I Don't Want a Cure for Alopecia

Now I understand this may be a little controversial, but I want to explain WHY. Why I believe money is better spent focused on curing ourselves of depression, anxiety, self-hate, low-self esteem, apprehension, and everything else that stops us from living our best lives.  

A cure gives us hope. Not to say there's no hope when it comes to Alopecia, but I believe it's false hope. It's like the light at the end of the tunnel: it's always there, but when will you reach the end? We don't know if there's a cure for Alopecia coming this lifetime, or the next. Yes- it's important we spend money on researching autoimmune diseases. Yes- we should definitely support the opportunities to find a cure.

But how does any of that help us right now? How does spending $50 of our hard-earned money help me right now? It doesn't. Granted, it's an investment into your future and blah blah blah, things that I can't argue. You're not wrong for wanting to donate cash to find answers for alopecia. I can't fault anyone for wanting something better for civilization it's something everyone should absolutely 100% do.

My argument lies here: how can we help ourselves right now? How can we better our lives right now? How does the possibility of a cure for Alopecia and the promise of growing our hair back help me right now?

We spend so much time, money and effort on trying to fix the future just right so that when we get there, we might be comfortable. But no one is focusing on how we're feeling right now- and we're ignoring signs that maybe, we should spend a little time on ourselves. People forget to take care of their bodies and minds, and to treat them with a little respect!

So here's a little snippet of my thoughts:

Comment, share, or let me know what you think!

Why I Don't Suffer from Alopecia

Why I Don't Suffer from Alopecia

When I created this video, a headline captured my attention and actually frustrated me. It triggered my mind about a lot of things, and how the headline is used for sympathy on a variety of issues. To gain readers, more dramatic titles and headlines are given to peak their interest. Grabbing them by sympathy, people feel compelled to feel bad for the subject of the story. Now, this is just how some journalism can go. I just hate being lumped into a misconception... I DO NOT SUFFER!

& I'm not alone in that category. Many women who have broken free from the wig feel better than they did before. It's a very liberating experience and I welcome anyone to try it. Would I wish Alopecia on anyone? Of course not... but to free yourself of the beauty expectations by choice, that's rewarding.

I encourage you to watch this video and think about what labels are in your life, and if there's something you'd like to change.

Our Deepest Fear

"It is our light not our darkness that most frightens us

Our deepest fear is not that we are inadequate.

Our deepest fear is that we are powerful beyond measure.

It is our light not our darkness that most frightens us.

We ask ourselves, who am I to be brilliant, gorgeous,

talented and fabulous?

Actually, who are you not to be?"

-- Marianne Williamson

 

Why A "Be Like Bill" Meme Infuriates Me

Why A "Be Like Bill" Meme Infuriates Me

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So the past few weeks I'm sure you've seen the "Be Like Bill" memes floating around Facebook. They're designed to be amusing, passive aggressively poking fun at some of the more annoying social media practices that individuals continually partake in. Initially, there was just a couple Bill images - often getting reposted several times.

Now, users can get their own "Be Like___" by simply entering their name and gender into a online form. Within a click of a button, they have their own meme with the frowned upon social norm tagged along with it. Although designed to give some sort of advice to the people unaware of their less-likened practices, the latest round of memes have become more aggressive, less passive. Which breaks down to this: an excuse to share memes that simply makes fun of others. This particular "Be Like___" came across my news feed this morning:

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For obvious reasons, this offends me. But to think about how many other people will see this who draw on their eyebrows because they've been taken by a wide rage of health conditions absolutely infuriates me. This latest round of memes have gone beyond social media habits, attacking someone's looks for their own amusement. Granted, the person who shared this had no intentions of ever hurting anyone, it's a pretty shallow image. Attacking aesthetics is always  the low of the low, and it's pretty clear these websites are running out of content.

This isn't the first meme that's bashed women and their eyebrows. This one is from last year, but still gets kicked around every now and again- offending most, if not every, Alopecian that sees it.

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I'm not sure why making fun of women's eyebrows has become popular, but it needs to end. Like, yesterday. Come to think about it, I take back my previous statement- I know exactly why there's a recent fascination with women's eyebrows. In early 2014, eyebrows became one thing: On Fleek. Which basically meant they were on point, looking good, and shaped beautifully. Women lusted after thicker, darker and more shapely eyebrows. No longer was the over-tweezed and thin eyebrow considered attractive anymore. (See: Cara Delevingne, Kardashians or anyone else on Buzzfeed's list of best celebrity brows.)

Side Note: Yes, this list exists. No, it wasn't remotely difficult to find. Are you surprised?

Since the eyebrow craze of 2014 has hit, women have been tattooing, coloring in or adding to their natural eyebrow look. Which has been great news for Alopecians- the line of eyebrow products that has come out of this craze has been wonderful! Youtube tutorials and demos means there is finally some online resources for those that struggle with drawing their eyebrows on every day. & When struggle became real for so many others, such as myself, not having eyebrows at all is okay too!

So when I see a meme, telling others how to behave in manner that they cannot help due to a health condition, naturally I lose my cool. I get it- they were funny at first. Everyone knows someone that has annoying social media habits (and if you don't know anyone, you might be that someone). But, can we PLEASE leave eyebrows out of this? They have one place and one place only: above one's eyes.

Thanks.

Things Not to Say to an Alopecian

Things Not to Say to an Alopecian

Had a pretty fun time making this video- some really interesting responses but overall, hopefully tackled some of the more frustrating things that happen to people with alopecia.

I really do hope that these videos help other people in the long run- to inspire others to make their own videos, or pursue their dreams, whatever that may be.

For me, I'm not certain I know what's in store for me. Every month it seems like I have a new opportunity, it's the figuring out which one is right for me part that's tricky!

10 Facts About Me

Good Morning Beautiful People, Earlier this week, I felt froggy and decided to get out the old camera and record another YouTube video. After I began editing, I realized I was fairly out of practice because the audio is ever so slightly off for the whole video. And rather than go back and fix each individual clip, I just decided to get the video posted instead- so bear with me on it! Initially when I recorded some last year, I had full intentions of keeping up with them on a regular basis. Instead, life got in the way (yet again!) and I didn't post for about a year.

This time, as part of my early new year's resolution, I promise to follow up on my projects. I have a terrible habit of doing something and never completing it. So I plan to fix that, and go after all my projects/passions in 2016.

This video is based loosely off of some others I've seen on YouTube, as a sort of introduction of who I am. To give you guys (viewers) some indication of why I'm quirky, what I love and other odds and ends about me. I hope you take the time to watch and enjoy, please feel free to share.

(#10 fact is probably my favorite as it speaks to my new year's resolution as well. I want to inspire other people. Plain and simple!)

Anyways, here it is! 

& I Choose Happiness

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I posted this a couple days ago on Facebook and someone's comment really struck me. She said, "Does it have to be either/or?"

Her thought forced me to consider sadness, which I strive hard to avoid at all cost. Losing my hair resulted in a lot of repressed memories and emotions, both that ultimately result in sadness. It's always been my motto to look forward and move on, to never dwell on things you can't change. I couldn't change the fact that my hair was falling out- it was in my DNA, something out of my control. I focused on things I could control: school, soccer, and breakfast. (I would never wake up early enough to eat breakfast... to this day, I am not a natural early riser.) By focusing my emotions on physical things, I avoided dealing with the depression I felt from Alopecia. Junior year of high school was probably the toughest on me. Even though I was getting better grades than ever before and playing on several soccer teams, I was so disconnected emotionally that I don't have any fond memories of it. By isolating myself from my entire class, I avoided all types of interaction that could hurt me (or help me). Primarily, I ate lunch in my car almost every day. I couldn't face the social awkwardness of finding a table full of people who would either stare or want to ask questions about my hair loss. I kept everything so vague that, all my classmates knew was that I had lost my hair but didn't know why, how or to what extent.

Eventually, I told enough people what was going on that, at a school our size, word would travel fast. & it did, which I was grateful for. I didn't have to explain myself everyday- it was a no questions asked kind of situation. However, by senior year I realized that by keeping people at such a distance, I had alienated myself to a point where people were afraid to talk to me, in fear of offending or upsetting me. I began to use my alopecia as a talking point, as a way to let people in again slowly but surely. By educating them to exactly what was going on, they were able to understand and empathize rather than sympathize... something I had been dreading for so long: sympathy.

Sadness is never something people want to face, but is necessary for emotionally moving on. Mourning is an important step of the grieving process, a step that I had tried to avoid altogether which landed me on a social island by myself... dealing with something alone is always harder than with others that you love.

To this day, I still don't believe in dwelling on what you've lost- it's already lost. Yes- I lost all my hair to Alopecia. But rather than be constantly sad about it every day, I choose happiness. I choose to love this life, rather than be ashamed of what I have left. I choose to celebrate Alopecia and what it's given me. The years ahead of me are not affected by my hair loss, they're still coming whether I like it or not. So I might as well enjoy them with every ounce of emotion I have, happy or sad.

The Importance of Being Natural

The Importance of Being Natural

...But most importantly, it requires self love. You must love you, for who you are with or without hair, to release your true self. If you don't embrace your insecurities, no one else will feel comfortable to embrace them either.

The Alopecia Project, PeerSpring

Recently, I was approached by PeerSpring to create a project on their site. Not knowing that I was getting myself into, of course I said YES! After doing a little more research, I realized this site has been used for educational based movements, i.e.: lowering carbon footprints, utilizing technology in schools for children ins schools to use as a resource. My focus was on social movements, and how challenging they can be. And that sat with me for a minute... social movements. What would that be? I think along the lines of LBGT, racial discrimination, cancer awareness and other much larger causes. But after reading the questionnaire and seeing where I could focus Alopecia under a larger umbrella, it all came together really well!

In short, Alopecia results in hair loss. The varying degrees are what separate areata, total and universals; each determining the type of hair loss be it patches, entire head or entire body. Affecting millions of people in the states every year, this disease is not life threatening so, it does not receive as much attention as more dangerous diseases. However, the toll it takes on a social level can be equally as damaging and harsh on this diagnosed.

So when I thought about how to align a social movement and alopecia, I realized it's been something I've been working towards all along.

  • Bald is beautiful.
  • Hair does not define femininity.
  • Women are no less for being bald.
  • Let's deconstruct the emphasis hair has on children & adult lives.
  • Health is not determined by hair.

All of these thoughts and emotions came tumbling through my keyboard at a rate I had trouble keeping up with. I couldn't explain my frustrations and goals enough. Something that I'm so passionate about that affects millions of others that needs the attention it deserves! Ultimately, I was able to formulate a project that addresses all those issues that have come with Alopecia, and a little more about what I've been able to do in my short time here on earth thus far.

I hope you take the time to read all points and share this along with your friends and family. You'd be surprised how many people can relate to this, even without hair loss. Social injustice happens on a daily basis- why don't we do a little more to be accepting, and encourage acceptance in daily conversations?

Peer Spring Project Link- click & share!

Stares

I get stared at, a lot. It comes with the territory. I willingly put myself in situations knowing that people will stare, and I'm okay with that. But!

Here is a message to all those who stare- I KNOW YOU'RE LOOKING AT ME.

Don't try and act like you didn't mean to zone out on my bald head for 45 seconds. A quick Google search declares anything longer than 3 seconds is staring. Do it. Try and look a stranger in the eyes for more than 5 seconds. It's very uncomfortable, and practically impossible for them to not break the contact. This was actually a project we had to do in my non-verbal communications class in college. Try and get a stranger to make unbroken eye contact for 5 consecutive seconds, and write down your reaction to each experience. Staring is a choice and ultimately, uncomfortable for one or both parties involved.

Walmart is a place I hate to go. Not just because of the company itself (I'm more of a support local farms and grocers kind of person) but because no where else do people stare at me like those in Walmart. Again, I KNOW YOU'RE STARING. And after a year of being a customer at Walmart, I have deduced there a 3 different types of starers.

1) The ones that look while you're not looking, but when you look anywhere near their direction they immediately head jerk into the completely opposite direction. Like it's totally normal to whip your neck 180 degrees to avoid eye contact from a stranger.

2) The ones that are staring at you but act like their looking at something through you. When you look towards them, they make short eye contact and then continue looking/walking in the direction you just were standing (as if the cabbage behind me is really that interesting.)

3) Lastly, the blatant starers that hold the stare as if there's an award for it. I have seen you staring at me, I make eye contact with you to signal I have felt your stare, look away and you continue to stare. Even to the point of following me down a different aisle to make sure you are seeing what you're seeing. Like a bald woman is something extremely rare. I would be a little more understanding if I were 8 feet tall and purple. But, I'm not. So, stop. Please, it's just rude.

 

Although staring is inevitable, it's obnoxious. I feel like I can't get through a normal day without getting unwarranted looks for no reason. Is a bald head really that unusual? Is a bald woman something you require looking at more than 30 seconds? I've considered many options to respond to the staring.

1) The obvious choice, stare back. This is my go to action as it requires little to no preparation or energy. I stare back and do my best to make the eye contact and hold for as long as possible. Long beyond the point of creepy, I will stare and stare until there is a physical blockage preventing me from keeping contact. Something like a stand of bananas always gets in the way.

2) Politely reply with a witty phrase like, "Take a picture, it will last longer." This one requires some sass and I'm just not a sassy lady. I'm confrontational, sure, but not with attitude. I'm not above using such phrases but, there are better options and this one requires a bit of a mood change. It also depends on the starer- if it is an individual who would be making rude gestures or comments, there are many other phrases that come to mind that I would be open to using on occasions. Something with much more sting.

3) Ignore. This seems to be the one I use more often than not. Although staring back is always in my pocket, I normally just continue on with my day in an ignorant bliss. I don't have the time to spend on starers. I don't have the energy to waste on people who go out of their way to make me feel uncomfortable. Even if they don't mean to, staring at an individual is going to become awkward. Ain't nobody got time for that!

There is no surefire way to address the starers. And I'm not against staring altogether, but when the individual being stared at clearly acknowledges your stare, come up with a fun response, make it worth both your whiles. Some excellent responses include but are not limited to:

"Wow, I love what you've done with your hair."

"Great shirt color!"

Or a personal favorite: "The back of yo head is ridiculous!"  

 

Tell them a fun fact, or make up a statistic. Basically, don't get caught staring! If you want to stare, go for it. But take caution, WE KNOW YOU'RE STARING. So avoid being one of the 3 starers I listed and you should be fine. But no promises.

Funny Alopecia Problems

https://www.youtube.com/watch?v=t-sj2-vLz8g

Anyone with hair loss can relate to this. Funny Alopecia problems: being cold, beauty, make up, eye brows and feeling feminine. Just a short video covering some things that come with being bald. Questions answered from Facebook, Twitter and Instagram about what some of the difficult aspects of being bald are. Please like, share and subscribe for more videos!

https://www.facebook.com/kybamberger Instagram: Kylie Bamberger

2014 Guide to Sunscreen- Click here to view list.

2014 Guide to Sunscreen- Click here to view list.

Coming into the summer, baldies like me have to consider sun protection. There is nothing worse that sun burning your head. It's like having a constant headache that no matter what you take for it, never ceases to ache. And then it peels. Which is horrible. There is nothing quite like understanding what lizards do regularly. Shedding skin from your scalp isn't pleasant or sightly. And eventually calls for even more products and protection (P&P). 

The first thing I turn to for sun protection is hats. Ballcap hats, floppy hats, bandannas, scarves... you get the picture. Consider this my front line of defense. Although protective, not necessarily the best solution. They tend to keep heat and sweat in which becomes cumbersome quickly. They also don't bode well in water, and for water babies like me, I need something to protect me while swimming. 

That's for the protection. When it comes to the other P in my P&P formula (product), there's sun screen. Here's my issue with sunscreen. It never completely shields from the sun. It's a big trust to put into a sun cream to expect it to protect you from sun burn in such a sensitive area. I have tried close to 50 types of skin care products with SPF in it and none have my complete trust. I always end up throwing a hat on anyways to cover my head and face (which I suggest anyone even with hair begin practicing as well.) My biggest issue is getting sun screen in your eyes. Being that I have no eyebrows or lashes, there is nothing stopping it from dripping down from my head, to my forehead then into my eyes. No product is that water proof or sweat proof to prevent this unpleasant side effect of being bald. And it never fails. No matter what I do, sun screen drips into my eyes from my head. And because I try to take such good care of my head, I won't go out without it. So I have resorted back to hats and finding the removal routine that cools me down the fastest. 

So here is a list of new sunscreens I will be testing this summer in hopes I can find something that is safe and strong for my bald head. If you have any suggestions, please comment below and I will test your products out. I'm hoping to find something that works for me and can recommend to others who struggle with this dilemma as well. If you have tried any of the products in the link above, please review them in your comment! So comment your suggestions below and I will give them a try! Thanks!

 

We are so accus...

We are so accustomed to disguise ourselves to others that in the end we become disguised to ourselves.-Francois de La Rochefoucauld

Disguises couldn't be more prevalent in today's society. Each of us are told what to wear, what to eat, how to act- even what to believe. We are conditioned into thinking these are things we want; things that we've told ourselves we need. That pumpkin spice latte from Starbucks. Those ray ban knock offs that everyone and their mother have. That camo sweatshirt that went on sale last week (because you could not justifiably purchase a sweatshirt for $80).

Here's some examples of previous trends:

  • Tamagotchi digital pets
  • Dickie overalls, specifically the pastel colors.
  • mood rings
  • frosted tips- '95 Justin Timberlake
  •  G-Shocks
  • Turtlenecks

You get my point.

I can go on about society's gaze and how each individual is affected by the strong powers of social media and how we'll never escape the stronghold our peers have on us etc...

But this blog is about hair loss. It is about alopecia and I want to address how wigs are such a huge disguise. I choose not to wear a wig. I have several: blonde, brunette, purple, afro, red head. But none of these are who I am. In fact, when I wear any of these out, I'm unrecognizable to some of my closest friends. People literally can have a conversation without being sure its me, Kylie. Same goes for going bald. In high school and into college, I would wear a wig every day. If I went down to the store for a quick bite, I could get away unnoticed by even my neighbors.

Choosing to go au naturale is a very personal decision and I'm not judging anyone who chooses to wear a wig on a daily basis. But for those that do, think about how someone who only knows you with hair would react. Would they know who you are? Could a friend confidently walk up to you and ask, "Hey, wanna go get our usual lunch?"

Here's some perspective for those that don't have alopecia: you wear your hair up every day to work, no matter how great your haircut looks from the weekend. Imagine how the office would react if all of a sudden you let your hair down.  You come in, bangs swept to the side and those long beach curled locks (that you perfected for hours the night before) are bouncing off your shoulders. The smell of your conditioner is filling the elevator as the air conditioning blows it back and you walk out onto your floor. After you're done taking that last sip of that brown liquid the gas station calls coffee, you look to to see an audience, curious as to who this woman might be.

"Did she apply last week?"

"Did her boyfriend propose?"

As if there has to be a reasoning as to why you look so, weird.

Importance of Having Fun

I want to take a second to emphasize that I have a lot of fun in my life. I find that there is no cure quite like laughter. Many find other ways of getting this satisfaction and to each his own. But here's how I see it: very few things make me feel better than laughing. Here's a short list of said things:

  • A big hug. Seriously, nothing better.
  • Popcorn.
  • Naps.
  • Talking with people I love (which quickly turns into laughter anyways.)

Having the ability to turn your negatives into a laughing matter is a fantastic quality. Many people think I struggle with my hair loss every day and that life must be so hard being a bald woman in today's society. And for the most part- they're right. Of course it isn't easy sticking out everywhere you go; of course I don't like being stared at or having people point at me. I'm what some call, an anomaly or irregularity so, I attract a fair amount of attention where ever I go. I'm fairly certain there are few days I have spent in public where someone hasn't said something to me about my "abnormality."

Here's where it gets interesting: people that spend time with me every day (boyfriend, friends, and family) don't recognize that I'm any different. So when people approach us, we look at them like they are just as strange as I am.

For example, my boyfriend and I go out to Bed Bath & Beyond. We're shopping for towels (it's a real exciting Sunday.) We're pushing a cart down the aisle and every section we pass people look over their shoulders to see this bald woman cruising down the store like nothing's the matter. My boyfriend wonders why everyone is staring as if we were naked or something. Nope, it’s simply my bald head that people find so fascinating.

It's worse when he shaves his head. Then everyone thinks I'm in chemotherapy and he's shaved his head in support and we're some miraculous couple battling life and death. We're not. The man simply likes his head shaved because it's less hassle. We’re just your average recent college grads looking for towels that match the somewhat off brown color in our bathroom.

Whenever my family comes to stay with us, they don’t realize that I don’t have a hair dryer. Or hair ties. Or bobby pins. Or shampoo or conditioner. Or an extra razor. Or any standard bath amenities women have on hand. Nope, I ran out about 9-10 years ago. I don’t keep a stash readily available.

Having fun is a necessity to overcome the struggle of hair loss. Having shirts that say “I’m too sexy for my hair, that’s why it isn’t there” is so everyone else can laugh about their own issues as well. A change in perspective and maybe, just maybe, a change in attitude.

Photographer- Katy Hahn

Photographer- Katy Hahn

Photographer- Katy Hahn

September.

September. September is a month of transition. It signifies the end of summer and introduction of fall. Colors begin to change. The weather gets a little cooler. We begin seeing pumpkins, wreaths, and squash. Sweaters become a necessity. Scarves are now acceptable. And most of all, football season starts. It’s back to the grind, September. School, work, errands and football games. The routine begins. September means nose to the grindstone ‘til Thanksgiving. We associate September with work. No more holidays, vacations or fun in the sun. September is often considered the Scrooge of summer. Bah-Humbug! However, September means something a little more to some. It is Alopecia Awareness month, and that signifies another level of change. Announced only a couple years ago, we finally have a month to celebrate baldness. To bring about concern and support for all those affected with this disease and to show the world that Alopecia has a widespread reach. We help clear the assumptions and engage others in understanding what affects millions of people. Awareness is a funny thing. It can range from the smallest of acts to the most dramatic. Things like "Wig-Free Wednesday" or wearing t-shirts that say "Bad Hair Day?" are examples of how awareness is brought about. As if being a bald woman doesn't stand out enough, it’s crucial to explain why this happens. The population relates hair loss to being sickness; that is the stereotype we are trying to break. Many people associate October with breast cancer awareness, almost without a second thought. Its pink ribbon month. October has successfully become the only month with unbreakable ties to an awareness movement. Here is my argument: Why are we "allowed" one month to celebrate baldness and summon awareness? Something you should know about me is that I no longer wear a wig. I haven't for 9 months and I plan to continue that way for years to come. (Many think this is brave and if you've read my previous posts, you'll know I attribute that to being stubborn.) I celebrate baldness 365 days a year. Breast cancer awareness is extremely successful because it is a life threatening condition. Alopecia will never gain the attention that other movements draw because people don't understand the damaging affects it has. Consequently that emphasizes the importance to continue Alopecia awareness year-round rather than for 30 days a year. It’s a fantastic accomplishment to have gained the month of September as our ally in this awareness movement. This month of transition symbolizes change in weather, season, lifestyle, society, and eventually, a change in heart towards anyone dealing with hair loss. Hopefully, we can continue this transition year-round and help spread awareness to any and all affected by this.