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!