Opening the Borders of My Heart to Unique Friendships and New Strategies

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by Ari Anderson |

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sma technology | SMA News Today | Main graphic for "Soaring With Hope," a column by Ari Anderson

Have you ever noticed that people are similar to countries, and vice versa?

Everyone has their own exports (products or services we produce) and imports (products or services we buy, such as food). Two or more individuals can become like allied nations when a friendship forms and they begin to help each other out. One alternative to being allies is breaking off international relations. On a personal level, this means breaking off contact, including unfriending them on social media

No, I’m not trying to sneak in my political opinions on global issues. I am writing about how those of us with SMA are influenced by the world, and how we can influence it. Realizing when to break off a contact and when we can benefit from a contact is key to surviving with a chronic disease.

Although I mentioned in a previous column that my mom says, “Never burn your bridges,” there are a few occasions when we don’t have another choice. If someone makes you fearful or uncomfortable, then do what you have to do. Block them, and close your borders to them however you can.

On the other hand, people often have the typical disagreements with others, and they may get tired of being on social media in general. Personally, I can’t afford to totally shut myself out from the world. I could choose to only deal with people who take care of my medical needs, and say “adiós” to everyone else.

However, becoming a “country unto myself” would be detrimental to my well-being. I knew this before, but the past month has shown me how true it is.

For the past few weeks, I’ve been experimenting with something that could usher me, and potentially others in my situation, into a whole new chapter in our lives. Right now, in many areas, the pool of nurses that home nursing agencies employ has dried up. Nursing agencies just don’t see a lot of new recruits coming in.

Thanks to my experience and other patients’ perspectives, I saw this trend happening three or four years ago. It has taken the COVID-19 pandemic for me to realize that when things aren’t working, I need to try another strategy.

Instead of the nursing agencies doing all the recruiting, I have taken on this responsibility as well. A few weeks ago, I wrote my own job ad and posted it on social media. My ad was read by a wide audience, including both medical professionals and laypeople.

Although my state’s Medicaid agency does not allow nonprofessionals to take care of me, nonmedical people can still help me in other ways. One of my contacts was bound to know someone who knew a nurse who could work.

Following is the networking path that led me to success:

A girl I went to high school with saw my ad on Facebook. Her mom, a nurse, used to take care of me, and she has a friend who works in home care. The girl showed her mom’s friend the ad, and she is now working on my case! (Note: Any nurses I find will still be employed and paid by my agency.)

See how a layperson I hadn’t seen since high school 20 years ago helped me out? Yes, that’s only one hire, and I need to find at least three or four more nurses. Still, finding one nurse only a couple weeks after I started doing my own recruiting is pretty good. Anything is possible when you retain as many digital contacts as you can.

If you require nurses or personal care workers in your home and want to try my experiment by doing your own recruiting, following is some more advice.

Remember how I said that some friends and allied nations are similar because they help each other out? In my job ad, I told nurses that when they help me, they allow me to help them.

I explained, “Mr. Anderson has fought for your pay … in the State Legislature for 20 years. So, you see, you really do need Ari just as much as he needs you!”

Even if you or your loved one aren’t involved in political advocacy, you can still explain how much joy your case can offer a nurse or worker. We all can give something.

If you have medical challenges and need to take a break from people online for a while, I understand. I’ve done the same thing. Just try not to close your borders completely. Finally, always look for those mutually beneficial relationships that create unique friendships!


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.

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