Never giving up

We are often so hard on ourselves and our "inability" to just kick this horrible disease but sometimes we forget to give ourselves credit for all the times we do damage and then pick back up and keep fighting. It's actually pretty admirable if you think about it. I've been fighting this disease for almost 22 years and I'm sure many of you have been fighting it for a long time as well. We may have our ups and downs but we have never stopped trying. We've never given up. We make adjustments and we pick up the pieces and we continue to try. I think thats pretty amazing.

I'm going to go a little off topic today but I promise it does tie in with trich.

As I've mentioned before, my father is a 9/11 'survivor'. I'm not going to go into the entire story of what happened but suffice it to say that he suffered severe burns over a fairly large part of his body and when I first saw him in the hospital, before he was bandaged, he was unrecognizable (and even then it was weeks before we really saw "him" again). While his face looks fantastic his arms and hands are still in pretty awful shape, despite countless surgeries over the years (as recently as this past February).

The last 9 years have not been easy on my family. My father isnt the same person but we never forget how lucky we are to have him with us. While I'm ashamed to admit this, my mother, sister and I have grown a little tired of his obsession with 9/11. It's hard to understand but he always wants to tell his "story" to strangers, he makes homemade stickers for his car "9/11 burn survivor", he goes on message boards and expresses his anger at anyone that disagrees with his view at 9/11 (and this can be pretty intense), he's angry that people automatically assume he was a firefighter, he's angry that people dont pay attention to the injured and focus more on the people who did not survive, as well as the police and firefighters, he has a lot of anger and not all of it is rationale. 9/11 has now defined his life.

I guess part of our frustration stems from the fact that we wish he would move forward more, let go of some of his anger, that he would recognize that he has this amazing second chance at life and that despite the physical pain, that he would make progress (he has been in therapy but we are convinced his therapist is useless). It may not sound like we are being fair but we have also spent the last 9 years trying to move forward with our own lives. We spent weeks in the hospital, our lives have also been changed and we dont want 9/11 to define our lives too. We will never forget, but we want to move on.

The reason I'm bringing this up now is because yesterday I had an "ah-ha" conversation with my mother. She has been battling with her car dealership after constant issues with her car, and yesterday went to a different dealership where she and my father met another 9/11 survivor. This man had asked my dad about his injuries and they realized that they clearly had something in common. Well, this car salesman used to work for Cantor Fitzgerald and as you may recall, they suffered so many losses as their office was above the impact site. He survived (i'm unclear if he was below the point of impact or how it happened) but he has never been the same. He told my parents that he has never been able to go back into NYC. Not even for dinner. He gave up his pretty decent paying job and now works more hours for a lot less pay just because he he just couldnt have the same life anymore.

It's so easy to pass judgment, to think that it has been 9 years and people should move on. But everyone does things in their own way. The ah-ha realization was essentially that we dont give my father enough credit. He goes into the city. He hasnt stopped flying. While he is nervous to be around crowds and tall buildings, he does it. He has never given up. Each day he fights for his own definition of normalcy despite the setbacks. He has a surgery and has to start physical therapy all over again but he does it.

My mother and I also realized that he has only spoken about what he saw that day once-he talks about what happened to him quite often, but only one time did he describe the people that he saw jumping and the chaos at the site. It took me a long time to get over what I saw at the hospital that day, it's hard to imagine what it must have been like to actually be there.

So I bring this all up to remind myself about the value of perspective. Sometimes it's not about whether we beat trich, or if we are having a tough day or week, it's about how many times we are willing to get up. People can judge us if they want, they can think it should be easier for us to beat, to just stop pulling, but until they really walk in our shoes, and understand what we go through daily while struggling with this disease, we shouldnt care what they think. If they are going to make any judgment on us at all, it should be about how amazing it is that we keep trying and refuse to give up. We should be proud of ourselves. This doesnt mean the next time I may slip I'm going to feel good about myself, but I will pull it together and keep trying and that is something I will feel good about.

Soldier homecoming surprise mix

Hypocrisy

Two weeks ago, when I was in Chicago, my family had rented a van to cart everyone back and forth to the hotel. When I was getting into the van (i think it was the morning of day 2) I noticed fingernail clippings all over the floor by one of the seats. At the time, I wasnt sure if it was someones or if the van was never cleaned from the last people so I asked those in the car (i get really grossed out by stuff like this)- my sister, aunt, cousin, parents- whether anyone had been biting their nails or noticed the clippings. No one said anything.

About an hour later my sister approached me and she was pissed. She said it was wrong for me to ask in front of everyone since I knew she bit her nails (i honestly didn't know it was her) and that she would never have done that to me with my trich. I was really caught off guard because I really hadn't even given it any thought- in my mind, fingernail biting is so common and nothing to be embarrassed about (although I would LOVE if people on the subway stopped clipping their nails in crowded cars- I find that so disgusting). She was right though- I would have been mortified if she had done that to me and I should have been more considerate.

Sometimes its easy to get wrapped up in thinking that trich is so unusual from other habits that only we are ashamed and embarrassed. The truth is, everyone has their own form of trich- something they might do or a habit they may have that they don't want to publicize. Just like we hope people won't judge us, we (or I) should be more thoughtful and empathetic- its true that you just don't know what life is like in anther's shoes.