Sunday, October 21, 2012

"Bernadette" Screening at NYC Indie Film Fest

Yours truly, Bernadette, and Josh Taub
Bernadette Scarduzio is a fellow CMT'er who has made it her mission to raise awareness about CMT. "Bernadette" is a film that offers the world a view into the challenges and difficulties of living with Charcot-Marie-Tooth disease. Filmed over four years, audiences are invited to join Bernadette’s journey and her transformation from patient to advocate. Bernadette and filmmaker Josh Taub intend to make CMT “a household word,” elevating the cause to a national and international level, hopefully paving the way for more research funding and ultimately a cure.

The movie was screened at the NYC Indie Film Fest today and I was able to get a handful of tickets while I was still in Brazil. I couldn't wait to catch up with Bernadette again and also, finally meet my dear Fab Fiver Esther.

I first met Bern over 2 years ago, when I stumbled upon a trailer for her movie randomly at 3am one night I couldn't sleep (story of my life!). Here's what I wrote about it then:

My dad, my hubby, Elke, Veronica, and Anthony
I was very lucky to have a great group of supporters come watch the movie with me. Since I have been crying at the drop of a hat lately, I knew I needed and wanted to be surrounded by some of my closest family and friends.

Movie Poster

I absolutely LOVED the movie!!!!!!!!!!!! I cannot wait to be able to show it to everyone I know. Bernadette's story is beautifully told. She is just the BOMB! She made me cry (75% of the time! LOL), she made me laugh, and she also told my story. It soooo resonated with me and my friends were so grateful to have seen it and to really get what I've been talking about this whole time. This movie is really going to do wonders for our community: to educate doctors, family and friends. It will be great to not have to deal with "the biggest disease no one has ever heard of."

And among the many highlights of today, at the top of my list was meeting Esther!!! We have known each other for a while now and I feel like I know so much about her and vice versa. Even though we don't live that far away from one another, it just had not worked out for us to meet up yet. Unfortunately, we didn't have much time to sit and chat because there was so much going on, but just the little amount of time we had made me feel like I have known her my entire life!!! Esther - it was truly a pleasure to meet you and Adiel...I already can't wait for our next meeting and we need a lot more time next time!!!

Me and my girls - I look a little too excited in this pic, but oh well!

Esther and I right after the movie...can you tell I've been crying?

Esther and I with Bernadette

Esther and I with Allison Moore, the Founder and President of the Hereditary Neuropathy Foundation

Today was a long and tiring day but so worth it! I am SOOOO happy! And this movie has definitely made me want to do even more to help spread CMT awareness!!! Let's all do our part :)

Wednesday, October 17, 2012


Thursday, October 11, 2012

When Things Were Simpler...

In our society, progress is something that has propelled us onto bigger, better and easier things. Being an 80's child, I remember when things were a lot simpler...before cell phones, computers, iPads, wifi, etc. It was a simpler time when kids were kids longer, when we played outside until our moms called us in for dinner, when we dropped by friends and family's houses without having to call first, when we rode our bikes without helmets...I love and am totally addicted to the comforts of modern life, but there are times when I miss when things were less complicated.
When things were really simple...

When things were simpler, I was just a clumsy girl who fell a lot but I walked with no problems, I wore shoes when I felt like it, I danced to my favorite bands all night long and I didn't have a care in the world beyond my sisters annoying me or wanting to borrow my clothes all the time. When things were simpler, life was uncomplicated, health wasn't something I particularly thought of very often, because I had it.

It's been almost eight years since my CMT diagnosis and easily over ten since my symptoms started to show and really bother me. Eight years isn't exactly a long time in the big scheme of things: it's two World Cups, two presidential terms, two Olympic games, it's going through high school and college...but in the scheme of my life, eight years has changed things in ways I would have never expected.

In my personal life, my sisters moved back to Brazil, I graduated college, met and married my best friend, moved from NJ to CT, became a first time homeowner, and blossomed into an adult. In my CMT life, things changed drastically. I went from ignoring my diagnosis for a couple of years to a hot pursuit of answers and medical help. I had two reconstructive surgeries on my feet and another minor surgery in search of pain relief. I've met a slew of doctors, surgeons, and neurologists...some of which helped me immensely and others who upset me more than they'll ever know for things said without thinking. I progressed from an active and outgoing girl who loved to dance to a girl who doesn't go out often without fully analyzing where, when, how long, how far, who is going and if there is seating. I went from avoiding medication at all costs to not being able to deal with my pain without them. I went from regular walking to less and less walking, to the wheelchair and now to the scooter.

Life with CMT is full of ups and downs, both physically and emotionally. Just as you are getting comfortable with a change in your condition, things change without your noticing and you have to adjust your mindset. Some adjustments are easier to accept than others. Sometimes it feels like you're in a constant state of mourning...mourning things you could do that you no longer can, mourning the person you used to be and adjusting to who you are becoming. Even mourning the future...the dreaded how-will-I-be-in-five-years question. It's never a good idea to dwell on these changes too brings on too many feelings, and most of them are not the rainbow-filled, peaches and cream kind. Sometimes it is good to acknowledge those feelings though, throw a heck of a pity party for yourself, and then move on.

There are so many things I miss...things that I'm sure most people take for granted. Taking a walk at the beach, walking the mall, dancing the night away...But I have also realized that I am no longer the same person. I am more mature, I appreciate the little things in life, I am grateful for the days when life is good and CMT is taking a hike, I sympathize with the pain of others in a way I never could before, I am so grateful for the people in my life who are such a strong support system, and I am thankful to God, that even though He gave me an obstacle in life, it's one I can endure and He gave me as many cushions as He probably could without taking away the lesson.

When things started to get complicated...
I think CMT'ers are much stronger people than they get credit for. We are all struggling with this invisible condition that many people aren't even aware of and we are trying to do it all with a smile on our faces. It's a constant battle between body and mind...our body wants to give up and our minds are refusing to let it. Progress hasn't been a friend to my body, but I pray that this same progress leads researchers and scientists towards a treatment that will help us all.

Monday, October 8, 2012

Scootin' On...

Posing with my new ride!
It's no secret that my life has changed quite a bit over the last couple of years and due to my CMT progression I have been a much more avid user of my wheelchair. The wheelchair is great because it allows me to do so much more, but it has a few drawbacks. It's very tiring for whoever is pushing me around (John got calluses in his hands from pushing me around for an entire weekend when we went to Newport, RI two years ago), I don't feel very "free" in it because I am taken places instead of going where I want or stopping when I want, and I feel like I have no control. Sometimes, in a crowd, my "pusher" may not realize how close they get to people in front of me and that gets me a bit anxious.

I have been wanting a scooter for a while to have the freedom to go at my own pace and to allow John or my dad to enjoy themselves more when we're on an outing. A friend of ours was kind enough to give me a power chair a couple of years ago but it's really bulky and heavy - we need at least 2 people to be able to load it into the car.

I became a member of the MDA a while back and recently heard of their loan closet. While I was away in Brazil visiting my sisters, I emailed my MDA rep asking if they had a scooter in their closet that I could take and luckily they did!!! The process was extremely easy! The supply store got in touch with me once I got back and I just picked it up last week. It's nice, light, fits in my trunk, can be lifted by one person, and it's sassy like its owner - it's a beautiful bright red :)

We were away last Thursday and Friday at a friend's wedding in Massachusetts and we heard of Old Sturbridge Village, which was only 5 minutes away from where we were staying, and what a great tour it would be. It's a living museum located in Sturbridge, MA, which re-creates life in rural New England during the 1790's through 1830's. I highly recommend it. And I was super excited to take my scooter for the first ride...I cannot even put into words how happy I am to have it!!!! It was wonderful! I felt so independent being able to steer myself and honestly, it's also a lot cooler than the wheelchair. Somehow it made me feel less "disabled" if that makes any are some pics of my riding around this beautiful place...

Loving life on my scooter!!!