Suggested by Mel with special permission to share something particular. This, is the story of how I died.
Hearken back to the year of Our Lord 2016. I had begun working with a phenomenal group, and we were building everything from the ground up. Apparently, I was better at that than following procedure, because I improvised, adapted, and overcame, as Rikki could attest to. Granted, she was worried I would go all cowboy among some stodgy suits. And she was right to because that is exactly what I did because otherwise, nothing would have happened. Sorry, Rikki!
Anyway, there came a point where I was looking at a career change. I had my hopes set on FBI agent, and I was training like mad for it, recovering from a ruptured Achilles the summer before. After working out, starting in November or so, I started to get cramps in my left arm while I reached back to flip my collar over my tie. It didn’t happen in the morning, only after working out. So I chalked it up to a good workout!
This continued, I sprained my left knee and could only do upper body and core. Then in February I was talking with people at a conference, my closest coworkers from North Carolina who are like sisters, along with Jo Lea, another wonderful colleague, and I couldn’t talk right. Like I had permanent nasal drainage that was affecting the back of my throat.
Those were my first signs.
At some point, my left arm and hand started twitching, minor at first, but noticeable after a while. Then at Easter, I’m told, Jessie asked me if I was ok because she was worried I had a stroke. At this point, and I don’t remember, Mel yelled at me, asking me why I talked like this. And yelled that she told me to get checked out if I was worried. I think I had already checked WebMD, and I either had ALS, stage 6 cancer, or I was possessed. Thanks, WebMD! This is what made Mel upset because I had mentioned it, while we were just getting Jack’s autism diagnosis, planning on moving, while I was still intensely training for the FBI, and Luke was turning two. It was a lot going on.
I made the call to a neurologist on the way to my cousin’s funeral. I was driving out to Front Royal. The receptionist on the other end was taking my symptoms and telling me it would be a while for an appointment. Then she called me back and told me with these symptoms I would want to go to an emergency room because it might be a stroke! I thanked her and went to the funeral because I knew it wasn’t a stroke.
The next Monday I think I went to the ER at Haymarket because they had a shorter wait. And I was there all day, they had no neurologist on staff and the call-in couldn’t find anything wrong. Then at like four or so a neurologist came by and seemed concerned, but couldn’t diagnose anything. We even asked one of the doctors, “is this ALS?” They were all so positive it wasn’t. So there I was, about to become Thripshaw’s Disease, and we still didn’t have any idea what it really was.
I finally scheduled an EMG at a neurologist near the hospital, Dr. Hachicho. She’s from Lebanon, and she was very compassionate and understanding of my dislike of needles. I was by myself, and I didn’t want to pass out. An EMG is where they stick a needle that is wired up at the end of your arm or leg, then they shock the top of your arm or leg, and measure how long it takes for the electrical signal to travel between the two. Needles and shocks. It’s actually quite funny and I would laugh each time, because it’s basically a localized tazing. So I’m in there laughing, and the doctor is serious.
When she finished, she had me sit up, and praise God she was honest and blunt. “I think it’s ALS,” she said quietly. She then gave me a referral to a clinic for treatment, because she knew she couldn’t treat me. (Ironically, the clinic she referred me to was the before mentioned doctor with the excess decolletage.)
I left the doctor to meet Mel, who was at swimming lessons with my nephew. I texted her first, but we sat there despondently for a bit. Then we went home. I wanted a second opinion, and I got an appointment with the best EMG doctor around, Dr Kurtzke. We were waiting to get a clinic appointment too, so when we spoke to him and he did the test, he confirmed the suspicion but offered two pieces of hope. Have faith in God, and the referral to Dr Maragakis at Hopkins. He’s the best. We have been going to him ever since.
There are other bits and pieces, like how it might be some other treatable diseases, and how hard it was to test for ALS until it was more advanced. But I didn’t have false hope, I knew what I had and needed to come to grips with it.
At one point I was lying on the bed, crying uncontrollably, and Mel was with me. I remember screaming in my head, “Mommy, help me!”, asking Mary for help. I won’t say I got over it, but I felt in that moment that someone was helping me, easing my worry. Never underestimate a Mother protecting her children and a Mother asking her Son for help.
This was one Mel suggested. I welcome comments that add to this account as well as your reactions. For me, I’m at peace with it.
And they lived happily ever after.