Dear wonderful friends and family,
It's unusual for me to pass along a mass email, unless it is a
frantically hyper update from my life, but this I found too close to
home to not discuss. Below is an email I received from the Alopecia
Areata support group network about a recent shooting of a teenager
with Alopecia Areata. Speculation has it that there was teasing about
his hairloss and he was standing up for himself before he was killed.
How do I even begin to describe what I feel about this young man's lost life?
A) I first resort to fear and deep sadness that this was a boy
verbally and finally attacked for a disease that is uncontrollable.
The disease I have. Does this mean I need to hide from the world, no.
But a chill went down my back when I, for the first time, in almost 8
years with Alopecia Areata, have heard the words "Alopecia Areata" and
"death" in the same sentence.
I spoke in my social psychology class of Death and Dying about the
connection of Alopecia Areata and loss, in the terms of the process of
grief, which I feel that I have experienced strongly, but now to
encounter a mirror in which my own mortality may be threatened because
of my difference, ohhh HELLLLLL NOOOO.... as in the great words by my
campers and catch phrases often used by my HFH family in NY this is
certainly a "beastin" situation and 100% "mad whack".
B) I felt dissappointed, because there is a larger point needing to be
addressed. This has been happening throughout time with ethnic
communities, religions, sexual identities, dissabilities, and classes.
The list continues, we as people are faced with struggle and the
noting of difference in some way. There has been violence against our
differences for too long. For example in recent events to list only a
few: the struggle to ban same sex marriages, racial stereotyping in
media, and hate groups that exist today. I am scared that I have been
blinded until it hit home for me. Are we only awakened to hate crimes
and violence, when it jeopordizes ourselves? I don't want to be like
that, I want to be an advocate for change, and most importantly hope
that there is something better out there for me than a stake in the
physicality of hair to prove my worth as a woman.
Lets broaden the spectrum and change the "me" mantra into a "we"
progression towards compassion and equality for our nation, and for
the planet filled with roaming differences.
C) I am frustrated and feel deflated by this, I am keeping face about
it because somewhere in the core of my belly I know I need to keep
walking: to keep wishing for a better day in which, not just the
Alopecia Areata community can identify there difference and go on
confidently living because of their uniqueness, but other groups as
well struggling with issues of personal/ public idenitity.
Sunday, December 6, 2009
Old News- But is present in contemporary climate- Needing Change
Tragic news came out of Knoxville, Tennessee, on Thursday, August 20,
2008, when 15-year-old Ryan McDonald was fatally shot by a fellow
student. Ryan had alopecia areata since age 3 and the motive for the
incident appeared to be strongly related to bullying and teasing over
the fact that Ryan was hairless and stood out as different.
The high school had been trying to crack down on fights and unruly
behavior amidst an atmosphere that was "a culture that lacked
discipline." Ryan was raised under tough circumstances and he was
described by those close to him as a "kindhearted kid", "always
happy", but with a tough exterior that compelled him to stand his
ground and handle himself verbally when teased or bullied - it was
pointed out that Ryan had been endlessly teased. He was
confrontational and had a chip on his shoulder – probably, not unlike
many of his fellow students and friends. However, violence of this
sort is never expected and this incident has sent shock waves through
his local community as well as the community of those of us who deal
with alopecia areata.
A remark by a classmate summed up much of the emotion, "I didn't know
him but I feel like I lost my best friend." Her world was violated.
Her sense of what is fair and just was turned around by a single
event. Her own security was threatened and the loss could have just
as easily involved her or a close friend. It points out how fragile
life is and how fragile our way-of-life can be - and, how deep this
hits home for many of us. For me, it brings back isolated feelings of
my adolescence and being singled out as different. It was a time of
not having an understanding of myself with alopecia areata and not
having the tools to deal with it. It also brings to mind all the many
children I have known with alopecia areata and how important it is to
me that they have every opportunity to achieve full potential.
What could have been done differently? There are no set formulas. We
deal with life circumstances in a variety of ways and all of them are
valid and all of them should lead to responsible emotions and actions.
All of us have tested the boundaries of teasing and bullying. Most
of us learned quickly that some light-hearted teasing is normal and
part of life. More importantly, we learned that being a bully crosses
the line and is not acceptable behavior. Awareness of the problem is
essential along with timely and thoughtful intervention.
How do we monitor? Be open with your child and give them the space to
respond and talk things over with you. Be observant of their
behavior, especially while interacting with friends. Be aware of
signs that might indicate bullying or other problems. A child may
become withdrawn or depressed. Social activities may be avoided if a
child feels threatened. School work and the ability to concentrate
often take a turn for the worse as a child becomes preoccupied with
insecurities. We need to not only be aware of the victims of bullying
but to be extra aware of someone who might be a bully. Besides those
things listed above, a bully is often defiant, has a difficult time
forming positive relationships, and manifests abusive tendencies.
What can we do? Again, there is no formula. First, be certain to set
a good example as a role model. Next, it takes both a watchful eye
and the capability to stand back and allow our kids to mature through
their own life experiences and develop self-esteem and maturity.
Where do we draw the line? As mentioned, everyone teases now and then
and good-natured teasing usually involves humor and a comfort level
with the person being teased. It ceases to be funny if the teasing is
persistent or is presented with a threatening or demeaning attitude.
A bully's weapons are verbal, psychological, and physical. Be aware
that boys usually bully in a different way than girls. Boys tend to
be confrontational in verbal and physical ways directly with the
victim. Girls tend to talk indirectly "bad mouth" and exclude the
victim from the group. Bullying tends to exhibit power and control.
Note that the perpetrator may also be under the stress of being
bullied by other kids or adults.
How do we protect our kids? We need to handle situations with
age-appropriate communication in order to guide both bully and victim
to a better understanding of themselves and others. Children need to
be aware that they have capabilities to deal with teasing and bullying
but that it is okay to seek the help of friends, parents, and other
trusted authority figures. We also must realize that children may not
know how to ask for help. Even when a child is going through a
critical situation and an adult tries to intervene, the child may find
it very uncomfortable to be open and choose to deny an experience or
concern. Overall, a child is better off to widen their circle of
support through caring friends and adults. The overwhelming goals for
both bully and victim is to come to a better understanding of
relationships, to learn skills of conflict resolution, and to improve
on techniques to problem-solve their own issues and relationships.
Many schools have resources within the district to effectively
confront and resolve these issues by encouraging a climate of respect
for self, for others, and for diversity. If you recognize a problem
and you are not receiving satisfactory results, be sure to broaden
your scope for seeking help from parents, teachers, and other
resources. The National Alopecia Areata Foundation is an excellent
resource for information specific to helping parents work with schools
in order to educate and provide students with straightforward
information about alopecia areata. Timely action often diffuses
problems before they get out of hand. Much more general information
is readily available and easy to find on the internet with regards to
teasing and bullying.
http://www.naaf.org/index.html National Alopecia Areata
Foundation – NAAF
2008, when 15-year-old Ryan McDonald was fatally shot by a fellow
student. Ryan had alopecia areata since age 3 and the motive for the
incident appeared to be strongly related to bullying and teasing over
the fact that Ryan was hairless and stood out as different.
The high school had been trying to crack down on fights and unruly
behavior amidst an atmosphere that was "a culture that lacked
discipline." Ryan was raised under tough circumstances and he was
described by those close to him as a "kindhearted kid", "always
happy", but with a tough exterior that compelled him to stand his
ground and handle himself verbally when teased or bullied - it was
pointed out that Ryan had been endlessly teased. He was
confrontational and had a chip on his shoulder – probably, not unlike
many of his fellow students and friends. However, violence of this
sort is never expected and this incident has sent shock waves through
his local community as well as the community of those of us who deal
with alopecia areata.
A remark by a classmate summed up much of the emotion, "I didn't know
him but I feel like I lost my best friend." Her world was violated.
Her sense of what is fair and just was turned around by a single
event. Her own security was threatened and the loss could have just
as easily involved her or a close friend. It points out how fragile
life is and how fragile our way-of-life can be - and, how deep this
hits home for many of us. For me, it brings back isolated feelings of
my adolescence and being singled out as different. It was a time of
not having an understanding of myself with alopecia areata and not
having the tools to deal with it. It also brings to mind all the many
children I have known with alopecia areata and how important it is to
me that they have every opportunity to achieve full potential.
What could have been done differently? There are no set formulas. We
deal with life circumstances in a variety of ways and all of them are
valid and all of them should lead to responsible emotions and actions.
All of us have tested the boundaries of teasing and bullying. Most
of us learned quickly that some light-hearted teasing is normal and
part of life. More importantly, we learned that being a bully crosses
the line and is not acceptable behavior. Awareness of the problem is
essential along with timely and thoughtful intervention.
How do we monitor? Be open with your child and give them the space to
respond and talk things over with you. Be observant of their
behavior, especially while interacting with friends. Be aware of
signs that might indicate bullying or other problems. A child may
become withdrawn or depressed. Social activities may be avoided if a
child feels threatened. School work and the ability to concentrate
often take a turn for the worse as a child becomes preoccupied with
insecurities. We need to not only be aware of the victims of bullying
but to be extra aware of someone who might be a bully. Besides those
things listed above, a bully is often defiant, has a difficult time
forming positive relationships, and manifests abusive tendencies.
What can we do? Again, there is no formula. First, be certain to set
a good example as a role model. Next, it takes both a watchful eye
and the capability to stand back and allow our kids to mature through
their own life experiences and develop self-esteem and maturity.
Where do we draw the line? As mentioned, everyone teases now and then
and good-natured teasing usually involves humor and a comfort level
with the person being teased. It ceases to be funny if the teasing is
persistent or is presented with a threatening or demeaning attitude.
A bully's weapons are verbal, psychological, and physical. Be aware
that boys usually bully in a different way than girls. Boys tend to
be confrontational in verbal and physical ways directly with the
victim. Girls tend to talk indirectly "bad mouth" and exclude the
victim from the group. Bullying tends to exhibit power and control.
Note that the perpetrator may also be under the stress of being
bullied by other kids or adults.
How do we protect our kids? We need to handle situations with
age-appropriate communication in order to guide both bully and victim
to a better understanding of themselves and others. Children need to
be aware that they have capabilities to deal with teasing and bullying
but that it is okay to seek the help of friends, parents, and other
trusted authority figures. We also must realize that children may not
know how to ask for help. Even when a child is going through a
critical situation and an adult tries to intervene, the child may find
it very uncomfortable to be open and choose to deny an experience or
concern. Overall, a child is better off to widen their circle of
support through caring friends and adults. The overwhelming goals for
both bully and victim is to come to a better understanding of
relationships, to learn skills of conflict resolution, and to improve
on techniques to problem-solve their own issues and relationships.
Many schools have resources within the district to effectively
confront and resolve these issues by encouraging a climate of respect
for self, for others, and for diversity. If you recognize a problem
and you are not receiving satisfactory results, be sure to broaden
your scope for seeking help from parents, teachers, and other
resources. The National Alopecia Areata Foundation is an excellent
resource for information specific to helping parents work with schools
in order to educate and provide students with straightforward
information about alopecia areata. Timely action often diffuses
problems before they get out of hand. Much more general information
is readily available and easy to find on the internet with regards to
teasing and bullying.
http://www.naaf.org/index.html National Alopecia Areata
Foundation – NAAF
Wednesday, November 25, 2009
Tuesday, November 24, 2009
Overcoming our fears
Last week, I was at open mic for my work and yet again I left feeling rejuvenated. When I went to the open mic I asked a woman if anyone was sittng next to her, she said go ahead, then I sat down and the woman sitting on the other side of the empty seat said "no no I don't want to sit next to you!"
Alright- yes she could have wanted an empty seat next to her, and the excuses can go on, for why she didn't want to sit next to me. But in all honesty- let's cut through the B.S.- She didn't want to sit next to me because I am a bald woman, an abnormal site.
Yes it is hard to say- she wasn't comfortable with me because of my hair loss. But let's be honesty- let's not put on a pretty face to a reality. That was how it was.
This has happened before, similar situations, before I was devastated- I wanted to be in bed for a week, I felt terrified of the public and what people thought of me. I felt like a monster that should be caged- a freak show that make people just too uncomfortable.
But this time it was different. For once- the depression didn't set in, the anxiety and fear of my monster identity, never came. And I was okay. I asked her if she would like me to move- she said no that's okay I will. She got up and moved. And a clear understanding of "she feels uncomfortable, she is the one who misunderstands, she can take care of her self" I realized it is her insecurity and uncomfortableness that she needs to deal with. I am here, I am not going to change, and I have to say "I am okay with who I am- in fact I have love for myself, my integrity, and my identity- socially, emotionally, spiritually, and physically.
And all of the sudden, it was such a real moment- the honesty was at an all time high- and I was okay. I survived and I didn't need to hide from the world, and put away who I was in order to accompany people's misunderstandings. I didn't need to cry about it- and it felt so good. It was real.
Alright- yes she could have wanted an empty seat next to her, and the excuses can go on, for why she didn't want to sit next to me. But in all honesty- let's cut through the B.S.- She didn't want to sit next to me because I am a bald woman, an abnormal site.
Yes it is hard to say- she wasn't comfortable with me because of my hair loss. But let's be honesty- let's not put on a pretty face to a reality. That was how it was.
This has happened before, similar situations, before I was devastated- I wanted to be in bed for a week, I felt terrified of the public and what people thought of me. I felt like a monster that should be caged- a freak show that make people just too uncomfortable.
But this time it was different. For once- the depression didn't set in, the anxiety and fear of my monster identity, never came. And I was okay. I asked her if she would like me to move- she said no that's okay I will. She got up and moved. And a clear understanding of "she feels uncomfortable, she is the one who misunderstands, she can take care of her self" I realized it is her insecurity and uncomfortableness that she needs to deal with. I am here, I am not going to change, and I have to say "I am okay with who I am- in fact I have love for myself, my integrity, and my identity- socially, emotionally, spiritually, and physically.
And all of the sudden, it was such a real moment- the honesty was at an all time high- and I was okay. I survived and I didn't need to hide from the world, and put away who I was in order to accompany people's misunderstandings. I didn't need to cry about it- and it felt so good. It was real.
Monday, November 9, 2009
Feeling it coming back.
As singing at the top of my lungs on the twisting turning road into the darkness. I felt a need to say- stay. Because my spirit was filled and I wanted it to stay. I told it not to leave. Stay. Stay spirit stay.
Sunday, November 8, 2009
Motherhood and Protection
Motherhood
This past week and weekend I realized something- I want to be a mother. And when I say mother- sure biological clock ticking. Tick tick tick. Umm let's maybe give that sometime. But I am talking about Mother in a greater way. I was babysitting, and I realized it is so important I think for anyone to be able to be a mother to something, to nurture and to support a growth process.
I have been thinking this especially in my gardening I am starting to get into. I had some tomatoes growing and although they were smaller then an eyeball, I grew them, and it was so neat to have ownership in that one bite tomato salad I was able to produce from my labor.
I think it is good to grow something, even if it is a spiritual sense. I have been wanting to be a mother lately in this sense of to nurture and grow something, whether it is a program at my work, work on my spirit, or have tiny tomatoes, it feels satisfying to know that I did that. Just like a little kindergartener looking at her work in the hall way, feeling accomplished. I did that. I did that. I did that.
Protection
I have been feeling a little stunted, speaking of growing. Those who love me want to protect me, from words others say about my hairloss. But in the long run, I am one who has to cope with awkward, maybe offensive statements. I realize that I am at this point that others love me so much, they see me as that child you need to protect and not let fall. I realize that yes for some odd reason, these bald cards is the hand I have been dealt. So let me play my cards, let me have moves (words) against me come, because in some weird way, I want to build the protection, awareness, and my need for safety in times of danger to be activated. I need to know when too much is too much from words of offense. And I need to stand up for myself, and not let others do that for me. My friends and family love me, and never want to see me hurt, but I need to fall in order to learn how to get back up and keep moving. My bareness will be a protection, and knowledge is power. And I will seek safety from those who love me when it is the right time.
This past week and weekend I realized something- I want to be a mother. And when I say mother- sure biological clock ticking. Tick tick tick. Umm let's maybe give that sometime. But I am talking about Mother in a greater way. I was babysitting, and I realized it is so important I think for anyone to be able to be a mother to something, to nurture and to support a growth process.
I have been thinking this especially in my gardening I am starting to get into. I had some tomatoes growing and although they were smaller then an eyeball, I grew them, and it was so neat to have ownership in that one bite tomato salad I was able to produce from my labor.
I think it is good to grow something, even if it is a spiritual sense. I have been wanting to be a mother lately in this sense of to nurture and grow something, whether it is a program at my work, work on my spirit, or have tiny tomatoes, it feels satisfying to know that I did that. Just like a little kindergartener looking at her work in the hall way, feeling accomplished. I did that. I did that. I did that.
Protection
I have been feeling a little stunted, speaking of growing. Those who love me want to protect me, from words others say about my hairloss. But in the long run, I am one who has to cope with awkward, maybe offensive statements. I realize that I am at this point that others love me so much, they see me as that child you need to protect and not let fall. I realize that yes for some odd reason, these bald cards is the hand I have been dealt. So let me play my cards, let me have moves (words) against me come, because in some weird way, I want to build the protection, awareness, and my need for safety in times of danger to be activated. I need to know when too much is too much from words of offense. And I need to stand up for myself, and not let others do that for me. My friends and family love me, and never want to see me hurt, but I need to fall in order to learn how to get back up and keep moving. My bareness will be a protection, and knowledge is power. And I will seek safety from those who love me when it is the right time.
Monday, November 2, 2009
Grief and a Woman's Voice
Yesterday was a big day for me. I facilitated a group on grief and loss at work. And I admit I was nervous, that the words may not come to help lead, that no one or too many would show up and I would not know how to handle it. But in all honesty it was great. I feel it wasn't anything jumping for joy monumentum moment but it really allowed me to see what I can do to create great things for a community. As I was thumbing through a book on grief, the back had resources and showed that you could get a certificate in grief counseling. And I was like ahh ha what a great experience, but I want more tools. And I realized with everything in life, you have to start somewhere and you don't know what wildfires of social change one can create, by just saying I tried.
-----------
In the early morning I had an interesting experience. Yet another comment about Alopecia. As I was getting ready for service. I had a man sit next to me and he stated "what the hell happened to you?" obviously, commenting on my hairloss. But I've gotten worse, so did my speal. He said "wow I am inappropriate" and I said "yes, but have gotten worse." He said I was beautiful and then it got weird. He leaned over and said "it makes me kind of horny". My jaw dropped and at that moment I knew this man wasn't all there. I stopped in my tracks and turned back to my reading, feeling violated and curious of what to say. I should of said- that is inappropriate and said no. But instead I turned away. I wish I had, but also- I did what I needed to do to feel safe. It is a violation of women to say sexually explicit words to a stranger and I no longer want to just turn away. It is a violation to make a woman to be a sexual object, something to be looked at and ignored of her voice, identity, and power she owns. It was a violation and it was an add to rape culture that exists in this world.
But I am a person that likes to find the hope in a story and here is what I think. I thank that man that he was blunt and it was a visual, literal example of all the work that still needs to be done. Sometimes I think what is my work? why do I want to do social work? And is it just silly to be voicing and dedicating time to things that may not get that high salary, or stability of a 401k? But I realized that my heart is in people. And seeing that man made visual evidence that these problems still exist and I don't want to ever give up on myself, my dreams, my work because of safety nets.
There is famous quotes that say "I will not rest until...." I felt that today. That I believe in social Justice and I had a reminder and a security found is in the Spirit for me. It encourages me and it gives me confidence to protect me from words of violence, cycles of violence, and words I can not control.
I realized you really can not control the things others say, but you can use that as evidence and power to push an end to that violence caused. I wish i had told that man he was being inappropriate but what is done is done and I hope to use that as power to move on, push ahead, and help with causes of social justice.
we shall overcome.
-----------
In the early morning I had an interesting experience. Yet another comment about Alopecia. As I was getting ready for service. I had a man sit next to me and he stated "what the hell happened to you?" obviously, commenting on my hairloss. But I've gotten worse, so did my speal. He said "wow I am inappropriate" and I said "yes, but have gotten worse." He said I was beautiful and then it got weird. He leaned over and said "it makes me kind of horny". My jaw dropped and at that moment I knew this man wasn't all there. I stopped in my tracks and turned back to my reading, feeling violated and curious of what to say. I should of said- that is inappropriate and said no. But instead I turned away. I wish I had, but also- I did what I needed to do to feel safe. It is a violation of women to say sexually explicit words to a stranger and I no longer want to just turn away. It is a violation to make a woman to be a sexual object, something to be looked at and ignored of her voice, identity, and power she owns. It was a violation and it was an add to rape culture that exists in this world.
But I am a person that likes to find the hope in a story and here is what I think. I thank that man that he was blunt and it was a visual, literal example of all the work that still needs to be done. Sometimes I think what is my work? why do I want to do social work? And is it just silly to be voicing and dedicating time to things that may not get that high salary, or stability of a 401k? But I realized that my heart is in people. And seeing that man made visual evidence that these problems still exist and I don't want to ever give up on myself, my dreams, my work because of safety nets.
There is famous quotes that say "I will not rest until...." I felt that today. That I believe in social Justice and I had a reminder and a security found is in the Spirit for me. It encourages me and it gives me confidence to protect me from words of violence, cycles of violence, and words I can not control.
I realized you really can not control the things others say, but you can use that as evidence and power to push an end to that violence caused. I wish i had told that man he was being inappropriate but what is done is done and I hope to use that as power to move on, push ahead, and help with causes of social justice.
we shall overcome.
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