Thursday, August 25, 2011

It's all about me.

I need to tell a little more about myself. I have a form of muscular dystrophy which has progressed to the point of needing a ventilator to assist my breathing. Since I have lost my ability to swallow I require a gastric (G) tube to be fed. After many attempts with gadgets and such I haven’t been able to speak since. It’s been a long 5 years since all of this has taken place. At that time I contracted a near fatal pneumonia that left me this way. I was literally dying when I was rushed to the ER, which was very close to my house, ¼ mile or so distance.
The doctor informed my family of my imminent demise. After a day or two of fighting, I pulled through. I spent the next three weeks recovering in ICU. There was additional recovery in a rehab hospital. By that time I was permanently dependent on the vent. Soon after I left I found myself in a nursing facility and received less than stellar care (that is a different story entirely. Several weeks later, after much planning and at the end of my insurance coverage, my wife was able to bring me home.
I needed and still need total care and required nursing care and was able to find someone to fit the bill. It was a very fortuitous chain of events that brought me home.

Sunday, August 21, 2011

And Death Shall Have No Dominion -Poem by Dylan Thomas

And Death Shall Have No Dominion

And death shall have no dominion.
Dead mean naked they shall be one
With the man in the wind and the west moon;
When their bones are picked clean and the clean bones gone,
They shall have stars at elbow and foot;
Though they go mad they shall be sane,
Though they sink through the sea they shall rise again;
Though lovers be lost love shall not;
And death shall have no dominion.

And death shall have no dominion.
Under the windings of the sea
They lying long shall not die windily;
Twisting on racks when sinews give way,
Strapped to a wheel, yet they shall not break;
Faith in their hands shall snap in two,
And the unicorn evils run them through;
Split all ends up they shan't crack;
And death shall have no dominion.

And death shall have no dominion.
No more may gulls cry at their ears
Or waves break loud on the seashores;
Where blew a flower may a flower no more
Lift its head to the blows of the rain;
Though they be mad and dead as nails,
Heads of the characters hammer through daisies;
Break in the sun till the sun breaks down,
And death shall have no dominion.
Dylan Thomas

Monday, August 8, 2011

Winds of Change

I wanted to get an earlier start today. I always have so many things to write about but it never seems to amount to anything. I have a thousand thoughts hitting me as I wake up in the morning. I think angry thoughts about people and life and really have to step back and resist that. That’s the habitual old thinking that comes back to me every so often and it really limits me.
I am working on my awareness of myself and those around me. I dare say that awareness doesn’t always lead to satisfactory conclusions. As you reach a certain level of this awareness you can see the unhealthiness of some of your familial relationships. People you have known all your life begin to ‘show’ themselves to you. In most of these situations it is clearly evident that their love, at times, is reliant on what I can do for them emotionally. I have become the guardian of their feelings. For example, if I would make a comment that might make one of them uncomfortable or say something that they don’t agree with my viewpoint is quickly dismissed. They will respond in anger and vilify my whole way of thinking just because they feel threatened by my words.
I am the youngest of five and the second sibling with muscular dystrophy. My brother passed away several years ago. My parents didn’t talk to me about disability, they basically let me just figure it out. What message could I glean from that other than ‘don’t talk about it’? So, as a child, you learn very quickly about what not to say. I remember when I was a kid and faced with awkward social situations (which was undoubtedly quite often) my mother used to say, “Just be yourself”, but it seems that every time I was ‘myself’ I made people upset and found myself in trouble. So that motherly advice eventually faded into obscurity.
I used to think that the reason why I couldn’t talk about my physical difficulties was because they all were trying to protect my feelings. In retrospect I suddenly realized that their methods were designed to protect themselves. My feelings surrounding my fears with my own disability brought up feelings of their own guilt and shame and their inability to face them. I would be told not to feel sorry for myself, stop crying about it and the most effective comment, “Don’t be such a coward.”
Over time you slowly develop a deep seated denial that is impenetrable. You begin to doubt every thought and emotion you have because other people’s thoughts and feelings take priority.
Here I am and as an adult I am just beginning to shed all of that crap. I say what I want and I’m not usually concerned about anybody’s opinion. In essence I am changing, my thoughts are changing and my behavior is changing. There’s a catch though, it seems as though when it is becoming clear to everyone of my intentions to be different they unwittingly try to bring me back to my old behaviors. They want me to argue with them, apologize to them and explain everything I do, to them. In my weaker moments I comply and feel terrible afterwards.
Ultimately I don’t need to convince anyone of anything, I don’t have to explain myself and I definitely won’t apologize when I am not wrong. I naively assumed that when I changed, everyone else would change. That didn’t happen. Instead I am noticing who everyone really is and how they interact with me; I have become a keen observer of these humans in my life. I see some tough choices coming up, the rose colored glasses have slipped from my face and all is apparent.
I am very fortunate to have a wife and two sons who accept me in any form I may appear in. The only three people on the planet who I answer to.