WEGO Health

Ellen Schnakenberg

Hair loss and migraines

There are lessons to be learned in everything that we do and in everything that we experience. Sometimes the lessons are learned by us, and sometimes they are taught by us and learned by those around us. Sometimes it's both.

This post is personal and given as a response to those who have written me online and off about my hair loss. (LINK)

All my life, my hair has been my "thing". When a hand full of l-o-n-g blonde tresses came out one day after beginning a new migraine preventive, my heart sank to the floor. Unfortunately, it didn't stop there.

Soon my daughter was wordlessly reaching around to position my hair to cover bald patches that were beginning to show up almost daily. My husband quit complaining about pulling hair out of the drain, because it went from a monthly ritual to a daily one, and he knew that it hurt.

When I began the medicine that had earlier been removed from the list of potentials, I did it knowing that there was a good chance I would have some hair loss. I had suffered some loss because of metabolic issues, so I thought I was ready. Knowing however, and experiencing are two entirely different creatures.

I imagined myself at its worst, asking my good friend (a hairdresser) to, with great ceremony and much fun, shave my head bare, then covering up with colorful bandanas and hats that didn't try to hide what was happening to me, but instead revel in the excuse for being playful and fun in the face of something that was trying to control my life. I'd buy bright colored wigs and wear them in public and smile at those who stared. My master plan would give me the control, not my migraine attacks.

The best laid plans are often laid waste in the presence of reality.

As a child my hair was cut short. Very short. It was shorter than nearly every boy I knew in a time when girls wore their hair long and straight, and boys just plain long. I dreamed of having long hair.

I was mercilessly teased because of my hair. I went thru a period of about 2 years where calling it a bad hair "stage" would have been the understatement of the century. Family called me "the wicked witch of the west". New teachers at school thought I was a boy and called me Allen. An elderly neighbor and wonderful friend down the road called me "the little blonde boy" because he couldn't remember that he used to call me Allen. He died with fond memories of "the little blonde boy" and never knew I was an Ellen.

I learned the importance of being who you are vs. the person people think you are, and I learned and lived humility.

Those of us who grew up "not beautiful" never quite get over being unacceptable. We live through it.

When finally allowed to grow my hair long I did it in abundance. Because of health issues, it was thin, but what was once straight as a stick became naturally curly and with careful arranging, appeared even to be thick.

My hair changed the ugly duckling into the swan. People every day told me how beautiful it was and asked if they could touch it. (no kidding) My hair became the thing by which all people identified me. If they didn't know me, I was "the girl with the hair" and everyone knew who they were talking about. If I wanted to go incognito, combing it straight and putting it into a pony tail would fool even my closest friends for at least minutes at a time. I modeled hair and even did a TV commercial for a hair studio. Inside I knew I was still the same little girl who people sneered at.

Time warp to the present and that hand full of hair I stood holding. I shouldn't have been shocked, but I was.

I thought I was ready.

I wasn't.

I gave myself the time I needed to grieve over my loss, but I couldn't. I think it was shock over the fact that I felt hurt..

Migraine is an invisible illness, but no longer. It had taken from me many of the most important parts of who I was, but at least I always appeared on the outside to be the same.. the glittery paper was still intact.

No longer.

My first trip to my friend's salon for my first haircut was traumatic. I thought I was over it. I thought it would be fun.

I didn't cry outright, but I did shed a couple of tears which for me was monumental. She spoke of others she had helped after hours, and offered to do me after hours as well. I declined. She did a great job of covering up my "issues".

I got thru that day and those to follow. I did finally get to the point where I was ready for those bandanas and hats and fun colored wigs, but the medicine didn't help me and it was stopped.

My new plan is to get my photo taken with my horses as I have always dreamed. Long flowing manes and long flowing tresses together, me and the other loves of my life. Then I'll have it cut so the shorter hair filling in the bald patches will fit in. My husband has asked that I leave it long. We'll see.

My lessons were many. Well, it was more than that.

I learned humility again. Not the "okay I know I'm not God's greatest gift to the world" kind of humility, but the kind that creates random acts of kindness and the true desire to be unnoticed, and remembered that it is what you know about yourself that matters, not what others think they know about you. I am stronger than I thought I was, and had the chance to teach my family that we should never underestimate ourselves-- we are much more powerful than we think we are. I am almost as strong as my children think I am.

I learned that hair is just hair. Being bald is not the same as being naked, tho it feels much the same.

I learned that I can do whatever I have to do to get rid of my migraine attacks. I can even go bald and still be 'okay'. In the grand scheme of things, people will not remember me for my hair, I hope they remember me because I am someone who loved with her whole soul, and cared with her whole heart.

Would I do it again?

The answer is yes. It was the right thing for me to do. For me. I may be faced with it again, and I will always choose the potential to help my migraine attacks over the glittery paper that covers the package I present to the rest of the world...

...every time.

Tags: baldness, hair, headache, humility, migraine, personal, preventative, preventive, strength

2 Comments

Paula Comment by Paula on May 15, 2008 at 5:07pm
Ellen - thank you for sharing your story. I couldn't help but be reminded of my mom and how much losing her hair after taking chemo bothered her. Like you her hair was beautiful, long and blonde. I could spot her in a store a mile away just from the color of her hair (it was almost a whitish blonde). Whether it sounds vain or not losing her hair was very difficult for her. I remember the day that she called me crying because she was going to have to get a wig.

It was very hard for me the first time I saw my mom with no hair. Up until that point I had been living in denial about my mom's cancer... it was very hard to come to terms with. After I saw her bald with a little bandanna there was no more denying what was happening to her.

She allowed herself to cry the day she buzzed all her hair off, and she cried the day she got her wig, but that was it. Like you she realized it was part of what she had to do to try and get better.. and in her case live long enough to see her grandchildren born.

Thank you for being so open about your experience Ellen. Whether this makes sense or not it put a smile on my face.
Ellen Schnakenberg Comment by Ellen Schnakenberg on May 21, 2008 at 1:47am
Paula- thank you for your response. It does mean so much, and I'm glad you wore that smile for a while...

Cheers to your beautiful Mom.

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