Our Stories

For this year's ALS Awareness Month, I have been sharing the stories of the widows of ALS.

This is my story.

It was the fall of 1997. 
I had recently broken up with my first girlfriend and moved into my own apartment. 
I had internet for the first time, and joined a couple of AOL chat rooms for lesbians. 
Mary and I, along with about 5 other women, were the first ones ever in that chat room. 
We called ourselves the OPG, or the Original Parlor Girls. 
I struck up a relationship with one of those women who happened to live in British Columbia. 
When I flew up from LA to meet her, I had a stopover in Seattle. 
Mary and two other OPGs met me at the airport during my layover. 
Mary and I continued to develop our friendship online and over the phone for the next few years, 
until we lost touch. 

Fast forward to spring of 2003. 
I was planning a trip to Scotland, when out of the blue I received an email from Mary. 
We restarted our friendship right where we left off. 
She was living in England so we chatted mostly by text and long phone calls.
By November 2003, we realized we were in love and started to plan her return stateside.

On December 26, 2003 I picked her and all of her belongings up at LAX.
We were married in the church on June 19, 2004. It wasn't legal yet, but it was real.
We were broke. I had debt. She had fibromyalgia and rheumatoid arthritis.
We were soulmates.
Somehow we saved each other from our pasts. We started to build a future lifetime.
She was quickly a part of my family: my kids, my parents, my brothers all welcomed her.

In 2012 she started to have symptoms that her rheumatologist couldn't explain.
A year of neurology visits and testing later, in Dec 2013. she was diagnosed.
ALS. 
The doctor told us over the phone on Friday night, and said "I'm sorry".

By January 2014, she had fallen several times and nearly blacked out, unable to breathe.
We had our first fight ever. About ALS. About what she wanted.
She started using a BiPap machine and was on it 24/7 in March.
She got her feeding tube in April. By May she was in a wheelchair full-time.
The doctors started asking he to decide if she wanted a tracheotomy with ventilation.
She wouldn't decide.
July 2014 was the last time she left the house for anything but doctor appointments.
By August all of her nutrition was through her feeding tube.

She hid her progression from anyone who called. "I'm doing great!" she would say.
She was completely paralyzed, except for her right foot and her speech.

February 2015, she went to the emergency room 4 times for "deep suctioning". 
She was diagnosed with bronchitis, and panicked.
She decided to be trached and ventilated on February 19, 2015. 
It was my worst fear. I knew it wouldn't go well.
She wanted to live until there was a cure. I knew she wouldn't be able to.
We were home for two weeks, and I was taking care of her alone. I broke down.
On March 19, we were back in the ER. Urinary Tract Infection. I made them keep her for placement.

I visited her every day. I got phone calls almost every night.
She wanted to live until she had no more joy.
I interpreted between her and the staff because they couldn't read lips.
Sometimes she didn't make any sense. She was diagnosed with FTD in June 2015.
She was still in the hospital. None of the 9 facilities in Oregon who
took people on ventilators would take someone with her level of care.

Infections. Concerns about her heart. Anxiety. Dementia. Hallucinations. Fear.
In October 2015, I knew it was time. 
I talked to the doctors about removing her from the ventilator.

A week later, while the doctor and nurse and I were in her room, she said "I'm ready to die."
When I asked her when, she replied, "now?"
I told her I needed two weeks. How about Halloween? She smiled.
She didn't know it was already planned. That was the first lucid moment she'd had in months.

My family and three closest friends came. We had a beautiful ceremony to say goodbye.
Then she was gone.
My wifey, the love of my lives, mo croidhe, was gone.