My New Role Here at ‘SMA News Today’

Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here on SMA News Today and sharing my thoughts on a wide range of topics has been liberating, rewarding and it has allowed me to connect with others in the SMA community. Now, I’m taking things to the next level with my role here.

I was always an active student in grade school and college, so the transition to post-college life hasn’t been easy. Going from a full class and work schedule to a significantly more relaxed pace at home has had its benefits, but it’s also made plenty of days feel kind of empty. I need more to do with my time than just a few articles a week and my creative writing projects on the side. I need to feel like I’m contributing something of value on a daily basis.

Now, however, the tide has finally turned. As of this week, I’m now a full-time employee of SMA News Today!

It started a couple of weeks ago, when my executive editor Mike and I were brainstorming ideas for how I could use my Amazon Echo Show device to create new content for the site. I suggested doing a podcast, in which I could interview people in the SMA community.

I have a lot of experience with podcasting, theater, journalism and speaking engagements, and he loved the idea. This led to more conversations about what I could do, and he came away thinking that I had a vast knowledge about the SMA community and also a set of valuable skills.

The next day, Mike emailed me and said that he and the other Executive Management of Bionews Services had been looking for a patient specialist who could take a more active role in creating and reviewing web content. He told me he loved my ideas, and proceeded to offer me a full-time position at SMA News Today.

The big issue for me wasn’t the time commitment or the work itself, but whether I could do it and still retain Medicaid. As I’ve said in previous columns, I need Medicaid to cover care as one of my primary insurance providers, as well as to cover the majority of my care-giving costs.

So my Mom and I did some research and spoke with a family friend who works for an insurance provider, and, as it turns out, I can still keep Medicaid and earn a decent salary. The laws with North Carolina Medicaid have changed so that if people have been on both SSI and Medicaid, they can work and just give up their monthly SSI checks. It’s a complicated system, and I don’t pretend to understand half of it. The bottom line is that I can keep my Medicaid and work, which is huge.

In my new position, I’ll continue my weekly column; review, create and edit web content for the news page; record weekly audio flash briefings, which can be accessed through Amazon Alexa devices; help with social media; and possibly do speaking engagements at conferences and other events, down the road. I’m also working on developing the SMA News Today podcast, which we’re planning on doing monthly, once it gets up and running.

It’s no doubt a big undertaking, but I couldn’t be more excited. The prospect of a full-time occupation is something I wasn’t certain I’d ever be able to acquire. I knew I’d always be doing something, but I tried applying for part-time jobs out of college and nothing came of it. I kept focusing on my writing and doing some volunteer work, but in the back of my mind, I was worried that I’d be among the overwhelming number of people with disabilities who are unemployed.

Just this past June, the Bureau of Labor Statistics reported that only 17.9 percent of people with disabilities were employed in 2016. For all the talk about fairness and equality in today’s society, there are still too many people who think that disabled Americans have nothing significant to offer in the workforce. This is an attitude that needs to change, and it starts with people like me working harder than everyone else to defy this stigma.

This is definitely one of the biggest steps I’ve ever taken in my life, and I can’t even walk! Probably the best part of this job, because it’ll still be done remotely, is I don’t even have to wear pants to work. Now that’s freedom. Also a huge shout-out to all my family, friends and colleagues who have supported me over the years, and to my bosses here at SMA News Today for giving me this tremendous opportunity.

The only drawback is that I now have to pay taxes. Man, the government ruins everything.

***

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.