Courage to bloom

The past four years I have been under the impression that I was "managing" my
MS, when in truth I was trying to ignore it.  I pushed through, stiff upper
lip and all. I thought if I just plowed through life, running full steam
ahead that I would "beat" this disease.  I pushed it out of my mind, as best
I could, trying to prove that this could and would not change me or my life.
My parents always said I had to learn things the hard way...and "the light (finally)
dawns on Marblehead". 

Last summer, after getting some test results back my neurologist suggested
that I consider changing my course of drug therapy.  Over the past months since I have
been trying to decide if this is something I want to do.  A very smart person
in my life asked me a question I had never asked myself..."what is your plan
for managing your MS?"  At first I was honestly insulted...I got up every morning
and faced the day, I wasn't crying a pity party in my soup. I was forging ahead! 
I had a plan...to do what ever my neurologist told me to do...that's why I go to
a specialist,right?  I thought I had done pretty good considering the circumstances. 
I was doing the best I could...or was I?  I was then asked..."is that it?"  
I started thinking and I had to admit to myself that I really didn't have a plan. I was in denial.

According to the 5 stages of grief "Acceptance means that you've grasped the reality of your situation
and you're ready to incorporate that reality into your life. " Hmmm...I think in the
back of my mind acceptance meant that I was defeated.  I have really struggled with
this idea.  To be honest I am still struggling with it.  Ever fiber of my being has been telling me
that acknowledging this is wrestling with defeat and defeat is unacceptable.  But I had to admit
my plan wasn't really working anymore (if it ever did).  So I started to do what I do best, research.
There is so much information out there it is overwhelming and intimidating.  Where the hell do
I begin?  Since I now realize that relying solely on the medical community is no longer an option for me my new plan is to look for ways to attack this on all fronts.  It's a necessary turn in the road. 
I know it won't be easy but I am going to try to keep my mind open to all that is out there for me
to tap into.  I have to remember that this too is moving forward, the game plan has just shifted...but I am still IN the game. 

 

To that very smart person in my life...thank you.  Many times it's hard to see the forest
through the trees and it takes someone with courage to point that out.  Thank you for
challenging me to be the best person I can be and thank you for reminding me that it is
always worth the risk to bloom.

"and the day came when the risk to remain tight in a bud was greater than the
risk it took to bloom"  Anais Nin

Endurance, perserverance for the race we have before us

What a fantastic year it has been!  2013 brought so many wonderful experiences and we made so many amazing memories!!  As many of you know I got married this past September.  It’s been a whirlwind.  God has truly blessed me…growing our family to five daughters, giving us the means to expand our home and add 3 additional bedrooms, listing and selling my townhome in just 5 weeks, and of course most importantly finding the most incredible man to spend the rest of my life with. 

It’s been 4 years since I was diagnosed with MS and my life has seen many changes.  Some, as you can see from above, have been more than I could ever have dreamed of and others quite frankly have been a nightmare.  The physical and cognitive changes that MS has made to my brain, therefore my body, can be quite discouraging at times.  The physical symptoms have relatively stayed the same; numbness in my limbs, spatial issues, balance difficulties, pain in my back that has been not so lovingly named the” MS hug” along with extreme fatigue.   Cognitively, I have a pretty bad scar on my brain somewhere that has caused great memory loss.  I have lost complete conversations.  I have missed appointments that I didn’t remember scheduling.  I have forgotten some of the “little things” that make up the special memories of time I have spent with loved ones.  While there has been many a dark moment for me physically, emotionally and cognitively I can truly say that I am blessed. 

Every day I get up and out of bed I am thankful.  Thankful for the ability to walk.  Thankful for the ability to see.  Thankful that that I have been given a new day.  Thankful that I have true JOY in my heart.  Thankful for my amazing husband.  Thankful for our five absolutely beautiful, inside and out, daughters.  And believe it or not, Thankful I was diagnosed with MS.

I believe we are all given different races to run.  I believe we all have a purpose. I believe God Almighty has a plan.  I believe his plan is for me to share my story with others.  To encourage, lift up and give hope to those who may not feel as if they have any and to be an example to my daughters of perseverance regardless of life’s challenges. To be a witness to the amazing things God has for all of us, for even when we are at our lowest, He is working miracles for us. 

I share all of this with you so that you may see the HOPE I have for my future.  The HOPE I have that as many come together as one we will find a CURE for this disease.  I am asking again this year for you to share your blessings with me.  I ask for your support as our MS Walk Team, the Village People, fundraise to find a CURE and to support those with MS.  I am asking for you to be by my side as I run the race set out before me. 

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us” –Hebrews 12:1-2

I thank you all from the bottom of my heart

Jo

http://main.nationalmssociety.org/site/TR?pg=team&fr_id=22866&team_id=363143
  

 

happy, happy days

After having lunch with a good friend of mine last week, I was reminded that I need to do more writing. We had not seen each other in some time and took a couple of hours to catch up.  During that time I was able to share all the wonderful things going on in my life.  She has told me on more than one occasion that my writing has lifted her spirits...she referenced my stiletto post from last year.  This friend and I have had an instant connection since we met.  We have not know each other for years and years, yet there is something intrinsically there that draws us close to one another.  She has seen me during some of the lowest points of my life.  As I was sharing all the good things that have been happening over the past months she was beaming.  Literally smiling from ear to ear with tears in her eyes.  You see, she has never been witness to my happiness.  She has never see my eyes light up, the love in my heart and the joy that is now engraved into my soul.  She had only seen the pain, sadness and heartbreak.  In seeing my smile, she too could be happy.  That day she was having a tough time of her own and that's when she told me to get back to writing.  She told me she drew strength from my writing, especially the stiletto post, which she had just read that morning (before she knew we were going to meet).  She told me that it was important to share my joy after I had shared so much heartache.  She reminded me of a conversation we had when I asked her if she thought I would ever be happy...we both now know the answer is yes. 

So here I am...starting up again.  This time with peace, joy and love in my heart.  As you read this, if you are struggling with something in your life, please know that "tough times never last, tough people do" (thanks Gram, after 25 years I still hold these words close to my heart). Hopefully my darkest days are behind me...for right now my future is bright like a sun shiny day!  I am so very grateful.  When I was coming out of that dark place I promised myself to live my life to the fullest, with no regrets.  Thankfully God had a plan for me.  A plan so wonderful that I could have never dreamed to come true.  I have found a wonderful, kind, generous, loving man.  He knows all about me and my history. He sees the scars.  He has seen the deep bruises that needed to heal.  He can find the beauty in them and in me.  He sees the good in me, actually he sees the great.  He has made me a better person and I think I have done the same for him.  We are truly partners.  Working towards the same goal...enjoying every day, taking chances and living with no regrets.  We are getting married in 20 days time, embracing each other and running toward our future, careful not to wish a day away.  Together we will bring a total of five daughters into our family.  Five sweet, wonderfully beautiful (inside and out), unique girls.  We are blessed beyond words. 

So as this new journey begins, don't worry...those stilettos will be on my feet every chance I get.  I promise to share these wonderful times with you.  I thank you all for standing by me in those really dark, ugly times.  I hope you will feel the love and happiness that fills me everyday.  I hope that it makes even a small difference in your life.  I hope your heart is touched with joy and if you are in a darker place, know that their is hope, as long as you have faith. 

words...

I've been off this grid for a while...missing my outlet of words...

If you have read this blog before you know my story...it's like anyone else's...full of words.  I've been trying to come back to this place to write, to release...yet it's been difficult to find the words.  Like so many of you my life has been upside down and all around...I've written about dark places.  I've written about finding light.  I've written about blessings.  I've written about pain.  I've written about love lost and love found.  I've written about beauty and I have written about ugliness.  Why has it been so hard for me to come back and write more?  Have I been afraid to share what's on my heart?  Have I decided that some things are better left private?  Or have I just not been able to find the words? None of those questions on their own holds the entire answer...however when combined I can see the answer.   

I was not sure how to "re -enter" my own writing space...writing that sentence is suprising to me...afterall it's MY space...these are MY words...I guess it is like anything else...if you venture off the path long enough you may lose your way. I wouldn't say that I have been lost these past 5 months.  I actually think that I have found myself...off the beaten path...
It seems I just could not find the words to share the experience.  Maybe this experience was one not meant to be shared? 

The reason behind my absence really isn't important.  What is important is that I know I want to write again.  While the past three years I have been journaling a lot about my struggles and my source of strength, I am turning the page and seeing a new chapter to write about.  I am excited to see where this new chapter takes me.  I look forward to sharing new experiences with you, perhaps in a different way...

So if you are a returning reader and you see a change in style, remember the author is still the same.  The dreams are still the same.  The book is even the same...the page has just been turned.

-JAH


Words they'll try to shake you
Don't let them break you or stop your world
Stop your world from turning 'round
When words keep you from feeling good
Use them as firewood and let them burn
Let them burn, let them burn
-Words by Train

Old Long Ago

As I sit on my couch in my new living room, in my new house, gazing at my Christmas tree, I cannot help but think back over the past year.  I had a friend visit last night and we were talking about all the challenges the past year has brought into our lives.  As we were talking I got a little choked up.  I looked around and realized that the tears were not of sadness, they were of joy.  They were tears of survival.  Tears of picking myself up, dusting myself off and yes putting those stilettos back on my feet.  I have walked into the next chapter of my life.

God presented so many challenges to me this year.  The first six months I felt like I was treading water and boy was I getting tired, physically, emotionally and spiritually!!  I felt like a pin ball in a machine just bouncing around hitting the sides pretty hard. Battling the demons in my head. I had health issues, some that could have been avoided had I taken better care of myself.  I still struggle with the idea that my body just cannot always do what my mind "knows" it can.  

Physically, I pushed myself to limits that even I am impressed with...especially being a part of a 12 person relay team that ran from Raleigh to Emerald Isle in the Tuna 200 (yeah, that's 200 miles.)  Running first thing in the morning...running in the middle of the night...sleeping almost upright in a van that stunk of girl sweat and then running again! Such a wonderful experience with some amazing women, developing a bond that will never be broken. 

Running a 4 mile race with one of my very best friends as she achieved her goal of completing her first race.  I was blessed to be able to run by her side.  She is extraordinary and I am so proud to call her friend. 

Mentally pushing through the difficulties of selling a home over 9 months.  All the while raising three girls and a dog...and living there only half the time.  Pushing through the thoughts that we would never sell it.  Then pushing through to let the house go after it did sell. Pushing through the closing of a 7 year chapter that is so close to the end of a 20 year book. Pushing through the complications of being a stay at home mom for 12 years and working part time...then trying to convince a bank to give me a loan. The swallowing of pride. The hoops I had to go through, the humbling realizations that sometimes I just need help.  

Spiritually pushing my mind to believe.  To believe that the road set ahead of me was paved by The Almighty and I that I should WANT to follow this road as He has great plans for me.  Pushing every single day to remind myself that this was a lesson of patience.  A lesson of faith.  Pushing to forgive myself when I had doubt.  Pushing to TRUST.  Pushing to REST.  Pushing to BE STILL.  I learned a lot in this area of my life.  I learned about the power of thought.  I learned that if you think negatively, your world will seem and perhaps be a negative place.  I also learned that if you think positively your world will seem and perhaps be a positive place.  Even if things didn't go the way I planned...having a positive outlook made the really tough stuff a little easier to handle.

Although this was definitely one of the most difficult years in my life, the blessings completely outweigh the challenges (which in hindsight, were actually blessings).  I have had some wonderful people by my side this year.  Some that were there for a reason, some for the season and some who will always be there for my lifetime.  God put them where I needed them, when I needed them.  He gave me difficult challenges to overcome, yet He also gave me the tools to use to hit those challenges head on.  

Once again, my cup overfloweth I will leave 2012 with this...

Should auld acquaintance be forgot, 

And never brought to mind? 

Should auld acquaintance be forgot, 

And auld lang syne! 

For auld lang syne, my dear, 

For auld lang syne. 

We'll take a cup o' kindness yet, 

For auld lang syne. 

I raise a glass of kindness to you my friends, in love and friendship.  Cheers!

The gift that keeps on giving

 

Last week we started our fundraising efforts for my MS Walk team the Village People.  This is the earliest we have ever started.  We had a great day and evening with a golf tournament and then a live auction after dinner at my favorite wine bar, Niche.  I had a group of folks who rallied and really put this all together for me.  Ted, Jill, Leigh and Amika you all are so special to me.  We raised awareness with signs posted at the golf course, as well as speaking about the disease at the auction.  We raised money!!  Over $3000.00!!  We also raised something a little bit more important to me than all of that, we raised a sense of community.

"Love thy neighbor", so to speak. 

 

Before we began organizing this event I had never met Jill or Leigh.  Ted has been a good friend for some time and Amika, well we were just starting to grow our friendship.  These four people really put their all in for me and for MS.  They found sponsors, golfers, donors for the auction and the goodie bags along with dinner and entertainment.  Jill was able to get us on the front page of the Holly Springs Sun (an excellent opportunity to share what MS is and who I am as a mother of three with MS), as well as a follow up this past week.  There were many people I knew who were going to golf that day and there were many I did not know.  I tried to introduce myself to all of them and thank them personally, I hope I did not miss anyone!  We had a fantastic surprise that day as well.  Jill was back at the snack bar getting ready to fill up the cart.  There was a gentleman there that asked her what was going on today, with all the banners and signs everywhere.  She told him about me and our cause Multiple Sclerosis.  Their conversation ended and they went their seperate ways.  Jill came back a short time later and he was waiting for her.  He said I wanted to give you something for your fundraiser.  He handed her a check, she said thanks very much and again they parted ways.  Jill did not look at the check until the gentleman was gone and she was back in the cart with Amika.  She opened it up and saw a check for $250.00.  She and Amika tracked us down on the golf course to share the news.  I of course went to tears. 

 

Later that night we headed back to Niche for dinner, thanks to Big Mike's BBQ.  You have got to try his blue cheese cole slaw.  I died and went to heaven eating it!  The bar filled up, some people we knew and others we did not.  We were blessed to have Long Time Gone our friends Ed and Mike perform for us.  A big treat for all.  Ted thanked everyone and announced the winners (Erika Monty's family ran away with a few prizes!!).  Then Michael was given the microphone to MC the auction.  Michael shared personal information about MS, about me and about this group of people who had come together earlier in the day.  He was able to get folks that had no idea what we were doing that day and night to open their wallets and contribute to a cause they may have known nothing about and a woman they had literally seen introduced only moments before.  Thanks to Ted, Aldo and Bob for putting themselves up on the auction block!  Michael thanks for all your efforts!!

 

So that sums up our event, short and sweet.  There is a pattern in this summary.  It is a pattern of giving, of one's time, resources, talents, and of course funds.  So many people took part in the golf tournament and auction.  So many volunteered and gave from their hearts.  If you have followed this blog at all you know how blessed I have been in the past by the kindness of others.  Not because they were looking for something in return, because their hearts led them to give something of themselves.  I have a bunch of new friends in town, got to know some I already knew a little bit better and had my core group right there with me.  While I am beyond overwhelmed at the money we were able to raise and the generosity of so many, what really touches my heart is the kindness and love that was shared by so many.  Yes, I want to raise money for a cure & yes, I want to raise awareness for MS...but more importantly to me, is to share God's greatest gift...LOVE.  The Almighty was present that day, in every detail.  He encouraged all of this support. He had everyone in place right where He needed them to be, to do what He needed them to do.    There is no doubt in my mind who's Mighty Hand was held over this event.  I thank God for all of you.  I thank Him for putting you in my life, whether for a reason, a season or a lifetime. 

I leave you with this...
"And now these three remain; faith, hope and love. But the greatest of these is love"
1Corinthians 13:13

Painting a picture

 

I have been told by a couple different people to write down how I see my "new life".  How I picture it in my mind.  How do I actually see myself "happy"?  Who is with me?  Where am I? How will I know I have made it???  To finish out this post I am going to attempt to share that painted picture that is in my mind.  It comes from the heart of a dreamer and this my friends is completely honest.

I close my eyes and I feel the warmth of the morning sun.  I hear the crash of the waves and smell the salt in the air.  I feel the sand between my toes as I dig my feet in deeper and deeper.   As I take a deep breath in, I hear myself sigh with happiness.  I open my eyes and look out at the mighty ocean God has created.  I see it daily and it reminds me of times when I could not feel the bottom from under my feet.  It reminds me that each day is a gift and to accept it wholeheartedly.  It also reminds me that although the ocean waters are mighty and fierce.  The One who created them is the mightiest and the fiercest and He is by my side, just as He promised. 

As I look over the dunes, I smell the coffee in my hands.  It gives me the extra boost in the morning.  Soon I hear music and laughter spilling out from the kitchen windows of my humble home.  As I look back towards the house that my girls and I have made into a home, I see that is it battered and has a few scars of it's own.  Yet when I take a deeper look I can see inside the windows.  There I see my babies (they will always be my babies) a few years older, still as beautiful on the inside as they are on the outside. There is joy in their voices, there is happiness in their hearts.  They have learned through my mistakes that life is not fair.  No one has ever promised that it would be.  Although I know they will make many of their own mistakes, I pray they do not follow the path I chose of most resistance.  I pray that they follow a path that brings them challenges and as they gain strength and overcome those challenges they feel the joy still in their own hearts.  When I look again I see that this battered up home is a symbol of who I am.  I have many scars some in full view and others one may have to look really close to see.  However behind those scars I see a light in my eyes and joy in my soul, just as I see the love flowing through the windows of my home. 
I close my eyes and thank God for my life.  The good, bad and the ugly, for this is what has made me who I am today.  As I listen to the sounds of my favorite things and find myself lost in a dream, my boy Jake comes up from his morning swim and shakes his soaking wet body all around me.  I open my eyes and smile and realize that this is not a dream...this is my life.