8/30/2013 10:19 AM
By Jon Ritchings, Jr.
In this day and age, community has taken on a new meaning. Nearly everybody in the world is logged into the internet. Social media sites like Facebook and Twitter, as well as search engines like Google and Ask.com, have made it possible for us to find and relate to others like ourselves, whatever that connection might be. In this instance, I'm talking about everyone whose life has been impacted by CHD.
About three years ago I stumbled on a Facebook group made up of adults with CHD. I was excited, thrilled and amazed to have found 75 people who had similar experiences as me throughout their life. I already knew that I wasn't the only person with a CHD. I had met others briefly during my life, but had never made a real connection. It was the thing we didn't talk about, the elephant in the room. Here, however, was a whole group of people who belonged to a group for the sole purpose of talking about it and helping each other out.
It didn't take long for me to make some real friends with a few of these people. It wasn't long after that one of those friends introduced to ACHA. Another friend later told me that they were looking for bloggers and thought I would be good at it. I thought it was a great opportunity to give back to the new community I had found.
I was right. It is fulfilling to write every month and share my outlook on life. To maybe change the way a person is feeling at the moment by asking them to look at their situation just a little differently.
Even with all this online support available, sometimes it doesn't seem like enough—sometimes you still feel helpless. For me, it's the waiting. Waiting for test results, waiting for surgery, waiting to heal and waiting for the surgery to be over for the friends and family. If you have ever felt that way, then the solution is simple—get more involved in the CHD community.
Do what I did. Take a long weekend and participate in Advocacy Day. It only takes up 2-4 days depending on travel and it is one of the single greatest events I have participated in. The sense of friendship and camaraderie among the people there is amazing. More importantly, at the end you feel like you have really accomplished something to benefit CHD patients. It erases that helpless feeling you might have had.
For the veterans in the community, I know you understand all of this. For those who are new, the answer is simple. Get involved. Search the web. Find a support group that works for you. Find a way to give back and help someone else. You'll feel better about yourself and about CHD when you realize that you are not alone and that others will be there for you and you can help them.
Jon Ritchings, Jr., is a 40-year-old father who was born with pulmonary atresia and hypoplastic right heart syndrome. Although he has made a career in retail, he prefers to be outdoors kayaking and taking photos. Jon likes to draw inspiration from quotes and one of his current favorites is from Lao Tzu: “I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.”
Copyright ©2013 ACHA
2 comment(s) so far...
By Cozett Mazelin on
9/3/2013 8:06 AM
Re: The Importance of Community
I had TOF surgery at Age 6 and last year I had my pulmonary valve replaced and an AICD implanted. I would love to interact more inthe ACHD community I truly do understand feeling like I am alone. I am encouraged by your words.
By Debbie Rhea on
9/3/2013 8:06 AM
Re: The Importance of Community
Oh Jon, how I wish my son could have met you. He passed awsy on 8-13-12 at age 29. He was so upbeat and positive, never talking much about his health challenges to anyone except very close friends. He never wanted pity. Just wanted to help others and make people laugh. His dreamwas for no more little ones to have to suffer with CHDs. I know many times he felt alone because there was no one he knew who could relate to what he went through all those years. He was born with single ventricle, pulmonary and mitral atresia, and transpos. of the greater vessels. He developed AVMs , had a TIA and pulmonary clots. Near the end he had AFib and was awaiting a new biventricular pacemaker at Vandy. He always had faith and never gave up hope. Always the optimist, he tweeted days before his death that we all have a choice in how we view our day and , that day, he chose to be positive. I found ACHA just a few months before he died and told him about it but he never looked it up. I wish he could have confided in some of you. Then he would have had friends who truly understood his life. But I believe he was afraid of what he might learn. He was afraid he would feel hopeless if he was touched by the reality of those who have not survived. On the contrary, I am touched by the hope and strength that I feel when I read about each of you! Thank you for sharing and letting me share. Maybe one day we can meet. God bless you Debbie Rhea, mother of Nolan Woodall