My Advocates

Update on MedChange2017 for those interested: I am trying out the “new-and-improved” version of the medication that I like, so the Great Olanzapine Lessening has been postponed a week or so (it is not the best idea to do two things at once). So far, no major changes to speak of, which I think is to be expected (and is welcomed).

Today I want to speak about the importance of advocates, and for those who know me, my favorite way to talk about anything is through the lens of a story.

When I was 5 (give or take, I’m really unsure of the timeline here), my family was having their annual Thanksgiving Day dinner (again, I think it was Thanksgiving, the exact details about the actual event are fuzzy). For those who have never been to a Thanksgiving Day dinner hosted by my family, there is usually lots of grown-up food, football, and loud talking. None of which I was particularly interested in at 5. And certain members of my family who were similar in age agreed. So we ran off to the computer-room-to-be (there was no computer there yet…oof I’m old) to play a board game. We chose Sorry!, perhaps the meanest child’s game the world has ever invented. Like come on, the name of the game is a sarcastic Sorry! Ugh.

Anyways, we began playing the game, and for those of you who do not remember the game, in order to put your piece on the playing board, you have to roll a certain number on the dice. We went around a few turns and my family members respectively rolled the number and got on the board. But I did not. Turn after turn after turn I did not roll the number, and so I could not start playing the game. And yes, I started feeling really left out as my family members played Sorry! and had fun while I sat on the sidelines, unable to join in because of a rule that I could not change.

I obviously did not realize how incredibly metaphoric this situation was until I was much older. The idea of an arbitrary rule allowing some to participate in activities, but not others. The idea that those who could not participate would try again and again to live up to the rule, but that they would ultimately fail. How do people in the differently-abled community ever get past social rules that they themselves are unable to change? A more real example: How do I, as a person with Tourette’s, make “Tourette’s Guy” and all of the other Tourette’s jokes on the internet go away?

I certainly do not want to devalue my own empowerment. This blog itself is a way for me to speak. And there are many, many other outlets! But after I was playing Sorry! for quite some time, stuck at the beginning and feeling very sad (and admittedly getting upset, as 5-year olds do), an advocate came into the room. She suggested that I be allowed to start the game, that I be allowed a level playing field with my other family members. This was met with some resistance, but my advocate stood firm, and eventually I was allowed to play.

Advocates allow us to move forward when we are stuck in a place where the rules are unfair, or the people are harsh. When we have done everything we can, but the situation is not one that is respectful of those who are like us. When we need an outsider.

We have all had advocates, whether it be our parents, teachers, friends, or other people in our lives. This particular entry is dedicated to all of those individuals who have advocated for me. Thank you for seeing past the tics, and seeing the person that I am.

–KMJ