In memory of Evelyn Proctor

25 Year Air Force veteran Evelyn Proctor suffered from ALS. This is a brief look into our story.

It’s March 2009, upon returning from one of the many deployments she was tasked with, there was something wrong. Evelyn was experiencing cramps in her left leg and arm. Because she loved coffee and diet coke, we figured she needed to make some dietary changes; add some potassium, drink more water and she would be fine. This continued on for quite a while, and despite the changes to her diet, the cramping continued. The cramping, along with more subtle changes happened for just over a year. Up until this point, everything stayed on her left side: in her hands, arm and leg. She was still able to work, so she went about things as normal.

Fast forward to June 2011, we’re sitting in the neurologist’s office. We waited for the diagnosis. The doctor walks in, his eyes shifting away from us. I thought to myself, this cannot be good. The doctor says, “I don’t know how to tell you this, but based on the tests, and my experience, Evelyn, you have ALS.” Hearing that, our lives were irrevocably changed. At that point, we had been married over 20 years. With those words, that doctor handed her death a sentence. We knew what her mortality was. We all know that we have a limited amount of time on this earth, but we really don’t know what that amount of time is, but when you are told “three to five years,” you really realize how short that window of time can be.

In hindsight, be careful what you ask for. For over a year, we wished — no, we begged for a diagnosis. We felt that knowing what was wrong, there would be a clear path to a solution. That there was a cause, and a fix for what she was going through. Give us a name of a disease, and tell us what we needed to do to fix the problem. Every trip to the neurologist was a hope of knowing what was wrong, until we were told what was wrong. Until we were told “ALS,” we held out hope for a disease, any disease that wasn’t fatal, that wasn’t incurable, that wasn’t so damn aggressive and unrelenting.

The reality of knowing she was going to die was sobering, and so surreal. For me, it felt like I was witnessing a bad dream, or a scene from a movie. Having retired myself just a year prior, THIS WAS NOT WHAT WE PLANNED TO HAPPEN AT THIS POINT IN OUR LIVES! We both sat there, numb … trying to process what we had just heard. I knew I needed to be strong for her. I couldn’t imagine what she must have been feeling, or thinking at that moment.

See, for well over a year, we had no idea what was wrong with her, in our minds we figured once we knew, there was a way to fix it. We went about each and every doctor visit with hope and optimism. As time wore on, our optimism was tested even more. Receiving what essentially amounted to a death sentence was, at that moment, more than either of us could handle.

The drive home is another moment I remember vividly. From our home, the drive to the neurologist’s office was 20 minutes door to door. The trips are usually filled with music (she loved music), conversation and laughter. This time: silence. I stared off into the horizon, crying my eyes out. My heart was still in the pit of my stomach, I still had not fully processed what happened 20 minutes prior. I glanced over to Evelyn, the tears were pouring endlessly from her eyes. This is a woman who did not cry. I’m sure the car was driving itself, I wasn’t paying much attention to anything at that moment. Our lives, and the lives of our children were forever changed that day.

As I write this, and recount the moments, tears are rolling down my face. I have never lived a day without her in my world. Now, I’m alone. I feel more alone than I have ever felt in my life. After what seemed like several hours, we arrived home. Not a single word was spoken during the drive. I walked into the kitchen to get a bottle of water from the refrigerator, while Evelyn sat on the stairs. She wiped the tears from her eyes, “FUCK THIS, IT WILL NOT WIN!!” At that moment, our fight against ALS began. “Get me churros and a chocolate shake” were the last words Evelyn said to me. One might think this is such an arbitrary statement, but I don’t think so.

The morning of March 2, 2018 started off like a lot of the previous days, but she knew. I woke, took her to the bathroom. Gave her a sponge bath, administered meds through her PEG tube, massaged her joints, gave her a breathing treatment … but she knew. She was in a really good mood. She told our son Brian and I that she wanted to talk to the both of us, she wanted to talk to our daughter Rachal and the grandkids, her brothers and sister in Hawaii, and Jerry. Jerry was one of our former coworkers at the cop squadron at Luke Air Force Base. This was not the norm, so Brian and I were a bit alarmed that she felt compelled to talk to the people most important to her. She assured us she was fine, she just wanted everyone to be on the same page about what she wanted at the end. I knew what she wanted, she and I spoke about it, so I knew how and what she wanted her funeral to look like. But again, she assured Brian and I that it was not time. But, she knew. She needed to speak to Jerry so that, when the moment arrived, he would work on getting our former squadron involved in the funeral. She spoke to everyone, with Jerry being the last person. He came over to the house to talk to her. He left at about 5:30 p.m. I went back upstairs after he left, to tell her I was going to get something quick to eat, so she said, “Get some sliders from Carl’s Jr.” Mind you, she hadn’t eaten hard food in a very long time, but I would get the food for her anyway. The smell was enough for her. She needed to feel involved, and it gave her a bit of normalcy.

Before I left, I gave her medicine, and started her tube feeding for the evening. I also gave her the TV remote, so she could find something to watch on TV. By the time the tube feed ended, she dozed off with the remote control in her hands. I disconnected and cleaned the tube feed, and I woke her to let her know I was leaving to get the food. She said, “Don’t get me sliders, get me churros and a chocolate shake.” I left, got food, came back and she was snoring like a champ! I hadn’t heard her snore in years! I nudged her to let her know I was back and that I was going downstairs to eat. She nodded “OK” and went back to sleep. I ate, came back upstairs, I got the remote from her hands, and found something to watch. I laid across our bed, she was in a hospital bed next to our bed. I laid in such a way that our heads were near each other. Rachal called, she wanted to see how Ev was doing, so I remarked about her snoring, and that she was fine. Our conversation was brief. We hung up, and I began to watch TV. At around 7:32 p.m., the room got eerily quiet. I reached over to touch Ev, and she was gone. She left us peacefully. She was not in pain, her suffering was over. She knew … Evelyn fought with all she had for more than 7 years. In honor of her memory, and a pledge we made early on, I volunteer with The ALS Association, as well as with the I AM ALS Veterans Affairs group. The time she suffered with ALS has to matter, our experience with it has to matter. If our story can help anyone in a similar situation, our suffering will have not been in vain.

-Stewart Proctor