A Different Kind of Valentine’s Day

A Different Kind of Valentine’s Day

Kevin Embracing my inner alien

Full disclosure: I think Leif Erikson Day is far more legitimate than Valentine’s Day. Even though its popularity stems from the fictional universe of “SpongeBob SquarePants,” at least its origin isn’t directly linked to a beheading. Though I do think that the Valentine’s Day episode in season one of “New Girl” is a brilliant half-hour of television, more often than not I poke fun at this sheer corn-fest of a holiday.

Yet amid all of the ads for gifts to give to your significant other and trailers for heartwarming date movies like “Happy Death Day 2U,” this time of the year forces me to confront certain truths about where I am in life.

At 25, I am single, living with my parents, unable to drive a car, and reliant on other people for my basic physical needs. Yet despite these circumstances, I am not miserable. In fact, my life is better than the lives of a lot of people who have more abilities than I do.

Here’s the thing though: There was a time in my life when the circumstances of living with SMA did indeed push me toward misery. During my high school and early college years, I felt like I was missing out on the experiences of a “normal” teenager. Despite being active in school and church groups and liked by people, the hardships of my disability stared me in the face every day. At my lowest point, I felt burdensome, lonely, depressed, isolated, and frustrated beyond words. I also had crippling anxieties about my future and if and when things would get better.

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I’ve written about this many times before, but things did indeed change for the better. I sat my parents down and had serious conversations about getting outside help so that I could live more independently. These discussions led me to hire and to learn how to work with caregivers and to develop strong relationships with these people. From there, I sought more independence, and over time, I reached many of my goals in this area.

Still, none of this would have been possible without the friends and family who have supported me every step of the way. Friends often comment that “I know everyone,” given how many people call me by name when I’m out in public. It’s true that I have a large network of friends from various walks of life, and I’ve found it to be quite rewarding to know so many people.

Over the years, I’ve lost count of how many people have given me a ride in my accessible van, shared a meal with me, or accompanied me to a movie. I realized just how vast my support system was in 2015 when I ran a GoFundMe campaign to raise funds for my JACO robotic arm. Within 24 hours of the campaign launch, we raised more than $1,000 from dozens of people.

Instead of showing my appreciation toward a single person on Valentine’s Day this year, I’m expressing my gratitude to all of the people in my life who have helped make it better. Whether it’s a friend with SMA who I can relate to and share experiences with, a friend from college, or someone I geek out with regularly at the comic shop, I’m thankful for each and every person in my life.

If someone reading this is in a similar situation as me, here are a few reminders for you. Being single is not a curse; friendships are valuable beyond words; joy is more than attainable for people with disabilities; and above all, there is nothing wrong with watching the ridiculous slasher film “Happy Death Day 2U” on Valentine’s Day with friends.

Whether you’re single, in a relationship, or losing your mind trying to tackle the idiosyncrasies of planning a modern-day wedding, enjoy yourself on this insanely cheesy holiday.

If you are struggling or you simply want to connect with more people in the SMA community, register today for the SMA News Today Forums and join the many discussions there.

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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.

Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.
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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.

2 comments

  1. Jennifer Rellick says:

    While it’s important to accept our lives as they are, we should not let acceptance of being single become a problem. Sometimes rejection really hurts, especially if it comes from a friend and makes the friendship awkward or over. If your disability has ever caused you to be rejected, the most important thing to accept on Valentines’ Day is that you may have to be rejected a hundred times just to have one relationship, and if you postpone getting rejected, it gets harder to find someone. When you don’t put in the time getting rejected, you are rejecting yourself from love and the part of yourself that love unlocks. Man or woman, you have to take the initiative, and you should treat it as your job.

    Try starting your on-the-job training with someone who doesn’t know you well but who you are curious about. Someone who you don’t have a long friendship with and don’t daydream about is best. They can’t hurt you much by saying no. One approach at such a person could be, “I’m planning to see ___ movie this weekend, and I thought it would be fun to invite you. Would you like to come?” If you’re rejected, hold your head high and say, “Okay, I have a friend who never passes up a movie. Have a nice day.” Never feel embarrassed for asking (unless they are wearing a wedding ring.) If you get a reputation for asking people out, even if you get rejected a lot, it lets people you are a sexual being–not a taboo being and not a child–who is looking for love like everyone else.
    If you get a date and it goes well, that is awesome. If it goes badly, it might be the other person’s attitudes, but it might be something you did, like giving no signals or trying too hard. Don’t beat yourself up, but a few days later, reflect on when it was clear to you that things got weird and think about whether you did or said something right before the date turned bad. If you can’t think of anything, it was not your fault. If you know you made a mistake, don’t beat yourself up because you did your job, and you are getting on-the-job training. Be happy because you won’t make that mistake again with someone else. Once you get used to asking for dates and having good dates, you can decide if you are ready to take risks with someone you already know and want to take to another level.

    • Kevin Schaefer says:

      Thanks for commenting Jenny! I completely agree that we shouldn’t restrict ourselves to singleness. The main thing I wanted to get across here was that loving yourself is equally important, as are true friendships.

      Great advice too! Yes, it’s important to remember that everyone faces rejection, and that’s ok. It definitely shouldn’t prevent us from pursuing romance. Thanks for sharing.

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