Hmmm, it's 3am. I'm seeing a pattern here. I guess I will use this time to finish this post.
I’m reminded of a child playing a game of peek-a-boo; as they cover their faces with their hands they can't see you so, you must not be able to see them, right?
What is to be "seen"? I feel the more you try to hide something the more obvious it becomes, so you might as well be upfront about it. In my daily life, and through my interactions, I try and be as transparent as possible about my condition, after all I indeed have a disability and there is little I can do to hide it.
Whether I want to or not, on a daily basis I am forced to instantly share this most intimate, and sometimes painful, part of my life with those I cross paths with. There is no hiding it, no matter how I try to trick my mind that others can't see it.
My "weakness" is on the outside for all to see and in this moment I have two decisions.
Do I try and hide it or do I go along with it and share it?
What is disability anyways? We have attributed it to the lacking of physical, unable to perform, but the truth is we all have things that "disable" us in life, some are just more apparent than others. Some cripple themselves with fear, insecurity, lack of motivation, lack of scope or understanding, selfishness, pride, laziness, arrogance, regret...and the list goes on.
We all struggle and we limit ourselves…mine just happens to be more visible and my "limitation" was not a choice given to me.
Growing up I wouldn’t say I was the type to openly share all my feelings. In fact, I was more introverted, proudly independent and lived within myself.
Who wants to talk about their feelings, emotions and the things they struggle with? It requires vulnerability and open to judgment, and let’s face it most of us don’t do well with judgment.
From the beginning of my diagnosis, and finding ARM, I chose to "go along with it" and share it. I perceived that as being the most productive route. At my previous job I even organized presentations in an effort to spread awareness.
In textbook form I openly shared my condition, who ARM is and tried to make everyone comfortable with “it”. I have realized that most people don’t have the opportunity of being around a “disabled” person and in many cases I was their first.
Even I didn't really encounter disability before becoming disabled and thus never really understood it, or rather never took the time to recognize it and so, I consider myself an opportunity for others to be educated.
It was my hope that the more open I was, the more comfortable people would be to ask questions and thus less barriers. If I was open, they would be open and then the decision in how to react or perceive it would be up to them.
Do they open up or remain ignorant or closed? It is up to them. I did what I could.
For the most part I think people want to know they just don't know how to ask.
I've actually been keeping a written journal for a while and have had this blog account for the past year or so, but only recently made it public. One, because I've been too busy to get it up and running and two, I think some part of me was a little scared.
Admittedly, I’ve had trouble since I started this blog and it even has affected my sleep.
Hmmmm, that was unexpected.
Sometimes it even takes me awhile to get a post down. I start it and then walk away, because I either want to express it in a way that can easily be understood or it becomes too emotional and so I escape it.
My decision has been "to go with it" and with the people I cross paths. Make what is obvious, obvious. But there is a level that not everyone gets to experience with me. It is all the details, the feelings, frustrations, the physical struggle, the revelations, the sadness as well as the joy that is all wrapped up in it.
Making my thoughts public started triggering past memories of being active and everything I've experienced over the past 10 years. The progression of my condition, and even the past 31 years of my life has inundated me. More recently I've been lamenting over loss and sometimes even reading my own words brings me to tears.
I'm aware that some of my readers are people I know, but in some ways it would be easier to share if they were all strangers.
Being open isn’t always easy and the fear of judgment or recommendations on how to do it better lives there.
My words are here for people to judge, feel sorry for and worse, pity. Gosh, I hate pity. It means you don't understand. I'm not looking for pity, or a pat on the back, all I really want to do is build understanding.
Truth is, sometimes I get tired of sharing all the time and there are times I feel alone in this quest and I just want to crawl under a rock and never talk about HIBM again.
I don't want the accountability and I want to have a life outside of it so, I can be free of it on my own terms. I want to be able to take off on vacation, go to the beach, not have to face the struggles of a small organization and not come home from work to more work.
I already live with HIBM on a daily basis so, do I really need to pile more responsibility on something that is already difficult to handle?
But, it always goes back to 2 choices. I can look inward or outward and both in a sense are helping myself, but one is for the greater and not just about me, and so that is why I continue to share, because I truly do want people to “see”.
Everything is about perception. Do I perceive this as the most horrible thing that has happened to me or the greatest opportunity? We miss our opportunities all the time and thus don’t meet ourselves or take the challenge. And while it is difficult to be so transparent, I think it would be much more difficult to sit on the sidelines and let this experience go to waste...and so...I just want you to see.