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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!

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

 

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!

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!

 

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