Wednesday, October 19, 2011


The more time I spend in the ENT hospital, the more I am awed at the work being done.
When I was first told that I had tracheal stenosis, I knew nothing about it and no statistics.
As time went on and the internet grew more developed, I read more and more about it.
When I went to uni, I scoured the library for books, for any mention. Those were the books that told me it was rare, that the fault mainly lay with being in ICU. That, the chances are staying stable were fairly good.

As breathing got harder, I once again, gave in, my orginal surgeon had told me that in the future, things would be easier to fix. Well 5 years was future enough for me so I went back. But it didnt go to plan. And once again, I began researching things. This time, the internet was a great source of information, leading me eventually to my surgeon and some researchers.

It still want enough for me, I wanted to know more. I read books and journals, and I searched for others. I found others. But was once again told that it is fairly rare, that finding other people, especially my own age, would be a bit of a challenge.

But for the past year, I have been gathering information. I have been to the hospital on average of once a month for 18 months. And each time, I am in a ward full of people in similar circumstances. Each time, more people, facing the same questions. I know you shouldnt listen, but its hard not to hear. You need a reconstruction, you need a resection, we will see you in 6 weeks, we will see you next year. You have had 2 reconstructions, lets carry on further.

Everybody is waiting. Waiting with baited breathe. For times to change, for new research, for new laws. But does it matter, there all just waiting. Making the best of what they have, even if they have to be in hospital every other week.

And with this realization each time, the world gets a little bigger, brighter, bolder.

There is a rumbling in the ground, if you put your head down and listen you will hear it. Change is all around. Patients are being moved and transfered. Everyone is still waiting, but those who are able to wait, are the lucky ones, they are the ones who will witness the change. I count myself in that. I have waited all these years, I still have time to wait. The people this week, all have time to wait. we are all so differnt and yet so much alike. No one persons pain is more than an other, and no one need is more dire.

2 reconstructions / resections seems to be average, but average of course means lots with more, lots with less. 6 weeks seems to be optimonal time between treatments, but again, this means people at a year and people at a week.

There is change all around, big change, but it will come slow. And I am so thankful to be able to witness it. I truly do believe that if I were to still have my trach with no reconstruction, that I would not be here now. Fate is acting at this point.
Maybe its a good thing.
Maybe its a bad thing.
But wait we must.
For it is those that cant wait, who will suffer greatest.

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