Walking In My Shoes: Living WITH FALS ( Episode 3 )

Come and embark on an emotional journey for answers. In this six-part series. You will read about the struggles that many PALS face in the pursuit of a diagnosis. ( Episode 3 )

Blog Post 3: Aftermath

I don’t know what was worse—confirming that I was right about having ALS or the cold way the doctor acted. How can a doctor who treated me so kindly be so cold? I was so confused about everything. I knew that the doctor and my wife were talking to me, but I had disappeared into my mind. As we waited in the waiting room for a copy of my records, I could not hold back my tears any longer. The secretary was so much kinder than my doctor. She tried to calm me down, but there was nothing anyone could do to calm me down after receiving the news that I was going to die.

After two years since I first started to fall down, we finally got the answers we had been looking so hard for. I wish I was wrong about everything. I don’t want to die; I had just turned 38 years old. What was I going to do about everything? I had only been married for four years with a one-and-a-half-year-old baby girl. I’m not ready for any of this, but who can ever be ready for something like this? My wife did not understand how bad ALS was. On the short drive home, she kept trying to tell me everything would be okay. From everything I had read about ALS, she had no clue what we were about to face.

The doctor had thrown me into the deep end of the pool without any help. She left me without any resources to help myself. What kind of doctor does something like this to anyone? I was left in a state of instant depression and hopelessness. This is no way for anyone to receive news that changes their life in this way. Arriving home was tough, with the emotional rollercoaster of feelings. I lived on the second floor of a four-story building. Getting through my neighbors with tears running down my face was not easy. They kept stopping me to find out what was wrong with me.

I spent the next year at home without any help with my new way of life. I had to learn how to deal with what I call "The Evil Three." This is the name I’ve given to the process of dealing with ALS that all PALS (people with ALS) have to face:

Anger – The first stage, when you’re angry about everything.
Depression – This is the worst of the three. I saw so many PALS in my ALS Facebook group get stuck on this one.
Acceptance – This one is also hard to overcome. Telling someone who is dying that they have to accept the fact that they’re dying is difficult.

Once you pass the three stages of "The Evil Three," you can get back to fighting to live.

Getting used to my new world was very difficult. My symptoms had gotten worse, and I didn’t know how to manage them. At least once or twice a day, I was falling down. Then, I had one of the biggest scares of my life. I was holding my baby girl in my arms, walking to our bedroom to change her. As I stepped into my room, my legs stopped working. I was going down with my little girl in my arms. Thank God for all my years of karate. I was still able to turn in mid-air and take the impact of the fall to my back without hurting my little one. This was the last time I walked with Sarah in my arms.

Before my diagnosis, I had been out of work for two years. All my savings went up in smoke with daily living costs. Disability had denied me twice because my diagnosis of myopathy wasn’t enough for me to qualify for disability insurance. I was left with no choice but to hire a lawyer. Five thousand dollars down the drain. A month after we hired the lawyer, my diagnosis was upgraded in the system to ALS. After all this time, I finally was able to get my disability insurance. No one can prepare you for how expensive everything is when you have ALS.

( Episode 4 Will Post Next Sunday )