Pondering ...

I suppose my main purpose of this blog is to ponder and share. The level of pondering seems to vary from post to post, and the subjects I ponder about seem to vary as well.

Many of you have probably rightfully suspected that I struggle with coming to terms with my disease, and that I sometimes engage in a little bit of a pity party. Yes I do, I don't particularly enjoy the pity parties, but they just jump on me from behind every now and then.

Yesterday a friend of mine sent me a link to a lady called Laura Hershey. http://www.laurahershey.com. Laura Hershey is, amongst others, a writer, a poet, and an activist. Laura Hershey, has despite severe disability, achieved more than most able bodied people ever will. She is by all means a very admirable woman. I was encouraged to read her blogs on the MDA and the Jerry Lewis MDA Laborday Telethon. If you go back in my blogs, and read my post from labor day this year, you will see that watching the telethon was hard for me, that seeing people with neuro muscular diseases portrayed as helpless really hit me hard, mostly because of my fear of one day becoming "one of them". I really have no beef with the MDA, I have not yet needed them for any services, and so far whenever I have interacted with them it has been pleasant. They have not in any way misrepresented themselves, but yet, when reading Ms Hershey's, blog posts about the telethon, something hit home.

I think that one of the reasons why I often struggle with coming to terms with my disease is that I have a hard time not identifying myself with it. No matter what, I keep thinking that MD is what defines me, despite constantly being told otherwise by people I care deeply about, and who care deeply about me. Finding out who I am is hard when there is this monster constantly poking me, telling me that this is who I am.

Ms Hershey's issue with the MDA and Jerry Lewis in particular was that we are being shown as these helpless people, that need to be pitied since our lives are so terrible. That the only joy in our lives is that we every day sit at home waiting for a cure to come around, and fix us over night. She claims that Mr Lewis portrays himself as this figure, who helps us make it only because he feels sorry for us and comes in and brightens our days. She also says that the MDA is misrepresenting itself by making false or exaggerated claims about the services offered.

All right people, I AM NOT MD, but I do suffer from it, and no matter what, it will always be a part of my life. What I am, however, is a human being as is Ms Hershey, and all of you. I don't like labels I don't want labels, I hate labels. I think that Ms Hershey through her a activism is attempting to level the playing field between "you" and "us", and I am grateful for that. But sometimes I think the gap unintentionally becomes larger due to the alienation of certain people. The MDA is also trying to level the playing field. It is the "you" and "us" mentality I have a hard time with. We are not at war, we are all human beings. My body is broken, but my mind is in fairly decent shape. Some people have broken minds but good bodies. If we would all just stop labeling and yelling, we might be able to figure out how to co-exist without the "you" vs "us" attitude. The playing field will never be level, and it shouldn't be. Imagine if all farmers grew nothing but corn!

We are now once again being brought back to my search for a meaning with my life, or my search for faith. I have found that Christianity in its true form, the way it is supposed to be, is an incredibly open, welcoming, and powerful way of life. It is also hard, challenging, and frustrating, but it does not distinguish between disabled and "abled", ugly, pretty, smart, dumb etc. Christianity gives us a framework, that allows us all to co-exist.

I am proud that I raised money for the MDA, they have helped people I know. But I also think it is amazing that Ms Hershey is drawing attention to certain issues that are ignored, and I love every single one of you who just consider me Pernille, and not your disabled friend Pernille.

Peace!

P

Contact email keepinghopejourney@gmail.com