Hair One Day, Gone the Next

I have always been a chameleon with my hair. Ever since I first bought my bottle of Sun In and bleached it to a bright orange as a young tween. I treated my hair like another accessory. Like Jewelry. I had fun mixing it up. Short, not so short. Red, black, natural. Bob, pixie... 

But don't take my word for it. Here's some head shots from the last four years.

Box dye brown

No dye bed head

Shaved off post brain surgery head
(I did it myself)

Sweet henna head

Wonder Woman black, longer (for me) hair

Irish red hair

Up, down, head scarf, hair clips. I loved to play around with my hair. 

I haven't colored my hair in over a year now. I miss it sometimes. Just the fun of changing things up if I want. But I don't miss the mess, cost or smell. I also don't think I could do it now.

The way my muscle disease works for me, reaching over my head while sitting or standing is the hardest thing I can do. So shampooing, blow drying, all of those motions cause me a lot of pain. My arms fatigue very fast.

I wanted to grow my hair out again, but the styling involved with long hair has just become impossible for me. I can shampoo and do a quick blow dry, but that's it. Forget all the products and cute styling. Flat irons, curling irons, hair clips, bobby pins. It's all out for me. 

Instead of all those distractions I'm trying to embrace what's important in life. To stay focused on the things that really matter. My hair does not matter. As my husband says, "You're beautiful and sexy no matter what!" Having it short and natural saves me loads of energy, which is the most important thing.

Make Life Easier

Over the past two years I've learned ways to tweak my environment to save spoons. For example, opening a dresser drawer takes WAY more effort than putting something on a hook. I also have learned to not sweat the small stuff. Like taking time to turn my clothes all right side out all at once. It's easier for me to just do it one at a time as I wear things.

Here's a few modifications that have been incredibly helpful for me.

• Sit whenever I can instead of stand.
• Lean instead of free stand.
• Plan ahead.
• Think outside of the box (like my dresser is now just storage for things I don't use often like sunglasses and extra blankets).
• Work around your energy needs - if showers leave you exhausted, take them before bed instead of first thing in the morning.
• Use empty wall space as storage.
• Keep the things you use the most within easy reach and out in the open. (I love using a variety of pretty little bowls for things like hair clips, jewelry and my anti-vertigo bands.)
• Use bins instead of hanging things up.
• Use wall hooks for clothes or pajamas you wear the most.
• Using "travel size" instead of full size products.

In the kitchen I have a stool that's adjustable to sit on when cooking, but honestly my husband and mom feed me most of the time. It's not a job that I miss. When I do cook I keep it simple. That makes it healthier and saves my energy. We also meal plan weekly together, that way there's no stress around dinner time.

In the bathroom I love my shower stool and bars. I feel like everyone needs both in their shower even if they don't have any health issues. They didn't cost much and I use them every time. I also use bins, bags and hooks in the bathroom for my stuff. I've learned that "travel size" products are lighter and easier for me to use, so that's what I tend to buy. I've also cut WAY back on the number of products I use. "KISS" in the bathroom. 

Each spoon of my energy is precious and these minor tweaks add up fast for me. 

You Look So Pretty!

Second only to "you look so healthy" those four words also can be a bit loaded. I mean when was the last time you told a woman "You're so smart! You're so organized! I really admire you!" Not to say that we don't also compliment others outside of beauty, but come on. We all know "You look so great!" Commenting on someone's superficial appearance is the cultural go to. Even for children "You're so cute". Which is really terrible.

I had a conversation with my mother the other day about beauty standards and ableism. I feel like every way in which a person deviates from the cultural standard of "normal" you will encounter push back. This push back can come in the way of prejudice, discrimination and the world just not being made for you.

No makeup, kid clips, not fighting aging.
I think I'm still pretty.

Typical "deviations" from our current culture that will cause pushback are:

• Skin Color
• Body Size
• Signs of normal aging (wrinkles, sagging, silver hair...)
• Obvious signs of disability (wheelchair, walker, synthetic limb, deformation, oxy tank...)
• Height
• Socioeconomic status (how wealthy you are... or aren't)
• Body hair (on women)
• Body odor (on women)
• Dressing "outside the norm"
• Body modifications (face piercings, ear gaging, etc...)

And as if this exclusionary, impulsive reaction wasn't bad enough another thing I've noticed is that the more of this box's you tick, the more violent and immediate someone's reaction can be. One need look no further than the violence perpetrated against trans women of color to see that's a fact. Being tall, a person of color and transgender can easily get you killed.

So what does that mean to me, a queen size disabled person over 20? I shared with my family that I've noticed a huge difference in how people react to me and treat me depending on what mobility device I'm using, the color of my hair (natural vs colored), the clothes I'm wearing, the purse I use and if I've chosen to wear makeup that day.

Growing my hair color out.

AGAIN...

The most poorly I'm treated is with natural hair, casual clothes, no Coach bag and using a store electric cart. I honestly like to keep my cane in a store electric cart with me as an obvious signal to my disability. Being a big person there are way too many "people of Wall Mart" memes out there for my comfort. I noticed that people will not get out of my way (block me in on purpose), ignore me, not offer to help me with anything and in general tend to just look away.

Helooooo. Get the hell out of my wayyyy!!!

The best I'm treated is in full makeup, hair colored, dressed up, expensive purse and either walking on my own (something I only do in my own house these days) or using Dory, my "mega wheelchair." I believe that is because it screams "I have a legit disability!!!" Dory for sure gets me treated even better than my travel wheelchair Ariel. I'm guessing because of the size and gadgets it just "looks more disabled".

Vroooom!
Me and Dory taking off from my Mom's house.

So what would happen if I have blue hair, piercings all over, riding in a scooter, wearing rainbow yoga pants and an obscure 80's band t-shirt carrying a unicorn backpack on my back? If you add to that it is a person of color and a very large person I'm sure she'd end up a meme on someone's Instagram account, or be filmed against her will and uploaded to YouTube with some horrible comments being made. That's my guess. Because this person is too far outside of what our culture deems "normal" and they deserve to be punished for it.

Even with knowing all this to be true I still choose to push the boundaries on normalized culture. I feel it's the only way to create change for the good. For there to be love instead of hatred and prejudice. Because I am a social justice warrior and a feminist and that will never change no matter how severe my disability becomes. 

With not being able to work right now. Not being able to help people the way that I used to. Living with this core value of loving people and fighting against stigma in even the smallest way still gives me a strong sense of purpose. Something everyone needs in life.

Hair battle

I have always had a battle with my hair. Even before I had any kind of illness. It has been every color of the rainbow (at least once.) Mostly I keep it pretty short or in a bob. It's very fine, straight and thin. I feel this limits me to what kind of style I can have. And don't even get me started on how many curly home perms I've had in my life.

When I turned 40 I was curious what color my hair actually was and I stopped coloring it... for a while that is. Then I would go back to dark brown or black, then grow it out again, then repeat this step over and over.

Then I had the brain tumor and no more color for me. Or so I thought. About a year later I tried organic henna and liked it. I've always been partial to red hair. So that was it! I was going to henna my hair every month or so and grow it out.

Orrrrr am I?

Honestly I kindove miss my natural hair color. And having a short pixie. It's so easy to care for (which is a really big deal to me right now) and I like the look. When I see a mature woman with a short pixie I think it's cute.

Here's what I'm sure of. I will never "box" or salon dye my hair ever again. I won't subject myself to chemicals. I like to play with my hair. It's a fun accessory that makes me happy. But I can't swear off changing it often or going back and forth on the henna or my natural color.

Post hair chop today

Post Brain Tumor Henna

I used to color my hair at home all of the time. Black, red, blonde, chestnut, burgundy and every color in between. But I have never tried henna. The reason for this is you can't use henna on hair that has been chemically processed, and my hair has ALWAYS been chemically processed. That is till I had my brain tumor. I've been natural ever since.

Recently we went to a party and I saw all the women with their fun hair colors. Even women older than me with pink, red, two tone fun hair. I looked at my pictures and thought "I WANT FUN HAIR TOO!" Now my natural color may be nice, but no one would ever say that it's fun. I'm a fun woman and I want fun hair.

I was also going through some old pictures and I saw a few with my hair red. I always loved the magic and myth around a flaming head of hair and Maureen O'Hara is one of my heroes. I thought coloring my hair again was out for me because I want to keep away from chemicals. But then I remembered henna. 

People have been using henna to color their hair for thousands of years. It's a safe, all natural, chemical free process. The one I picked is even organic!

The directions said for an even brighter red to steep some hibiscus tea (which I just happened to have on hand!) and use a little bit of lemon juice or vinegar. I used 2oz white vinegar and 12oz tea mixed together and steeped overnight.

Ok... it looks EXACTLY like poop. Luckily it doesn't smell bad. 

First I painted Vaseline all over the parts of my skin that I didn't want stained. Then I liberally applied the henna mixture all over my hair starting at the crown. Next I wrapped it in plastic wrap (about 3 layers.) Then I topped that off with a warm towel. I did henna my brows too. Very carefully with a fine paint brush and lots of Vaseline around them. I then blasted them with a hair dryer for a few minutes as henna likes heat to activate. 

Four and a half hours and three pairs of gloves later...

I really love the results! Unlike chemical dye it also didn't burn or hurt my scalp. Next time I will use even more Vaseline as I still got some staining, but it wasn't as bad as I'd feared. The color keeps curing for the next two days and will darken a little bit. 

The process was also a fun History/Science/Cultural Anthropology experiment for me. I could picture a community of women taking the day off and all doing henna for each other. I'm sure they would have group grooming days like that. I also thought of the Egyptians who were documented to use henna liberally. It's amazing that it could do as good a job as chemicals without all that damage and toxicity. 

I think it looks really natural. I will definitely do it again.

And here's a gratuitous puppy picture just because.

Hats Hats Hats

MR. SMEDS AND MR. SPATS

by Shel Silverstein 

Mr. Spats

Had twenty-one hats,

And none of them were the same.

And Mr. Smeds

Had twenty-one heads

And only one hat to his name.

Now, when Mr. Smeds

Met Mr. Spats,

They talked of the

Buying and selling of hats.

And Mr. Spats

Bought Mr. Smeds' hat!

Did you ever hear anything

Crazier than that?

Looking "Sick" and "Tired"

Friday evening my husband and I had a spontaneous walk through a beautiful rose garden. It was the same day I found out I would need to be job hunting again and my spirits were a little low. There is nothing like the touch, smell and sight of nature to heal your soul. I always feel so revived after a little time in nature.

But there was something that struck me:

Before - Friday night

I'm sure my husband would disagree, but in reviewing our pictures that we took I had one thought running through my mind. "Who is that sick, tired looking woman!?" Even in the best picture that he took I thought "That's accurate and looks just like me, but I don't like looking like that."

So part of that is out of my control of course. But fortunately since I'm a woman and my culture supports (nay, ENCOURAGES) me to change my appearance whenever I wish I have many tools at my disposal. The most obvious choice was to dye my hair.

Weapon of choice

I go back and forth (and back and forth) on coloring my hair or not. I'm lucky to be in a field where not only do I not have pressure to look a certain way, but looking older actually adds wisdom and credibility to the things I say. I also hate beauty routines for the sake of just doing them. Conformity. Feeling like I "HAVE" to do something to myself on a regular basis. Coloring you hair can easily become something you feel like you HAVE to do and I hate that. 

I also admire women who don't color their hair. I consider it to be a very feminist act of rebellion in our "youth obsessed" culture where women aren't allowed to age or look their age.

BUT... on the other hand... I also felt like my body wasn't really my friend right now. That I was showing outward signs of a losing battle. I felt I looked much older than what I really am and that frankly I looked "sick." As I said, I need to be job hunting and I really want to look and feel my best! I want to feel pretty and confident and not look like I just really want to crawl back into bed (even if I feel that way.)

So yes. I decided to color my hair.

After

I went with a color as close to my natural color as I could get. I like the look of dark hair, light skin and blue eyes. I also didn't want anything TOO dark as that's pretty high maintenance. I'm a DIY kind of girl. I HATE spending money at a salon and having people talk at you for hours only to pay 100x as much as you would if you just did it yourself. 

And yes, I am aware of the hypocrisy that I'm trying to cut out chemicals, but then I go and dye my hair. What can I tell you. I'm an impulsive enigma. You know what though? I do feel better! I was very happy with how it came out. It was just what I hoped for. I feel prettier and subsequently healthier. My hair also looks thicker and like I have more of it. That's a big deal for someone with Hypothyroidism. 

I'm glad I acted impulsively. I'm glad I listened to what I wanted in the moment, even if it seemed counter-productive to my health (dousing myself in chemicals.) I hope it will give me a confidence boost to land my next job.

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Are you wondering why I never show my face? The governing body that regulates my profession dictates that if I share anything personal about myself. Even on a personal blog. Be it my full face or name. Then I have to provide a ton of other information that I really don't want to be made public. I also don't want one of my clients accidentally stumbling on my blog. It's a personal place to share and vent and I hope it is helpful to others. If I were you, I'd be wondering why, so I thought I'd share my reasons.