My story captured in a video.. For Continental Hair in Toronto!

Let it Be

My Italy adventure has come and gone, but it has surely left a mark. It’s safe to say that I have about 85 percent or more of the hair I lost in the fall, back on my head. And it is nice, healthy hair. Lots of people have tried to put labels on why it decided to really come back while I was abroad, but I think it’s a much better feeling for me to just accept it, and be happy with how I feel on the inside rather than poke at all the external factors that may have played a role. New favourite song: Let it Be. The song summarizes a lot of what has gone on for me. The moment that I contemplated not wearing a wig, was the moment the hair growth started to pick up.  The time in which I grew to not even think about wearing one at all during my day, that is when the growth really sped up.  The moment in which I stopped analyzing the back of my head using the 2 mirror strategy, that is when things started to changed.  And although I am so happy that I have my very own hair on my head, I am not as attached to it as I used to be with my old hair.  I think that just comes with the territory.  I am starting to learn how to be confident in who I am, and embrace the things that make me unique.  And this is where I have found my beauty.  Not a fake, external, trendy type of beauty.  But a deep beauty connected to your heart and soul. This beauty I think can only come out of you when you make yourself vulnerable.  And another big thought that I like to ponder is that, we are never “there”. It’s a constant journey, with small destinations, but we are never “there”. And so, even though my hair has filled in now, it could go at any point, and return at any point.  And so, learning how to detached emotions will be a very useful skill.  I think it’s useful for anyone, especially those pursuing careers in performing arts.  But for me, the important thing is knowing that my hair is my hair, but it doesn’t have anything to do with what makes me Shauna.  But the pretty amazing thing about this whole experience, is that I think I will be learning from it for the rest of my life. It has touched and changed my views on so many things, things that I thought were never related to hair.  And if anyone is reading who has alopecia, this is what I have to say to you.

A good friend told me this, “Sometimes things are taken away from us to show who we really are on the inside.” I believe it.  Losing my hair showed me my inner strength, something that I didn’t know I had. And although it is hard to have a problem that is so visible, yet also so isolating, I promise you that it has no reflection on who you are. Alopecia is a part of you, but it can never be you.   And you might have to learn of a new way to think of things, a way that doesn’t include labels, and ideas, a way that just simply accepts something for just the way it is.  And this concept might seem radical, but it has really helped me ignore all of the reasons people have tried to dream up.  Also, I won’t tell you that you are beautiful, but I can help you try to feel it for yourself. For me, being told I was beautiful seemed fake at times. As if people just think anything that is a bit out of the norm should be called beautiful.  Regardless of whether they meant it or not, beauty needs to be fed from inside of us. And so, taking time and investing in one of your passions would be my biggest advice.  Doing something that makes you happy, proud, something you feel that you are good at will help you a lot.  Not only does it take your mind off of what is going on, it also reminds you that there are many things in life that make you happy, not just having hair on your head! Surround yourself with loving people. Cry as much as you want. Smile and laugh just as much.  Know that this is a bump in the road. Really, really know that this is just a bump.  And maybe one day, you will look back and see everything as a huge blessing. I am starting to see it this way.  And know that the things that make you who you are can never be taken away from you.

I hope this helps you, and thank you for your support in reading my blog. I will blog again soon!

My First Hair Cut :) Since you know..

Today I got a real haircut!  A haircut with my own hair.  I went into the hair salon to pick up my mum, and when I did, my former hairdresser offered to just trim up my hair and blend it for me! I was so excited.  As I sat in the chair, I couldn’t help but think, wow, this is my first hair cut on my hair since last July.  Besides, shaving my head of course.  It was so wonderful! And as the trimmed hair from the scissors fell to the floor, I smiled at the fact that I had enough hair to even style, and make a bit of a mess on the floor around the chair I was in.  And that was when I knew I am going to beat this.  Alopecia, will always be a part of me, but it is not and never will be, me.  And I love my hair, but I love myself and who I am way more.  Also, the other day I went to Toronto to film a movie for Continental Hair about alopecia, and their wigs and how they have helped me.  I loved the experience, I felt like a star!  I got to try on 4 different wigs, and for the majority of the film I am wearing a red wig.  I looked like a Jetson! And if I had had my glasses with me, I would have looked like that red haired girl from Scooby Doo.  I actually teared up while they were filming, because Michael asked me what my first experience was like coming to Continental Hair.  And I said, “I walked into the salon with my Mum and my brother, and Michael immediately brought us to a private room where he pulled out a photo album.  In the photo album there were pictures of people just like me, who had come to Continental Hair to get wigs.  And, those people were smiling.  I immediately knew I was in the right hands.  I showed them pictures of me before the hairloss happened, and they put me at ease by saying they could find the right hair that would match what I had had.  And it only took one day to get my wig.”  This is the part where I cried a little.  I continued to say, “What these people do at Continental is beautiful.  They give back our privacy, they make us feel comfortable, a feeling that is a luxury when you are going through such a public and visible change.”  Or something along those lines.  They had to stop the filming, so I could wipe my eyes, and then we continued.  At the end of the shoot, I got to do my “Pantene Moment”.  I flipped my hair around (the wig), and smiled, and was just like one of those girls in the hair commercials.  Overall, it was such a great moment, to be so confident in front of a camera.  I will post the video on my blog as soon as I get a hold of it! Sorry it has been so long since my last entry.  I have been a busy bee.

Lack of Inspiration - Bad Title

When your tummy gets all in a knot, and you don’t know how to untie it, what do you do?  Sometimes, my stomach just gets in a knot, and then my attitude turns sour, and I want to shut the world out.  My hair situation is getting so much better. So much so, that I haven’t blogged as much recently because I just have an absense of things to say.  Nothing really is inspiring me to write lately.  Maybe it's because I am on summer holidays, and having to memorize tons of music for my opera program that I am doing later on this summer.  I am really excited about that. But as far as my hair goes, I am doing so much better. It is growing back.  I can’t believe it. I refuse to believe it. But yet, it’s really dark and thick on the top of my head.  And last time I visited the doctor, we decided to do an experiment.  An experiment to see if the stupid and painful steroid shots were actually doing something for my hair.  I didn’t think they were, but he thought they were really helping and he wanted to keep going with them.  So we decided to do a few shots on the left side of my head in a particular bald spot, and see if grows in more than the bald spots that mirrors it on the other side of my head.  I dunno, I had a speech all prepared in my head for when I would see him, and then when I went in, I did my usual routine of taking my wig off, and he just smiled at me, and said it looked amazing, and the treatment was going so well, and blah blah blah. How was I supposed to say, wait a minute, I don’t really like these shots, they hurt and I don’t believe they work?  I just kept my mouth shut for a few minutes, and then I tried to explain how I didn’t like them.  But only, to fail, and end up getting them again. I was so sad.  I thought, for all of my strength that I have, why couldn’t I have told him off?  Maybe because I thought I should believe in what he was seeing, in what everyone else is seeing.  They are seeing black hair on my head.  And what am I seeing?  Bald patches around my ears, and at the back of my head.  A silver tinge to my hair because some hairs are white, and some grey, or translucent.  And it’s so easy to throw on my beautiful wig and forget about it all.  Forget that it happened.  Sometimes I do, and it’s weird because when people compliment my hair, I say thank you with a smile.  Before, I would feel guilty, want to explain my situation, and feel like I didn’t deserve that compliment.  I’m not sure what has changed, and if it is a good change?  I know feeling guilty wasn’t a good feeling to have, but maybe that was more true to myself.  I’m not as afraid to go in public with my short hair that is patchy, it all depends on my mood.  If I am going with someone else I know, then I am fine.  But if I am alone, it is harder for me.  I feel like I shouldn’t make eye contact with people, but you know the worst is over.  The growth is good, so much that people wouldn’t think I was bald at a first glance.  However, I kind of want to shave it.  I want to make it grow back thicker.  I don’t know if that myth is true, about shaved hair growing back stronger, but sometimes if you believe it in your mind, then you seem to make it come true for yourself.  What do you think?  I apologize for not having anything interesting to blog about.  Hopefully something of substance comes to mind in the next week.  At any rate, I still have some confusion about my hair delusion. 

Body Image

Body Image. What is it? The way we think of our bodies. How many people are actually happy with their body? How many people are indifferent, and how many people live their lives trying to change their body, and forget about all of the good things it already does? To be honest, I don’t have the best body image. In fact, that’s one thing I wish I could change about myself.  I wish I could just be carefree about my body, and not worry about whether I got enough workouts in, or whether or not I have eaten well each day. Maybe that is just caring about my body. But what is the difference between poor body image and caring about my body?  The line is fine. It is small, and some people tread so carefully in between.  And it’s all in the eyes of the beholder. An anorexic always is searching for a thinner body, and food is the enemy. How can we find balance. Blah.. I don’t like the word balance. First of all because it is just a bit vague. Is anyone really sure of how much of each part of life is needed to create balance? There are no rules, it’s up to us. Sometimes I like having some rules for things, just to make it all easier. And that’s where certain eating disorders and poor body image ideals come into play. People impose rules on themselves. Since nobody knows really what is right, no one actually knows the correct balance, and then we impose an ideal balance upon ourselves.  We think up different ideas of what we would like for ourselves without considering what is actually possible.  And hence, fad diets, crazy exercise routines, and for me, stress.  Stress seeps up on me covered with an invisible cloak. I am horrible at figuring out if I am stressed or not. Usually, I have some stress if I find myself asking myself if I am stressed.  And then, the other tell tale sign of me being stressed is the weight. I feel like there are these heavy weights that sit right on my chest, in the middle of the part that deflates when I exhale.  The weights don’t move. They sit there, and bug me while I sing, they bug me while I try to sleep at night. The only way for them to leave is through some exercise, talking to someone, and best of all, writing.  What’s stressing me out right now in my life is my public speaking adventure. What if I get laughed at by a group of 13 and 14 year old kids? What if I can’t keep a brave face, and something touches my overly emotional heart and I cry?  And why am I so afraid to break down?  It’s funny how when I was young I thought that older people had no fears. Fears are only for kids to have. But that’s not true. Children are often more fearless. I will mebrace my inner child, and step into a realm of vulnerability.

New Hair

 My head doesn’t get cold at night anymore. But I still wear a hat because I am used to it now.  My hair is growing back. I’m not sure how much of the new growth really wants to be there, and how much is just a result of the painful steroid treatment I am stopping.  And the hair that is growing back is still patchy, and there are still glowing bald spots. But celebrate the small stuff they say.  I am happy, almost nervous about the whole thing. I don’t want to get my hopes up because if all of this hair decided to fall out, then I am back at square one. If I have no expectation, then I don’t get upset, and life moves on.  If I put all this faith and happiness into the new hair, and it leaves, I’ll just be so upset all over again. And that was hard enough the first time.  But the thing is, I will probably be dealing with this whole issue for more than just a few more months. And I keep looking for signs that signal it to be over.  And by over I mean a few different things.  I look for consistency, like having no hair or evenly dispersed hair. I am not really content when it’s in between.  The thickest growing patch of hair is on the very top of my head. This is where I got all of my first set of steroid shots because they don’t hurt that much on the top.  The other times I have received the shots around my ears and the back of my head, those places hurt the most because of the nerves in those areas.  I tend to rub my head a lot when I don’t have a wig on, and I’m not sure why.  Perhaps its because my head is covered for so many hours in the day, and it feels nice.  I also feel a guilty feeling in my stomach when people see my hair now.  Since it’s coming back, everyone looks at it with huge smiles and they say I must be so happy.  It hurts me because maybe I should be really happy. But the reality is that I am not.  I am not sad, just resigned.  I just don’t want to feel any more emotions about the issue.  I want facts, logic, and progress.  But all of the issues that stem from my hair are emotions that are flaky, not logical, and unpredictable.  All opposites.  So for months now I have tried to fight these qualities and find answers, and try my hardest to create progress in order to grow back all of my hair.  Now, I give up.  Not in a quitting way, I give up so that I can occupy a different view on the issue.  First of all, it isn’t an issue.   If all of this was meant to happen to me, I say bring it on.  I won’t let it define me, and I won’t make myself suffer in the hopes that maybe I won’t be so different someday.  This means, I won’t get steroid shots anymore.  I love myself too much to let someone penetrate my scalp forty or fifty times in less than ten minutes, and leave me crying, and shaking.  It isn’t his fault.  The other options are putting me in a room with severely itchy cream on my head that creates blisters.  The things I have learned about myself in the past six months are wild.  And here they are:

1.     I am so strong.  Why?  I am not afraid to cry in front of many people.  I’m not afraid to tell my story.  I’m not afraid to show people that I am human, and fragile.  I'm not afraid to surround myself with only positive, and loving people. 

2.     I love my family.  I always did, but I now know how comforting and loving they all are.

3.     I have a better understanding of what treatment is.  Treatment doesn’t have to involve someone with a stethoscope.

4.     I really am hardwired as an achiever.  This “setback” didn’t affect my academics or singing life. 

5.     It is important to love who you are as well as your body.  Still working on this one. I think we all are..

6.     There sometimes are no answers. And having no answer, or doing nothing is in fact a solution.

Devote to Emote!

I’m going to talk to students about my story.  I don’t really know why I want to do this so much. All I know is that I really, really think it will help me.  It would be amazing if it helped them too, but I think the act of me telling my story and what I have learned to other people will give me a sense of purpose, and help me with the process of healing.  When I am talking about all of the morals and lessons I have learned and hope to learn, the morals themselves sink deeper in to me, and I believe them more readily.  Also, body image is a bit of an untouched subject when it comes to school, but it is on the brains of all of those teens.  Hopefully I can give them an example of how it is important to love and care for not only what you look like, but also what you feel like. A big lesson I am learning right now is that my emotions are justified.  A lot of the time, I try to dismiss my emotions, try to control them, or think that they are wrong. But they aren’t.  You are allowed to feel whatever you are feeling. And if you don’t acknowledge it, it will only grow bigger and bigger, and be harder to deal with later. If you are pissed off, be pissed off. Just be aware of things that make you feel better.  Talk to people. Talking is so important. Everyone is so busy these days, sometimes I feel that a “stressful" life is the mark of a “successful” life. And this is not the case. It isn’t how many things you can balance before the silver platter crashes over your head, and you collapse.  If you aren’t working every second, that doesn’t mean you are lazy. This is a mentality that I need to get over. I sometimes over program myself to the point that I am frustrated and tired. Stress and anger lead to sickness for me.  And then since I am a singer, the sickness affects my passion, and since I am getting hired to sing in different shows, it is crucial for me to be healthy.  And so, I need to lighten my load, but how? I usually just look at my planner and decide which things don’t need to happen, or I exercise, or I write.  Being stressed isn’t something to be proud of, but I see people walk around and talk about it with each other. And this is how it goes. Two people will start a conversation about how stressed they are. And usually, they then expand and talk about what they have to accomplish and how there isn’t enough time, ya da ya da. When really, wouldn’t it be a nice change if someone asked how you were going to deal with the stress? Or maybe gave you a suggestion to deal with it? Rather than both just going your separate ways and still feeling stressed and maxed out, what if you guys just confided in each other that you aren’t sure what to do to make it all feel better.  Honesty. Why is this a good idea? Because, you might get some good ideas, and also little acts of humanity (such as this) bring you closer to someone. Admitting that you don’t know something, is a sign of strength. It sounds all backwards, but this is what I have come to believe.  Back to dismissing emotions.  I was asked to sing at a funeral the other day. I did not know anyone in the family, nor the deceased, so I figured it wouldn’t be horribly difficult for me to get up there and give the offering of my music to the family. And since, it isn’t a show, the spotlight isn’t shining on my face. However, during the service, I was completely moved, and I openly wept with the family for their loved one.  Little things touched me.  Like how she always had a twinkle in her eye even when her memory was failing.  Maybe this touched me because I see a bit of this in one of my relatives.  Needless to say, when I got up to sing it was one of the hardest things I have done in a long time.  My throat was all choked up, my nose was runny, but what saved the day was that my heart was in the right spot.  By no means was this performance one of my most technically accurate and well crafted ones. But it came from my heart. I had moments of fear when the organ started to play, I wasn't sure if I would be able to do it.  But somehow, after that first breath in, I started to sing. It was a shaky start, but then my heart sang the rest for me. And I moved people. I have never sung more from my heart than I did at this funeral. I was talking with the family afterwards, and they said that my humanity as an artist was more beautiful than any perfect note could ever be. And to me, this is the mark of a true musician. So, acknowledge your feelings, because they could bring you closer to someone, or at least guide you to the path of feeling better.  Emotions are part of what makes us human, they are beautiful just like us.

Hat with Hair for the Gym :) My Lucky Day

A Hat with Hair for the Gym - Hallelujah! - Click here to see!

So my ponytail hair that I can put any hat over came in the mail today. I was ecstatic! I tried it on and was immediately inspired to go for a run and have the ponytail swoosh behind me. That is exactly what I did. And I brought my gym pass along too, just to go in the gym, and experience what it would be like to not be noticed.  And let me tell you, I had one of the happiest mornings in a long time. First, the sun was shining, and my run was perfect. I got in the gym and did my weight work out.  There wasn't much to notice except that people weren't as courteous as before.  People treated me normally! They didn't really care that  was there! I was using the tricep machine which has different workout stations on each side, and people actually came up and used the other ones while I was on the tricep one.  Before, I feel like people didn't come within a few metres of me, because I was maybe a bit intimidating and of course, very different.  Confident bald girl at the gym, I think might be a bit scary to most people. Anyways, I blended in so much it was odd.  I never really noticed before, but I'm so used to looking down at the ground at the gym, and not in the mirrors. Well, today I was looking in the mirrors.  Part of me felt bad, that I can't have this much confidence as a bald woman.  But, maybe the confidence will grow.  I don't believe that I should force myself to be bald in public in order to gain more confidence. That seems a bit wrong to me.  Anyways, check out the website! These ponytails are awesome!

Funny Encounter #2

So this encounter might not be as funny as Funny Encounter #1, but here goes! I was studying, again.. Look at me! So diligent. Ha! But yes, I really was studying, this time it was a Tuesday morning, in the privacy of my bedroom.  It was a sunny morning and I had my blinds open so my rainbow machine could scatter different shaped rainbows across the walls of my room.  I know it seems random, but I really like my rainbow machine, a little fake crystal spins around and when the light hits it, the rainbows scatter around my room.  I’m sure there is a way better scientific answer, but all I really care about is the pretty colours I get on my walls! Anyways, I was in the middle of some intense listening for my Music History Exam, when I heard a tapping at my window.  I turned around and saw a delivery man.  He was motioning to the door, and he yelled through my window and said he had a delivery.  I knew that my landlords upstairs were getting a new fridge.  They have been receiving new refridgerators every week because they are never happy with the current one. I’m hoping this one is a keeper. Anyways, so I pointed towards the door, and I met him there. Then he said he had a fridge to deliver, so I gave him the cell number for my landlord. After he talked to my landlord, he thanked me for the help and then said, “By the way, is that cancer?” while motioning towards my head.  Since I was studying in my bedroom and it was the morning, my hair wasn’t on yet, and he caught me off guard.  The audacity of that man I tell you.  I looked him in the eye and said, “No.” Then he asked, “Oh, well what is it?” Then I said with my death-smile, “Go to the main level to deliver the fridge. Have a nice day.” And promptly, I slammed the door. It felt really good until I started to cry. I cried because the whole thing just caught me off guard, and I wanted to go upstairs and yell at the guy, but I didn’t because that’s just not the right thing either. It sucks in these situations because nobody meant to make anybody upset and then it happens, and then there is no answer because it’s too upsetting to try to get an apology out of someone like that. So you just take all the hurt and wrap it up in a little ball inside of you. And that little ball slowly turns into strength. I am so much stronger now than I was in the fall.  I remember, at the end of October my school choir was having a concert. I was going to have to wear a head scarf on my head, but I wasn’t sure if I should ask permission from my choir director or not. So I approached him, and there were a few other people ahead of me with little things to ask him. Finally when it came to my turn, I just blurted out, “I’m wearing a head scarf for Friday’s concert because a lot of my hair has fallen out.” I have never said a sentence so fast in my life. I didn’t even wait to see the reaction on his face because I walked so fast out of that room. And people who know me well know that I walk really fast. I’m not sure if my conductor even knew what I said. But as soon as I left that room I was in uncontrollable tears. Whereas now, I can talk about it with people, and tolerate their questions.  Well, to a certain extent. I can be tolerable only if they consider me as a human being and not as a science experiment.

Funny Encounter #1

It’s exam time.  The library suddenly becomes a bustling place where everyone you know is there.  And, frankly, not much studying goes on if you are sitting in the coffee shop area.  Which is where I was the other day, eating a great chicken sandwich before I went off to prepare for a final. Since everyone is in the library, you’re bound to run in to people you know, acquaintance, friends, profs, all of the above. In my case it was an acquaintance.  She approached me, I was in the corner on a comfy chair reading some notes and eating, and she came and sat on the small empty chair beside me.  We met in first term of first year because we had one class together, therefore she is not a music student which means I never really see her, and it was one of those strictly school related friendships.  Anyhow, our friendship reached the level of Facebook worthy, hence we are “Facebook friends”.  The term “Facebook friend” is really up to debate, I mean I wouldn’t consider myself good friends with everyone I have on Facebook, but I don’t have anyone on my Facebook that I haven’t really had a conversation with or something like that. So we start talking, the usual boring stuff, exams, summer etc. And then she throws the notorious question…

            “So I was looking at your profile, and you have no hair?”

“Oh ya, I lost all of it this past fall due to an autoimmune disorder.”

And here comes the best response so far to my rare condition.. Are you ready?

            “You have AIDS??!!”

Please note that this comment was said loudly in a noisy coffee shop, where half the people are already eavesdropping, and the other half are still within earshot.

“No! Autoimmune Disorder doesn’t stand for AIDS.. I believe, well from what I have learned, that AIDS is Acquired Immune Deficiency Syndrome… “

            “Oh cool!”

Okay so this comment almost made me laugh. For a couple reasons:

1.     We were already having a completely awkward conversation.

2.     Who says “Oh cool!” when I just explained what AIDS meant?

Needless to say, I pulled the classic “Well I really should get back to studying” card, and she left.  When she was out of the coffee shop, I started laughing to myself.  Autoimmune Disorder, AIDS, I guess I understand her logic.  But, really?!

Things That A Bald Woman Needs

1.     Good family.  Family members that love you even though you act like a bomb that might explode at any second.  And good family that loves you even if you explode – on them.  Good family to put you in your place and show you how to act better, and nicer when dealing with such an emotional charged problem. 

2.     Good friends.  There are many different types.  You need the friends who will just sit there and listen, over and over again.  You need the friends who will distract you.  You need the friends who will hold you while you cry.  You need the friends that will cheer you up and make you laugh.  But you do not need unreliable, flaky friends.  Get rid of those.

3.     A gym membership.  Some athletic outlet. I need to exercise or else I get so grumpy and very tense.  I always feel so much more relaxed after I work out.  If I haven’t exercised in a few days my stress level is so much greater than when I exercise regularly. 

4.     Distractions.  Keeping busy is key!  I feel the most sad and I dwell on my issues the most when I am alone.  Surrounding yourself with positive people, will help you forget about what makes you sad, and you will have fun!  But, it’s also about knowing when to confront your feelings.  I find it hard to understand when I feel upset at someone if there really is a reason for me to be upset with them, or if it is just my own insecurities shining through.  And, I don’t really know how to figure it out. And then, I let it sit in my stomach and it festers into a big emotional bomb, until one day, the perhaps innocent person says something that lights the bomb, and then an unforeseen explosion occurs. 

5.     Tough Love.  Sometimes, you just have to know that things are not that bad. And sometimes it’s so much easier to be sad, than to look at the good things going on.  It can be easier to stay in your current emotional state, than switch to a different one, because people want to know that their feelings are justified, and righteous, when sometimes they just aren’t. 

6.     Attention. In the right way.  When you feel different, all you want is some attention, in a positive way. Someone to notice your uniqueness and appreciate it, and maybe even admire you.  We all love attention. Especially me.

7.     Hug. Talking is one thing, but silence and a hug is another.  And sometimes words just don’t need to be said to comfort someone. 

8.     Drive.  Goals.  A Direction.  These are the things we live for, and are working towards.  Being confident in these things will help you notice that the challenges that come through your life don’t alter your goals, they merely test you, and make you stronger, more intelligent, and more self aware.

9.     Animals.  Sometimes I get sick of people. I just would rather spend time with a cat or a dog. A dog or cat that lives life simply, with great love.  They can help you sort out so much, because they are always so true to themselves. I believe we have so much to learn from animals.

10. Something exciting to look forward to.  I’m going to Italy this summer for a singing program.  Sometimes when I am in an emotional rut, all I need to do is think about that, and I regain so much hope and self love.  Having something fun to look forward to is one of the best medicines out there. 

Lemons = Lemonade

There once was a woman who woke up one morning, looked in the mirror,
and noticed that she had only three hairs on her head.

  "Well," she said, "I think I'll braid my hair today." So she did and
she had a wonderful day.

  The next day she woke up, looked in the mirror and saw that she had
only two hairs on her head.

  "Hmm, " she said, "I think I'll part my hair down the middle
today."  So she did and she had a grand day.

  The next day she woke up, looked in the mirror and noticed that she
had only one hair on her head.

  "Well," she said, "Today I'm going to wear my hair in a pony tail."
So she did and she had a fun, fun day.

  The next day she woke up, looked in the mirror and noticed that
there wasn't a single hair on her head.

  "YEAH!" she exclaimed, "I don't have to fix my hair today!"


I read this story online at http://www.positive-way.com, and I thought it was perfect.  It really shows that attitude is everything. Take those lemons and make some lemonade!!

Some Poetry

I feel that the link between laughter and tears is a lot closer than we sometimes realize.  Maybe it's just me.  But I wrote a poem, and it illustrates how crying and laughter intersect in my life. It doesn't have a title yet, but here it is:

I start crying when I take off my wig.  I start crying

when I look in the mirror. I start crying

when a look lingers. I start crying

when I see an old photo. I start crying

when I feel overwhelmed. I start crying

when someone looks deep into my eyes. I start crying

when I am alone. I start crying

for no reason at all. I start crying

when I want to be happy. I start crying

when I just gave you a smile.  I start crying

because if I don’t I’ll laugh. 

I start laughing for no reason at all.  I start laughing

when I am alone.  I start laughing

when I see an old photo.  I start laughing

when a look lingers.  I start laughing

when I feel overwhelmed.  I start laughing

when someone looks deep into my eyes.  I start laughing

when I look in the mirror.  I start laughing

when I want to be happy.  I start laughing

when I take my wig off.  I start laughing

because if I don’t I’ll cry.

But I never start crying when I am about to sing.

I borrowed the format for my poem from a poem that my brother introduced to me by Gwendolyn Brooks! That poem goes like this:

We be real cool. We

skip school. We

lurk late. We

strike straight. We

sing sin.  We

thin gin.  We

jazz June. We 

die soon.

This poem grows on me every day, probably because it's easy to remember, and so clear. 

Hair Symbolism

Hair symbolism.  For a long time, hair has been a symbol in society.  There are many Bible quotes that deal with hair, one specifically states that if a man has long hair it’s shameful, but if a woman has long hair it’s glorious (1 Cor. 11:14-15).  Basically it is saying that each sex should have opposite hair.  More recently, hair is used to classify groups people, from hippies, and punks, to even certain generations, like the 80s for example.  Hair is a powerful identifier.  Why?  Well, because it’s physical, and that makes it really personal, and then, it is visible, making it public.  Another thing that I think is important is that hair can change quickly.  Unlike your arms, or legs, or other body parts, hair can be changed frequently, and it might even be a moderator for how people’s identities’ change.  The way you did your hair as a little child is probably not how you do it now.  Even the way you might have done your hair last year could be different than now.  But are your arms and legs much different today than they were last year?  Hopefully, not.  They are different from when you were a child because they have obviously have grown.  But they aren’t curly because you permed them, or a different colour.  (Unless you tan often.)  What I’m trying to say is that one way of seeing the evolution of a person is through their hair.  Not just scalp hair, everyone knows that other hair plays a role in growing up.  I don’t need to go there.  Different places where we have hair have different significances if you are a boy or a girl.  Most hair is unwanted as a female except scalp hair, which I would argue is definitely “tangled” in a women’s perspective of being feminine.  And for men, scalp hair is important, but maybe facial hair is more so, because you always see young guys trying to grow beards, and other patterns of facial hair.  Back to women, not only is having hair on our head an important part of being “feminine” but, it has been for a long time.  Remember Rapunzel?  And also, pick up any women’s magazine and I bet there will be at least one article on hair.  Magazines are always talking about the different styles and looks you can have if your hair is cut this way and that way.  Most men magazines don’t have articles like this, as most men don’t really change their hair for different events.  Furthermore, hair colour even creates stereotypes like … the dumb blonde.  What I am trying to say is, hair is different than other body parts.  It is personal, public, and somehow it can embody a lot of our personality.  But, we are never bound to these observations.. as one of my favourite quotes is, “Be the change you wish to see in the world.” (Gandhi)

Did you know:  According to the Guinness Book of World Records, the person with the longest scalp hair is Xie Qiuping, a Chinese woman whose hair is 18 feet 5.54 inches or 5.627 m.  (Although some websites say her hair is 16 feet, they might be older websites.. still, so much hair!) On the Locks of Love website, the minimum hair donation is 10 inches long.  So by my calculation, Ms. Qiuping could donate her hair approximately 22 times!!!

Photo taken from: http://www.chinafails.com/2010/07/xie-qiuping-with-the-worlds-longest-hair/

Question Tree

I’m used to being in a confused state of mind.  In the past, I have always had everything clearly laid out in front of me.  I would go to university after high school, and I would then do a master’s degree.  Now things that I thought were stable ideas are crumbling beneath me, and I am left with a bunch of little thoughts that lead me in completely different directions.  If all of my questions were one big question tree, it would look something like this.  Where will I be next year? That would be the trunk of my tree.  Do I stay in Victoria?  Do I go back closer to home in Toronto?  Those would be the two main branches of my tree.  To answer any of these questions, I have to consider what is most important to me.  I know that Victoria isn’t going to do much for me in terms of good health care, and so in that aspect, Toronto wins.  But with the growing confidence I have, that whole issue is beginning to mean less and less to me.  Health care is such a broad term.  I don’t know how I feel about the needles.  They are the “health care” I am receiving from Toronto.  Sure, they have made some hair grow, but:

1.     They aren’t permanent

2.     They hurt

3.     I still wear a wig over my head

So in the simplest terms, they have not done a whole lot.  With me growing more and more confident as the days roll along, I question how much they are actually helping me.  Why would I continue to do a treatment, that maybe when stopped, will land me back at square one again?  The immune system is complicated, I don’t even have the desire to learn about it, but from my experience, doctors haven’t given me much hope for my case.  And for me to relocate so as to be more accessible to other weird hair science experiments seems a bit strange to me now.  Then there is family.  I really, really love my family so much.  They are wonderful, and I know I would benefit from being closer to them.  Maybe however, that isn’t the best thing for me right now.  Sometimes, families, although they have the very best intentions at heart for you, don’t always react in the right ways.  It’s hard to explain, but what I’m trying to get at is, that it doesn’t help when my hair situation is brought up all the time.  Or if somebody wants to check and see how much has grown since the last time they saw it.  These gestures rub me the wrong way, I feel like an experiment, rather than like a person. 

Of course, talk to me tomorrow and I will be on the bandwagon to come home as soon as possible.  My mind changes so often.  Maybe as often as my confused cells in my head!!

New Discoveries

Lately I have started to discover a few things.  Just about life in general, and how people adapt and change when they need to.  And since I like making lists, I think this is the perfect opportunity to make one!

1.     When something happens that really, really shocks us, or is an “accident”, we have to learn how to accept it first before doing anything else.  Everyone has had an accident happen to them, maybe a close friend passed away unexpectedly, a car crash, sickness.  There are tons of examples.  When these things happen, they are upsetting, and we feel like a limitation has been set on us.  At first we refuse to see differently than the way we were looking before.  If the way we were looking before happens to be the colour red, and our new path is the colour green, we will not see green until we choose to see green.  No matter what other people tell us, the change has to occur from within.  And this message doesn’t apply only to the shocking and upsetting things in life, but also it applies to people’s perceptions, especially how we perceive ourselves.  Someone can tell you everyday that you are beautiful, but if you refuse to see yourself that way, you won’t believe it. 

2.     When we accept the accident, the upsetting situation, or how we feel about ourselves, when we really accept it for what it is, then we start to be able to see our new direction more clearly.  How?  Well, I think we learn so much about ourselves and life during the time when we are trying to accept a change, and once we have accepted it.  Once we learn and understand after a challenge, our perception shifts to accommodate what we know think, and how that experience affected us as a whole.  Like if somebody finally accepts the death of a person close to them, they might learn how precious life is.  And they might be more accepting towards death (not in a morbid way) but in an honest way.  Sometimes our society seems to play the message that we are going to live forever, but simply we won’t.  And once you think about that, you automatically know what is more important.  Family, friendships, self-love, to name a few.

3.     How does this preachy message have anything to do with alopecia and my story?  So when I first was losing hair, I was frustrated, angry at the world, and angry at myself.  I still am this way.  But I never had the thought that this was something positive.  And now I do.  Although I still have days where I am so upset, and so angry, I also have days where I am incredibly inspired.  I now see this experience as an opportunity to educate people about body image, and acceptance.  Especially young teens, I want to share my story, and what I am learning in hopes that maybe they will appreciate their beauty more.  Because, things go, like hair, but the really beautiful part of a person can never be touched.  And I never thought this way before, it wasn’t like I was really shallow or anything, I just never was so in tune with what I thought being beautiful was.  And the limits to what people consider beautiful are so much wider than you might think! 

4.     I’m also inspired to speak out to groups of people about my alopecia because I know there are thousands of people, especially women who hide their alopecia, and feel weird, and have not accepted it.  I want to speak for them, and show them that they have a voice, and don’t need to be ashamed for their feelings.  I want to speak out on behalf of anybody that has felt less beautiful because of something physical. 

So I’m going to do a talk at my old elementary school for the grade sevens and eights, and perhaps I will go to a few other schools as well.  I'm excited!

Sinking Heart

Do you ever get a heavy feeling in your heart? Sort of feels like something inside you is sinking, and sometimes you want to tell people, and sometimes you just want to be ignored.  I don’t know why but I get more sad about my hair at night time, and around couples.  I think it’s because I feel lonely, and weird.  Two feelings that nobody enjoys.  I have a big fear that nobody would ever want to date me because of this “quirk” I have.  I know its probably not true, but it still lingers in my mind from time to time.  Especially when I see other people who are so happy with each other.  I guess I feel lost.  Because I don’t even know how to be comfortable completely, and happy completely with myself, let alone another person.  I get sad because I hate that a physical feature governs my emotions so well.  How does a lack of hair have anything to do with my personality? Logically nothing, but emotionally, everything.  And that’s how alopecia rolls along.  Logically, you are healthy, just “sans cheveux”. But emotionally, you tremble, cry to yourself, and put on a brave face.  You come home from a great day at school, only to find yourself looking in the mirror and tearing up.  Looking at yourself and then analyzing what your eyebrows look like today, and wait, is there an eye lash missing?  And then becoming frustrated that you care so much.  The sadness quickly turns into anger, and then all of a sudden you pick up your stupid Styrofoam head and throw it with all the force you have.  You just pick it up and throw it.  You don’t want it.  You never did.  But here it is.  In your room, taking up space, looking weird.  Making you feel weird.  You drew red lips on it to make it more feminine.  Heck, anything to feel more feminine.  And you want to jab it with scissors and rip it apart and stomp on it, but you don’t because you need it.  And as quickly as all of the anger came, it leaves.  You pick up the Styrofoam head, and place it back on your desk.  And the sinking feeling in your heart returns, so sometimes you lock your door.  Keep yourself away from everyone.  From everyone or anyone who looks at the real you and obviously notices your baldness.  Even if they love you for it.  They notice it more than they would if you had a messy ponytail.  Even if they love you, still, they notice.  I don’t want that.  Lying on your bed, you look up at the ceiling and try to breath deeply.  You have the shaky breaths, the ones that loud are uncontrollable.  You stay there and breath until someone knocks on your door, or you get distracted.  And then you forget about the whole thing.  The only thing that will conquer my alopecia and all the issues that stem from it is inner strength.  No steroid shot, or encouraging word will rid me of this stupid, stupid disease.  Disease. Gross word.  Inner strength to look behind the faces of other people to see who they really are.  Inner strength to accept the variety of ways a person can be beautiful.  Inner strength to know that beauty can’t be bought.  Inner strength to be blind from the glances I get in the gym.  Inner strength to be able to reveal not only a bald head in public, but a patchy head too.  Inner strength to know that it’s okay to break down.  Inner strength to know when help is needed.  Inner strength to know that alopecia isn’t everything.  Inner strength to know that I am just are worthy as I was six months ago.  Inner strength to know that the true Shauna can never go.  Untouchable.  Unlike hair, that will come and go and change colours, the real me, and what makes me beautiful can’t leave because of my screwed up immune system.  Great that I can write that in a sentence, but still I cry.  Still I feel ugly.  Still I am lonely and weird. 

The Globe is On My Head

It seems like a silly thing to say, but I don’t know if I have actually explained a lot about alopecia.  Other than how much it sucks, or what it effects, I don’t know if I have really explained how it works for me.  Because it’s different for everyone.  Good old Wikipedia says: “Alopecia areata (AA) is a health condition in which hair is lost from some or all areas of the body, usually from the scalp.  Thank you Wikipedia. Some people refer to Alopecia as AA, but I choose not too because I believe the world has enough acronyms as it is, and making an acronym for a very uncommon thing seems really, well, dumb.  Also, I don’t know what “areata” means, so I never call my alopecia, alopecia areata.  Just like the title of my blog, alo-what? I tend to lose people after the word alopecia comes out of my mouth, let alone adding areata to the end of that.  Anyhow, there are 3 types of alopecia.

1.     Alopecia Areata - which is small, bald spots on the scalp.

2.     Alopecia Totalis - loss of all hair on the scalp

3.     Alopecia Universalis - loss of all body hair.

My alopecia seems to be a “severe case of alopecia areata” because I am not (contrary to popular belief) completely bald.  I have little fuzz patches, they look like small continents that don’ t want to connect to each other.  Also there is a very smooth ocean between these continents. Most of these fuzzy patches are at the very top of my head.  Alopecia can affect more places than just your head.  I haven’t shaved my legs since before Christmas, and don't worry...they are bare.  Except for an annoying little patch on both of my knees! And I always forget about those two little patches, and when I start doing crunches at the gym I try to make a mental note to shave them but I always forget.  My arm hair is gone too, although I never had tons of hair on them before.  And, the most bizarre in my opinion, the hair on the left side of my upper lip has vanished!  That one is the most humourous because nobody would ever notice it. 

            Wikipedia also says that the bald spots might be “slightly painful”.  I would say that my head only hurts when I am getting the needles.  The needles.  I’m struggling dealing with them.  It’s just that they hurt so much.  And they may not fix anything permanently.  Whenever I stop getting them, any new hair could easily fall out again, leaving me back at square one.  Lotions and creams I can deal with, but the needles bug me.  Somehow I think the problem needs to be fixed internally.  If I can’t add steroids to my body for the rest of my life in order to have a full head of hair, then I want to figure out what to fix in my body to let the hair be normal.  The thing is, I don’t know where to start.  It’s just hard.  Sitting through these sessions where I get stuck with all these needles, and thinking that maybe they won’t even help in the long run.  In the big picture, they might be a waste of time.  A painful waste of time.  And even though I am getting these painful treatments, I don’t have too much to show for it.  I still wear Jimmy all the time.  Although I have patches growing back, they aren’t consistent.  I know everything takes time, but how much time is enough time to judge whether or not I have given this treatment a fair shot?  I know I am the judge of what treatment I want, but all I really want is to know where this alopecia of mine is going.  But it’s 100% unpredictable.  So much subconscious stress is caused by knowing that there is no way to know what will happen.  I just have to let it go.  But sometimes I feel that doing the shots is preventing me from letting it go.  I can’t read my own feelings!  

Dr. Google

Sometimes when I am bored, I google “Alopecia Areata Information.”  Just to see what comes up.  Although my smart computer has changed the colour of the webpages on the search list that I have previously visited, it is still amusing to try a new website once and a while.  Except that the most accurate websites are the ones I can’t understand.  I can read the intro paragraph, and a few sentences, but sooner or later I am lost.  The page has so much information on it, but it’s empty to me.  None of that info will help me.  It doesn’t make my day better knowing that the T cells in my skin are confused.  It only makes my mind more confused.  How does a cell become confused in the first place?  And why don’t any of the websites simplify the information?  It makes me feel dumb, not being able to explain my own condition.  As far as treatment goes, it’s less than satisfactory.  There is no “curative treatment available”.  Basically each alopecia areata victim becomes a science experiment.  Currently I am getting steroid needles in my head.  Shots in my head.  About thirty or forty needles a visit, every couple months.  It needs to be more frequent than that but that is all I can do right now.  They hurt.  The steroid shots I get in my head are supposed to get rid of the confused T cells, so that the hair can grow normally.  Except that the hair doesn’t really grow normally. And also, the hair might fall out if I ever stop doing the steroid injections. Oh, and one more thing.  I can’t do the injections for the rest of my life.  As an aside, I want to take a moment to talk about intuition.  When it comes to health, I believe in intuition a lot.  Sometimes its hard to technically know whats up, but usually you can feel it somehow.  In the fall I went to a health clinic when my hair was just starting to fall out.  The doctor wrote me a prescription for the medicine that is used in the steroid injections I am getting.  So I went out and got the medicine and returned a week later.  I showed him the medecine, and he proceeded to tell me that he did steroid injections for alopecia when he was in med school.  And by the looks of this guy, I think the textbooks have changed quite a bit since his med school days.  And so, trusting my intuition, I didn’t let him inject me.  But holy crap.  Just knowing that if I said yes, he probably would have done it, scares me so much.  We put so much trust in doctors.  I know they go through so much training, and learning, but still, I find it scary that I had to put up my guard.  And scary that he thought he had enough training to do it.  And maybe the shots would have been fine, I have no idea knowing how hard they are to do, or how much one needs to know in order to administer them.  All I know, is that whoever is going to be sticking needles in my head must have done it for more than just a few days back in med school.  Why?  Well you don’t need to go to med school to understand why.  Your noggin is important!  Ugh, I apologize for my conventional medicine bashing, just lately I have been a bit let down by the "system". Back to the hair growth.  While on an alopecia website scavenger hunt this morning, I found out that alopecia does not attack the little white hairs on your body.  This is confusing because, some of the hair that grows back on my head is white and fuzzy.  Whatever! So, the hair that’s growing back on my head is a mixture of peach fuzzy white hair and jet black, straight hair.  Okay it’s straight because it’s not long enough to be curly even if it wanted to be.  However, in good news, my hair sometimes flattens a bit to my head.  This means it is longer! How so? Well, because short buzz cuts don’t have enough length to flatten at all.  In bad news, my hair line is still non-existent.  Sounds like a weather report!  From the east we have small patches of white fuzz… haha :)