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.
Tom's Nature-up-close Photography and Mindfulness Blog 
My sincere and profound apologies on your loss. The joy you found in each other was palpable, and through your posts we got to share in it in some small measure.
Tom, while many of us will be grieving with you, it’s also true that we’ve come to know and admire Marla from your postings here, and understand what a special person she was. She was lucky to have you, with your skills and your own compassionate heart. Thank you for sharing the news with us, sorrowful as it is.
Sad to hear, Tom. Deepest sympathies.
It is really wonderful to know about your beloved wife, Marla, a beautiful soul, and how special, she was for you. Heartfelt condolences to you in this time of sorrow. Prayers 🙏
Thank you for sharing your deep love for your wonderful wife. I’m so sorry for your loss and wish you peace and comfort.
Condolences never seem enough.
There are no words.
Time is a healer.
Best regards,
Paz
Tom. So sorry for your loss.
I am so sorry to hear this and send you heartfelt condolences.
You often mentioned Marla and how brave she was while dealing with her illness. As the poem says, she will remain with you, in your heart, forever.
Oh Tom, I am so saddened to hear this, but I adore the tribute you paid to her. You don’t find many marriages like yours who endured so much, yet gave so much more. You both have beautiful spirits and while her medical challenges were great, you lived a life together and shared so many wonderful memories that people with lesser challenges often take for granted. I was not familiar with Wilson’s Disease so thank you for sharing information about. Peace and blessings my friend.
Tom, I am so sorry that you have lost your beautiful wife. It sounds as though you and Marla had a wonderful union. I always say that grief is the price we pay for love. It is obvious that you had much love. I hope that you will find peace in your grief.
I’m sure you did everything possible to care for her during her long struggles. The E. E. Cummings poem was an excellent choice. Our condolences.
To love unconditionally and to be loved unconditionally are the greatest gifts we can bestow upon another being. Sounds like you and Marla had that kind of relationship. My deepest sympathy for your loss.
Oh, my goodness, what a sad— but beautiful— story. And what a perfect poemto have read at her memorial service. She certainly was a beautiful person, in heart and soul. My heart goes out to you. Take good care in these coming days as you make your way without her..
Many condolences on your loss.
Tom, thank you for sharing this beautiful tribute to your wife. My deepest sympathy for your loss.
I am so very, very sorry, Tom.
Tom, I am so sorry to hear of Marla’s passing and loss
of your soulmate.
Oh my beautiful, sweet friend. I will love you and miss you forever.
So sorry you lost your wife Marla — you both went through a lot
I’m so very sorry, Tom! I know from your posts how much you loved Marla and how lovingly you looked after her. She was lucky to have you, and you were lucky to have her. That makes it the loss harder to bear. But you are a philosopher, and I hope you may be better equipped than most of us to accept the inevitability of the parting. Please take care of yourself too. You are an inspiration to many.
The pictures are beautiful!
Tom: I am sorry for your loss and the loss of your wife to all of humanity. Peace.
The pictures and the poem are really beautiful and touching.
I am so sorry Tom, peace and love in your heart. Marla in the stars and your heart. Regards Marcela!
Muy hermoso el poema Tom!
I’m terribly sorry, Tom. Your tribute to Marla is lovely. May you find peace and comfort.
I am deeply sorry to hear of your loss, but am glad you both lived fulfilled lives and that she is now where she needs to be.
It is beautiful to see your tribute to Marla in honor of her life. May you find solace!
I am so very sorry for your loss Tom and extend my deepest sympathy. Marla will, no doubt, live on in your memories of a wonderful, though difficult, life together.
Many condolences, sorry for your loss.
I’m so sorry for your loss…. my sincere condolences to you and your family.
I’m so, so sorry. Thinking of you and your family ❤ ❤ ❤
I could barely read your eulogy Tom. I am both stunned and heartsick for you – I also know that words mean nothing when your heart has been broken. I knew your wife was compromised physically only by reading your blog. Your stalwart affection and attention to Marla, your caregiving capacity stands before you like a star… may that star and the love of your friends and your relationship with nature sustain you during grieving this most tragic of losses. My heart opens to yours… Sara
My thoughts are with you.
I am so sorry for your loss Tom. You always spoke in glowing terms about Marla and the words you chose to read at her memorial service is a testament to that love. You came so close to reaching 35 years of wedded bliss and I am sure November 9th will have you awash in profound sadness once again.
My condolences for your loss, Tom. Sounds like a sustainable memory of Marla lives on in your heart❣️
My deepest sympathies. 😦
Dear Tom, my heart goes out to you. I’m so sorry for the loss of your wife, Marla. She sounds like a wonderful person. May your memories and your time together eventually bring you comfort rather than the feelings of pain you are experiencing now. ❤
I’m very sorry to hear that that your wife has passed away, Tom. I hope your memories and family are enough to sustain you. Please accept my condolances.
My heart goes out to you, take care 🙏
Di fe`in, anam-cara
Mo samaointe agus mo shaol.
Herself, soul-friend
My thoughts and my life.
(John O’ Donohue)
No words said can relieve the pain of lost. My sincere condolences to you and the family circle Tom. ☘️
My deepest condolences, Tom.
I can tell you loved her deeply. My condolences. I guess your one consolation is that she will no longer suffer.
I am so sorry for your loss and she sounds like a beautiful, amazing person. May her memory be for a blessing.
Reading this tribute to Marla brought tears to my eyes, Tom. You were lucky to share a life with her. Though a part of her is gone, I think her spirit will continue to appear in some of your beautiful photos and writings.
Dear Tom, my heart goes out to you. What a loss you have to deal with, the love of your life. I hope you find the courage to keep going.
😢
Tom, I am saddened by your loss of Marla. She sounds like she was one of the kindest souls on this earth.
I’m sorry for your loss, Tom.
Thank you, everyone, for your very kind and warm words. I will be taking a break from blogging for awhile. It has been very difficult.
Warm regards,
Tom
So sorry for your loss! Your care and your love for each other shines through your writing. You are truly blessed.