Hey, how are ya?
I just got back from alumni weekend, which was amazing. My agenda was full: catching up with old friends about post-grad life, checking in with buddies who are still students at QU, and, of course, partying. YEAH I PARTY, I’M THE MAN!!! Just kidding. I will admit that I like to live it up on the weekends. What’s ironic is that back in high school, I was not a big partier. When I learned that I had FA, I didn’t want anyone to know, except for my family and close friends. But, as my condition progressed, my speech became sloppier and walking became harder. Basically, for anyone who wasn’t aware of my condition, it looked like I was drunk.
By the time my buddies and I were sophomores in high school, partying became the popular thing to do on weekend nights. For me, too much partying made speaking clearly and walking with coordination a constant challenge. One night, we went to our friend Anna’s sixteenth birthday party at her house. Her parents had made it clear that there would be no drinking, and that they would tolerate no funny business. They also made it clear that Anna’s uncle, a cop, would be at the party. Jesus relax, I thought to myself.
My buddies and I walked from my house to Anna’s, which was close by. We got to the front door and rang the doorbell. It felt like judgment day. Anna’s parents greeted us warmly, then eyed us like hawks as we wished Anna a happy birthday. You could tell they were sizing us up for any suspicious moves that indicated alcohol consumption. Uncle Cop loitered as we filled our cups with Sprite and dipped our chips in salsa.
I probably gave off suspicious vibes because I was so nervous. I was worried that despite being dead sober my FA symptoms would show. These FA symptoms were still new to me, and every day I felt like I had to readjust my game. I wasn’t confident that I could always hold my body steady. FA was still early in its progression. I could still walk, yet it was becoming harder to do so. I didn’t yet use a wheelchair or any kind of walker. I relied on my buddies to physically help me at times. At the party, I kept saying to myself, “just stay cool.”
By the end of the party, I was physically spent. Standing around all night made my balance worse than it had been when I arrived. My mind was also exhausted from worrying so much about being “wrongly accused.”
Then, my friend Petey went to the garage to grab a bottle of water, and I decided to join him. Anna’s dad followed us into the garage. He stood by the door and just stared at me…the whole time…without saying a word. From the way he was looking, I could immediately tell he thought I was drunk. All of a sudden I had developed a sixth sense for that. He eventually walked away, but I couldn’t shake the feeling that something bad was going to happen.
We walked back inside. “Excuse me,” the dad said to me. “Please come outside.” Petey began to walk out with me. “Alone,” the dad said to Petey. Like two lost puppies, we parted ways.
All I could think was, SHIT, SHIT, SHIT, it’s actually happening.
“How drunk are you?” the dad asked.
I just stood there like a zombie, which probably added to his belief that I was drunk. I don’t remember my exact words because I was so nervous, but I gave some cop-out answer. The dad then turned to Petey for an explanation.
Petey explained everything while I stood next to him. I said a few words, but Petey did most of the talking. I knew in my heart that this would not be the last time I would have to explain myself to someone who had no clue what was really going on. Why did I feel like I owed this person an explanation for something I couldn’t control? I immediately felt hurt and confused – just not myself.
Petey explained to the parents what was going on, and they were great about it. It didn’t matter. I was rattled. Petey, who was my best friend back then and still is today, acted cool with me as we exited that tough conversation. “Brush is off,” Petey told me. I couldn’t. We went back into the party to join our friends. I tried to enjoy myself, but I couldn’t. A little later, my buddies and I left. We all walked back to my house and crashed. Besides Petey, nobody knew what happened, which I preferred. I acted as if nothing had happened. Internally, I was hurting.
“Why are you doing that?”
“What is wrong with your legs?”
“How drunk are you?”
“Has anyone told you to watch where you’re walking?”
These questions became common. At first, they felt like accusations. For some reason, people think it is okay to ask questions like this. Can you imagine having to explain yourself all the time to people who automatically assume the opposite of what’s really going on? Let me be. CAN I LIVE?
I think the real issue of why Anna’s Sweet 16 became bitter for me is because I felt judged. The reality set in that I would have to deal with judgments going forward. Repeatedly I would have to prove to people that what you see is not what you think. That fact – on top of losing my motor skills, muscle strength, ability to walk, and ability to hold a water bottle without dropping it – was a tough pill to swallow. This is one example of how I was forced to grow up and mature at an early age. Life has a funny way of forcing tough situations on you. The only real choice is to deal with it.
Nobody except for Petey knew what had happened that night at Anna’s – not even my parents. I bottled it up. In hindsight, I wish I hadn’t. Not sharing or expressing emotions implies shame, and there is nothing to feel shameful about when going through a tough situation. What I have learned is that finding a way to address what you are feeling – through exercising, crying to your roommates, venting to your mom, or eating an absurd amount of food – is healthy and necessary. So just do it. Do whatever you need to do. Just don’t pretend like it never happened.
Sometimes judgments are healthy. I completely understand why Anna’s parents were on my ass that night. Their intentions were to keep their daughter safe and to keep their own interests intact. They did not want anyone to drink at the party and get sick, or leave their home and do something stupid. I get it. In that situation, their judgement came from a good place. Judging people is only wrong if you are looking for reasons to put them down, alienate them, shame them, or just hurt them on a deep level.
It is easy to judge others based on outward appearances. You wouldn’t assume somebody dressed as a slob could be a millionaire, or that someone short could be in the NBA. Everybody counted out the 2017 Patriots when they were down 28-3 in the Super-bowl. As the saying goes, all people judge all the time. However, we would all benefit from becoming more aware of judgmental tendencies.
Many people look at me – a young adult male with chicken legs, trying to look like Marky Mark, and in a scooter – and assume that I have it tough. Yes, my situation is not ideal. However, I have a great family, awesome friends, and I continue to grow each day. It would be easy to judge my situation by looking at me physically in a scooter. Yet, you may not even notice an able-bodied person walking down the street who may have bigger problems than you could fathom. That person may have a terrible home environment, sick relatives, or something even more awful on their plate.
Someone may look pretty bad on the outside. But, you never know what someone else is dealing with on the inside. Instead of making snap judgments of others, try giving people the benefit of the doubt.
Never judge a book by its cover; you might wind up missing the best read of your life.