. I am so honored to be her husband.

Please consider donating to the Wilson Disease Association at http://www.wilsonsdisease.org

The following is one of the E. E. Cummings poems that i read at her beautiful outdoor memorial service along the Kankakee River:

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
                                                      i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart(i carry it in my heart)

______________________________________________________________________________

The first photo is from our Wedding Day. The second photo is Marla, many years later, with one of our puppy-dogs. Marla always loved dogs.