Once again I apologize for my language but today was another fuck ALS day.
For the past three weeks my emotionality has been peeked and I have been crying a little more than usual. In fact, I’ve been crying so much that we’ve been calling Mark “Fetch” because he is always fetching tissues for someone, usually me.
But before you start to feel sorry for me, please stop because emotionality is a symptom of ALS. In fact, crying, laughing and yawning are all part of this crazy disease. Also, if I laugh at an inappropriate time, like in church when Kelly pulls out a used tissue from my pocket and gives me a dirty look and I start laughing, it’s the ALS. Some day I may have to excuse myself from church altogether because of laughing or crying too loudly.
Today was a tough day for me. Mark, Kelly, my sister Deb and I visited the St. Mary’s ALS Clinic for the first time. It was a wonderful experience and the people were amazingly helpful and resourceful. The clinic part of my day was good but the hard part for me was that we exposed my sister Deb to the harsh reality of my new life during this appointment, her first ALS appointment. Emotionally, I was not prepared to look at her during my appointment because I was sad for her and I. I was sad for all of my siblings and Mark’s siblings. Deb was strong throughout this five hour appointment but I wasn’t, not today. Today I embarrassed myself with all of my crying.
The greatest part of my day at the clinic was that they gave me a new medicine to help me control my crying, laughing and yawning. Too bad I didn’t have it before the appointment, because poor Deb saw the ugly part of me.
I love you and thanks for spending the day with us. I know our strong and loving bond will never change no matter how much I cry in front of you.