Introduction
When I got involved with this charity I thought that I would be the perfect person. I had the background on both fronts. I was there that day and the months that followed and I had spent the better part of 5 months hospitalized for an ailment that was traced back to WTC exposure. I had beaten the odds, I had surpassed even the most optimistic predictions and was well on my way to putting this in the rearview mirror and getting on with life.
So when I found this organization that was dedicated to helping those people who were suffering now, I figured who better than someone who had come down the road that I had? And I jumped on board full force. We've made amazing strides in a short amount of time. Our blog is read worldwide. Our shirts have been sold and shipped all over the US and several different countries. We've diversified our original focus of just Mesothelioma to include other illness that are being commonly found in the 9/11 community. I couldn't be prouder of the people that have helped us along the way.
The funny thing is that I've only met a handful of other people that had the same condition that I did. And while it has changed so many facets of my life and behavior, that I think about it daily, I have spent my time talking to so many people who are going through different problems. Different than I had, but all eerily common to each other. People from different backgrounds and places with only one thing in common, that day and the months that followed. And still I thought that I had done my time. I thought that all that time hospitalized was over and I had beat it. My mind said that it was better to "get it out of the way early", this way I have so much time left to take the lessons I've learned and put them to good use. The funny thing is that every time I think something.......Its only a matter of time before I'm proven wrong.
Most people who are getting sick from the WTC have respiratory symptoms, makes sense - all that stuff we breathed in couldn't have been good for us. And these people seem to have fallen into two categories; 1) People who have had bad respiratory function from that time out and 2) People who's respiratory function has been in a state of decline since. Over the last months, I have discovered that I fall into the latter group.
One of the things in the charity that I didn't expect to happen was to be interacting so closely with the actual people that are getting sick. I had the plan to be the catalyst, the one that fuels the fire when everyone else wanted to quit. The one that brings attention to all these nameless people, hero's,that were now ill. And that was working fine, until our work started to get noticed and people started thanking me. Sick people. The "nameless" were becoming named. Its harder than I thought it would be, because it began to break my heart to speak to these people. People who had been there when this City and Country needed them the most, and were now forgotten. Left to suffer in silence, I listened to what they were going through health wise, doctor wise and family wise. But I felt, somewhat removed from what I was hearing. I HAD been sick, I'm better. I told these people, all of them, don't give up.....look at me, you can get to where I am now. But in reality....where am I?
I began to notice, months ago, that my wind wasn't what it used to be. And in my usual manner I ignored it. My voice also began to have a limited range, and I pushed past it. The decline was slow but steady, other people began to notice and I did more to hide it. My shortness of breath worsened and I grabbed my other half's asthma inhaler and carried it around with me. I used it when I needed for 6 months. At first a few times a week, then to every other day, then every day. And still I hid it, I listened to people telling me on the phone how they couldn't breathe and shook my head feeling so sorry for them. I made it a point to be the one to push the people helping me with the charity harder, the more phone calls I got, the harder I pushed. The shorter of breath I got, the harder I pushed. I feel embarrassed now for my lack of honesty, mainly with myself - but the amazing thing was.....things got done! We hosted 2 amazingly successful charity events at Saint Johns University and all the while I was feeling myself decline. But the people that have been with me helped push us to success. On Columbus Day weekend I decided to take a bit of a break and go to Vermont to enjoy the changing of the leaves. This would be the straw that broke the camels back.
Vermont was beautiful, small townhouse with a working fireplace was just the thing that was called for - rest. And as a bonus the stay came with a complimentary gondola ride to the top of Mt. Killington. The day was beautiful, warm for October in Vermont and was perfect to stand at the summit and enjoy the view for miles in either direction. However, Mt. Killington stands 4,200 Ft in the air and from the moment I got out of the gondola I couldn't breathe. The thin air accelerated whatever was going on inside my chest. Not only this, but I immediately developed a dry hacking cough. I walked down the mountain and hoped that when I got back to the thicker air that this would resolve. It didn't.
This is the beginning of the next chapter in my journey. I don't know where it will take me, but I will share it with you because my friends believe that it may help later. I will take you with me to doctors, good and bad. Medications, good and bad. Pre-conceived notions that even 5 years after this horrible event still linger. I will share stories that other people have shared with me, changing names. I will try to jot down the emotions that I feel as I feel them - so I apologize for the times when these words, as written make no sense. In short I will document what it feels like to get sick.
So when I found this organization that was dedicated to helping those people who were suffering now, I figured who better than someone who had come down the road that I had? And I jumped on board full force. We've made amazing strides in a short amount of time. Our blog is read worldwide. Our shirts have been sold and shipped all over the US and several different countries. We've diversified our original focus of just Mesothelioma to include other illness that are being commonly found in the 9/11 community. I couldn't be prouder of the people that have helped us along the way.
The funny thing is that I've only met a handful of other people that had the same condition that I did. And while it has changed so many facets of my life and behavior, that I think about it daily, I have spent my time talking to so many people who are going through different problems. Different than I had, but all eerily common to each other. People from different backgrounds and places with only one thing in common, that day and the months that followed. And still I thought that I had done my time. I thought that all that time hospitalized was over and I had beat it. My mind said that it was better to "get it out of the way early", this way I have so much time left to take the lessons I've learned and put them to good use. The funny thing is that every time I think something.......Its only a matter of time before I'm proven wrong.
Most people who are getting sick from the WTC have respiratory symptoms, makes sense - all that stuff we breathed in couldn't have been good for us. And these people seem to have fallen into two categories; 1) People who have had bad respiratory function from that time out and 2) People who's respiratory function has been in a state of decline since. Over the last months, I have discovered that I fall into the latter group.
One of the things in the charity that I didn't expect to happen was to be interacting so closely with the actual people that are getting sick. I had the plan to be the catalyst, the one that fuels the fire when everyone else wanted to quit. The one that brings attention to all these nameless people, hero's,that were now ill. And that was working fine, until our work started to get noticed and people started thanking me. Sick people. The "nameless" were becoming named. Its harder than I thought it would be, because it began to break my heart to speak to these people. People who had been there when this City and Country needed them the most, and were now forgotten. Left to suffer in silence, I listened to what they were going through health wise, doctor wise and family wise. But I felt, somewhat removed from what I was hearing. I HAD been sick, I'm better. I told these people, all of them, don't give up.....look at me, you can get to where I am now. But in reality....where am I?
I began to notice, months ago, that my wind wasn't what it used to be. And in my usual manner I ignored it. My voice also began to have a limited range, and I pushed past it. The decline was slow but steady, other people began to notice and I did more to hide it. My shortness of breath worsened and I grabbed my other half's asthma inhaler and carried it around with me. I used it when I needed for 6 months. At first a few times a week, then to every other day, then every day. And still I hid it, I listened to people telling me on the phone how they couldn't breathe and shook my head feeling so sorry for them. I made it a point to be the one to push the people helping me with the charity harder, the more phone calls I got, the harder I pushed. The shorter of breath I got, the harder I pushed. I feel embarrassed now for my lack of honesty, mainly with myself - but the amazing thing was.....things got done! We hosted 2 amazingly successful charity events at Saint Johns University and all the while I was feeling myself decline. But the people that have been with me helped push us to success. On Columbus Day weekend I decided to take a bit of a break and go to Vermont to enjoy the changing of the leaves. This would be the straw that broke the camels back.
Vermont was beautiful, small townhouse with a working fireplace was just the thing that was called for - rest. And as a bonus the stay came with a complimentary gondola ride to the top of Mt. Killington. The day was beautiful, warm for October in Vermont and was perfect to stand at the summit and enjoy the view for miles in either direction. However, Mt. Killington stands 4,200 Ft in the air and from the moment I got out of the gondola I couldn't breathe. The thin air accelerated whatever was going on inside my chest. Not only this, but I immediately developed a dry hacking cough. I walked down the mountain and hoped that when I got back to the thicker air that this would resolve. It didn't.
This is the beginning of the next chapter in my journey. I don't know where it will take me, but I will share it with you because my friends believe that it may help later. I will take you with me to doctors, good and bad. Medications, good and bad. Pre-conceived notions that even 5 years after this horrible event still linger. I will share stories that other people have shared with me, changing names. I will try to jot down the emotions that I feel as I feel them - so I apologize for the times when these words, as written make no sense. In short I will document what it feels like to get sick.
posted by Iloveny_marf @ 5:20 PM
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