Alopecia World
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Wanting my family to be proud of me and not be a shut in
My boys are 18, 22, 24. I am 42. Yep, I was a young mom.
Last night I went out without my wig for the first time in 17 years. I am for the most part a shut in.
I have hidden myself from the world because of my shame.
I get panic attacks when I go outside.
But I have got better.
In the past I could only get out if it was about my sons. Doctors and so on.
Now that two live on there own i am scared. I am scared I will be a complete shut in when the youngest moves out.
Which I do not know when because he is special needs. An other blog there with the stress of it all.
But last night for the first time in 17 years I went out without my wig. To my middle sons race.
I was thrilled when I showed my neighbor / sons cousin my hair. She was very happy. Never seeing me withut a wig.
She went on about my cute pony tail.
I went to our gas station. I know everyone there. They were thrilled for me. Leaving the station there was a friend of 10 years. He was very proud of me. He is special needs. Has had part of his brain removed do to cancer as a child.
He has a brace on his leg and one on his hand. He walks daily in town. No one cares about it nor reacts. He smilled at me and said how great I must feel.
My boyfriend comes to drive with me to the races. He says nothing. I said in the car why did you not. He says your the same person. I was so mad deep inside. I wanted him to be proud of me. I guess he does not understand how big this was to me. Or maybe he thought I looked bad and did want to say anything? I do not know. We are seeing each other for 5 years almost and no one else. It is a strange relationship. More like best friends. i still could not read him.
Nor him reading my feelings. I guess he was not sure what to say.
I get to the race and show my son. He was like OK. I asked if he liked my hair. He said it is fine or something like that.
No emotion either way. But he is getting ready for a race.
I do not know what i expected. Lol maybe fireworks in my head.
No one saw it as a big deal. But it was to me. I wanted my sons to be proud of me. I called one and told him i was heading out the door without the wig to his brothers race. He said oh ok. Have fun and what time are you leaving. And is TJ there now. Hmmm, nothing from him either. No congrats.
Either they all love me and just do not care what i do with my hair. Or they just do not care? That one can not be true. But I feel they just do not understand. They grew up with me not having hair or having it a bit. They did not see me crying about it. But I am sure they saw me not going places because of it. And my anger about it.
I guess i just wanted a pat on the back from those who love me the most. Maybe they just do not know what to say?
Today i am proud i did go out last night.
It wont be long and I will lose it again. I feel the pain in my scalp. I know this feeling all to well.
It hurts me inside and out.
I have to figure out how to keep from getting depressed over it.
I think i just need to celebrate some how.
It wont be with my kids. The youngest is at his dads in an other state for a few more weeks.
Time for me to grow up I guess and enjoy me for me by myself.
Last night I went out without my wig for the first time in 17 years. I am for the most part a shut in.
I have hidden myself from the world because of my shame.
I get panic attacks when I go outside.
But I have got better.
In the past I could only get out if it was about my sons. Doctors and so on.
Now that two live on there own i am scared. I am scared I will be a complete shut in when the youngest moves out.
Which I do not know when because he is special needs. An other blog there with the stress of it all.
But last night for the first time in 17 years I went out without my wig. To my middle sons race.
I was thrilled when I showed my neighbor / sons cousin my hair. She was very happy. Never seeing me withut a wig.
She went on about my cute pony tail.
I went to our gas station. I know everyone there. They were thrilled for me. Leaving the station there was a friend of 10 years. He was very proud of me. He is special needs. Has had part of his brain removed do to cancer as a child.
He has a brace on his leg and one on his hand. He walks daily in town. No one cares about it nor reacts. He smilled at me and said how great I must feel.
My boyfriend comes to drive with me to the races. He says nothing. I said in the car why did you not. He says your the same person. I was so mad deep inside. I wanted him to be proud of me. I guess he does not understand how big this was to me. Or maybe he thought I looked bad and did want to say anything? I do not know. We are seeing each other for 5 years almost and no one else. It is a strange relationship. More like best friends. i still could not read him.
Nor him reading my feelings. I guess he was not sure what to say.
I get to the race and show my son. He was like OK. I asked if he liked my hair. He said it is fine or something like that.
No emotion either way. But he is getting ready for a race.
I do not know what i expected. Lol maybe fireworks in my head.
No one saw it as a big deal. But it was to me. I wanted my sons to be proud of me. I called one and told him i was heading out the door without the wig to his brothers race. He said oh ok. Have fun and what time are you leaving. And is TJ there now. Hmmm, nothing from him either. No congrats.
Either they all love me and just do not care what i do with my hair. Or they just do not care? That one can not be true. But I feel they just do not understand. They grew up with me not having hair or having it a bit. They did not see me crying about it. But I am sure they saw me not going places because of it. And my anger about it.
I guess i just wanted a pat on the back from those who love me the most. Maybe they just do not know what to say?
Today i am proud i did go out last night.
It wont be long and I will lose it again. I feel the pain in my scalp. I know this feeling all to well.
It hurts me inside and out.
I have to figure out how to keep from getting depressed over it.
I think i just need to celebrate some how.
It wont be with my kids. The youngest is at his dads in an other state for a few more weeks.
Time for me to grow up I guess and enjoy me for me by myself.
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Comment by sharon levers on June 28, 2009 at 4:36pm
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well done you keep being brave and keep smiling you only get one life and you have to make the most of it hang on in there
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Comment by Tallgirl on June 29, 2009 at 12:47am
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I once heard that either Fritz Perls or Carl Jung or someone like that said to interpret a dream, put "I" or "me" in for every noun in what you are telling. Even for "Chair." Now, after you do that to the above paragraphs, reread your blog and find out who you REALLY want to convince to be proud of you. It can get very revealing. People are most concerned about themselves: Will I win the race? Will I say the right thing to her to not offend her? Will she be mad at me? Will I be more loved if I stay out of it? Where did I leave my keys?....to the point of being oblivious to what or even asking what you MIGHT possibly be feeling. People have motives of their own for just about everything. I wouldn't be so hard on them...they are just being people. Male people. Male people without alopecia. Male people of the ages they are. Hey, I don't EVER go out in public "without" since some students harrassed me after I tried to reveal for 2 minutes in a class about 15 years ago. Why not pat yourself on the back for bravery, try something new every day, try on ways to soothe self, and forgive the oblivious people for just being them...or young...or male...or haired? Congrats usually go to those who accomplish something over a long duration...something seen or tangible, as in sports or peformances. Not everyone sees inner change, bravery, etc. as something deserving attention, especially if they can't measure up to those traits of that depth themselves. You may need to tell us or another female!
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Comment by Mary on June 29, 2009 at 11:34am
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Congratulations, Char!
My brother - my only sibling and only living blood relative - was very unsupportive when I lost my hair in Jan. 08. He lives in another state and we haven't seen each other since then. He refused and still refuses to look at photos or my YouTube videos of me bald. I got no words of support, just silence. When I finally confronted him on the phone about his lack of support, his explanation was that it was just too painful for HIM to see me like this!
So, I asked him if he'd rather see me dying from cancer, or in a wheelchair due to a DISABLING disease. I told him I have a disease, and it sucks, but fortunately it ONLY took my hair. This seemed to finally get through to him, though he still won't look at my videos.
You deserve to be comfortable. You SHOULD be very proud of yourself. Just be yourself and carry on.
Mary
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Comment by Joshua on June 29, 2009 at 10:00pm
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Hi Char,
I strongly agree that probably the people that love you most just do not know what to say. As you said it, they just couldn't understand. I can imagine that because none of school friends or family members joined in whatsoever kind of alopecia support or group.
Initially, I thought and concluded that my family and school friends are not supportive enough but lately I am convinced to believe that they do not understand because they have little idea of what's happening in an alopecian's mind.
Alopecia support like AW has become a huge part of my life, my decisions, my emotions revolves around it. Without the understanding of alopecia from my family and friends around me, I often feel that I have been splitted apart (Not spilt identity...lol).
Your decision of going out without a wig is praise-worthy, a huge milestone in your alopecia journey. It was also a huge decision for me when I decided to shave my hair off and go out without a baseball cap on, when I made that decision, I was getting minimal positive responses from it (this is about 5 years ago).
I believe the alopecia journey is a sacred journey in life, when the society continue to see things outside in, we progress more into looking things inside out. Just as alopecians is the minority in the society, only a small fraction of people really look at things from the inside out.
As also commented by Tallgirl, male responses...lol. Don't expect much...lol...but there is no doubt that I'm a sensitive person especially have been dealing with alopecia for some time.
No worries, if your family understands more about alopecia awareness and support, I GUARANTEE that they will be just as proud of you as we are here or may be more!
Well done! Sending you a virtual high-five!
God bless.
jt
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Comment by Char on June 30, 2009 at 3:59pm
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Thank you all. I am in tears.
I am so glad I came to this site. I am getting feedback I needed and am learning so much. Today was a bad day. I looked in the mirror and wanted to run away. Maybe like Michael Jacksons song The Man in the Mirror. I need to change how and what I do with this disease.
My hair was sticking straight out. The bald spots showing more then ever. I looked like Bozo the Clown. My face swollen from allergies to meds I am on. The pain from fibromyalgia and arthritis is getting me down.
I took a pain pill. I hate those. I hate having to take them. I feel weak when I do. I hate my wigs some days and hate this disease. There are days i just want to give in. But others I am happy I have it. and want to shout it out that i do and in hope others will understand the emotional pain. Heck my scalp hurts bad some days. I just wish people could understand what happens inside and out when you have this. I am rambling sorry.
Thanks again for the high fives and such it means alot.
I hope i can get to my happy self again soon. So, many around me think I am a rock. But I am not. I hide it from them all.
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Char, in case you didn't see it, you might find comfort in the words of Michael J. Fox from an interview recently. It really helped me put my situation in perspective. I posted it in a blog here:
http://www.alopeciaworld.net/profiles/blogs/inspirational-words-from
My friends tell me I'm "brave". People think I'm a rock, too. But, I'm not. I have a chronic pain problem, so I know how hard that can be, and I hate not having my hair. But, I'm just trying to take it a day at a time. That's all we can do.
Mary
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