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!

  

Starry Night Update: What I am Thankful For!

As Thanksgiving is soon upon us, I thought it required a post about what I am thankful for...and there is a lot!  However, there is something else on the train tracks which is bearing down on me, and taking a lot of my focus...our upcoming December 7th Starry Night event, at the CPO gallery (Clinical Prosthetics & Orthotics building--149 South Lake Avenue, Albany NY.)   I have been busy collecting donations, meeting with volunteers, finishing last minute paperwork...and basically trying hard not to lose my mind!

So today I took a moment to breathe, and the thought popped into my mind: What am I thankful for?  Well, what I am always most thankful for are the friends and family in my life.  I have been blessed with people who truly care about me, and they show me everyday.  I have so many people who have been willing to help a cause that is near and dear to my heart; raising awareness of CMT, and funds for the CMTA's STAR Research Program.  And as I prepare for Starry Night, I can truly see just how much my friends and family care...through their generosity, and their actions.  I have been collecting items for months, and still have others coming that I couldn't photograph in time for this post.  Not only that, but other friends and family members have donated their time and efforts to install the CPO gallery and make it a success...and still others will be donating food and refreshments for the Starry Night event, not to mention their time in helping it run smoothly!


Baby Bundles (Blanket and Bib) by Carol Hook

I wanted to share some of the beautiful items I have collected, that will be part of our event...I did my best with the photographs, though believe me--these items are more spectacular in person!  And as I gathered everything together to take these pictures, I started thinking about why these donations are so special to me.  You see, I live with CMT everyday...and it is often difficult to see beyond the disability, and focus on other things in my life.  And during those difficult moments I feel like I live, eat and breathe CMT.  That's not the way I want it, believe me...though at times it's hard not to feel like I'm stuck in something that is unfortunately a big part of my life.  And part of me worries that when I am stuck, I may become annoying to those around me...that they may think Oh, no...she's TALKING about it again!

Batik Quilt by Kelli Clemens

 And if some of my friends and family thought those things, I actually would understand.  Sometimes I get annoyed at myself when it seems like I can't have a thought run through my head, without having 'CMT' attached to it.  That's a struggle I'm currently dealing with, as I attempt to find other things outside of myself, and this disease.  And I will get there.  In the meantime, no matter what people in my life may think when I start discussing my CMT, all of these beautiful items proved something to me; they love me and care about me, and want me to be happy and healthy...those thoughts trump all the other ones.  And when I asked for donations, they didn't even hesitate to share their time and their talents with me...they know this cause is near and dear to my heart, and that's all that matters.  Now, how could anyone look at such generosity and not be thankful?      


100% Cotton Baby Sweaters/Hats by Christine Fontaine 

Now keep in mind as you are looking at these photos...this is only a small highlight of what will be featured at the Starry Night event.  I am not the only person who has been collecting donations!  There are many other items for sale, not to mention all of the wonderful artwork by local artists.  There will be a silent auction and also a raffle, for the chance to win four Disney "hopper" tickets for a day (which means you can "hop" from park to park and are not just limited to one.)  And all money raised at Starry Night will benefit the CMTA, and will help to find a medical treatment/cure for CMT.  What could be better than that?



Scarf and Earrings by Susan Rivers

There are other things I am thankful for, as I prepare for this event.  For one, the opportunity to do a fundraiser for an important cause such as this...if it weren't for the people at CPO opening their doors to the Art de Cure organization, I wouldn't have the chance to help the CMTA in the first place.  Now as we move closer to finding that cure, I can feel like I had a part in that!  Most of all, I am thankful for my co-coordinator, Melinda Lang.  She shares my stress in making this event a success, and all the work that is involved in making it happen.





Jewelry by Al Davis

All of this has shown me something...I am very fortunate to have a lot of support in my life.  That is important for anyone to have, though I think it is even more important for someone who lives with a disability, and/or a chronic illness.  When you do, you can reach very low points in your life...sometimes it can seem as if no one else shares your struggles, or understands your pain.  Over the past few years I have found great support through the CMT support group and on-line community...I wasn't always aware, though, that I already had a great support system within my own family, and among my own friends.  Preparing for Starry Night has helped to remind me of that, which is always a good thing!



Jewelry by Kate Tumbleson

If you are looking through these photos and know that you can't join us on December 7th, don't despair!  Raffle tickets for the Disney prize have already gone on sale ($25 each,) and if you are the winner, we will contact you after the event.  And you can always leave me a comment if one of these items catches your eye and you are interested in purchasing it, but can't join us for Starry Night.  Want to help more?  We also have a link you can click on to donate to the STAR program...before and after the event.  There are many ways to show your support!  That link is: 

Gift Certificates for Massage, Acupuncture
and Facial Acupuncture:
Christine Zido, LMT
Lorinda Hilmar-Kimball, LMT
Cassandra Dugan, LAc
Debra Singer, LAc

www.cmtausa.org/index.php?option=com_jdonation&view=donation&Itemid=132

For Disney tickets:
https://www.cmtausa.org/index.php?option=com_jdonation&view=donation&Itemid=152

Fuzzy Scarves by Nancy Clarkson

Finally, let me say thank you to Dave and Elizabeth Misener, for opening your office to us, and allowing us in...as stressful as it can be at times, together we are truly making a difference!   Thank you, M&T bank, for sponsoring us and supporting our cause.  And last but certainly not least, let me thank all of the volunteers who will be helping to make our Starry Night event a huge success: Jackie Watsky from Art de Cure, Joanne Van Genderen, Donna and Rich Piche, Nicole Alonzo, Jessica Cameron, and Miranda Rand.  Without all of you, we wouldn't be able to pull this off!   And if you are still planning on donating an item, don't worry...I'm still collecting.  Even if I couldn't post a photo of your item, your generosity and support is much appreciated!  This year has certainly involved a lot of changes for me, and they were not always welcome ones. ..though the harder changes have often lead me down better paths I never expected to travel.  And in the end I have managed to learn something very important...I truly have a lot to be thankful for!  Have a wonderful holiday, everyone!

   

The Need to Laugh!

I have something to confess...I am a planner and a list maker, sometimes to the point of madness!  I make lists of what I need at a store like most people, though I go beyond that and map out where those items are...and then I go even further, and re-do my list so that my errand running is broken up into sections, starting from one end of the store and finishing at the other.  Then and only then, my shopping trip can become as quick and painless as possible.  This is only attainable, of course, when a store is familiar to me--if I've never been there before, my first shopping trip is often very tiring...luckily I can quickly memorize a store's layout, so any future visits there will be much easier!  Obviously if I work this hard to make shopping a 'painless' activity, I'm not a "window shopper"...and even if I had all the money in the world, I doubt shopping would ever be all that fun for me.  Okay...it might be a little more fun if I could just shop for things I wanted, rather than necessities, though I'd probably still map out my list before I left the house!

Maybe you're reading this and thinking I do that too...no big deal.  (One can only hope!)  Or maybe you're thinking Ooohh, this girl's stranger than I thought! and really, I can understand that response.  I actually do think it's a little strange to go through all this trouble just to run an errand, but it's the reality I live in.  There are always other factors in my life I have to consider; like the amount of time spent walking around, what I can and cannot lift--whether or not I have help when I need the heavy items (like cat litter,) if there are places I can sit down if I need to...they are all just a part of my existence, and when I do push them aside for the sake of being spontaneous, it usually involves some sort of payment on my part.  And payment can involve pain...which to me is very expensive!  So in an attempt to keep my payments low, I plan...and plan...and PLAN.  And I become too much of a control freak over the activities of my life, unfortunately.

The planning is understandable, even if it's not something you are used to.  And I am thankful for the fact that I can be this organized...I think this ability has helped me a lot throughout my life; when I was a teacher and now as a writer.  But in the same respect there are things about it that bother me.  That word I used a moment ago--Spontaneous--springs to mind.  I want spontaneity in my life...there are times when I am so bored with the lists and the planning, I even crave it!  But I think in an attempt to control as much of my life as possible (when there is SO much that is out of my control,) I have moved far away from spontaneity, and I can't even see it anymore.  I wonder how I can get that back, without somehow hurting myself in the process?  I wonder if my brain will even allow it in my life anymore?   It seems when any new activity presents itself, before I can just "run with it" something pushes the 'planning' button in my brain, and off I go.  I have lists of what to do and what NOT to do, where to go and where NOT to go, and how to accomplish this "spontaneous" activity with as minimal discomfort and trouble as possible...and these lists are created in my head before I can even grab some paper.  Being able to paint and be creative has definitely helped me get some spontaneity back, though sometimes it feels like when I set the brushes down I am back in list mode, whether or not I want to be there.

I think it also makes the things which crop up that I can't change, more difficult to deal with.  And having a degenerative disability like CMT means that things are going to crop up, sooner or later...cause that's the name of the game!  And no list, no matter how organized, is going to change that.  I do my best with these situations, adapt where I can and try to accept it when I can't...and I continue to search for healing wherever I can find it.  And sometimes I do find healing...and sometimes I don't, and my search continues.  Yesterday I was fortunate to have lunch with my good friend (and fellow blogger) Melinda, and one of the things we talked about is sometimes feeling like we just live in our CMT...it's there when we wake up in the morning, and there when we go to sleep.  This disability has robbed us of many things, and I realized yesterday that our spontaneity is one of the things we've lost.  Maybe not completely, but in a thousand tiny little ways that often add up to a rigidness we don't really want.  Seriously...it's like an unwanted, crabby house guest that won't go away!

That being said, I also experienced something else yesterday...I got to relax and 'let loose', and just LAUGH!  That's probably one of the most spontaneous activities you can do, I think...that deep, come-from-the-belly kind of laughter that bursts from your lips before you can stop it.  It's not only spontaneous, it's very healing!  And Melinda really got me laughing hard yesterday, which is something I needed...and I truly thank her for that.  The good thing is, I haven't lost my ability to laugh...and there are never any lists involved!  So I will continue to face my CMT demon, and hold on strong to that ability...for I am determined never to lose it.  Ultimately, laughter will continue to heal me, and keep me standing strong!

Reflections On the Year

Another birthday is on the rise...YAY!!  Yes, on Sunday I will be 41 and fabulous, and able to celebrate!  As I started looking forward to this occasion, I also turned back to reflect on this past year...which has been full of changes, some good and some not-so-good.  I was dealt the blow of early retirement due to my CMT, and forced to find a new path.  In my search I rediscovered my artistic side, and have been able to use my talents to raise money for the CMTA, which has been awesome!  That, along with this blog, earned me the CMTA's 'I Am A Star' award, which was a tremendous honor...and even though my recent blow of negative blood test results (to determine what type of CMT I have) were upsetting to me, I have worked hard to continue moving forward. That is often how life happens, full of ups and downs...and yet I am determined not to focus solely on the bad things, which tend to scream longer and louder in order to grab my attention.  The good things that happen to us in life often lie quietly until they are remembered at random moments, and sometimes we manage to forget about them altogether.  They deserve the spotlight...and they deserve recognition.  Remembering the good memories is what keeps the smile on my face, after all!

As writing is my way of thinking things through and exploring new avenues, I decided to try a writing exercise I read about on a 'Neurolmuscular Diseases' site called Bella Online.  This site provides all sorts of information about living with ND's, though I never expected to find an exercise that would get my creative juices flowing!  This certainly isn't limited to one type of writing, and is just another tool that opens your mind and expands your imagination.  The exercise prompts you to choose a word and circle it, and from that word write any other words you can think of, drawing a connecting line to each one...without stopping to think about why.  One word leads to the next and some branch off on their own, leaving you with the makings of a short story, or even a poem.  Pretty straight forward, though where it leads you may be surprising.  And so I grabbed a little piece of paper and wrote my first word, 'Birthday'...a word I actually didn't use in my final piece, because it didn't seem to fit.   This is what my word graph looked like at the beginning:
 

 And from these words, I created this poem about growth and change, and the passing of milestones.  The poem came out a lot more serious than I was intending, though like I said; where this exercise leads you may be surprising!

 

Moving Forward 

With every year, every milestone passes.

Moving forward, ever forward...

I see each new day as a gift.

 

I embrace each new year as it comes;

Embrace it completely...

With abandon, with hope, and with faith.

 

For as the clock of age ticks by,

Wisdom also grows...the wisdom of life,

The wisdom of experience.

 

Lessons learned, and lessons earned.

I wear each lesson as a badge...

Badges of honor adorn my chest.

 

I'm proud of these badges!

And proud of the scars I got for earning them.

They have molded me; they have shaped me. 

 

As I grow older my scars grow...

The physical ones stretch and change;

The emotional ones become more flexible.

 

I do not hold tightly to my younger self...

I embrace my future, and welcome change.

For change brings opportunity.

 

Opportunity brings new life,

New life brings healing...

And healing brings wholeness!

 

With every year, every milestone passes.

Moving forward, ever forward.

 

And I see each new day as a gift!

 

 

 

As always, in writing this I was reminded why my birthday is so important to me...it's a way of marking time, reviewing my experiences, and remembering the obstacles I've conquered! So as that milestone comes I will remember the good times during this past year, such as the many artistic opportunities that have come to me...I will remember how I've become a part of the CMT community, and have been able to give back in so many ways.  The other memories are still there, of course...though I will try and remember what I've gained because of them, as my way of dealing with the changes.  And I will celebrate in style, while I eat gluten free pizza...YUMMY!  Have a great weekend, everybody! 



It's Hip to be Square

No, I'm not going to entertain you with the 'Huey Lewis And The News' song, although I always did like their music...that title just came to me as I was driving home today.  This has been an up and down month as far as feelings go.  Good things accompanied by the not-so-good.  I've been busy preparing for our 'Starry Night' event on December 7th, to raise money for the CMTA's STAR research program, and collecting donations from friends and family...which is wonderful!  I have a great support system, and it's times like this where it really shows!  Though the event preparations also create stress, which tends to rear its ugly head in the form of back pain and headaches...you know, fun stuff like that!

And right after I had written my post I Vote for the Ups about all of the great things that happened in September, I received some bad news...the very next day.  The Neurologist called and told me the results of my blood test--that no, I do NOT have type 2A.  Which means I'm back at square one, trying to find out what type I do have while figuring out how to pay for future blood tests that I can't afford...and knowing that in the next few years when the CMTA finally comes up with a medication that will stop the progression of type 1A and 2A, it won't help me.  I will continue to be as patient as possible while my search progresses, and one of my CMT-blogger friends gave me some ideas on how to proceed from here, which was a big help.  But I'll admit...I am very disappointed!  I really wanted a 'Yes' on this one...not to mention the fact that in a life where I often feel like everything is out of my control, I just wanted to have the mystery solved on this ONE THING.  So that I no longer felt like I was sitting in the dark and couldn't find a light switch.

On top of all of that I've been trying to finish all of my Christmas Presents, because I'm anal retentive about such things...and I like to be finished well before the holidays actually begin.  So armed with a 60% off coupon that was only good for today, I travelled to Jo-Ann Fabric and Craft Store to get the next item on my list.  As I finally reached my destination, I saw the crowds of people and tons of cars searching for parking spots...uh-oh, I thought to myself, wondering if this was such a good idea.  I'm not good in crowds, mostly because of my balance issues...people in general move too fast for me, and the more people there are the more chance of getting A. Knocked over, or B. Stepped on, or C. BOTH.  But I had come this far and had a pretty decent coupon, so I decided to grin and bear it.  I made my way into the store, and then my worries grew...the check out line was not building up my confidence about this whole adventure, as it stretched almost to the doors.  Did I mention why I'm not good in crowds??  Better add another reason to that list: D. Long lines.  I can't stand still for very long, even if I have something to lean on...everything tenses up, especially my back, in order to keep myself steady and balanced, and on my feet.  And when you place tension on an already taxed muscle, the end results aren't very pretty.  But that 60% off coupon forced me to keep going, in the hopes that maybe...just maybe, the line to check out might soon be shorter.

All I really needed was one type of fabric, which I found in a matter of seconds...and then I turned the corner and saw the numerous lines to get material cut, and it was like Armageddon!  Snakes of people wound in different directions from the fabric counter, numbers clutched in their sweaty hands, waiting their turn.  For me at that moment, it was pretty much over...there was no way I could ever manage to wait that long on my feet, like everyone else.  Disappointed, I put my fabric away and left the store.  Driving home I began to think about today's occurrence, and the number of similar moments that came before it.  I realized that there's never been a time in my life where I didn't feel like a square peg, trying to fit into a round hole.  When I was a child, it was as if people were attempting to pound me into this round hole, and I just wouldn't quite fit to their standards...though I didn't know why.  It wasn't for lack of trying on my part...I just didn't fit.  Now I know why, and even though it's not really important to me that I don't match up to other people's expectations, sometimes at the end of the day I'm still left feeling...bruised.  And sometimes I just want to join everyone else without repercussions, but I don't...because I know what the bruises feel like.

I don't mean for this post to sound depressing...as always, there are upsides to everything.  Being 'Square' has made me creative and artistic, sensitive and understanding...I've become the individual I am today because I don't fit into normal standards.  When you view the world from a different angle, it changes your perspectives, often for the better.   If I'm being perfectly honest, sometimes I get very tired of the bruises life can cause...and even though I know there's an upside to it all, sometimes I just want to be round.  But I am grateful for the perspective I've gained from over here, and the life lessons it has taught me.  It pays to be different, sometimes in the smallest of ways.  In other words, it's 'Hip to be Square'!  

 

 



 

CMT Interview on Blog: Living Well with CMT

I've truly enjoyed this past awareness month for a lot of reasons.  I've met even more people from around the country who also live with CMT, found some new blogs to enjoy...and now I have been interviewed on Melinda's blog: Living Well with CMT (Charcot Marie Tooth) Disorder.   Check it out...you're only one little click away from a great blog, and a great interview!

Thanks for having me as your guest, Melinda :-)

Living Well with CMT