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?  

Hopes for 2013

This year has been one hell of a roller coaster ride, I must say!  A lot of things that I was unprepared for happened, making me take stock of things.  It seems silly to even say that I was not ready for so many changes, at least the ones that had to do with my CMT...such as having to permanently retire because of its progression.  You would think I had become an expert, ready for all the twists and turns this disease leads you through.  But I'm not an expert, as much as I'd like to think I am.  In a lot of ways, I'm like a person who finally passed the 'height requirement' for this ride, only to find out that drinking a 16oz grape-flavored Big Gulp before I got on, was a REALLY BAD IDEA.

But those unexpected changes have led to others, and in an effort to find myself again I have found the keys to doors I thought were locked...or at least, the doors were too heavy to open.  I was able to tap into the creative side of myself that had become dampened over the last few years, focusing on artwork and writing in a way I had never done before...in the past, it was always too easy to put those things aside, because of other priorities.  Now all of sudden I had all the time in the world to pursue these creative new paths.  Sounds great, right?  Almost novel-worthy...I just wish it had happened that smoothly.

I pride myself on my honesty, however, especially on this blog...and it didn't happen smoothly.  The new path is rocky and a lot of it is still dark, so I'm doing my best to navigate...and part of me still wishes for the old me who seemed more independent, if only because that 'me' could collect a weekly paycheck.  That roller coaster I mentioned?  It's a doozy!  There were a lot of tears and emotions I had in the beginning; mostly fear.  The tears have pretty much subsided (for the most part,) though the fear is still there...it kind of lives in the back of my brain, lurking there in my subconscious.  Every so often it makes itself heard and makes me hold my breath while it whispers to me...what does my future hold?  What will happen if my health...really, you get my point.  But I will never get complete answers to those questions, so the best I can do is have faith that everything happens for a reason.  And then I grip my paint brushes tighter, and turn the whispers off.

Along with my own roller coaster experience, there have been things happening in the world around me that are also out of my control.  Some of these things have been bitter sweet, such as my oldest niece making the decision to become a Marine...she left for boot camp before Christmas, and my worries for her safety mix with my tremendous pride in her bravery.  I have no doubt that she will succeed and go far in her future endeavors, and as much as I'd like to tie her to a chair until she decides to become an accountant, I can't do that...again, I just have to have faith.  Outside of my own family and my own worries however, are the tragedies going on in our own country...the turns and loops on this ride growing ever more dangerous, the tears flowing harder than before.  Again I know I need to have faith that everything happens for a reason...want that faith desperately, in fact.  Though I find myself having to reach further for it now...I have been shaken on this ride.  And so I have painted...and painted...and painted some more, because the ride is not stopping anytime soon.  It is life after all, though there are many days I just wish it would slow down and smooth out.  I haven't known what else to do but paint, hoping it would help me find that faith again...find the answers I'm searching for.  The painting below is the first one that came about because of my searching, though I can't say I have any more answers now than I did when I started creating it.  It is called When Angels Weep.

My hopes for 2013?  There are many, of course.  I hope I find answers about my future that are more concrete than wisps of cotton candy.  I hope I find healing for this disease that is surprising and unexpected, and manage to raise CMT to a new level of awareness than ever before, in the meantime.  Those hopes are a given and will always be there, and I would be lying if I said that the recent troubles in the world have made them disappear altogether...though they have dulled as of late, and have joined the fears that whisper in my ear when I least expect it.  My hopes for America seem somehow more out of my reach than the hopes for myself...that things start to make some sense again.  That the answers which are needed for our country to find healing are found, and the decisions for peace are made.  I hope...I hope...I hope.

My latest painting was born out of that hope, I suppose, in an effort to create life in a world that remains so tenuous.  It's a 'tree of life' painting, called Life Grows On.  I created it because I wanted to put something peaceful out into the world; something growing.  I am also hoping that doing this will help to remind me of the positive experiences of 2012, and that my faith is soon caught tight in my grasp once again.  I wish you all the same...and a Happy, healthy New Year full of laughter, life and love.  May 2013 be a wonderful year for all of us!



Happy New Year!

Memories That Make You Smile

This has been a very strange year, I have to say.  Lots of changes, some good and some bad...and the recent tragedies that put everything into perspective.  It reminded me of what is most important, and taught me what to never take for granted.  Most of all, it has given me an almost uncontrollable urge to find laughter and happiness wherever I can, because those moments will help me get through all the rest...or so I continue to hope.

This isn't really a Holiday post.  I haven't actually celebrated Christmas yet with my family, due to some family illnesses...nothing major, though enough to postpone the holiday celebrations.  Normally that would be driving me CRAZY, not because I am desperate for presents, but because I truly love to give presents to other people, and see if I can make them smile.  But after the way this year has gone, especially recently, I'm not really worrying about it...the celebrations will happen eventually.  And the snow finally hit last night, giving us another reason to postpone things.  Though today's snow is nothing compared to storms of the past, and the ones that are still to come.  I live in Upstate NY...bad weather is a given in this part of the country, unfortunately.  If I were more adventurous, I'd learn how to ski or snowboard, if only to get some enjoyment out of it...though because of the CMT and balance issues, somehow strapping sticks of wood to my feet and hurtling myself down a mountain, doesn't seem like a very good idea.  Go figure!  So instead I stay inside as much as I can during winter, only venturing out to clean off my car when needed.  I've already done that today, and may have to do it again before the day is over.  In the meantime I was reminded of a funny story...and since I'm searching for ways to make myself laugh and hoping I can provide that for others, I'm going to share it.  I may have already posted this story before, so if I have please bear with me.

As it's something I live with daily, I often talk about ways to help myself adapt to life.  I've shared tools that I use to complete everyday tasks, because of limited function in my hands...which is often a reality when you have CMT.  As I have lost more hand function over the years (and I live in an area where snow, ice and cold is also a reality,) I've learned what activities are the hardest.  Using keys successfully is at the top of my list...and even though I once bought an adaptive tool to help me turn keys, a lot of them didn't fit, so the tool ended up in a drawer.   Getting into my home is hard enough, but the most difficult is opening my car.  My Honda is 11 years old, and the key doesn't turn as smoothly as it should...add 10 inches of snow, ice and freezing cold to that list, and opening my car is like trying to break into the Pentagon with a Q-Tip.  MacGyver could probably do it, though I'm no MacGyver!  And when my hands are frozen solid, what little function I have left is useless to me.  So a couple of years ago I asked my parents...no, BEGGED is more accurate...for a remote car starter/door unlock-er, eliminating my need to open it with a key.  That was my birthday present, and it's probably the most useful gift I've ever received. 

The funny story I mentioned is what led me to beg for that item.  A winter or two ago the weather was especially heinous, making key usage all the more difficult.  On one particularly cold day, I stood at the driver's side door, desperately trying to get my car unlocked using both hands to turn the key...but the lock just wasn't budging.  I had already spent the morning dropping things and getting frustrated, because once my hands reach a certain level of cold, nothing but a hot bath will warm them up...but I had an appointment, and no time for baths.  After about five minutes of trying to get my car open (or five lifetimes, I'm not sure which,) I just snapped!  I started screaming at my car as if it were a living thing, right in the middle of the parking lot...yelling obscenities only a drunken sailor would use (I'll spare you the actual words.)  My rant continued, and I even punched the car a few times.  I couldn't help it--I was PISSED.  As I drew breath to continue my raving, I heard a pleasant voice say "Hi Christine," which stopped me dead in my tracks.  Oh, crap...I thought, and slowly turned my head.  Standing there was the office manager of the complex I live in...a very nice woman, who surprisingly still likes me.  Next to her stood a prospective new tenant who had come to check out the apartment directly across from mine, unfortunately for him.  With a look of pure horror etched upon his face and his mouth hanging open, he stared at me with fear...somehow I doubt he had any desire to move in!  The level of embarrassment and blushing that burned my face at that point, could probably have melted my car into a giant puddle...making the need to unlock it nonexistent.  Needless to say I finally got the car open and managed to drive away, all the while trying to blend into the background and pretend I didn't exist.

I've learned the hard way that you've got to laugh at the ridiculous moments, because life will certainly throw you a lot of them.  Laughter helps you deal with the crazy times of life, and with all the other times that aren't so funny...and if you can't bring yourself to chuckle over the insane moments of your own life, watching a comedy about someone else's can certainly be helpful.  I hope at least I've made someone out there smile and laugh today...if so, my work here is done.  And I say this with complete certainty; any of you readers who have hand issues, whether they come from CMT or not--consider getting a car remote if you don't already have one...especially if you live in NY.  Trust me...you'll never regret it!

Hold Your Loved Ones Close

Time speeds by, sometimes in a flash.  Before you know it the years have passed; the children you've held in your arms are cradling you now, in theirs...roles are reversed, and there is never enough time.  Never, EVER enough time.

This was going to be a post about hate.  This was going to be words about people who so clearly needed help but didn't receive it in time; and the backlash of confusion and destruction that was the outcome.  Though how can I put my feelings into the right words and have them matter...can I ever say enough to make that happen?  My blog is mostly about living with the types of struggles I face on a daily basis, because that is what I know.  That is my reality, no matter how often I wish it weren't.  I can't face this unknown reality...it makes no sense to me; like mismatched puzzle pieces that build nothing in the end.  When I say I cannot imagine the torment the families of the recent victims in Newtown, Connecticut are experiencing, I really mean that...I CAN'T IMAGINE IT.  I'm sure the families felt the same way just a short time ago, when their loved ones were still safe and they could hold them in their arms.  I know that is a reality they would gladly embrace again, if only given the chance.

Stories like this one bring tears to my eyes, and a pain to my heart.  I believe it is important to remain positive, pay it forward and put as much love out into the world as you can...it is the only way we can ever hope to counteract such violence and hate!  And then something so tremendous, so DEVASTATING happens, and the path grows dark again.  We shake our heads, we shed our tears and pray...and hopefully hold our loved ones closer and give thanks that they are still here.  We appreciate who we have in our lives all the more, realizing how precious and how short life can truly be.  And tomorrow a new day starts, and we do our best to move forward.

I don't know if there is something I am missing...if there is something I should be doing that I am not, to make the negativity in the world grow smaller.  I know I feel inadequate right now, and always do during such times.  As I said before...this was going to be a post about hate.  Though in all honesty, I can't go down that path.  It is just too dark to navigate, with huge potholes I can't even begin to crawl out of, or hope to avoid.  The most I can pray for is that the light will grow brighter...for the shadows to recede, the monsters to fall back, and for things to make sense again.  I can hope that when the light of day is at its brightest, we remember what happened...and we take measures to keep the light shining, so that this type of negativity no longer holds power.  And I can love.  With abandon, with honesty, and with my whole heart...so that everyone who is important in my life is held just a little closer, and loved just a little more.  Each and every day.

A lot of my Facebook friends have been posting prayers and words of sympathy, to keep the light shining...to help those dark shadows recede.  I am sharing this one in particular, because it resonated with me the most.  My prayers go out to all the families in Newtown who have suffered and lost during this most recent tragedy...may they make their way through this darkness, and find some peace.  And may we all see that time grows ever shorter, and hold our loved ones close while we can. 

Amazing Results!!

The math is done, the tally is in...the Starry Night event is over!  It was a huge success, more so than I ever expected.  As stressful as this whole process has been, things have also been falling into place--volunteers agreed to help and joined our committee, food and items were donated, friends and family came out to support us...each little step leading up to one wonderful, successful night!

The result?  It's staggering!  Before the main event happened we were given a grant by CMTA's board member Elizabeth Ouellette, as part of her 'Birthday Wish'...whatever funds we raised would be doubled for the CMTA.  We had high hopes, and weren't disappointed!  We had eight sales of artwork and lots of sales of beautiful donations, and at the end of the night we raised $11,064.00!  Can you believe it?

And so for the past couple of days I've been tying up loose ends, matching receipts and adding the final total...and decompressing at the same time!  I am thankful to have been a part of such a great cause, and I am very thankful it is finally over...for now I feel I can get some much needed rest.  Three of the paintings sold were pieces I had created, which is a great feeling!  My piece, Star Light, Star Bright, is shown below.  Though what is even greater was witnessing all the volunteers, Art de Cure members, CPO office staff, and event guests showing their support and helping us to reach our goal.  Again I say a big THANK YOU to everyone who helped us raise so much money for the CMTA!

So with that final Adieu, I'm signing off for now...with a big yawn, and a happy heart.  I wish everyone a starry, starry night!

ADDENDUM:  Late donation of $25...brings us up to $11,089.  Every dollar counts; every ounce of support matters!  The time is now to END CMT...and we're well on our way!