Why Being Disabled for 5 Years Changed How I View the World

Five years ago, I went down the disability rabbit hole. It wasn’t a sudden fall, but more of a slow slide down smooth walls. This formerly independent journalist was now at the mercies of a body in full revolt.

Vision issues turned into not driving; hearing issues turned into iPod apps. Then there was the exhaustion. The all-consuming, bodily flu-like aches, showing up randomly, and making me balance my every move against whether this would be the step that would force me to lose precious time on the other end of the day.

Then there were the appointments, the doctors, the specialists, the tests. All of which left people scratching their head. I was no closer to an answer than I was the day before. While everyone was trying, my frustration mounted.

Day after day, week after week, test after test, I saw my former self slipping away.

Despite the apps, I still had to ask people to repeat themselves. When I would go somewhere, I had to be sure I was in before dark as I could not trust my eyes at night.  Eventually, even my vision during the day became less than trustworthy. Soon I was traversing this rabbit hole with a cane, then forearm crutches, and finally a wheelchair to stop the exhaustion. All with no end in sight.

At first it felt like a free fall into a dark place I did not want to go, but yet had no choice. Slowly, I realized the walls of this hole were not as smooth as I first thought. There were branches along the way, I just had to open my eyes and grab them. Organizations I had vaguely heard about along my journey pre-rabbit hole, now became essential links to remaining who I was as a person. I was able to take advantage of Easter Seals and their adaptive equipment program, as well as the Mass Association for the Blind and Visually impaired, who taught me how to live my life even if my vision kicked up. Even our state’s rehabilitation commission guided me in the right direction and encouraged me to keep working despite my disability. There was the local council on aging who stepped in and provided transportation for our town, allowing me to get out once and a while and feel like part of the world again.

Although my doctors could not give me an answer, they pushed me to keep searching for help. Even a vocational school offered to adapt my wheelchair so I could still travel in the world.

Still I was frustrated. 

My frustration was not geared toward my issues. It was geared toward the larger able- bodied world. The individuals I met were for the most part helpful and kind. It was the systematic, larger road blocks that needed to change. Roadblocks I myself will admit, never saw until I went down the rabbit hole.

Stairs with edges of paint wearing off, people parked in front of curb cuts. Business entries that had lips in the entryways. Not to mention ADA-approved doors that were only accessible if someone opened them for me. Even the lack of statewide rural transportation basically sent one message: If you are disabled, you have to move. This has nothing to do with the small towns themselves who are cash strapped just to provide the basics. It has everything to do with a state government that can’t see past their capitol city and its surrounding environs. That is when my frustration became my determined voice saying this is not OK. This needs to change.

Then, the totally unexpected happened. A light appeared at the end of this very long rabbit hole. Getting brighter by the minute. With one amazing doctor thinking outside the box, determined to solve my five-year long puzzle, I was finally diagnosed with a rare mitochondrial disorder. With mega-doses of vitamins, I am back to the person I was five years ago.

Yet I am not. This journey has changed me.

I can no longer “unsee” the version of the world I had seen over the last five years.

I can’t turn my back because I know there are others still down that rabbit hole.

People are fighting every day to be seen as capable human beings, and more than just their chair, cane, or whatever adaptive equipment they might need. These are smart capable, funny, intelligent amazing people who have talents our world is sorely in need of.

Yet the world around them fights them at every corner, sending the message, sometimes subtly, and other times not so subtly, that they are going to have manage and find their way around obstacles. That somehow by doing so, by appearing more able-bodied, they will be labeled inspirational, rather than seen as a citizen being denied basic rights.

My life has changed because of my journey. For this, I am forever be grateful and will continue to raise my voice for change.