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Yes, it’s been a while. Yes, I feel super guilty.

I mean my 10 year anniversary passed and I didn’t even write a blog about gratitude.

I feel awful.

I have been so consumed with life, I forgot to write in the blog. I think about it on long runs. I think about it when I go for an annual health exam with a new primary doctor and you should see her face when she sees the word Dystonia.  The best part was that she told me my reflexes won’t be great because of my Dystonia, but wait you told me 5 minutes ago that you weren’t familiar with the disease….Jeez. This is why I don’t love doctors. I don’t expect them to know about Dystonia but ask, don’t assume.

I digress.

I am going to run my 3rd half for the year in less than 3 weeks and couldn’t be more excited.  I have been doing my 10 milers and eating properly and trying to get my 8 hours of sleep. Since, I last wrote here are some highlights from half #2 – Miami, me enjoying a PBJ on the run, and some of the other beauties I see when I run.  In these moments, knowing that I will never win a half, I stop and capture the moment.  I am always reminded on every run the beauty of what nature gives us.  I am also reminded that who knows what my life would be like without Dystonia…maybe one where I wouldn’t have found a passion for running and fitness!  But here I am and despite ups and downs, I constantly look forward to my long run – my time of reflection, uninterrupted.

I am going to try and write more and be better, but I have said this before.  But I will try!!!

Always remember work within your limits – half of the effort is just getting up and lacing up!

Doing things I love best.

2015 was all about risk taking, doing things out of the ordinary. Being uncomfortable.

2016 is simple.  Be Happy.

Running makes me happy.

Over a year ago, I swore I wasn’t going to run again.  But over the course of 2015, I realized I missed one of the greatest miracles of my life – the ability to run.  For the last 10 years, I have been doing it all wrong.  I have been working out of my capabilities.  This year, I decided I would do it with my limitations and within my capabilities. I would run as someone who wants to do this forever.

How do you do that you ask? I decided I would really do the run/walk method.  Not run till I get tired but really maintain a schedule – one meant for my body.  So for my Disney Half, I decided I wanted to run it without pain and enjoy it.  Boy did I enjoy it.  Every minute of it.

I ran.  I cried.  I ran.  I cried again.  I cried because I was doing it. I was running at my pace.

I cried because I still remember that day almost 10 years ago when I realized I could run.  I was humbled, I was grateful, I was happy.

I was doing my 6th half marathon. I hi-fived anyone and everyone. I took pictures. I stretched. Hey, I am not qualifying for Boston so who cares about time.  I just wanted to do my best and get that medal.  Sure I was nervous 10 weeks ago when I had surgery, that I wouldn’t be able to do it…but I tried hard enough and knew that I could!  It was so fun, such a great way to start my 2016.  And what was even more priceless was having my entire family at my side for this one.  So what was my time?

Who cares, I finished!

 

It’s not a setback, it’s an opportunity to take a rest and come back stronger!

It’s been 11 days since I found out I had a short circuit in my DBS system during a routine battery replacement surgery.  Can you imagine short circuiting 2x in less than 3 years?  Well it happens!  To ensure that it doesn’t happen again, I had my battery moved to an entirely new spot in my chest.  What that means, is that a 20 minute surgery ended up being 1 hour and a usually easy recovery hasn’t been so easy…But as the old adage says, what doesn’t kill you makes you stronger….so today was a big win! I walked 1.25 miles!!  That first mile walk post surgery always feels like crossing the finish line!  Though a small mileage, it was a big step to a stronger Carrie.

Here we are again, on the mend but learning everyday how human we all are and it’s how we handle these setbacks that truly make us who we are.  Every day I feel a little better and I know when I get back into my normal routine I am going to be that much stronger!

Life can’t be planned…it just happens…

As fate would have it, there was a 2 hour live DBS surgery on the National Geography channel.  The doctor said this isn’t a cure, its a therapy…I will always have dystonia, but DBS is my constant therapy…

He also said something which has been weighing on my mind recently that people with Parkinsons’, etc should exercise!  Recently, upon realizing I have to have another battery replacement, friends have been saying, maybe you workout too much…but what many don’t realize is that working out helps the brain…helps keep my brain as strong as it can be.  It also keeps my body, my muscles as strong as they can be.  As much as I weeble and wobble sometimes, I rarely fall, it’s because I am strong.  Working out is my way to go farther, be stronger, be braver.

So here we go my 5th battery replacement is this week and you know what I am so looking forward to this! The last month has been terribly hard, many side effects of a dying battery…but every morning I wake up knowing that this too shall pass.   So there are some side effects which I always forget about but I know that this down time has been good, giving my body a break which is always welcomed!

Here goes to another battery!  Another smooth surgery and a quicker recovery!

Carnival 2015 part 2!

As a Trinidadian, you are supposed to love Carnival and play mas, but for me Carnival is so much more than just the music and the masquerading.  For me, it is about living, moving and having me feet touch the ground every step I take.  I have always said after I had DBS I would play carnival, but finally it dawned on me why?  Because every step is so deliberate, it has to move to the beat of every different soca song and because it just makes me smile and remember that every year I masquerade is a year more I can move.

As fate would have it though, for Miami carnival my battery started to die but I swore that I wanted to play carnival with an amazing woman and friend that I played my very first carnival with..

early 80’s..

2015…still on my right side!

Despite, the lethargy and knowing that I was feeling crummy, I still woke up that day determined to enjoy every minute of the day.  And I did!  I had a solid crew of friends that day and how could I not be happy in that sea of color and music.  For a solid 5 hours, I enjoyed the day, reveled in the music and smiled with every step.  I live my life with music and dancing, those 2 ingredients are the special sauce to my life…as Machel would say, I am the happiest man alive! Thank you carnival for making me smile, for reminding me how every step is a journey and every wine is a dream come true!

The amazing crew of friends that made that day wonderful! Thank you Zhivanna for our first grown up carnival in a long time and many many more to come!

It’s called a yoga “practice” for a reason!

2015 was all about conquering fears, being fab at 40 and just doing it!  My friend Stan took up yoga years ago and swears by it.  He always invites me and I am always like:

1. Is he inviting me to be nice?
2. Doesn’t he remember I have Dystonia and can’t balance?
3. Why does he always ask me?

So even though we now live miles away, he sends me inspirational quotes every time he goes to his practice.  One Sunday, I decided I was going to try it again.  I called him and said Stan, I am going to try it and I am sure I am going to hate it.  He calmly said to me, they call it yoga “practice” for a reason.  Everyone in the room is in their own practice, at their own level.  My response “**crickets***, Oh!”  Then it all clicked, I can practice weekly to one day get into crow pose.  It won’t happen on day 1 but if I practice it will happen.

I am in the middle of my practice now, I haven’t quite gotten into crow pose, but I have lost the I can’ts and only see myself in the room practicing – just me and the teacher.  Yoga has been a great way to calm my nerves down and get my neuro system in check with my breath.  It’s been a journey which I wasn’t expecting and I am not giving up now.  There are times when I wobble and wan’t to give up but then I hear Stan in my ear – “Carrie, they call it practice for a reason” then I focus on my breathe and continue!

Return.  Sorry.  Tribe

I am so sorry that I have taken almost 6+ months off but we all need breaks every now and then.  I needed a break from running. I needed a break from blogging.  I needed to reflect. I needed to remember what Dystonia means to me.

Dystonia is here to stay. There is not a day that I don’t think, OMG it’s getting worse. OMG, I sneezed, I moved a wire.  But more importantly, daily, I remember gratitude.  I remember how incredibly lucky I am.  I remember in every workout class or every step on the treadmill that I am lucky.  I am thankful.  I have gotten smarter in my old age.  I have realized that practicing gratitude everyday is what’s important.  Every day is a gift, every day is my hallmark holiday and that holiday is gratitude.

I am also thankful for my tribe.  These 2 –

These 2 are part of my initial tribe, they meant so much to me 30 years ago and they mean even more today.   I am thankful for these two more than ever in this stage of life.  They both constantly remind me that I am an amazing person and more importantly they are amazing to me…these brothers, make me laugh on good days and bad days and I am sitting here today thankful.  But what is most significant about these two, is that there was never a day in 30 years of friendship that they told me that I couldn’t do something or said they felt sorry for me.  These two are in my tribe, these two have seen me for who I am not what disease I have.  Today, I am thankful.

“You are right where you should be”

Today in my afternoon run, I decided after 2 miles I didn’t want to run back, I wanted to walk.  Sometimes in all the training I do, I forget to stop running and just stop and realize this is exactly where I should be.  Slow it down, I told myself, these moments are too beautiful to run by.

We all need to take the time to reflect on where we have been and where we are going.  Our past isn’t meant to be a reflection of our future, our past is meant to be a stepping stone to make us stronger for our future.  After many years of denying that I had a disease, that I am disabled, I finally realize I am right where I should be, where I need to be.  I can’t imagine a world of not appreciating every run for what it is, I can’t imagine my life without this blog,  On this journey called life, we can’t control the onset of a disease, the loss of a loved one or whatever is thrown in our path but I am realizing instead of ruining the beauty of today with tomorrow’s worry just remember you are right where you need to be.  Instead of worrying about my DBS or a battery replacement, I just enjoy everyday for what it brings, change is inevitable, how I handle that change is up to me.

“Athlete”

Did my instructor just call me an athlete? But she knows I have Dystonia, she knows I can’t do it all…hell yeah she called me an athlete!

I am an athlete. I lace up about 7-9x a week and do something good for myself.  I go to bootcamp, I go spinning, I go running, I do Pilates, I go boxing, I go to yoga.  My friends are alway saying – how do you do it? How are you so disciplined? Here is the secret – for 20 years I couldn’t.  I always remember on the operating table saying to myself if this thing works, I am going to be called an athlete one day, I am going to be able to jog, I am going to be able to spin..I am not going to take this science for granted.  And I never did.  The big realization I have had on this journey is when you have an opportunity, a miracle, a gift whatever it is, cherish it, bask in the glow of the gift, BUT don’t take it for granted.

Remember how in my last post I said I wake up scared everyday thinking about bootcamp.  The BIG secret is I am scared everyday thinking about losing this miracle.  I am not taking a day for granted.  I am not taking life for granted.  I am not taking my life for granted every again. I am not perfect though, I fall off this philosophy every now and then but you know what, that’s okay.  Everyone has their bad days, but I decided in 2015 I am going to make someone smile everyday, because their smile would light me up and remind me everyday is a miracle.

To smiling once a day and remembering how lucky we are Dystonia or not!

“Do Something that takes you out of your comfort zone” – Erica, Barry’s Instructor (1/4/2015)

Well I do something that scares me everyday, takes me out of my comfort zone yet makes me realize I am lucky, I am grateful.  The crew below scares me every day…Everyday I wake up with doubt, can I do this? can I really do bootcamp? but in 2014 everyone in the picture below made me realize despite Dystonia, despite having a neurological disease I can run on that treadmill.

Everyday for 25 minutes a day I am scared my shaky legs will fail me and that I will fall off everyday.  Everyday I am nervous I will lunge and fall over, yet everyday when I look up and I see one of the instructors below glance at me with a smile or say go carrie, I realize I did it – I overcame my fear.  So 2015 is all about living outside my comfort zone, having the right people on my team and realizing in this 9th year of being able to walk, I am still the luckiest person I know.  Everyday going to Barry’s, going for a run, or just working out is a miracle, so that’s my motivation, accepting my miracle, getting scared and knowing if I fall, I can get back up and get on the treadmill.

Be scared everyday.  Dystonia is scary, having a disease is scary, realizing that I should be in a wheelchair everyday scares me, so today when I teared up as Erica said do something out of your comfort zone, I realize I do every day and for that I am certain.  To being present in the moment, appreciating every hill I climb because I can always say I went out there and climbed that hill.  I will never know what tomorrow brings today, so do something scary every day and be grateful you had the chance to do it.

Thanks Barry’s Crew – Love you!