Let’s Talk About CHD
2/13/2013 9:39 AM
By Clare Almand
I don’t often associate Valentine’s Day with my heart condition. I think of it as a day that makes couples feel obligated to go out and spend money on chocolate and candy. For me, that’s just another Thursday. And normally, I wouldn’t even be paying that much more attention to my heart condition or the festivities associated with it during this month, but I feel a little differently after doing my first Congenital Heart Walk.
I never had participated in a Congenital Heart Walk before, but I figured that since New York is my new adopted city, it would be the best place to get involved and hopefully meet new people and make some connections. I was never good at fundraising. I don’t feel very comfortable asking people for money (which I really should’ve thought about before I volunteered). But I wanted to break out of my comfort zone a little and try something new, so I embarked on this new project.
The November event, which became delayed after Hurricane Sandy, finally occurred the first weekend in January. I was so excited to get there and start setting up. I was finally able to meet many of the volunteers whose voices I heard on the weekly conference calls that had begun in the fall. It was really inspiring to meet so many people who were so active in fundraising and spreading awareness about congenital heart disease.
The other aspect that I didn’t realize would be so amazing was talking to other CHD survivors. I spent the majority of the event (after doing a little walking, of course) talking to a couple of young adults my age who had undergone open heart surgery like I had. And after the walking, the speeches, and the raffle prizes, a group of six or seven of us young adults got together at a table and just shared our experiences.
I have never felt so comfortable in a group of strangers. The blogs and the online community are great, but nothing compares to actually sitting down and having a conversation with one or more people who can relate to what you’ve been through. I cannot express enough how incredible it was to have the opportunity to do this.
Overall, it was a good start to my Congenital Heart Walk career. I sent out several e-mails to friends and relatives and while I definitely wasn’t the biggest contributor by any means, it was a good starting place that I’ll be able to build on next time. I met amazing people, listened to awesome speakers, and felt like I did something productive for my city and my ACHA community.
So this February, Heart Month, I’m thinking more consciously about my CHD. And since it’s CHD Awareness Week, I’ve changed my Facebook cover photo to let everyone know that I’m #1, which makes me a member of a fantastic community.
Clare Almand was born with Shone’s syndrome and has undergone a repair for coarctation of the aorta, multiple atrial septal defect and ventricular septal defect repairs, aortic valve replacement and an implantable cardioverter-defibrillator implantation. She has a B.A. in Media Arts and Design with a minor in Creative Writing from James Madison University. Clare works at a TV production company and writes screenplays in her spare time.
Copyright ©2013 ACHA
2 comment(s) so far...
By Raena korenman on
2/14/2013 9:01 AM
Re: Feb. 14 th
Senator William Larkin from Orange County New York had a bill passed a number of years ago recognizing Feb.14th, Valentines day, as congenital heart disease awareness day! He is a friend and I didn't know this, but when I learned about his effort...I told him how open heart surgery saved my life 51 years ago!
Wonderful guy !
By angie holt on
2/17/2013 11:56 AM
Re: Let’s Talk About CHD
Clare, I have been trying to find someone with shones syndrom. I'm a 48yr old surviver. I have had a hard 2yrs but things are getting better. I had a mitral valve replacment and ablations for Afib. I'm still active and
living a pretty normal life. I understand everything you have shared. I have never been active in anything to do with CHD until now. I ill look forward to reading your post.