Braving the Unknown to Share the Light of Advocacy With Others
I enjoy writing for SMA News Today because it grants me a sense of freedom and independence. I basically have the ability to send out invitations for readers to visit the inner workings of my mind as someone with SMA. I have the freedom to select a column topic from my shelf of memories, and can also decide which memories I want to keep locked in the vault of my mind until later.
I’m comfortable with this because I’m writing to inspire people without being judged by my audience. We’re all friends here, and I can be myself.
Furthermore, I’ve been told that I write in a conversational style. That’s because I don’t get enough opportunities to have actual, spoken conversations. My voice can be understood by people who know me well, but for the majority, it’s difficult.
It’s like I’ve been storing up all the conversations I wanted to have over the years and finally have the opportunity to write them down! Combine that with the fact that I got an I-13 communication device, which uses a computer voice to speak for me, and this has been my most freeing year yet.
My fellow SMA News Today columnist Brianna Albers said she sometimes feels like she’s performing when she writes. I can understand where she’s coming from. For me, though, it feels like a relaxed performance rather than a command performance under enormous pressure.
I’m giving a command performance when I feel I must say all the right things to convince a nurse to choose my case. My new job ad, which I posted on Facebook, had to be revised perfectly. I feared that if I didn’t do my best, the people I was trying to attract would take travel nursing jobs instead of home care positions. Many nurses are doing this right now because it pays better.
If you or your loved one needs home health nursing, please don’t let this scare you away from writing your own job ad. Just writing the ad will probably help a lot. You have my permission to use mine as a template. Like I said, we’re all friends here.
I guess performing through writing does carry some pressure, but you can’t beat the results. I just posted the revised version of my ad last week, and I’ve already received a response from someone willing to work with me!
So, if you feel the need to put yourself out there through writing, videos, or other creative means, my advice is to answer the calling. It may lead to some uncomfortable moments, but the rewards will likely outweigh the risks. If you’re not getting anywhere with your efforts, feel free to reach out to me or another SMA advocate for more advice.
Somewhere out there, people are sitting in the dark afraid. Perhaps they feel helpless against policies that treat those with disabilities unfairly, or they feel like their chronic disease prevents them from having a say in their own lives.
It’s up to us to venture into the dark and show them the light of advocacy. It’s up to us to brave the unknowns of putting ourselves out there so that others can have a role model. The more we face the unknown and teach one another how to deal with things we never thought we could, the less there will be to fear.
So, in the spirit of friendship, let’s be there for one another and face our fears together!
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.
Hi Ari! It is good to hear from you again! I had wondered if you were okay! Thank you for sharing some of what you have been going through! I pray for you as does our Team! I always pray for 'Ari's nurses'! I guess it is like 'advocacy', something you are always 'working on', processing, what is the next proactive step? You ARE a role model, because you reach out, share, 'fight the good fight'...and you do it over and over again. I have been refreshing my memory of 1 Cor 3:12, 'Now if any man builds upon the foundation with gold, silver, precious stones..' and I think of you, Ari's are gold! Truly! Praying for you and for the health needs you shared! Susie