Thursday, August 27, 2009

Dream Hair

Today I was reading about the recurrent hair dreams many people with alopecia experience. I confess to feeling a bit sheepish. I've only had one dream. In my dream I was in the bathroom brushing my teeth when the panel of large round white bulbs over the mirror reflected a couple of wiry white hairs under my chin. I was horrified!

"No...NO!"I screeched. I tried to rub them off with a wash cloth. I looked in vain for a tweezers in the cabinet...but I'd thrown them all away when my hair fell out. "Not goat-chin hair! Please, God, not the chin hair! I LIKE being bald! No more chicken-butt hair in the morning. When I'm hot I dunk my head under the nearest faucet, shake it dry and walk away cool and refreshed. No more feeling like a cranky bear when hair gets in my eyes. No more spending money lining the pockets of hair care product gurus. I'm free. I'm comfortable. I'm happy. Send it to someone who wants it, Poppa God, 'cause I don't miss it and I don't want it back...especially the chin wire!"

I woke up, stumbled to the bathroom, turned on the lights and checked every inch of my head. Not a hair in sight. "Whew!" I exhaled unaware I'd been holding my breath. I eased my head under tepid water from the sink faucet drying it gently and lovingly with the fluffy bath towel behind the door.

One last look to be sure I hadn't missed an errant hair and I padded back to bed, thinking this hair dream must mean I'm inherently lazy, and more concerned with my creature comfort than my appearance or the opinions of others. I paused, considering whether I should be bothered by such an attitude. I yawned; decided I couldn't be bothered to be bothered, and fell back to sleep. Hairless dreamless delightful sleep.

Friday, August 14, 2009

The Bald Pain

Sometimes the side affects of pain killers hurt more than the affliction.

A week ago I had knee surgery to repair a torn meniscus – a doughnut shaped piece of cartilage inside the knee that sits between the femur and tibia bones. Its job is to cushion the movement of those leg bones. When the meniscus is torn through injury swelling and knee pain result; and, since cartilage doesn’t heal, surgery is necessary.

This was my third meniscus surgery (I really have to slow down and watch where I’m going – or at least not land on my knees when I trip.) Still, I knew from experience this would be a walk-in-the-park, a piece of cake. A couple of days and I’d be up to speed again.

Apparently, knee surgery is like pregnancy, each one is different. Once the local anesthetic the doc injected into the knee during surgery wore off the pain level went from zero to high tide and kept rising. Vicodin didn’t touch it. I punched the emergency number into my phone and growled at the kind surgeon through clenched teeth: “Drugs! I need real drugs and I need them now!”

I know, I know. Very un-stoic. Definitely wussy. I was prodded by pain and the fear of that pain and the desire for immediate relief.

The next drug I took greatly reduced the level of pain, but the side effects left me with vivid and disturbing dreams. A couple of days later I woke to the thunder of my dogs pounding up the stairs as the sound of my loudest shrillest wake-the-dead whistle reverberated off the walls. My heart drummed an erratic rhythm in my ears. Who knew you can whistle in your sleep. I was terrified.

Turns out, the pain killers were worse than the pain. I didn’t have control over the pain in my leg, but I did have control over what I chose to do about it. So I stopped the meds. Cold turkey.

I felt the same way when my hair fell out. I was in emotional distress and was prodded by that pain to seek immediate relief. When comb-overs weren’t enough, I went to a wig.

Turns out, that pain killer, too, was worse than the pain of exposed baldness.

Tight nets left me with killer headaches. Wigs were so hot I sweat off the make up I used to cover up missing eyebrows and eyelashes. My boss walking up behind my computer chair to discuss the current project unknowingly caused an instant 60’s bouffant bubble in the top of my wig when I looked up and back over my shoulder. It was humiliating to have to shove it back down and adjust its position. I could never go to a meeting without checking to be sure my hair was even on both sides. I was constantly on edge and self conscious. I stopped laughing and enjoying my interactions. People began looking at me askance and asking what was wrong. I was miserable…depressed and lost and miserable.

I didn’t have control over the baldness, but I did have control over what I chose to do about it. So I stopped the wig. Cold turkey. And now I use hats to protect my head from cold weather, not to protect others from my bald head.

Just as the pain in my leg is gradually decreasing as healing progresses, so the pain of my baldness decreases as I accept it and embrace the healing process.

For me, that healing process includes:

• Personal interactions with others to educate and desensitize

• Exposing and challenging the edicts of our hair addicted society to girls and women – there is no shame involved, but there are billions of dollars at stake.

• Utilizing whatever writing talent and skills I have to create Boldly Bald Women, a book about women who choose to face their baldness and their lives without hiding

• Joining with other bald women through Alopecia World ( in mutual support across national and international lines

Pain is part of life. Fear is part of pain. Although we cannot control everything, we can choose to take control of what is controllable and make the best and bravest choices we are able to make at the time.

As we do what we can, where we are, with what we have available, we gain strength and wisdom for another step and another step after that and another and another until what has struck us down no longer has us paralyzed with pain and fear and dread.

There is no way out of pain except through it; but on the other side of pain is the healing of quiet confidence and the flowing joy of self acceptance.

May Poppa God grant you courage and strength and His peace as you face the pain in your own life and may you be guided to your own place of quiet confidence and flowing joy.

PS. Slow down and watch where you're walking!!!

Tuesday, May 12, 2009

My Son's Tweezers

My son, Tony, has a self taught talent for cutting hair. At sixteen, Tony began cutting his own hair to camouflage a receding hairline. He was mortified at the thought of baldness. When friends found out Tony did his own cutting and styling they asked him to cut their hair as well. As Tony’s skill and confidence grew he offered to cut his father’s hair, and has been doing so ever since.

The last time Tony cut the little Greek’s hair I joked: “Hey Tone…will you cut my hair too?”
“Sure, Mom, it will only take a minute,” he quipped.
“Yeah, right! First you have to find a hair to cut.”
“What, you don’t think I can find one little hair?”
“Tony. I haven’t a hair anywhere on my whole body. Yes I’ll bet you can’t find one.”
“How much?”
“I bet you $5,000 you can’t find a hair on my head.”
“Oh, I’ll find one alright.”

Tony’s eyes twinkled and I remembered too late never to bet my son he can’t do something. Even something I’m five thousand percent sure of. He turned back to the task of cutting his father’s hair and I returned to my conversation with his fiancée.

Do you know that feeling that comes on suddenly when somebody is watching you outside of your line of vision? That creepy feeling when you just have to glance behind you to identify the source of your discomfort? I turned my head sharply to the rear nearly knocking off Tony’s nose.

“Mom, don’t move!” he chided. “Krissy, go get my tweezers!”
Laughing, Krissy got up from the table and ran for the tweezers while Tony pressed a finger firmly into my scalp.

“Ha!” he said triumphantly, “I found two hairs! See?”
“You did not. I didn’t feel a thing. I would have felt it if you pulled out a hair.”
“Two hairs,” Tony corrected, “see them?”

I peered at his hand, first with my glasses on, then with them off. Sure enough, there in his palm were two pathetic colorless filaments about 1/16 of an inch long.

“So, that’s two hairs I found. Does that mean I get $10,000?”
“Nope. You don’t get $5,000 either. The deal was to find them and cut them, not pluck them.”
“Aw, Mom!”

Alopecia is unpredictable. Just when you think you’re over it, hair will start falling out again. When you’ve despaired of ever growing a hair again, bam! Back it comes. Friends and family asked why I refused to go to a dermatologist for the usual course of treatment and shots.

I’d watched the son of a friend of mine go that route. The shots were excruciating. Sometimes the hair would grow back in that spot only to fall out next to it. Sometimes the shots didn’t work to grow hair at all, but they certainly worked to keep the young boy focused on his hair as a source of shame, embarrassment and pain.

Thank you, no. Not for me. I had no intention of suffering unnecessary pain – either physical or emotional. I had no intention of giving baldness that kind of power over my life. Submit to pain and shame and hiding…or take my bald head, accessorize and flaunt it with sauce and verve? Well, submission was never one of my strong points, so pass the sauce and heavy on the verve.

Thursday, April 30, 2009

My Husband’s Humor

During the time my hair was falling out my husband got a call notifying him his mother was gravely ill. He arranged to take a personal leave from work and went to Greece for two weeks to be with her in what turned out to be her final days. Mike’s love for his mother is deep and strong and true. I knew he would be shattered when he came home and greatly in need of comfort.

Alopecia is no respecter of need. It has no sense of timing and certainly no compassion.

While Mike was gone my hair loss accelerated and I looked like a dog with rampant mange. I didn’t want Mike to come home and see me looking sickly having just left his mother on her deathbed. It was the day before his return my friend and I went hair shopping and I had the wispy mess shaved off and replaced with a wig. I gave him a head’s up by phone to avoid shock, but my wonderful little Greek was understandably lost in a fog of sorrow, grief and exhaustion and it didn’t really register.

There have been times during our 33 years of marriage when each of us has needed to lean on the other while we dealt with something too big to handle by ourselves. We have been there for each other no matter what. This time I worried I would be a horrific hindrance rather than a haven for Mike. I was afraid when I reached out to comfort him he would recoil.

My sister and brother-in-law met me at the airport to welcome Mike back. It’s a family tradition…Starbucks coffee at the airport to send off and receive family and friends. It didn’t help my confidence level that neither of them was enthusiastic about the wig. It was a sudden change and would take some getting used to.

Mike walked down the terminal ramp towards us and my heart lurched. He looked terrible. Brown circles ringed his eyes and his face was creased in places it had been smooth when he left. He looked unwell and fragile. His eyes locked on mine and held while both pairs filled with tears. The emotional interplay of years of love and support was all we saw and felt. No words needed. Everything conveyed in the gentle sway of our hug. He took a ragged breath and pulled back, looking at my head.

“So,” he said staring at my new auburn synthetic locks, “who are you and what have you done with my wife?” Everyone laughed, including Mike.

“Well, it’s a lot better than what’s underneath,” I quipped and lifted part of the hair piece to expose my naked scalp.

“Holy moly,” he said, “you’ve turned into Kojak!”

“How bad can that be?” I shot back. “He’s Greek and gorgeous!”

That night, after hours of sharing, many quiet tears and much reminiscent laughter, we went upstairs to our bedroom. I took off the wig and placed it on the yellow plastic stand I’d purchased for it and slowly turned around.

“Come to bed, Kojak,” he said and opened his arms.

Later, I picked up a book and turned on the reading lamp as Mike was dozing off, jet lag claiming the last of his energy. He murmured: “Hey Kojak….turn out the light. It’s bouncing off you head and I’ll never get to sleep.” Seconds later he was gently snoring.

I smiled, filled with gratitude for this man who had run his hands over my shaved head, noted it felt as soft as a baby’s bottom, and kissed the ridges where my eyebrows used to be. His humor was a gift of acceptance…his acceptance a gift of strength…his strength a gift of love.


It is love that enables those of us with alopecia to become boldly bald in a world where all models of note, at least, for my generation are male: Teli Savalis, Yule Brenner, Patrick Stewart.

It must start with self love and self acceptance. When we choose to love and accept ourselves as we are, we open the doors for others to also love and accept us as we are.
We must be willing to give people time to adjust to the change and grease the wheels of change with humor. Not everyone will come around, but do you really want people in your life who are so superficial they can’t see beyond the presence or absence of your hair into the beauty and value of your personhood?

The more women who step out into life boldly bald, the less remarkable female baldness will be. I foresee a day when nobody will think anything of it at all and folks will wonder what the big deal was.

Of course, there’s a down side to that…I’ll have to find something else to blog about.

Monday, April 27, 2009

My Sister’s Hats

If my brother thought I was a pain in the rear growing up – my sister had no doubts at all. Diane was eleven when I was born.

She was a built in babysitter for me when our mother went back to work as a registered nurse in a local hospital when I was five. I was a built in chaperon for many of her dates, whether it was tagging along when she went to the beach or sneaking around the squeaky floor boards in the kitchen to spy when she said goodnight to her current beau at the back door landing. In fact, I was 26 before she actually made up her mind in favor of letting me live.

Our father died when I was 16 and our mother when I was 35 and living abroad in Greece with my husband. After our brother died three years ago, I asked Diane if she was glad she’d chosen not to strangle me on any one those numerous occasions she believed me deserving of immediate death.

“Most days,” she said. “Why?”
“It turns out I’m the only one you’ve got left.”
She visibly startled. “I hadn’t thought of it that way. You’re right,” she said softly.
“What? I’m WHAT? I'm right? RIGHT????” I bolted to the wall calendar and wrote on the day’s date in permanent Sharpie marker: “PAM WAS RIGHT!” As I returned to our Canadian Canasta game, Diane swatted me playfully in sisterly pique and we continued together to soundly trounce our husbands at cards.

What does that story have to do with living boldly bald? More than anybody, my sister suffered the emotional trauma of my hair loss. She wouldn’t look at me. She’d turn away or cover her eyes with her hand whenever I took off the wig.

“Cover your head!” she’d insist, and I would, feeling frustrated and hurt. When it became clear that wigs simply were not for me either physically or emotionally she pursed her lips and said: “Well then start wearing hats.”

“Sister-mine,” I retorted, “if you want me to wear hats, you’d better get busy and make them.”

Darned if she didn’t get several crocheted hat patterns and do just that! Each new hat was an experiment in style and color and materials. Each one was better than the one before. Each one got jazzed up with broaches and flowers and buttons and doo-dahs. They are fun and stylish and sassy. We’ve found I’m happiest with a fedora that has wire in the rim so I can shape it to my whim of the day. A fedora suits my last-of-the-red-hot-mama’s-despite-being-58-and-fat swagger.

The day Diane came to accept me bald was the day I took off my hat to mop the pooling sweat and she saw how wet the paper towel was.

“I can’t do this anymore, Diane. I can’t be this uncomfortable to protect you from your distaste.”

She looked stunned. Turns out, it wasn’t distaste – it was both fear and her sense of propriety. If Diane didn’t see the baldness she wouldn’t have see the difference in me. She wouldn’t have to cope with something being wrong or worry.

My sister has been a reserved and private person, where I have always been outgoing and in-your-face-Snoopy-happy-dance effervescent. When we went places together and my head was covered, she didn’t have to cope with as many stares or potential questions and she was more comfortable.

Somewhere along the line we both realized I can’t live my life from the premise of my sister’s comfort…or anyone else’s. She left her comfort zone behind and looked at me openly. Hugged me genuinely, touched the baby bottom softness of my scalp without flinching. She said she was okay with my baldness. She said it, but I knew she really meant it the day she told me if I wanted any more hats I’d have to learn how to make them myself.

Hat’s on…and off…to you Diane! I love you too, all the way to the moon and back.

Once again my big sister has decided in favor of letting me live.

Thursday, April 23, 2009

My Brother’s Socks.

My brother David died suddenly of a massive heart attack three years ago. He was 62. I miss him every day. Despite the fact that I was his kid sister and a royal pain in his rear when we were growing up, David loved me and, in our later years, shared a number of things he admired about me. Courage and tenacity were at the top of his list.

When I was diagnosed with ovarian cancer and it looked like I might only have a few months to live, David was ready to scoop me up and whisk me off on an Alaskan cruise. He knew watching the whales frolicking in the cold waters next to calving glaciers was one of my life goals, and he didn’t want me to miss it. Had it been necessary, David would have sold everything he owned to make sure I got there. And he would have made sure our family was together to share the experience. He was generous that way.

It turned out that my cancer was contained and I got out without having to have either radiation or chemo. I lived. He died. David never saw me bald.

I lost my hair two years after David’s death from alopecia not cancer. But I know my brother would have supported my decision to go boldly bald – he might even have shaved his head in camaraderie. He was quirky that way.

David’s belief in my courage and strength was a powerful confidence builder. When I didn’t feel brave, when weakness washed over me, he would remind me of past obstacles overcome, of forward steps taken. He was supportive that way.

When I was dealing with the emotional trauma of losing my entire body hair I missed my brother’s encouragement. I missed his presence. I missed the contact. One day I was acutely feeling the pain of work-world displeasure over my unwillingness to wear a wig. I wanted one of my brother’s enveloping hugs.

Suddenly I remembered a container of clothing his widow had given my husband. I ran to the basement and opened the bin…undershirts, underwear and socks. I took off my shoes and socks and slipped on a pair of his black crew socks. They were too long. I scooched them up and wiggled my toes. I could feel him laughing inside my head: Way to go Pamèlli, I knew you’d figure it out.

When I need a reminder that although being bald has changed my life, it hasn’t changed who I am…when I need a reminder that I have courage and strength to not only live bald boldly, but to use that baldness to shore up and encourage others, I smile and pull on a pair of my brother’s socks.

Wednesday, April 8, 2009

Wiggy Hugs

It is said we need 4 hugs per day for survival, 8 per day for maintenance and 12 hugs per day for growth.

I love hugs. I love giving them and receiving them. I love hugs as the expression of caring and connection. I love them as reassurance and encouragement. I love hugs as greetings and goodbyes, as the absorptive tissues of sorrow and the exclamation points of joy and excitement.

But when I lost my hair and donned a wig my hugs turned wiggy too. ‘Wiggy’, has two meanings. The slang term means: excited, eccentric, crazy. The rarer usage of wiggy is: pompously formal.

When I wore that wig, hugs became crazy and took on the degree of concentration required to navigate an obstacle course. Was the person I was hugging wearing glasses or anything on their ears that might get caught in the fibers of my wig? Did their clothing – hats, collars, pose any threat? What danger lay in wait from a benign piece of jewelry? Was my overheated head dripping sweat?

If someone came up behind me while I was sitting in a chair, looking up and back over my shoulder to see who it was pushed the wig up and formed a large mound on top of my head. It looked as though I’d magically transformed the wig into the teased bubble style of the ‘60s. Worse yet, it would start to slip off sideways and I’d smack the top of my head to catch the fall and ram it back into place.

I became hypervigilantly protective of my movements. My hugs became stiff and formal. It was a Really Bad Case of Wiggy Hugs. People asked: “What’s happened to you? Are you alright?”

I worked at a retirement home and worried that a bald head might be offensive or stressful to the residents.

“No,” I finally wailed. “I’m not alright. I’ve lost my hair and I’m wearing a wig and the stupid thing gets caught on everything and drags around sideways on my head. I constantly have to check if it’s on straight and I’m getting very hug deprived and crabby - it’s driving me crazy.”

After a moment of startled silence, one resident shuffled up to me with her walker and whispered in my ear: “Then take the darn thing off!” She was hard of hearing and didn’t realize her whisper was quite loud. I looked around. The rest of the women were sagely nodding their heads in agreement.

Isn’t it something how the people we are so worried about offending are the most often the very ones who’d rather have real hugs than fake hair?