Saturday, April 11, 2009

Voicing My Frustrations...


Lately, I have been questioning who I am, why I am here, and where I am going. I think it is a pretty normal thing to do on the precipice of the big 3-0. That's where the need to write this blog came from. I am frightened to death that I have nothing to show for my life and writing every week reminds me of the unique events that have molded me into who I am. I admit to laughing at my own words, not because I am such an outstanding writer, but because of some of the ridiculous things I have done. I've also cried a lot because I am digging up painful experiences for the first time in years. Some of the things I have written will never see this blog, but I am glad I wrote them. It has been a very cathartic experience. Permit me to write through some frustration this week. I promise there will be more light-hearted stories to come...

When I was young I thought I was invincible. Impervious to anything that might resemble weakness or pain. Then I watched Angela slowly deteriorate before my eyes. We had the same disease and I was not only losing my sister, but essentially watching my impending future. Obstinate and optimistic, I pushed on; secure in the fact that I had a long time before that might ever happen to me. I would never be like Angela. If I ever was, it wouldn't be until I was much older.

The funny thing about time is it is beyond our control. When we want time to speed up, it slows down to a crawl. When we want it to slow down, it charges ahead with reckless abandon. The ages fourteen to twenty two passed in an instant. Before I knew it I was sitting in a hospital bed, a PICC line IV tube protruding from my right arm, wondering how this happened. Since when did I get sick like my sister? Pondering turned to denial and I made an unrealistic promise that this would never happen again. A year and a half later, I was at home on IV's with antibiotics like Ciproflaxcin and Tetracycline coursing through my veins killing any and all bacteria that got in its way; good or bad. What the hell is going on here? All I've ever dealt with is stomach problems. Chronic lung exacerbation was not part of my plan. Yet there I sat again, unable to change my destiny.

Now I find myself searching for purpose within the confines of a body that is slowly falling apart. Don't misunderstand me, my quality of life is good in comparison to many I know and those have read about. I had 22 years of decent health before dealing with all the aspects of this disease. I do not need a transplant yet. I hope I have many years before that becomes a reality. I have a beautiful wife, a home to live in, puppies to love, and a great support group of friends and family. Life is pretty good. Still, these small physical steps downward are a constant reminder that I am at an extraordinary crossroads of life. I never feel well anymore. I have built up a tolerance to daily pain and a stubbornness to plug away because that is what I have always done. I would be letting my sister down if I didn't try as hard as she did. My health is good enough to live a peaceful and "semi-normal" life, but its always in a fragile state. One minute I am great, the next minute I can hardly breathe or my stomach is in agony. Everyday I am doing up to four chest therapies, taking antibiotics, digestive pills, and other medicine that seem to only have a placebo effect. Now I get to add vitamin shots to the list. Due to missing intestines and a non functioning pancreas, my body is not absorbing the proper amount of Vitamin A and it has caused me to have partial night blindness. To reverse these effects, I am giving myself inter-muscular shots every day. Actually, my wife has had to give me the shots because of where I need to receive them. You have no idea how hard it is for me to allow the person I love most to cause me pain. I can deal with the doctors hurting me or giving myself a shot, but not her. I cannot imagine how hard this has been for her. That is why Carly is amazing. My wife made the choice to love me unconditionally. Real love is stabbing your husband in the ass with a nearly two inch needle and injecting him while he screams in pain. Even though I know she hurts inside, she hardly flinches because she wants to be so strong and supportive for me. I do not deserve such a wonderful wife. Thank God I have her.

One thing that keeps me going is my belief that everything happens for a reason. We are supposed to be present and open to every experience in order to fully grasp the magnitude it may have on our lives. I am convinced that all I have been through is part of a greater lesson. What that lesson is remains unanswered, but there has to be an answer...there has to be. Until I figure it, out I'll try to be peaceful everyday. I'll do little chores around our house, work on long term projects and goals, volunteer with different organizations, and write this blog every week in between dealing with my daily health issues. John Lennon once wrote "Life is what happens while you're busy making other plans." My birthday wish for this year and the next thirty is to continue being peaceful and to keep myself open to new experiences. That way, when "life happens" I can fit it in to my busy schedule. Maybe "life" will help me answer those three looming questions: "Who am I?", "Why am I here?", and "Where am I going?"

Peaceful Things,

Josh

1 comment:

  1. I feel the same way sometimes. First it was "when I go away to college, then my life will begin", then it was pushed back to "when I graduate college", and now "when I get my transplant, that's when my life will really begin." It's hard to see that life is what's happening right here where my feet are. I like the saying, "If you've got one foot in yesterday and one foot in tomorrow, then you're pissing on today." Carpe diem!

    ReplyDelete

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