mindless_wheels - A difference a year makes, imagine 14

Subject:	A difference a year makes, imagine 14
Time:	02:33 pm
Current Mood:	contemplative

I had to post. I just got off the phone talking to my little brother, his birthday is tomorrow. Only he isn't so little, he will be 39 tomorrow. We had a great conversation. The best we have had in a long while. We talked about everything...family, life, our relationship when we were in college together. It was awesome.

I will always remember his birthday as it is to that date, May 4th, that I started using a ventilator on a permanent and forever basis. It is something that changed my life on a lot of levels. It will be 14 years tomorrow. A day that I thought I wasn't going to live through. I thought, my family thought I was a goner. But hey, I am still here, kickin butt but have been through many emotional stages that can't ever be explained. The thoughts, experiences, goals, and sadness can never be explained to another human who hasn't experienced it.

There are days I am glad I made that choice of a permanent ventilator or I would be dead. I remember in a deep sleep, almost coma like state, I told the doctor "do it!" and my life changed forever.

The other day I was at my pulmonologists office. We talked about it being my 14th anniversary of being on the vent. He asked me point blank...."do I ever regret my choice?" I stopped for a moment and thought about it. And no I don't regret it. Do I wish things were different? "hell yea". I would love to be more independent and not have to rely on this thing strapped to me to breathe. But I can't. I have lost my sense of self by having to have people assist me with things, loss of the ability to have a great job in what I was trained for, I was damn good at it. But I have gained life. No hospitalizations, I think clearer, and more than anything, have appreciated life. I can go outside and not worry about if I am breathing like everyone else. I am breathing and I have appreciated life more. I don't take things for granted.

I do have a bit of surviviors guilt as many of my disabled friends have died, and I am still here. Is that fair? Well only the future knows. Not me, not my friends and family, but the heavens above. I haven't been a very religious person over the years. There were days I felt cheated, but I am spiritual in my own way. I go out and look at the clouds, the creatures, and my home and realize there may be a purpose.

I asked my doctor when I was there Thursday about the risks of me going on a trip to Michigan. He looked at me seriously and said....life is a risk. If you feel good, go for it. He said that I was the least disabled person he knew. That I have a spirit for life. He mentioned he knows doctors that are hindered by their spirit which in a sense makes them disabled. That proclamation by him touched me. It made me realize that I want to take this trip...to be with my two best friends...a trip without Jim in 14 years, and to maybe see Craig Ferguson in person. It is just that for a week. I can be free if it will be my only time in this life.

Things change and I know my life will change, I am getting weaker, but I am going to live life like it was the last day on earth. Because it just might, or I might beat the odds again for the 6th time.

Happy Anniversary me...and LIFE!!!!

annette

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May 3rd, 2008

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