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Wednesday, March 26, 2008

Fan Mail


I typically try to avoid responding to comments left on this blog. The reason is that everyone gets to hear my opinions whenever they visit the blog. The comment area is your area, where you can tell me that you love me and want to marry me (sorry, females only) or that you think I am the dumbest person on the face of the earth (sorry, no members of my family -- I already know that you think that). Unless comments are obscene in some way, they appear on this blog uncensored.

But every now and then, some comments require a response on my part. One of the goals of this blog is, after all, to help people in similar situations to mine. As it turns out, I have received a few such comments over the past few days. I would like to share them with you in this entry in case there's any advice that you, my readers, might be able to offer. Feel free to post a comment below...

NOTE: If you would like a personal response to your comments, please don't forget to include your e-mail address -- or send me an e-mail with your address by clicking on the link under my picture on the top right of this blog. Also, if you write to me seeking advice, I will do my best to provide it, based on my own personal experiences and what I may have heard from others. However, I am not a medical professional nor do I claim to be, so please consult with your doctor on any medical matters that I may discuss on this blog.

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Original Comment #1:

"I recently got my trach inserted, after 19 years of DMD. It was a bit too early if you ask me, but completely necessary. I've been finding it really hard to talk, because I'm used to talking in normal, long sentences without breaks. Do you have to do this too, or is it just me?"

My Response:

"Welcome to the wonderful world of trachs! Certainly not a club that anyone would choose to belong to, but hopefully you will find in time that it's not as big of a deal as you might have imagined.

It's hard for me to completely answer your question because you did not say if you are using a ventilator. When my ventilator is connected, I can speak better than I had before getting the trach. Off of the ventilator, I can only speak when I have a Passy-Muir valve attached to the end of my trach. Then, it is much harder for me to speak in complete sentences.

I do know, however, that some people take some time to get used to speaking with a trach. They need to work on timing things just right. So, don't give up hope just yet. Make sure you talk to your doctor and he or she may be able to direct you to other medical professionals who deal with speech issues such as yours. Good luck!"

Original Comment #2:

"I have a trach too, and when I'm out and about, people tend to stare at me a lot. Does this happen to you as well? How do you deal with it? I've only had my trach for a few months and am still getting used to it. I'm used to a few stares because I've been in a wheelchair for most of my life, but when I got the trach, more people stared...probably because it's not something you see everyday. My nurse says to ignore it, but she just doesn't understand. I'm only 18, and I feel like one of those really old people who live in nursing homes...do you have these feelings too? I try and put on a brave face, but it isn't hiding what I feel inside!"

My Response:

"To be honest, I don't notice as many stares as I thought I would. I think a part of it is that people may be staring, but I am oblivious to it. When I do notice people staring at me, I start talking more loudly to my nurse or whomever is with me, so the people staring at me will realize that I am a person just like they are.

I think that you are correct when you say that people look at you because they don't typically see people with trachs. Putting on a "brave face" as you say, is probably the best thing you can do in many cases. Then you can go and vent your frustration to people like me, who understand.

And don't forget, you have only had your trach for a short while. The longer you have it, the more confident you will grow and you will come up with your own way of dealing with the reaction of people who encounter you. Best of luck to you!"

Original Comment #3:

"I read your blog all the time. I'm a 14 year old girl with spinal muscular atrophy. I'm in a wheelchair and have a ventilator. When you were in high school, did people stare and make fun of you too? No one treats me as an equal. some girls think that because I have a hearing aid, I'm completely deaf, and they talk about me even when I'm around. I'm pretty good with getting around my school, but people treat me like I'm retarded. They talk really slowly and loudly because i can't say full sentences in one breath. does this happen to you? I'm really confused and lonely, because I don't know anyone in the same situation as me. I'm the only kid in a wheelchair at my school, and I live in a small town, so I don't see many other disabled kids at all. You seem like such a understanding guy, like you've been through so much. can you give me some advice? thanks for being a great inspiriation."

My Response:

"It's nice to have such a loyal reader. Although I did not have a trach or ventilator when I was in high school, it was not necessarily an easy time. While nobody made fun of me, I did feel socially isolated. Like you, I did not know anybody else in my school in the same situation.

I'm sorry to hear that you're having such a difficult time. Have you joined any online groups for people with your disability? I think that could be very helpful to you in light of the fact that you live in a small town and are not able to interact with other girls who are going through similar issues.

How are your grades in school? If you do well in school, you'll be able to show your able-bodied classmates that you are as smart, if not smarter, than they are. Plus, you will hopefully be able to get into college as a result, and you'll have a clean slate and can meet people who will respect you for who you are."

3 comments:

Patric k Moeschen said...

I will not marry you, and I do not think you are stoopid.

I doesn't spell very good. But at least I can spell PHILADELPHIA.

keep the faith. some of my kids want to buy your book....

Sue said...

Josh,
I know you and I disagree about commenting on comments. I often comment on blogs and I love to see what the author has to say about my comments. That's why I try to answer the comments that people leave for me on my blog.

All of those comments you get just go to show why it's so great that you're blogging. It's wonderful to know that you're really helping people and giving them information that's difficult to find elsewhere.

Lene Andersen said...

Unfortunately, not a proposal (well, yet ;)).

I wanted to say that your comment about being oblivious to stares rang a bell. I've been on the street with friends who've been indignant that someone's staring at me and I have no idea. I think it's a coping mechanism you develop - for me, I got tired of hissing (or feeling like hissing) "take a picture, it'll last longer". It's not a nice place to be in and life is much easier now that I don't notice.

And yes, you're right - once you're out of highschool, it does get easier to make friends.