“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”
― Francis of Assisi
For most people signing up for a marathon, 5k, 10k or even popular adventure themed races can seem like a challenge.
Imagine facing that challenge while living with Muscular Dystrophy (MD). Fear, self-doubt and even pain are all reasons to give up. I had so many reasons to gloss over fundraiser invitations, to ignore invites and forget about completing in any type of athletic events all together. That would be too easy. After coming to terms with where I was physically and emotionally I decided enough was enough. No one wins by shrinking back in the face of a challenge and neither would I. It was time for me to not just endure the process of being diagnosed with MD, but to fight back by taking the initiative to learn everything I could about this condition and what resources were out there waiting for someone like me (and you) to find. That resource for me is the Muscular Dystrophy Association (MDA). As I began to dig deeper into the information and organization, I started to receive referrals from my community and my doctors to get connected with MDA and that’s exactly what I did.
Just few weeks ago, I completed my second annual MDA Walk at Boston Commons.
Having completed the first walk as both a speaker and ribbon cutter in the year prior surrounded by my family from near and far, I knew that this year would be even more special. The walk was full of activities for families, booths, vendors, plenty of food and loads of fun. Participating in this walk wasn’t just about bragging rights, it was about bringing awareness, raising funding and connecting with people all over my state and the country who may face the same or similar struggles I face. I can’t tell you how many people I’ve met. Friends I’ve made or opportunities I have received because of the support system and resources taking part in the walk and joining this organization have brought me.
I was able to raise 1,500 dollars for the organization but what I have gained over the last two years has far exceeded any dollar amount.
What blew me away the most this year was the overflow of love and support I received from family and friends who showed up and showed out by wearing my Girls Chronically Rock t-shirts (grab yours here) and making my participation in the walk possible by safely transporting my scooter (I couldn’t have completed the walk without it).
If I didn’t have the help of my family and the friends I’ve made through my journey with MD, I wouldn’t have made it this far, and I’m here to let you know that you don’t have to travel this road alone.
As the Massachusetts State Ambassador for MDA, if you’re thinking about participating or getting connected with an organization that can possibly help you cope with whatever chronic illness you may face, take the first step! Take a deep breath, look yourself in the mirror and remind that beautiful face staring back at you, “you are not alone. You are worth the effort. There are hundreds of people like me who are looking for answers.”
Don’t let fear get in the way of connecting with new people who are going through the same or similar situation.
There are so many new connections and relationships out there waiting for you on the other side of having a chronic illness. Living a meaningful and fulfilling life with MD is more than possible. Whether you link up with a local organization, find the courage to finally come to terms with whatever you may be battling or if you just need to know that you’re not alone on this journey, I’m here to tell you again…TAKE THAT FIRST STEP!
I remember what it was like to be diagnosed, to be in denial and to not want to deal with what was happening to my body, but guess what? I didn’t let MD get in the way of living a purpose filled and impact-focused life. So talk with your doctor and sign up for that walk. Join the local organization that specializes in providing resources for what you need, and don’t be afraid to share your journey along the way. It started with a registration form, but walking into my purpose could only have been done by taking the first step.
What step will you take today?
I’d love to hear from you in the comments below.
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Published by girlschronicallyrock
I was born and raised in Cambridge, Massachusetts. My personality is friendly, strong work ethic, and great professional skills that makes her the hustler she is today. I graduated from Framingham State University with Bachelor’s in Fashion Design and Merchandising, a year after I graduated from Cambridge College with a Master’s degree in Business Management. While earning my degree I gained invaluable experience in the business/financial and Fashion Industry with working at different departments at Cambridge Savings Bank and many merchandising companies such as Motherhood Maternity, Tommy John, Spanx, Echo Design and Fossil Group.
While in Framingham State University, I was in the Fashion Club and Black Student Union Club where I was able to meet new people and gain and learn a new experience in both groups with a different diverse of people. I knew I always had a passion for fashion from in middle school and new I wanted to be a Fashion Designer. I looked up to Fashion Designers like Kimora Lee Simmons and Betsey Johnson. I love their unique different styles and just two successful entrepreneurs who are making it in the fashion world and continuing to grow. My dream is to possibly meet both of them one day, even maybe do some business together.
At the present time, I am working as a Merchandise Coordinator for Tommy John inside of Macy’s and Nordstrom within the Boston Area. I also owned my own t-shirt line business called Girls Chronically Rock which was inspired by myself because I was diagnosed with Muscular Dystrophy back in graduate school so I wanted to make something inspirational, motivating for people who may have a chronic illness like myself or may be battling anything in their life, to let them know that they rock no matter what. With the wonderful work experiences over the years, I am really just an easy-going person where sometimes I love to be at home watching lifetime movies or many of my tv shows that I love to watch on a daily basis. I like spending time with family and friends whether its traveling, going out to eat and going to special events.
Through my education and work experience, I have gained the knowledge and skills necessary to excel as a Fashion Designer and Visual Merchandiser. I am both qualified and eager to strive at my business Girls Chronically Rock and continue with dedication, and I know my hard work will pay off and I will reach my goals. I will soon hope to have my t-shirt line sold in department stores such as: local boutique stores, Macy’s, Karmaloop Foot Locker and many more.
Here is a little more in depth detail about how I was diagnosed with Limb-Girdle Muscular Dystrophy:
I have Limb-Girdle Muscular Dystrophy (MD); I was diagnosed at the age 24. I was born and raised in Cambridge, MA and went to high school in Cambridge. I received my bachelor’s degree in Fashion Design and Merchandising and then furthered my education in getting my Master’s degree in Business. When I first discovered my symptoms of my MD, it was crazy to me because I started to get symptoms around 2009. While in graduate school I began to repeatedly fall, and my leg would just give out on me without notice. I would fall to the ground and not be able to pick myself back up, I would need assistance from someone to lift me up with all their might, because it was something I just wasn’t capable of doing on my own. I also began notice when I tried to reach for certain things in the kitchen cabinets or try to exercise I was unable to lift my right arm up all the way. I kind of just thought to myself maybe I need to go on a diet and lose weight, but in the back of my mind I knew it something more.
So I went to see an orthopedic, but I was told that this was more of a neuro-muscular issue, so I then went to see a Neurologist. Once I saw the Neurologist, she then tested me and gave me muscle biopsy, MRI, an EMG and every other test you can think of. So after multiple tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy. Limb-Girdle is a form of MD that affects the limb of the shoulders all the way down to the legs, which progressively over time eventually gets worse.
The first thing I thought was how long am I going to live will I be in a wheelchair soon, and what is my life going to be like from now on. I knew I had to be strong and continue to do what I have to do so I started doing some research on it and read what eating healthy and exercising would help. I joined weight watchers with my cousin and I lost over 36 pounds and I felt great. I’ve able to keep half the weight still off, and I am still determined to lose more.
They have multiple types of Limb-Girdle Muscular Dystrophy, and 5 years later my doctor’s are still trying to figure which type I have exactly. The only thing they know at this point is from the types I may have can affect my heart which is why I often have to go get a echo-cardiogram test that tests my heart to make sure everything is ok.
Living with Limb-Girdle Muscular dystrophy is still new to me every day. I wake up every day not knowing how my legs are going to feel or what pain I may have when leaving my house. I try to be very careful when walking because I don’t want to fall, because I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain amount of hours, my legs start to weaken. I am currently a visual merchandiser at different locations a very popular clothing store. I enjoy my job because it keeps me and my legs active and I enjoy traveling to the different store locations and doing what I love and my part in the fashion industry.
I have the wonderful support from my family and friends but at the ending of the day, they have NO IDEA what I go through on daily basis or what I’m feeling. I try to explain to them how my legs feel, but it’s just so hard to explain. I still go out and enjoy my life as normal, but sometimes I always have certain things in the back of my mind.
When going out I find myself researching about where I am going first, like does this place have stairs?, does it have an elevator?, do they accommodate handicap people? So all of these things I worry about when I go out and my friends and family have no idea. Living with MD has made me realize how strong I am and knowing I have no choice but to deal with this. I sometimes get stares because people wonder what a young girl like me is doing either walking with a limp, with a cane, or parking in a handicap parking spot. But I don’t mind because they just don’t know me or know what I have. Although my MD has progressed over the years and getting worse, I have learned to except it and make certain changes in to my life such as now walking with a cane in order to keep my balance and helping me not to fall. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know by reading this quote.
"There’s no “cure” or a pill will “fix it”, but at one point I thought it may help. And I thought the same with therapy and food. But it’s my endless support from family and friend that helps. It is hardest thing that I have ever done, and I found myself much stronger for doing it. Never, ever underestimate the power of your desire. If you want to live badly enough, you can live. The greater question, at least for me was: How do I decide I want to live? That is the question I’m still working on?"
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