Wednesday, October 21, 2015

Darkness ....... an in between time

I don't know why I have been avoiding keeping up with my blog.  It isn't that I don't have tons of things to say.   My mind spins like a top most days with so many different feelings and emotions that  I am twisting myself into a pretzel.   I think about going on line and writing and then I find something less important to do.

Darkness!   What does that mean to us?    Is it an absence of light or is it a veil  that covers the light? Does it matter? I am not sure but learning to navigate the darkness is a difficult task.   You are never really sure if you are going in the right direction or if something is sitting in front of you just waiting to trip you up (lately even being in the light hasn't prevented me from tripping lol).  It's that feeling that no matter how gingerly you step forward there could still be an abyss that will suck you up .    The fear, the uncertainty, the need to trust is so strong that you almost want to just sit still and not move because somehow that seems so much more comfortable.    The word 'seems' is what is important.   It really isn't more comfortable, it is just less dangerous.

Darkness has been a big theme in my life lately, and rightfully so.    I can be sitting in the sunlight and still feel like I am in a dark room, or walking in the street in the dark and feel like it is the best place to be,  even brighter than the sun.   I think when there is light around one feels that one should match that feeling.   Yet even in the midst of glorious light, the darkness prevails.   That situation is much scarier than being in the actual dark and feeling like you belong.    Belonging, the one thing all human beings desire more than anything else.   That search to find where we belong, feel at home, know our minds.   That place where we are travelling to  the whole of our life, and yet never really arriving.   I don't know where I belong anymore!!!!   

Do I belong among the healthy?   Keeping up with all the activities and events as if nothing has changed?

Do I belong among the sick?   Giving up all past expectations and just existing within the limitations that I have been left with?

Do I belong somewhere in between?    Not sick enough to absent myself from daily living but not truly feeling the energy or the desire to participate in a limited way.

There is a really good book written by Arthur Frank (can never remember which is his first name so I had to look it up) called "At the will of the Body".   It is a great book for those who are sitting somewhere 'in between" .  Not healthy enough to return to their previous life, but not sick enough that society can accept them as they are.   He explains that the advance of medical technologies has been so fast that the societal advances and understanding has yet to catch up.  Not only in physical ways such as accessibility issues, but in emotional and psychological ways.   Many in our society have been able to put their diseases into 'remission' allowing them to live longer lives.   Society however doesn't quite get this status.   We want people to be either healthy or sick.....being ill yet still capable of some form of participation is not understood, its confusing, doesn't fit into the categories which we have set up for people.

This lack of understanding on the part of our community, and society on the whole, is what often makes the darkness a safer place to be.   Sitting in the darkness, fearing the future is a more acceptable and more convenient place for the 'able' bodied. They sense we belong there.  They can understand, they can help when convenient, but they don't have to examine their own ways of being in the world and wonder if that is truly how it should be.   It is funny to see what an 'able' bodied person considers accessible.   If there is a ramp then its good.  Never mind that the ramp has been installed at such an angle that travelling it is like skiing down a slop or climbing a steep hill.    Accessibility is covered if there is an elevator , never mind that you have to go up or down to the floor that it is at to access it.    I am laughing as I write this because these have been my personal experiences lately.   My sense of humour has been a blessing because I can see the people who are trying really hard to be helpful realizing the absurdity of it all!!!!! LMAO.    That in itself has tempered my new experiences.

I have managed to try really hard to be grateful for my life...and I am in many ways.   But to be reminded on a constant basis about how lucky I am to be alive is really starting to take its toll.   Don't get me wrong, I am happy to be alive.   I enjoy my daughter and my granddaughter on a regular basis.  I recently travelled to see my sister and had the best time I have had in years.   There are many wonderful things going on in my life but there are also many things going wrong.   So to be told by people who are uncomfortable with my situation to focus on the good stuff is getting really tiring.   Sometimes I just want to sit back and say 'life sucks'.   Because you see in many ways it does.   But then again so does everyone's life at some point.   Why is it ok for some to complain and rant, but for others it is not.   It really comes down to whether or not the rant is fixable.    If it is, then we are all ok with it.   If not, then we don't really want to hear how awful things are.   Ultimately it is whether we are comfortable with the reality of what is in front of us.    Maybe it is all my own projection too.   Perhaps the lens I am looking through is shaded (or jaded) and the feelings I have toward the outside world are really the feelings I have for the inside but am too frightened to accept.

As I write, I am realizing why I haven't written lol.     I tend to become too philosophical and introspective and obviously need to gain the strength to do it.    Well, now I have much to think about and so I will probably go and do something less important......hmmmmm  I think I have a knitting project that needs my attention.