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There's No Guidebook to Disabilities


There's no guidebook to having a disability. 

I guess you could say that about having any minority-determining or stress-inducing factor you deal with. But for now, I have the urge to reflect on what it means to create your very own guidebook for your life.

After years of going to school while working part-time jobs, then moving to the workforce when I graduated from LSU, and then the constant go-go-go lifestyle that America is so known for, my body just shut down thanks to my disability. For seven months of being on short-term disability, I sat in my house and wondered if I'd ever recover from this bad spell of fatigue and soreness. Those seven months were some of the more trying moments in my life.

Between determining if I could work again, if I wasn't letting down the organization I was working for, feeling like a huge burden to the loved ones around me, wondering if I could take an impromptu nine hour trip to Tampa in the middle of the night while on STD (spoiler, I did), and just sitting in my bed for weeks praying that I could find answers to all of these questions, I just felt like I needed help.

During that time, I searched for books, interviews, communities, and support groups and struggled to find help. I thought, hey, maybe I should write a book, attempted to write some of it and then very quickly discovered why it takes writers so long to get a book out. Ultimately, I found very little knowledge, inspiration, and insight.

Then, right around Christmas of last year, I discovered that I was approved for social security, and I thought finally, I would have the space and the time that I needed to figure this whole disability thing out. I could be free of worrying about financially and physically sustaining myself and my body. It was quite the Christmas miracle I was hoping for. I resigned from my job officially and felt endless relief.

I could finally start living my life, instead of worrying if I can even get out of bed to work the next day. I could finally start volunteering for non-profits without worrying if it would ruin my chances of regaining my strength enough to get back to work. I could finally start driving my car again at limited intervals because I had the time to rest after. I regained a lot of the freedom that I had lost.

So I took that freedom, and that blessing of the Social Security office's decision, and I decided that I would give back to the community that was helping me. I signed as a volunteer for MDA, I signed up as a volunteer for the ADA office in New Orleans, I became an Ainsley's Angels ambassador, I joined the planning community for our local Disability Pride Festival. So many wonderful opportunities and I'm so wonderfully excited to do them all!

And then my body reminds me why I quit my job in the first place. After three days of meetings and planning, I realize that I'm still not Superman. There's only so much you can give of yourself as a person, especially as a person with a disability. Want to know the craziest part of it all? Knowing that only you can decide for yourself what that limit is. It's such a difficult thing to balance and to learn from. Oftentimes, having a physical disability is way more mental than you'd think it would be. Having to learn what you can do, and what you can't is half the battle of living with one. Throw in the anxiety and the fear that comes from feeling like you are letting others down, and you realize the weight of how that balancing act is even more vital.

My anxiety also has to make the disclaimer that if you're involved in any of the above activities and you're reading this, don't worry, I'm taking the time to rest and I will be just fine after laying in bed, cuddling with my dog, and watching more happy-tear inducing episodes of Queer Eye.

I tell all of you this because I know that I'm not alone in these feelings. Others are living very similar experiences that I'm going through, and probably facing the same anxieties that I feel about all of this. After all, almost everyone in life is dealing with an existential crisis of their very own, whether they realize they're on that journey or not. But isn't that what the adventure of life is all about? Learning about yourself, how you can be a better person, and using that knowledge to make the world around you a better place? I surely think so, do you?

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