Dialog Box

Something to Say

 Something to Say

by Marilyn Martyn

The time has come to put my grief aside and share my experience with people facing the same situation.

I first heard of MND in the mid-eighties when a colleague’s wife suffered from this insidious disease. My colleague was distraught, feeling helpless and without a lot of support.

I remember thinking I could not face that situation. I could never cope. 

Thank goodness we have no idea what is ahead of us.

Sol was my second husband. We met in our fifties, both of us experiencing the despair of a broken marriage. We had rebuilt our lives and were busy and content (well, sort of).

A mutual friend arranged for us to meet for dinner before we went to her daughter’s wedding. I was not a romantic at heart but thought it would be good to have someone with whom to attend the wedding.

Sol was in the kitchen when I arrived for dinner. I was expecting to see a short, rotund, middle-aged man. I turned around to face the door as this tall, slender, attractive man entered the dining room and introduced himself. He also had this deep, melodic voice. I fell in love at first sight! It was a mutual attraction. After a two-year friendship, we decided to live together. After twelve years, we decided to get married.


Marilyn and Sol on their wedding day

Marriage was something I wanted. We were in our sixties and knew that we had to make the most of the time that we had left. We were committed to marriage and were the best of friends. I am a mother of two sons, and motherhood was a joy. I learned that my love for my husband was just as strong.

One day I noticed Sol’s voice had changed. It had lost its depth. Initially, I thought it was because he was a man in his seventies. He also appeared withdrawn. Sol started to experience odd symptoms. In retrospect, his doctors knew what they indicated but they wanted to be sure before giving us a formal diagnosis. Sol passed away from MND on the 2nd of May 2017. I think of him every day and miss him enormously, but I am grateful that he is free from this dreadful disease.

I faced the situation and coped. Why? Because I didn’t face it alone. I experienced the courage and fortitude of one man and how caring human beings can be for one another.

Sol displayed courage, sensitivity, and a practical attitude; I am sure he felt fear as I did. He announced that he could no longer drive his car, and he accepted the wooden walking stick which he needed and then the walker. But he wasn’t too happy about the wheelchair!

I had to call the ambulance when he couldn’t breathe. He wanted to go home when we both knew that he couldn’t. When he could no longer speak, he wrote, ‘the situation must be difficult for you!’ He indicated how he was feeling. I didn’t have to guess. I knew what he wanted, and he didn’t argue if it wasn’t possible. He showed me the gracious and loving man I knew him to be.

We appreciated the support from MND Victoria and Bethlehem Hospital, our church community and medical attendants. A loving family and friends also cared for us.

I have a joyous memory. Sol was a meticulous man. I saw that he needed an electric shaver.

“I am going to ‘The Good Guys’ to get you an electric shaver. I will bring it in the morning,” were the last words I said to him. Supported by nurses, he nodded and gave me his V for victory sign. Sol passed away that night.

I am still associated with MND Victoria. I have the privilege of working with people recording their life stories, the perfect legacy to leave a family.

I received a beautiful card from my niece. On it was a quote from Kahlil Gibran:

“Ever has it been that love knows not its own depth until the hour of separation.”

I have experienced this to be true.

Marilyn volunteers for MND Victoria in our Life Stories Program, helping people living with MND to record, transcribe and prepare stories of their life for printing, so that the stories of their life can be recalled, celebrated and shared.

We are currently seeking to build our team of Life Story volunteers across the state.

If you would like more information about this role, please email Deb at volunteer@mnd.org.au or phone 0432 053 287.

If you are living with MND and would like to work with one of our Life Stories volunteers to record the stories of your life, please contact your MND Advisor/ Support Coordinator.

24 March 2023
Category: Stories