With the annual Cure SMA Conference having recently wrapped up, the topic of travel has once again leaped to the forefront of discussion in the SMA community. The conference was on the West Coast this year, close enough for me to drive to.
I attended the 2016 conference, also at Disneyland, and it was a wonderful experience for me. I wish I could have gone this time, as I’ve made numerous connections online in the past couple of years. Unfortunately, I wasn’t able to make it, because I had to travel somewhere else: beautiful La Grande, Oregon.
Let me assure you, I would not have traveled to the desolate plains of eastern Oregon instead of Disneyland unless it were of the utmost importance — and it was. I was going to be the best man in my cousin’s wedding. I was excited, but a lot of unknowns were also involved. I hate the unknown.
Typically, when I go on trips, I can plan for potential obstacles ahead of time. With this event, however, I was largely in the dark. My biggest concern was my unfamiliarity with the venue, which was a camp. My dad had a chance to scope it out a while back and gave it the green light, but in case you didn’t know, camps and wheelchairs don’t mix well. I know that even the most minor oversight could be disastrous for me. I hoped for the best, though, and it turned out well.
The camp, though predictably less than ideal, was accessible enough. I didn’t know what bathroom facilities would be available to me, and I was prepared to use a setup in the back of my vehicle. I was allowed to use a small house as a restroom, which I was thankful for. The best man shouldn’t have to pee in the back of a van.
The wedding was to be outdoors, and I was concerned about having to drive my wheelchair over rough terrain. That problem was solved because the van was able to drop me off at the ceremony’s location.
The next unanticipated thing was that it started to rain while pictures were being taken. It wasn’t pouring, but it was raining hard enough that I grew increasingly concerned for the well-being of my chair and my JACO robotic arm (Jack). Thankfully, no harm was done, and by the time the ceremony started, the sky was completely clear. I was glad, although I was secretly hoping for a chance to hold an umbrella with Jack.
As best man, giving a speech was part of my responsibility. I was better prepared for this, as I’d spoken at church in front of about 300 people in January, and that had vastly increased my confidence. Public speaking is still not something I feel comfortable doing, but despite my nerves, my speech was well received. Numerous people gave me positive feedback. One guy, who said he’s been involved in many weddings, told me my speech was the best he’d heard.
SMA forces me to be a meticulous planner, but sometimes there’s only so much I can do to prepare. If you find yourself in a position like this one, heed the advice of my former nurse, who often told me, “Plan for the worst, hope for the best, and handle the situation as it arises.” You should be able to prevent any colossal obstacles and improvise with more minor issues. Prepare to the best of your ability, then let the chips fall where they may.
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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