Through The Looking Glass

My mother told me that when I was little people would stop her in the street to remark on my incredible Shirley Temple locks .

As I grew older I lost the curls and my hair became thick and wavy. At the hairdressers I would often get compliments about how extraordinarily thick and glorious  my hair was. Of course, as was typical of most young people, I was never satisfied with the hair I was born with and wished it was curly when it was only wavy and sleek while it was flamboyant. I was either perming it or straightening it.  I was also never satisfied with the colour of my hair. Over the course of about 10 years my hair went from it’s natural mousey brown to red, to blonde and to brown with highlights. I remember that at that time, in the eighties, I had an annual budget of about $800 for hair styling.Every hair was always in place. It was truly my crowning glory.

When I look back to those days , all I can think is how ungrateful I was for the lovely hair that I had been gifted with . And also, how thankful I should be to have had that time with my hair. I should have cherished every moment, making my hair feel special just the way it was. I should have never let a day go by without letting my hair know it was loved. I should have spent more time with my hair.  In short, I should have realized that time is fleeting and what we have and what we take for granted can be snatched at any moment.

One of the last photos of my Beloved Hair, with me and my family, circa 1988.

  For one day this hair was, without warning, taken from me, succumbing to a little known or understood condition called alopecia totalis.

What is this condition and what did this mean? I soon found that not very much has been discovered about what causes the condition and there is no known cure. Although the condition is not even remotely life threatening I have died of embarrassment more times than I can count. I remember once I caught my wig in the car door and left the car with my hair still in the driver’s seat. Another time I caught my wig in the entrance door on my way into a sales meeting and left a major part of my planned ” first impression” in the door jam. Then there was the time I was having a dance lesson. It was a waltz lesson, I recall. My wig caught on the instructor’s shirt button. We were locked together and –you guessed it–the hair remained in the locked position while I waltzed past.

There are thousands of people with my condition in Canada alone. I met a lady once who told me that she was in the pool with her children and as she was splashing around she saw her hair floating by. Me, I just say I don’t swim when the subject comes up . Even my children don’t know that I am a very good swimmer and diver and once , years ago, water skied in shark infested waters off Hong Kong Island.

Not too long ago I experienced perhaps the greatest humiliation ever. I was on the dance floor ( I guess by now you may have guessed that dancing is my passion) , enjoying a salsa with a gentleman who is fairly short in stature. He lifted his arm to twirl me and swiped my hair right off my head. The wig went flying across the dance floor and I had to go after it , bend over and stick it back on my head. All eyes were on me as I tried to do this as nonchalantly as possible and pretend that this was the most normal thing in the world.

And then there are the eyebrows. Unfortunately, I also lost my magnificent eyebrows. They were luxuriant, they were shapely and they framed my big green eyes perfectly. At least that is how I now remember them. When I had them I considered them to be a pair of pesky bushes that needed constant grooming. I challenge you to try to draw a set of matching eyebrows onto your forehead without any kind of guidelines. Try to get the eyebrows to stay drawn on all evening. Can’t be done. Once I was drawing on my eyebrows prior to an important sales meeting when I took a call and got distracted. Coming back from the sales meeting I glanced in the rear view mirror and what did I see? I had forgotten to draw on one of my eyebrows and I had given the entire presentation with only one eyebrow. No one had said a thing!

People may be shocked to know that alopecia totalis sufferers get absolutely NO FINANCIAL ASSISTANCE from the government when purchasing a cranial prosthesis to restore hair to their scalp. As well , there are next to no insurance benefits provided by private Canadian insurance companies .  My doctor helped prepare the voluminous documents required to apply for funding through the Ontario Ministry of Health’s Assistive Devices Program, which provides grants for many types of prostheses. She was shocked to find out that I was not accepted, because , as she said, I most definitely needed a prosthesis. I also made a claim with my insurance company for a prosthesis and the claim was denied. I launched several appeals, all to no avail. If you have lost a breast, or an arm, or a leg, both the government and insurance companies have programs that will get you the funds needed to help with the purchase of a prosthesis. No one who has lost a breast, or an arm or any other visible part of the body need worry about finding the money to purchase a prosthesis–and they shouldn’t.

However, of you have no hair and require a cranial prosthesis, which is a specially fitted medical wig that will look authentic, fit snugly and comfortably, and NOT FALL OFF , you must find the money yourself. This goes for adults and children. Such devices are in the range of $2500+each per year, and two are required initially. If you do not have the money you have no choice but to wear a regular wig. These off- the-shelf products are ill fitting, uncomfortable and will be sure to let you down just when you need them most.

Without the assistance of the government or my insurance company, finding the dollars to purchase my own prosthesis was impossible. Imagine my delight when a promotion for a hair restoration company  ,HRS Of Atlanta came across the barter desk recently from our affiliate in Georgia. It seems that this company, which provides various hair restoration solutions depending on the situation, is a very active barter member in Atlanta and is always looking to expand their barter sales.

You would expect that, because they are providing this service on barter, the service or the product would be sub-standard . In fact, nothing could be further from the truth in this case. The service has been superb and the quality of the end product has been beyond reproach.A very high quality unit was rushed to me as soon as I placed my order, ensuring that I would not be without some kind of proper coverage from day one. Right now I am eagerly awaiting a custom designed and fitted prosthesis which is being hand crafted for me to my exact specifications . I would never have found HRS of Atlanta if they had not been a member of our barter network of over 50,000 business owners throughout North America. And I would never have known of the wonderful service that they provide,  helping sufferers like myself get their life back.

Janet Brown, A More Beautiful You

And those eyebrow malfunctions I used to have–no more! For two years now I have had my eyebrows semi-permanently inked  by Janet at A More Beautiful You, a barter member right here in Ottawa. In fact, I like the results so much that I enjoy her other services also—semi-permanent eyeliner and lipstick.

Often, people say to me, ” barter is all well and good, but what I really need is cash”. Yes, I could have used some help from the government in the form of a cash grant that they give in unlimited numbers to others who need prostheses. Yes, I would most certainly have put any money my insurance company had awarded me to good use. But while cash can be great if you can get it, barter can have the ability to deliver for you when you really need it, and that is one claim that cannot be denied.

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