The perceptions of others

[Guest guest]

I know many of you talk about rude comments or looks. Now my hearing

isn't the best in the world so maybe I've just missed them. (Well there

were two times in convenience stores along the way on my long trip. I'd

almost forgotten). However, ignorance is bliss, I guess. I've not

generally been confronted with anything but kindness. Now, no one has

known of the disease so I've had a tremendous number of chances to

educate others. This is not generally some stranger but those I see

regularly where I do business or shop and friends and friends of

friends. It also includes those I meet through them coming to provide

some service unrelated to the disease. It has included those helping me

get my oxygen to the room when I've travelled and even desk clerks.

Now, I separate the comments or looks some of you have received into

those that have just been ignorant but not rudely directed versus those

that have been rude. There is no excuse for the rudeness any more than

commenting on someone's weight or anything else. However, when it comes

to the ignorance and the assumptions of smoking I had to think back

myself. Before being diagnosed with PF what would I have thought when I

saw someone using oxygen? I would have guessed COPD and I would have

guessed smoking likely to have been involved. I had never met anyone

with PF or even heard of it.

Now each of us has to react the way we're most comfortable. I don't

approach people to start talking about what I've got. However, if

someone comments or otherwise says something which opens the door, then

I do use the chance to educate and at least make one more person aware.

I haven't educated the number of people Wally has in Snyder. However,

I'm guessing by now its been at least a couple of hundred from friends

to strangers. I can't honestly say that I do it to promote the cause. I

think it just makes me feel better. I have liked the way several of you

have responded to the rudeness-educating the child and parent at the

same time whether just a curious child or the case of the rude mother.