A couple times now I’ve touched on my surgery that didn’t happen at a hospital in Portland, Oregon. It’s an experience that was highly relevant to life with SMA and the therapy Spinraza, so it tends to jump to the forefront of my mind for column topics.
However, that was only part of my trip to Portland last year. I’ve only briefly covered the events that occurred just a day later. In my column, “Event Planning: Meticulous or Ridiculous?”, I mentioned that my dad and I got lost after a Trail Blazers basketball game. There’s much more to that story.
Following the “incident,” I was a mess due to the combination of emotional and physical devastation. The morning the surgery fell through, I was prepared to get out of there as soon as possible, go to my great-grandparents’ house to get some rest, and head home. Even before we left for Portland, I was hoping for a speedy recovery so that I could return home in time to watch the beginning of the NBA playoffs. I’m an NBA junkie, so April and May are sacred months for me.
To salvage the trip, I asked my dad if there were any way we could go to the home playoff opener for the Blazers the next day. I thought my chances of going were slim. After all, this was a playoff game on short notice. My dad has so many connections, though, including a season ticket holder who has been kind enough to let us go to a game of my choice each season for years now. I thought it was worth asking. Sure enough, he came through. I was going to my first NBA playoff game. My mood flipped 180 degrees. “It’s not what you know, it’s who you know,” as my dad often says.
On game day, my dad decided we should take the Metropolitan Area Express (MAX) to the Moda Center. It’s only about seven miles from where we parked our van next to a little coffee shop, but by train it took about 45 minutes. Although we arrived with no problems, I wouldn’t recommend that anyone with SMA use the MAX, or for that matter, most public transportation. On a train, germs are a big concern, because hundreds of people get on and off every few minutes.
I won’t spend much time talking about the game itself, but it was one of the best experiences of my life, even though the Blazers lost. It came down to the last second. Post-game is when this story gets interesting. It was time to make our way back to the van, and we got on the wrong train. The irony of my dad’s favorite quote is this: He knew who could get us into the game, but he didn’t know what train to board.
The interesting part is that once I had some time to reflect, I knew it was the wrong train. I’m so used to having everything done for me that sometimes I forget to think for myself. I want to encourage my fellow SMA people not to subconsciously fall into similar traps. I blindly followed my dad, but if I would’ve stopped to analyze the situation, we could have avoided the enormous hassle that followed.
The train routes are confusing, so after getting on the wrong one, it’s not as simple as getting off and then getting on the right one. We ultimately got to the right station, but the train we needed was a half-hour away, so we finally decided to call a handicap-accessible Uber. Coincidentally, the train we were waiting for happened to break down. It’s a good thing we ordered the Uber when we did because the breakdown resulted in an immediate increase in Uber demand. The driver was one of the coolest guys I’ve ever met.
It was a wild, unique evening for me. It also was a valuable learning experience. Although the conditions were less than ideal, I’m glad it happened because it was so memorable. Sometimes deviating from the monotonous grind is a good thing, even if it’s uncomfortable.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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