Work Work Work

Hello my fellow humbly courageous readers. Yet another week of summer has flown by. I hope you have been enjoying some of your favorite outdoor activities. We’ve checked a few fun activities off of our summer bucket list so far!

In a past blog post, I talked about my experience as a waitress back when I was in college. I discussed the mental and physical challenges I had as a waitress with a disability. One of the hardest jobs I’ve ever done!

Throughout my life I’ve had lots of different work experiences. For me, growing up it was never a question of whether I would work or not, just when and where.

As someone living with a disability, finding and maintaining a job can be difficult for many different reasons. One of the main obstacles is that employers are often not understanding that the challenges we face with our disabilities are often unpredictable and frequent. They don’t understand that from one day to another we just don’t know how our body will function. For me, which is obviously the perspective I can speak from, I have days of varying strength that can fluctuate pretty often, even within the same day. That can be really hard for an employer to comprehend or understand. Also, accessible accommodations at a work place can be few and far between. 

Another job I had during college was being a hostess at a popular steakhouse. It was a very busy place, and I was on my feet for hours at a time. I’m not really sure why I thought that would be a good fit, and to be honest it wasn’t easy at all, but there is a lot of pride that blooms  from living through the hard times and coming out on the other side right?! I often wondered what people were thinking as I escorted them back to their table. Some of them just flat out told me what they were thinking! I walk with a very noticeable sway/limp, so of course, there was always the inevitable “what did you do to your leg?” All in all, I had a really great time while working there. I like to think that silently, maybe I motivated others to keep on going in some way.

Among some of my other job titles along the way were cemetery plot salesperson (yes I know, odd), assistant to an ATM salesman, modeling scout (again, yes odd), parking cars for a PGA tournament, cashier, realtor (got my real estate license several years after college) secretary, personal assistant, garment steamer at Victoria’s Secret on a winter break from college with my sister, now that was fun! I’m sure I’m missing a few! Obviously, I had a wide range of jobs throughout the years. 

By far, the most rewarding and longest standing work I have done has been working with those with mental and physical disabilities in a variety of ways. Throughout the years, I have done hundreds of home visits and met some of the kindest people with some of the most unimaginable struggles. I loved how, as a person with a disability, I could go into the home of a family I had never met, and have an instant connection. They immediately knew, I understood. Many times I had to crawl up the stairs of a home I was visiting because there was no railing. That feeling of dread, the pit in my stomach, when I showed up at a new family’s home to see no railing for the stairs was horrible. I would silently pray, please let there be a railing today. Even a single stair with no rail is not possible for me. I was always so anxious when going somewhere new. Adapting in an instant is never easy, but it was required. Sometimes, there would be a tall flower pot, shining like a beacon of hope, that I could grab onto to help hoist myself up the stairs. However, many times the only option was to toss my bag up the stairs and get on my hands and knees to crawl up the stairs, often locking eyes with my new client for the first time on my hands and knees. A somewhat humiliating experience. Hard to come across as capable and confident in that position. Honestly, it makes me cry every time I think back on those times. It was HARD. However, I was helping others who had a child with a disability or delay. I liked my work very much, and learned a lot. 

Railings are a must for climbing stairs for me

Having a disability is a full time job in itself. If you don’t live it or live with someone who is disabled, you probably won’t understand what I mean by that. I truly have a lot of disability pride when I think back on all of my years of work experiences. I no longer do home visits. Those days are long gone for me as my disease has progressed, but still, I’m dedicating my life to helping those who live with disabilities. Using my voice, my expertise, my experiences to help guide those who need guidance, or who just need a friend that understands. 

Writing my weekly blog post, my happy place!

Recently, I got a message from a parent who’s daughter lives with my same diagnosis. They told me that because of what I wrote in a recent blog post, they were able to really understand what their daughter goes through. It gave them a new perspective. It absolutely takes humble courage to put myself out there. It’s often times very mentally taxing because it’s such a space of vulnerability that feels very raw at times. It’s important though. Because I was created as a person with a disability, that has enabled me to have a heart for helping  others. It’s not work, it’s a gift 💚