My name is Shirley Poirier. My story is not unlike any other in the sense that I probably make it out to be more
than what it really is. The emotions involved in writing it are more intense than its purpose. The nature of the
story is my struggle, or would be struggle to overcome my self imposed fears and reservations that I cling to. Some
of the story is told through journals and poems.
I guess it would be best for me to start at the beginning. I was born in a small town in Eastern Ontario by a seemingly middle
class couple. I had a toy filled nursery, a sister, and Turner Syndrome. I was born on November 11, 1970 at
8:29 P.M. I weighed 5 pounds and 3 ounces. I was diagnosed at birth, and not given a very promising prognosis.
My parents were told that I might not walk, and would more than likely be ‘retarded’. Thankfully my parents
stayed strong, and envisioned the best scenario instead of listening to the one they were given. I wonder sometimes
what might have happened if my Mom found out early enough to have an abortion. Would the Doctor have
recommended it?
What I recall from my childhood is the fact that my family was very protective of me, and kept my happy. I
believe this affected me in the sense that even as an adult, I tend to feel the need for pampering and acceptance. I
should explain why my parents felt compelled to guard me. Turner Syndrome has a variety of physical traits that
are part of the condition. I’ll get into the particulars of the Syndrome later. Because of these physical differences
my parents wanted to hide, or play down those differences so I wouldn’t be glared at if we were out in public.
I grew up like everybody else, for the most part. My schooling was unique for a while because I was mildly
dyslexic. In grade two I spent mornings in a special class to correct it. In grade school my best friend was also a
neighbor, so that allowed for enormous amounts of play time. Our vogue thing to do was to create massive
Barbie houses by out-lining them with string. My Father dabbles with carpentry, and made my sister and I
couches, chairs, and such from wood. My Mom would help him with the upholstery. High School was a
nightmare. I was terrified to take gym because of the change rooms. I begged my cardiologist to give me a note so
I would be exempt from it. He was such a nice man. He did it, but I had to promise not to become a couch potato.
My sister, Rita, was patient with me. She found it hard because our parents needed to give me so much attention,
but I believe she cared, and obviously still does. If she resented me, I know that‘s behind us. I heard that I was
extremely sick for the first six months of my life. I think it had something to do with my digestive system, either
not being able to eat, or just not wanting to. God I wish I had that problem now! Anyway, I understand why Rita
might have felt neglected when I was born. In a way I worshipped her. She had cool friends, she was tall, and
becoming very independent. Rita is also seven years older, reason enough for a pedestal I thought. I should also
admire the fact that she put up with me when we played together. I had this horrible habit of telling her what her
doll should be saying. I’d already have a story line in my head, along with the script. I think it just showed that I
had a very active imagination. Even so, it really used to ‘cheese’ her.
My Father was terrific. I would sneak downstairs after bedtime, sit on his lap and watch hockey with him. When
his team would score, he’d scream, which would make me jump then cry. My Mom would hear us, and send me
back to bed. I feel that my strength comes from my Father. Maybe it was because he didn’t want to believe that I
was different, but he never treated me that way. He taught me the importance of education, and that knowledge
holds a form of power. He knew I had intelligence, and made me use it.
Our Mother is the nurturing force in the family. She’s able to lick wounds a little easier than Dad. Every time I
mentioned doing this project, she’d get this nervous look on her face. I think she worries about me sharing all the
family secrets, and getting everybody angry with each other. My Mom tries to be there for us whenever we need
her, which is quite a bit. Rita and I swear the umbilical cords are still attached! If a week goes by without us
talking to each other, we wonder what we did wrong. Our Mom is a friend to us. We hang out, shop, and eat out
together. The more I’m able to talk to her about having Turner’s, the closer we are. The more feedback I get on
how she dealt with it, and what she felt, I understand her more. It helps me cope and feel more comfortable with
it. I love our talks. I need our talks. Not all families feel that’s important. Of course, we’re not the average
family. Sometimes I feel grateful for that.
The age difference between my parents (my Dad is over 10 years older than my Mom) has had a definite impact
on me. I have only had two serious relationships before I settled down with the man I married, and the men in
both of those relationships were at least four years older than me. I know now that I was looking for someone who
would take care of me, and protect me. I was looking for a father figure. I sense that’s what my Mom saw in my
Dad.
Since one of the purposes for writing this story is to educate, I should share some of the history of Turner
Syndrome. It was discovered in the late 1930’s by Dr. Henry Turner, hence the name. He was also one of the first
people to study it. We humans have 23 pairs of chromosomes including a pair of sex chromosomes. Women have
two X chromosomes, and men have 1 X and 1 Y. What happens with T.S. is one of the X chromosomes are non-
existent, or have been altered. This Syndrome affects roughly 1 in every 3000 females. The characteristic that is
always apparent is short stature. The average adult height is 4’8”. A teenager with T.S. will not develop
secondary sexual characteristics, such as menstruation, breast tissue and pubic hair. The Syndrome also makes
the woman infertile. With hormone therapy I’m able to menstruate, and things developed the way they should
have. My husband, Rob, says everything is in the right place anyway. The therapy starts between the ages of 10
and 12. The hormones add a slight touch of height as well. Unfortunately, the fertility problem is still present.
The two options are adoption or attempting the donor eggs procedure. Rob and I are still unsure about both.
During my 27 years of life, I’ve had 4 operations, and 3 were cosmetic. The first one was on my ears. I had
fairly low set ear-lobes, and the idea was to take a little off the bottom to shorten them up a little. Bad idea. The
operation was a disaster. I was 4 or 5, and only given a local anesthetic. That in itself was a big mistake. I felt
like I was being dissected. I had no idea what was going on, and responded by crying, kicking, and screaming.
I’m not even sure they were able to finish the procedure. The operation was redone successfully when I was 14 or
15. My Mom said the Doctor had a terrible attitude, and seemed to blame her for everything. My Mom confessed
to me once that for a very long time she kept wondering what she did to deserve everything she had to go through
with me. She said it took her years to realize it wasn’t her fault, Dad’s, or mine. An important point to make
about Turner’s is that neither the Father or Mother can be blamed for a T.S. birth. The loss or mutation of the X
chromosome is just a random happening with the sex cells during conception, nothing more.
I decided I wanted to do something about my webbed neck when I was about 12. Because I was older, the scars
are still visible, and probably always will be. I wasn’t expecting all the pain and the long recovery process. I was
fully informed about the procedure, but I was still too naive to fully comprehend. I wonder sometimes if I would
have gone through with it if I’d understood completely? Absolutely. I can recall sitting in the hospital bed when
the Doctor came to remove the bandages. Actually, he brought three other nurses with him. I believe they knew
what I was in for, because they removed the girl next to me from the room, and the door was closed. Because the
bandages had been on for roughly three weeks, it felt like my head and shoulders had been vacuumed sealed.
When the seal was removed, there was pain. I again screamed and cried. I was so unbelievably scared. It hurt,
but that’s not entirely why I was crying. I’m not sure what was in the back of my mind, but pain wasn’t the most
prominent. It’s most likely a psychological block. I get those a lot. I do remember not wanting anyone to see me
until the second set of bandages came off. I spent in total, roughly 6 or 7 weeks completely isolated from my
friends. The operation was done during the summer at “CHEO”, so I didn’t have to worry about school. I know it
was the summer before I started high school. Eating and sleeping were difficult. Most nights I slept on a recliner
in the living room. The last dressing came off better than the first. Our shower didn’t work at the time, so I used
my grandmother’s. The shower felt wonderful. It was great to wash my hair and around my shoulders. I felt so
much lighter too after losing the weight of the bandages. I was laughing and crying all at once. Looking in the
mirror, and seeing a normally shaped neck was a rebirth of sorts for me. I felt free, and more like a human being.
All of a sudden, I wasn’t so different and alone.
As I mentioned before, a couple of years later, I wanted my ears pulled back and snipped a little. This was a
simpler operation, and easier on me, because this time I actually understood what would occur. It was funny
because I had 2 holes in each ear, and after the operation, I was back to wearing only 1 set of earrings.
In the spring of ‘89 there was a Turner’s Syndrome Conference in Ottawa Ontario. These conferences are held
so that families who are dealing with the Syndrome can share thoughts, and get some feedback and information on
what’s happening medically. My Mom and I decided it was time for us to learn more, and create a support system. It was an excellent experience, and one I’ll have for a long time. I learned that this wasn’t only
happening to me. Suddenly it was all right to have this Syndrome and acknowledge it. I no longer needed to hide
it. The Hotel we were staying at was attached to a shopping mall, and that proved to be a bonus. If the seminars
got too much for us to handle, we’d just go shopping. We did a lot of shopping. There was a main seminar where
Turner’s was fully explained, and the latest theories tossed around. The panel was made up of professionals who
had dedicated a lot of time into researching the Syndrome. My gynecologist was one of the speakers in the panel.
I was excited because his mentor, a Dr. from England, who had taught him, was a special guest. This man knew
his stuff. My Mom and I learned a lot, but it was honestly overwhelming. We didn’t prepare ourselves for the
things we discovered about each other. We both held back because the emotions were so strong and new. Neither
one of us was sure what we were suppose to do with them.
It’s difficult to describe what I went through during puberty. I believe I went through it without really knowing it.
I never had an acne problem, and I never thought about sex until I was roughly 17. I wasn’t freaked out about
growing breasts or menstruating, but the fact I needed to take pills to do it was unsettling. It sounds sad now, but I
never had the normal concerns about becoming a woman, because I never thought I would become one. I struggle
with that everyday. I think when a teenage girl realizes that her body can create another human being, something
happens. I think it might instill the idea of responsibility and maturity. That wasn’t there for me, because right
from becoming a teenager I knew that I couldn’t conceive a child. I’m sure there is more to being a woman than
just being able to have a baby, but one has to admit it is a major part.
During high school, I wasn’t really concerned with that aspect of my future, so I never gave it a lot of thought.
Marriage and children weren’t strong dreams in my mind. As I got older, and eventually started dating, I found
myself thinking about those things a lot more. There is a certain emptiness in knowing that you won’t raise a
family. I honestly believe that I don’t want to have a child right now, but for some reason I feel it’s my duty to
want one. Maybe it’s because it’s a decision I can’t make on my own. The choice was already made for me. I
know my anger and resentment comes from the fact that I’ll never have the option. Rob is sensitive to that fact,
and he comforts me when I get overwhelmed with everything. He’s learned my ‘moods’, and acts accordingly.
There are some things that no matter how much empathy you can generate, it’s still impossible to understand.
You just can’t say to a cancer or aids victim: “I know how you feel.” Unless you have cancer or aids, you don’t
know how that person feels. I don’t wish to sound cold, I guess it’s just a case of wishing to express the
encouragement of active listening. You can hear what people say, but it takes more effort to really listen to the
emotions being expressed in those words. This is where the T.S. Society has been wonderful. I almost instantly
felt like I had known these women for years. They are very willing to listen, and be there to lend the support
that’s needed. Obviously, these women realize a great deal of the struggles, and barriers that are faced by all
women with Turner’s. Kudos ladies. Kudos.
I hate days where I don’t have people around me. I usually end up walking around the apartment aimlessly. I
take time to stare out the window and watch everybody getting on with their lives, then it’s back to just walking
around. It’s on these days where I get really philosophical about my own life. I’ve developed an attitude, and I’m
afraid it’s not a very positive one. It’s wrong to feel that you’re owed something. It’s even worse to try to collect
what you think should be yours. Do I feel the world owes me? Sometimes I feel I should get things handed to me
on a silver platter. I remind myself that there is no perfect life. I’m afraid of becoming resentful, selfish, and
demanding. The people who see this try not to accommodate me. I value that they care enough about me to tell
me where to go. I don’t want people saying “all right, I feel sorry for her, I’ll do this for her.” I never ask for
pity. Servitude yes, pity no.
I wonder if a lot of women with T.S. feel younger than they really are? I know I deal with that a lot. Because of
the short stature, it’s probably natural for people to want to treat me differently. I know I respond to that by
sometimes acting younger. I learned in Psychology that there are 3 ways that people relate to other people: adult to
adult, child to adult, and adult to child. Being 26, I naturally want to deal with adults on an adult to adult basis,
but sometimes I feel I’m treated like someone who needs protection and guidance. I realize that some of my
actions play a part in how people might see me. I know I don’t always act as mature as I could or should. I
suppose it’s a which happened first sort of circumstance. It can be a vicious circle, and a tough one to escape. I
tend to remind myself of my age, and the fact that I’m a women if I’m in an intimidating situation. I have a
perfect example of me not dealing with someone on an adult to adult level. I was at my hairdresser’s on a
seemingly normal day, and one of her friends stopped by to see her. Without even acknowledging me, she turned
to my hairdresser’s and said “Why is it whenever I come in here, you’re doing a kids hair?” It seemed innocent
enough, but being 22 at the time, I questioned her eye sight. My hairdresser looked at me, then politely proceeded
to explain to her friend that I wasn’t a child. Her friend then apologized. I wanted to say “Well, I’m sure you feel
pretty stupid right now, so no harm done.” What I said was, “That’s all right.” I had a brilliant come back, and
all that came out of my thin little lips was “all right”!? I seldom act on what I think simultaneously. I suppose for
the rest of the world that’s a good thing.
I’m not a very trusting person. If I do get close to someone, it’s because I’ve discovered there’s something I can
learn from them. I don’t just hang around people who are fun to be with, they have to hit a nerve with me. I hold
on to my secrets tightly, and reveal them sparingly, and for a price. When I confide in someone, it’s only after a
strong bond has been established. This kind of trust takes a long time to build. I test people by telling them fairly
trivial stuff first, then if they pass, I can move on to something more personal. I was taught growing up, that
people will use other people if they can get away with it. I guess the fact that I grew up in the country has
something to do with it. Everybody knew everybody’s business. You didn’t have a secret unless you didn’t speak.
I fear being vulnerable, so I’ve constructed a wall around myself to keep the bad people out. Sometimes you can
accidentally keep the good people away too. My frequent uneasiness has built a barrier between me and self
assurance. My performance at work, relationship with Rob, and family keep getting harder and harder to cope
with. Being neurotic isn’t a word that most people want to associate with themselves, but I suppose I do have
these tendencies. I don’t know what area of my life to use to regain control. Do I build up my confidence at work,
or do I make my marriage the best of Earth? Maybe I could finally become responsible to a degree so that my
parents will be able to sleep at night.
One of my bosses once told me that I read too much into things, and now I understand what he was telling me.
I’m always on the defensive. I generally feel that people have a hidden agenda when they interact with me. I feel
that if I can remain of the defensive, I will be able to avoid any personal attack. Close family and friends say I can
be overly sensitive. My emotions are right near the surface. I seem to have this heighten awareness of emotional
pain. It’s almost like a telepathic power. Understanding physical pain isn’t as easy, but emotional pain rips right
through me. This might be the reason why I have trouble with assertiveness. I don’t like confrontation. I want
that gift of saying what I feel, and not being afraid to face the consequences. I know if I could just say what I feel,
I’d be more easily understood. Rob tells me that my writing says more about me that when he just tries to talk to
me about personal things. This is an easier way to express myself.
I’ve been finding that the more I comfort people, the more I could use it myself. I love being able to help someone, but it’s sometimes tough to find empathy when I need it in return. An old high school friend phoned me
remembering it was my birthday. That part was really sweet. She told me that she was depressed, so I asked
her to talk to me about it. It seemed like the perfect opportunity to use my psyche training. Anyway, things were
fine until she explained her dilemma. She wants another baby, and her husband doesn’t. She has two beautiful
girls, and she wants another baby. I could relate to the fact that at the end of each month when I get my period
I cry. Bleeding is just further confirmation that I’ll never have children. My friend needed me to understand how
having two children isn’t enough. Help! I don’t know how to do that. The best I could do was suggest that she
concentrate on her girls. By being more involved with them, that feeling of needing another child might subside.
This may also cause her to become more resentful and withdrawn, and possibly lead to a deeper depression. But
hey, the advise was free! Honestly, I do see where I’m partially responsible too. If I expect people to be sensitive
to me, I need to share the things that I consider to be sensitive issues for me. My feelings are as legitimate as
everybody else’s, and I can own up to those feelings.
My parents let me grow up without too much trouble or interference. I owe them a lot. With all the complications
I had to deal with as a baby, and the fact that even now I’m somewhat needy. I know my parents handled
everything the best way they could. They endured, and continued to give me what I needed. I’m blessed, thanks.
I’ve learned maturity comes from caring and appreciating the good things around you. Unfortunately, there’s not
too much I give a shit about. My husband, immediate family, and my faith are the extent of my loyalties. I
suppose you could say I’m in a state of apathy. Now there is something more that let’s me feel proud: my writing.
Since I started this project, there’s been a strong sense of meaning in my life. Strange, but it seems like forever
that I’ve had this idea in my mind. Sharing my story is something I’ve always thought of doing. I am grateful that
it came to be.
I believe there’s an internal battle that takes place inside everyone. Respect, accomplishments, and intellect are
all things we humans crave, and sometimes even demand. For some people, this task is easily completed, but for
others it’s never attained. I guess that’s the chip I lug around on my shoulders. I can’t recall a time where I
haven’t felt that I didn’t need to prove myself. Wanting to be seen as someone with something to offer is common,
but because of my stature (or lack of it), I feel like I’ve had to surpass expectations in order to believe I’m capable.
Growing up I went by the assumption that no one expected anything from me. I don’t know when it happened, but
the self pity went away, and I found that my limitations are self imposed. I discovered I didn’t want those limitations anymore. I allowed myself to grow up, and become a woman - hear me roar!
Rob and I celebrated our fifth anniversary on August 27th, 1998. There was some cosmic happening that
occurred when we met. I almost instantly trusted him. I could tell him about the Syndrome, and knew that he
wouldn’t run away. Ten years ago, I don’t think I was imagining this. It’s something I never thought about. I was
the kind of child who felt they would live at home forever. I know my parents are happy that I found someone who
is good to me, cares, and respects me. We joke and say that the only reason we’re perfectly matched is because no
one else would have us. It hasn’t always been easy. We have our little tiffs like all couples. We are dealing with
something a little different though because of me having T.S. We know that we are going to see each other
through any situation. Rob & I feel we give to each other something that would otherwise be missing. He’d
never want me to get too personal, but I believe I know how he feels. He’s learned that it’s important to care for
someone, and to now you’re cared for in return. I’ve learned about unconditional love. It doesn’t matter
what my thoughts are, I can share them. I’m not scared of who I am when I’m with him. I can share anything
without the fear of losing him. It’s ironic in a way. It’s because of his influence in my life, that I’ve become
independent and self respectful. I love him dearly, but I know I would be all right on my own.
I think it’s important for women with T.S. to know they fulfill their own needs. You don’t need someone else to
validate your importance. Rob supports me in my endeavors, but I know it’s my own desire that will motivate me
to achieving my dreams.
I put my need to nurture into two adopted cats. “Boo” was born on March 11, 1995. We’ve had him since April
of 1996. He is basically your typical fat cat, but with gorgeous white fur. “Sable” is the sophisticated female. She
is roughly six years old. Her Siamese features are a real contrast to Boo’s rotund body. Rob adores them almost as
much as I do. When you allow a butt to be 3 inches away from your face while you sleep, it’s love. I think a lot
about how I’ve been able to grow into a fairly together adult has to deal with my responsibility to Rob and the cats.
With Rob I’m forced to deal with him on an adult to adult level. I’m a woman to him, and his wife. The cats
teach me patience and nurturing. Sometimes I get a little overwhelmed. I think about my possible career choices,
all the decisions I never considered making are right in front of me now. When I realized that I was handling the
high school experience, it opened doors for me. I was suddenly seeing myself as a smart and capable person. I
could think about Colleges, and I did. I have a diploma in social services (behavioral sciences). I’m working on a
diploma in Accounting. I knew I could have a career, and even romantic involvement’s. I can take care of myself,
and make intelligent choices for myself. I deserve to live my life for me, and the things that are important to me,
namely my husband, family, and happiness.
If there is one last thing I get to ever say about what I have written, it is a favor I need to ask any parent or
guardian of a girl with Turner’s Syndrome. Please don’t hide them. Let them learn and experience life. They can
achieve as much, or even more than anyone else. Give them the opportunities to shine, and they will.
Thank you for reading, and I hope you have enjoyed it. I certainly have enjoyed writing it. From the bottom of
my heart, I thank you.
POEMS
JOURNALS
