I’m taking the opportunity to invite friends over to my home again

With SMA, I work hard to take advantage of every opportunity that comes my way. But what if I’m missing something? What if there are opportunities that are within my grasp, but I’m not aware of them?

That’s why I’ve been doing some inner exploration. It can teach both readers and me something about myself.

My determination

Let’s start by taking a few pages from the shadows of my past. My whole life, I’ve had trouble making friends. One main reason is that it’s hard for people to understand my speech if they aren’t around me often and aren’t used to the way I talk.

There have been times when I was determined to work through these difficulties and make friends anyway, with periods of success. The more determined I was to be someone’s friend, the more they wanted to learn my speech and understand my words.

A decade ago, I’d invite a few friends over to my house on Sunday afternoons. We had a good time getting to know each other. My mom was always on hand to translate whenever they had trouble understanding me.

Unfortunately, since 2016, I haven’t invited any friends over just to hang out. I couldn’t have anybody over besides nurses during the pandemic, anyway.

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My current goals

Now, I think I’m missing precious opportunities. It’s time to start inviting friends over again.

Some of my nurses do become my friends, but at the end of the day, they are getting paid to do a job. Their education and training taught them to maintain a professional line. That’s why it’s so important for me to have friends over who are just there to hang out.

My mom recently said something that motivated me to start having friends over again. We moved into a new house over a year ago, and my living space is in the garage, while my mom lives on the first floor. The second floor is for my sister and her family, so neither my mom nor I goes there.

Whenever I use my vertical platform lift to go up to the first floor, I’m always amazed by how beautiful it is. There are plenty of warm, inviting rooms filled with loveliness, including two dining areas.

When I was up there recently, my mom told me, “You know all this space is for you as well, right? You’re free to have friends over here whenever you want.”

Those words brought my head and heart out of the garage and gave me a strong sense of belonging to a wider part of the house. I felt freer to invite friends over and spread out on the first floor.

In a previous column, I explained that with most people, I communicate using Tobii Dynavox’s TD I-13 and other augmentative and alternative communication devices. I love these devices, but I didn’t have them when I invited friends over 10 years ago.

I now use these devices to communicate with most people, but I still like to use my natural voice with three or four people — my mom and a couple of nurses — to keep up the practice.

When I start inviting friends over just for fun, I’ll have more people I can practice my speech with besides my mom and nurses. The first few times, though, I’ll just use my TD I-13. I want them to get comfortable with me before they try to understand my real voice.

Even once they get to know me, I may still just use my TD I-13 with most friends. The device has been a game-changer, allowing more of my words to be understood. It is indispensable, helping me communicate my needs and build relationships.

I look forward to inviting people over soon. Instead of missed opportunities, I’ll have more chances to soar!

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.