A Final Post

 

It is with a heavy heart that this post is being written.  This blog's author - my beautiful and talented daughter, Christine Hook - died suddenly this past Friday, February 8, 2013.

 

Through this blog, written over the past three years, she shared much about her life: her hopes and dreams, how it was like to live with a disability, and other things that were important to her.  Her writing, even when discussing the difficulties in her life, was always punctuated with a feeling of hope and laced with humor.

 

In her life, after she had to stop working because of her disability, she again took up her art - a subject she majored in for her bachelor's degree.  She began again to paint and pictures of a number of her paintings have appeared in the pages of her blog.  She was involved in a movement in our local area known as Art de Cure, where paintings and photography of local artists are displayed in various medical offices and the proceeds from any sale of the art go to a variety of charities.  She was the coordinator of one of the medical galleries, the donations from which went to find a cure or means of alleviating her disease - Charcot-Marie-Tooth disease or CMT.  The members of the Art de Cure have decided to name that particular gallery The Christine Hook Memorial Gallery, a tribute to her work in bringing awareness to her disability.

 

Even though dealing with her disability and other medical problems, she never lost her sense of humor and always had a ready smile.  She is remembered by many who knew her of how positive her outlook was and how she always brought encouragement to others dealing with various problems.

 

So now we bring this blog to an end.  I would recommend that you peruse the various writings she has left us over these past few years.  And so we say farewell to a beautiful and talented woman whose work and memory will live on in her writings, in the pictures she painted, and in the hearts of all who knew her.  May she rest in peace.

 



These Shoes Are Made for Walking...in Braces!

Here's my tiny little feet.  Tiny little size 5.5 feet that have caused me significant problems over the years!  Why am I sharing them with you?  Well, because something WONDERFUL has happened.  No, they haven't straightened out or anything...there is still so much room under my high arches, you could seek shelter from the rain.  But finally, FINALLY, I have found the perfect shoe!

 

Here's my tiny little feet in the perfect shoes...they are 'Berries' brand, from Aetrex.  'Blackberry Helen Stretch Mary Jane' shoes, to be more precise.   The wide toe box accommodates my toes, my braces, even my wool socks...and since I got the 'stretch' MJ's, they are stretchy and comfortable.  I love them!  And I have never loved a pair of shoes.

 

 

 

Why?  Well, because high arched crooked feet and the perfect shoe do not MIX.  Something is always uncomfortable.  Usually they hurt in the toe area, because I have hammer toes, which is common in people with CMT.  When your muscles weaken over time in one part of your foot, the stronger muscles have more control over your foot structure, and your feet start changing.  The arches get higher (if high arches are one of your symptoms; other types of CMT have flat feet, and experience other problems.)  The feet pull inward, and the toes eventually 'curl' into what they call hammer toes.  And over time your shoe choices get more and more narrow, until it seems that all you can walk in are unattractive, and uncomfortable shoes.

 

I have been wearing the same brand of shoes for years; Teva sandals...which are expensive, and normally not found in stores.  Not that I frequent shoe stores anyway, since it is usually an unpleasant and embarrassing experience.  Teva sandals work well once I break them in, though they pinch my toes a lot in the beginning.  They also have holes cut into them (which is why they fit under the 'sandal' category.)  And living in Upstate NY means the weather doesn't always allow for that...one day last week we actually had a high of 8 degrees, so you can see what I mean!  Anyway, when the opportunity to get a CMTA's Premium membership for a year (for $30) came with the offer of a free pair of shoes from Aetrex, I was sceptical...even though they are a company known for their customizable shoes with a variety of sizes and widths available, I still didn't fully believe it.  But I knew that other people who wear braces or orthotics have been successful with their shoes, so I figured I'd throw caution to the wind and get a pair.  I mean, they were free...right??   But still, I assumed they wouldn't work and I'd end up sending them back.  I know...I'm a cynical shoe buyer, and I can't help it.

 

I had two main worries...the first would be that the shoes would hurt in the toes, and feel like I was trying to walk around with them stuck in a vice.  The other worry was that the ankle strap wouldn't be high enough, which is another issue I deal with when trying to shop for shoes...since I have Helios braces, there are no ankle straps to hold my feet in them, so my shoes have to do that.  If they aren't high enough on the ankle, my crooked feet like to POP right out of everything, making walking impossible.  But again, the word free kept creeping into my mind, so I put my worries aside and gave it a shot.  First I got the CMTA membership, received my Aetrex coupon and started scouring their website.  I really found one shoe that interested me and I thought might fit my requirements...the Mary Jane.  One feature of their site I found interesting is that you can see the image of the shoe from all angles, so you can get a really good look at the toe box and the way they're shaped.  All of their shoes are available in regular sizes, wide widths and even extra wide.  Because of the braces I need shoes larger than my 5.5 feet, so usually I wear size 7.  I stared at the shoe for probably 1/2 an hour, then took the plunge and ordered size 7 wide.  Because of the coupon, my shoes that were $112 dollars (including $5 shipping,) only cost me $5.  Even more surprising?  I got them 2 days later!

 

Another bonus is that I get 50% off of any other shoes I buy from Aetrex, because of being a premium member of the CMTA...and the best part?  The Stretch Mary Janes also come in brown!  If you wear braces or orthotics, or even just have wide feet and find it difficult to shop in regular shoe stores, check out Aetrex shoes...they have men's and women's shoes, sneakers and boots (link below.)  And consider getting a premium membership at the CMTA, so you can benefit from access to the CMTA newsletter, therapy videos, 20% off of purchases from CMTA stores, and the bonus of a free pair of Aetrex shoes...you may be very surprised at the results!

 

www.cmtausa.org

 

https://www.aetrex.com/

 

 

 

 

 





 



 





 

 

Names and Dreams

I had quite a few nicknames growing up.  Some were annoying, as any 'baby of the family' will experience, most of which were thanks to my older brother.  And since I've grown a lot in the past 41 years and learned to laugh at myself, I'll share them with you now...at least the ones I can remember.  He had a few he seemed to use interchangeably, and to this day I have no idea why any of them even came about.  Coo-Coo was the first one...does anyone even know what that means? The closest I can come to is coo coo ca choo from the Beatles song, I Am The Walrus...a group I adore, though back then I was still too young to appreciate them.  Rufus was another nickname, and also a mystery...though it actually has a meaning if you look it up.  It means red-haired, which I guess would make sense until I turned five...and my red locks turned brown.  No matter what he called me they were silly little names, ones an older sibling will use to tease the younger brothers and sisters who want to follow them everywhere, play with their toys, and be in their way.  Annoying, maybe, but normal!

And there are other nicknames I've adopted over the years, from friends and sometimes complete strangers...my best friend and I still call each other 'Girlie' and 'Chickee Poo' when we chat.  And once when I went out after work with my teaching co-workers, a tipsy stranger came up to us and put his arm around me, saying "Baby girl, you're so beautiful...you should go home and thank your parents!" before stumbling away.  For a while after that I was known as 'Baby Girl' which I didn't mind, mainly because the memory made me laugh.

So when do names begin to hurt?  When do they start to twist the insides, forming emotional lumps we tuck away and try to ignore when we're older?  With some names I think it's the tone behind them...if someone other than my brother had called me 'Rufus' and spoke it with malice, it would have stung.  Possibly I wouldn't still long for the red hair I lost, or be a fan of the Beatles today.  Though other names have grown and morphed in this world, gaining a life that requires extreme measures to eradicate...those names are not limited to one, and usually encompass whole groups of people.  They make no sense to me either, mainly because they are based in hate, and often ignorance...they grew from a twisted need to insult and hurt, and for many that need lives on.  Even when people use these names without thinking of the hate that creeps behind them, the problem is simple...it keeps the insults alive.

I won't go into the bad names that have been directed at me over the years...there are a few, and they still hurt to this day.  One explanation I have for that happening, is the fact that I have physical differences...and differences scare people.  Even when there are explanations for them (and I didn't have any explanations to share for a lot of years,) there are some people who still cannot accept anyone who doesn't look, act, walk or talk like the norm.  And even though I've managed to overcome a lot of that ignorance, the old wounds still open easily when I hear the names again.  Even when a name isn't directed at me, it hurts to hear them and other insults that remain popular today, such as the 'R' word...mainly because I know what it feels like to be singled out for my differences.  I mentioned this word in a previous post, Names Do Hurt, and was recently reminded of the fight that still exists to put an end to its existence...it turns out that this week is 'no name calling' week, which would be a blessing if we could achieve it!  Though to tell you the truth, I think we have a long way to go before that would ever be possible.

My father, also a blogger, wrote today about Martin Luther King, Jr...in a post called I Have a Dream.  MLK faced harsh obstacles and worked tirelessly to help our country overcome them, so that we could reach a level of equality and respect for all.  His dream was that women would be given the same respect as men, and blacks would be given the same respect as whites...and people of all religions would exist together, and live in harmony.  Have we achieved those dreams completely?  I don't believe so, though we are much further along than we were when Dr. King first took up the fight.  I was reading parts of his speech, and one sentence resonated strongly with me..."I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character."  Any parent would wish for nothing less for their own children...they would want their daughters to be given the same chances as their sons, and want all their children to be considered equal to others, no matter what their race or creed.  They would want their children's character to be judged first, no matter what the differences might be.  I try my best to work toward achieving MLK's dreams, through my actions and words I direct toward others.  And I extend that dream even further, and hope that one day we live in a world where any person who lives with a disability (no matter what type of disability it may be) receives the same respect as all others.  No matter what their cognitive or physical abilities, speech, behavior or appearance may be, they are people...WE are people.  All of us want to be respected despite our differences, and accepted because of them...all of us deserve that chance, don't you think?