Sometimes, when we are in the middle of a Hurricane, some of us pretend it is not happening. Having lived on the coast a lot of my life, I have heard people say "We are going to stay and ride it out, I have lived here forever and it won't touch us".
Others watch from afar from their television sets. They hear about the Hurricane, but, feel no real connection because it is not happening to them. In either case, we ignore it.
Sometimes, we sit and watch the Hurricane surround our home. We hear the howling winds, we hear the house rattle. We peek through the blinds and watch the shingles fall off of our neighbors house, Somehow, we still believe that the Hurricane can't possibly touch our home.
And when the Hurricane does touch our home, we are shocked. We are in denial, or we are angry. Others watching it on TV say " I am so glad that wasn't me...poor things", and then they change the TV to the latest Reality Show.
The thing is, I understand both sides of that. I have always believed that illness (not your common cold) won't touch me and now that it has, I have gone into a lot of denial and especially anger. Anger that I can't control it and anger that I am not back to normal immediately. I have also ignored it for many months, never letting people in and not telling them the full story. And recently, when I have...many have reacted like those that are watching the story of the Hurricane on TV....they hear it, but, ignore it because it is not happening to them...and turn the channel, because "illness is not fun and sexy"
I have not been officially diagnosed with MS and the Neurologist says I have a different disease of my spine...the pain does not hurt any less. It starts with my legs feeling as if they are burning and the electric shocks are what hurts the most, then it travels up my spine making it very hard to walk or to sit comfortably. My head feels as if a time bomb is in it and wants to explode. Sometimes, I sit there and hold my head and rock back and forth. Lets not forget the fact that now I have to catheterize myself everyday (3x a day) because my bladder does not work properly anymore. I am doing everything that I can do to prevent Renal Failure. It leaves my bladder and kidney hurting. There are other things that are happening. But, basically pain is all I know.
I hide the pain a lot. I treat it as if it were an acting job. I work hard on it. I don't want anyone to see it, to know it. From the outside, no one would really know that I had a problem. Well, except for the fact that I am not good on my feet and walking into the wall might give it away.. But, I could joke that off. Add a little make-up, fake hair, good clothes and boom....I am invisible.
For some crazy reason...I have it in my mind that the world is not equipped to handle people with illness. Most people I know secretly don't want you to talk about it, they avoid the subject altogether or frankly....the truth is, they stop contacting you. If by some chance I get that quick email from a friend who has fallen off the face of the earth since all of this has gone on, they talk about about how busy they are (every day of every week of every month) and make every excuse in the book not to see me. Surprisingly enough, I understand. I have even been called "selfish" for just talking about me and my problems. I feel like I can't win. I either continue to hide from the world and not reach out, or I talk about it. Maybe now, I talk about it too much. I guess it is because I had it bottled up for so long. I am the least selfish person that I know. It is really hard to make everyone around you happy. I am learning to be selfish in a good way and stop worrying so much about what others are saying about me.
The interesting thing is, it is alright if we don't talk about it. I just came out of the "closet" with being this way. I hid it for a long time, I was brought up to keep things to myself. "You don't want the whole world to know your business, it doesn't look good and not ladylike" Honestly, over this year and half.... as wrong as this sounds, I prided myself of being invisible. I always thought that illness marks you as a weak person. And for certain, Society definitely marks people with an illness as weak.
Illness can make you invisible. It made me invisible for a long time and frankly still does. Finally, I spoke out and reached out because I was tired of being invisible and ignoring the fact that we need help. We all need help when we go through a Hurricane. Whether we like to admit it or not. And when I opened my mouth, people either went in two directions...they came running to help us. And sadly, others went running the other way because it is easier to turn the channel and most of us have too much going on in our own lives and we just want to hear the good stuff when we have the free time. I don't get upset with them. That is a part of human nature.
Being invisible and ignoring is no fun and not healthy. Even one of the doctors at Cleveland Clinic shared with me that we need people, we need others help. And more directly, she told me that I need to forgive myself...that i did not cause this. And by ignoring, and trying to be invisible...the sicker I will get. Powerful words. Words that I am taking to heart.