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Permalink Reply by Carol on July 17, 2008 at 7:36am

Way to go Steve! I agree that being on stage is addictive, I keep wanting to audition for the local theatre but things keep popping up so I figure I don't have the time anymore. I've had proffesional vocal training and I've taken a few dance and drama classes but it hasn't been wasted and has actually helped me in coping with alopecia. I so wish I had time though, it was fun. Break a leg!

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Permalink Reply by Steve on July 17, 2008 at 11:55am

Thanks, Carol! I'm told that certain people just aren't cut out for being on stage. When I think of how shy I used to be when I was younger it's sometimes hard to believe I'm doing what I do now.

You know? I just don't consider my AU any more. It's seldom on my mind because this is just me. I've had this condition for so long, been "out there" for so long AU no longer matters to anyone I meet, least of all myself.

Having said that. I know where I've come from. I have intense memories of coping with AU when I was younger and while some of those memories are positive, the over-whelming majority were not fun to go through. So, I view where I am now as a maturing person who meets everyone and any situation head on and I don't think twice about it anymore. I don't remember when I reached this attitude, probably some time after joining the USCG. But that's over 30 years ago! So, if I can help anyone who lives in Alopeciaville to cope and move on, that's a good thing and I want to help.

Yikes! I remember thirty years ago! When did THAT happen? ;)

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Permalink Reply by Lynn AKA Mom of 2 w/AA on July 20, 2008 at 12:09pm

Hi there Steve! You sure are an inspiration to all that have AA, AT & AU :o) I don't mean to be rude by changing the subject matter of your post, but I've had a question on my mind for you, for a couple of days. My son and daughter both have spotty AA. My daughter is 11 and my sone is 9. Even though I continually encourage my children they will go to college, and we discuss their carreer options, and I plead with my son to never go into the military. Even before my son was recently diagnosed with AA, I've let him know my opinion on not going in the military. Even so, every so often my daughter will mention that he plans to go into the military, so then I just keep my mouth shut about it for a while. I noticed in one of your posts, that you are (or were in the Coast Guard). Even though my son is AA ~ there is a possibility that he or my daugther could someday go AT or AU. Are there special glasses you have to wear while on duty, to keep small particals out of your eyes, that eyelashes would (mostly) normally keep out? Do you know of any military restrictions, for a person with AU. Could the military be prejudiced against letting a person with AU sign up, considering it a medical condition? Of course, if my son decides to go into the military for sure, I will do nothing but support him. I was just curious to know, if you might have any answers. Thanks for your time and I wish you continued success on the stage!!

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Permalink Reply by Steve on July 21, 2008 at 8:27am

Hi, Mom w/2!

Excellent question! Wow, where do I start? First, on the question of a military life, I think the military isn't for everybody, but if someone wants to go that way it's basically up to them. The military is no less safe than driving a car on this nation's highways and the training and experience is first rate, especially if he or she likes technology.

I picked the Coast Guard because it is the smallest of the U.S. services and I liked the life saving mandate it lives by. Back in the mid-seventies the Vietnam conflict was winding down and the draft was pretty much over. There was a question of whether my AU would be an issue at the entrance physical. I had taken it upon myself to get in shape BEFORE I joined so I was passing all the regular checks with no problem. At the final evaluation a senior medical officer looks over your file and asks a few questions based on what's in there.

I was twenty years old, the alopecia word had entered my life only five years before this, even though I'd lived with it all my life. So, I was concerned about ignorance regarding AU. Most doctors I'd encountered had never heard of alopecia and I was wondering about military doctors. Anyway, the medical officer who examined me had four bars on his shoulder (Captain rank). His support staff of younger docs were asking me all sorts of questions about my AU and I was getting nervous when the senior doctor came over to me and said, "Do you have alopecia?" I mean I had been telling the junior docs I had it, but this was the era of anti-military protests when a shaved head was meant as a protest against the military and they were thinking I was trying to pull a fast one. I told the Captain that yes, I had alopecia universalis. Whereupon the Captain started to educate the junior officers what AU is and pointing out all my indicators. He told them AU isn't contagious, which was their primary concern. I was immensely relieved to find a doctor who knew about alopecia!

As for having alopecia while living the military life, no, no special glasses, no special gear of any kind. The biggest problem I had with it was during boot camp where you're not allowed to have an electric shaver (they're afraid you might hang yourself with the electric chord). Being bald in the military is considered an "exotic" haircut and is not allowed. Talk about your classic "catch 22"! :) So, I didn't shave for four weeks! Boot camp back then was ten weeks long, and second only to the Marines for physically tough training. At the fourth week I asked my company commander if I could please shave my head. I had peach fuzz in small spots and one colored spot of hair right over my left eye. He looked at me and said, "It really doesn't grow, does it?" I didn't answer because it seemed pretty obvious to me it wasn't growing and it looked ridiculous! He gave me permission to shave, but the ban on electrics was still in effect, so I asked a friend to shave my head for me - with a blade! That first splash of aftershave was something to remember! :)

So, other than boot camp, AU was never an issue for me again. Except for being fair-skinned, which has nothing to do with being in the military. All I can say is whoever invented sun screen probably saved my life more than once! I spent 25 years in the Coast Guard and I wouldn't trade any of it away. I met wonderful people, handled multiple complex situations and advanced as fast as my brain could go. I've witnessed volcanoes erupt over my head, spectacular sunsets and limitless starry nights. I conned a ship into the teeth of the Perfect Storm looking for a missing Air National Guardsman, too. I became of a leader of men and was responsible for millions of dollars worth of equipment. No, I wouldn't trade any of those 25 years for anything!!

So, is the military for your kids? Not necessarily, because that is something they have to decide for themselves.

Has any of this rambling been of any use to you? And am I right in understanding that you have two kids with alopecia? Isn't that kind of unusual?

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Permalink Reply by Lynn AKA Mom of 2 w/AA on July 22, 2008 at 9:55am

Thank you so much Steve! I appreciate the detailed response. If my son goes into the military, I suppose it wouldn't be the end of the world!! It sounds like you've had many adventures in the Coast Guard. Yes, both of my kids have AA. My daughter is 11. Her first battle with AA was at age 8, where she lost 1/4 her scalp hair right atop her head. After using a cortiosteriod (spelling?) cream and Roggaine for seven months, all of her hair grew back for two years! Then it returned in May of this year, and she has three very small spots. My son is 10 and was newly diagnosed about three weeks ago, he has a very small spot on the back of his head, then a small spot atop his head. All my kids' spots are no larger than a dime. Both kids chose to treat with shots to the scalp every four weeks and Roggaine. So far, the spots have not gotten larger!! My daughter even has regrowth in her newest larger spot! Both kids are lucky so far, in that their spots are easily concealed with their hair. Our dermatologist said that the "shots" treatment will work, and send the AA into remission for a few years if not longer. I sure hope she is right!! She said the cortiosteriod creams take a very long time to work. It is rare to have AA ~ one in 10,000 persons. But, I guess since my kids have the same DNA, they both have to deal with this! Thanks again for the detailed, wonderful response!!

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Permalink Reply by Ben Lainhart on May 18, 2009 at 7:39pm

Your story reminds me of a line in Julius Caesar, act 4 I think.
Bruttus to Cassius:

There is a tide in the affairs of men
Which, taken at the flood, leads on to fortune;
Omitted, all the voyage of their life
Is bound in shallows and in miseries.
On such a full sea are we now afloat,
And must take the current when it serves,
Or lose our ventures.

Keep Attacking!

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