Without coming across like a total diva, I have to ask the Universe a simple question: Is it too much for a girl to get a personal assistant around here? And I’m not just referring to hiring caretakers — we all know that’s a huge feat by itself. I’m talking about hiring one of those people who carry a planner in one hand and a cellphone in the other, and who always seems to be doing something pretty important.
All right, so I’m kidding. But I think that in my perfect dream world, I’d hire an assistant just to help with coordinating social activities. I caught myself drifting off into this daydream a couple of weeks ago when I was trying to coordinate a simple Saturday night out with friends.
I typically don’t have caretakers on the weekends, but I’m incredibly fortunate to have a group of friends who understand my needs and are willing to help out whenever they can. However, because of my unique circumstances, planning a get-together involves a lot of back and forth and creative thinking. Allow me to explain using this Saturday night as an example.
My friend is getting married this summer and had asked her bridesmaids to get together for a girls’ night at her apartment about 40 minutes away. Not only was I contending with distance as far as my transportation was concerned, but I also was dealing with an impending snowstorm.
I reached out to my friends who also are in the wedding party to see if they could drive me, but because of inclement weather, they decided to sleep over. (Because I need around-the-clock care, sleeping over wasn’t an option.) My next, and final, option was asking my parents. I hated having to ask them because I knew they’d say yes regardless of how inconvenient it was. I conveyed my feelings and frustrations via text to one of the girls in the wedding party, and that’s when we started to get creative.
An unnecessary amount of planning went into coordinating this, but our game plan was as follows. My friend’s fiancé would drop her off at my house 15 minutes in the opposite direction of our friend’s apartment, our other friend would drive herself to my house, and then the three of us would go together in my wheelchair accessible van. Once my parents finished up at church, they would drive home to grab my friend’s car and drive it to the apartment to pick me up. From there, we’d swap keys, and my parents would drive me home before the snowstorm.
Favors were asked, inconveniences were made, and I must have apologized to my parents and friends a dozen times for causing a raucous. Of course, they assured me they are more than willing to help and I’m never a nuisance. But sometimes, I can’t help but feel overwhelmed by matters such as this. I’m not a jealous person, but every now and then I envy those who get up off the couch, hop in the car, and just drive to wherever the second their friend’s text comes through. I have never known what that luxury is like, nor will I ever.
While I’m not that popular and my social calendar is hardly ever filled with plans, I still wish socializing was easier logistically. I find myself becoming more and more introverted, and a part of me believes it stems from simply not wanting to feel like a burden to family and friends. Truthfully, I’d much rather binge-watch “The Office” at home with my dogs than feel like I’m inconveniencing others. But at what point do I stop feeling emotionally drained from planning (and opting for Netflix on a Saturday night) and start socializing with my peers more?
Also, where are all my personal assistants at?
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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