Interview by Sammie Barrett, RSDSA Special Events Coordinator.
For the past six years, there has been a day in which people wore crazy socks to raise awareness for CRPS/RSD awareness. I heard about it in its second year and encouraged my friends and family to participate. We would post pictures of our crazy socks online to our personal Facebook pages and to a page dedicated to this Crazy Sock Day. Last year, the first Crazy Sock Walk happened in Melbourne, Florida. It is happening again this year. The masterminds behind this: the Dickens family. Melanie is teenager living with CRPS/RSD among other invisible illnesses. Her mother, Laurie, is one of her biggest advocates. I was able to interview them this week, as they prepare for the second Crazy Sock Walk and the sixth Crazy Sock Day. To see how you can give to this event, please click the link or see the bottom of the blog page for details.
Sammie: Melanie, tell me about a little bit of your journey with CRPS/RSD. Laurie, what has your experience been as a mother of someone with chronic pain syndromes?
Laurie: It’s been a learning experience over the past six years. We started with having absolutely no knowledge of RSD/CRPS or how we would be in a life changing situation with our 10 year old child. The information available was confusing and conflicting, especially for the pediatric world with this diagnosis. The search for appropriate doctors was long, and is ongoing. We’ve spent hours researching and networking. It’s been an ongoing process that still has a place in my life today. Melanie has been a complex case with many comorbid conditions and additional diagnosis, so we’re always team building and finding just the right treatment to help enhance quality of life and promote as much normalcy as possible.
Melanie: It’s been a rough journey, especially during the beginning. It was super scary, I was used to my parents being able to tell me what was going on and why, then all of the sudden they didn’t have answers. It was really hard in the beginning because I thought I would go to physical therapy for a month and then go into remission, I actually think that I was making things harder on myself thinking like that. It has taken a while but now I don’t expect to get better. If I do get better, I will be thrilled, but I’ve made it six years so I can “live” with it. Coping helped too, but honestly nothing could help the emotional roller coaster of the first 2-3 years, I had to go through the stages of grief; I was grieving my old life.
SB: You’ve been running Crazy Sock Day for 6 years now! What made you start this day of awareness?
L: My husband, Shawn, and I proposed Crazy Sock Day to Melanie as the year anniversary of her life altering injury approached. We wanted to make sure that this day was not one of sadness and loss, but yet, a celebration of Melanie’s strength and determination to live with the challenges of chronic pain. Since Melanie had been wearing long colorful knees socks as part of her physical therapy desensitization routine, it made sense to ask anyone who knew Melanie to wear socks like hers. What started as a small “event” within our family, at her school, and even among many Facebook friends, soon became a “holiday” of sorts that Melanie has always considered very special.
M: As much as I’d like to, I can’t take full credit for Crazy Sock Day. My parents came up with the idea because I was getting upset about the year mark coming up, they suggested all our friends and family wear crazy socks and that was that. After that year I was super involved because I realized that it could actually make a difference.
SB: What do you think about its success?
L: I’m thrilled with the support and attention Crazy Sock Day has gained, and feel it’s been commanding of RSD/CRPS awareness. We since added a goal of awareness of Gastroparesis, Mitochondrial Dysfunction, Ehlers Danlos Syndrome (Joint Hypermobility Syndrome), and Invisible Illness in general, as these issues all affect Melanie and many others with RSD/CRPS.
M: It means a ton to me; so many people know about chronic pain and invisible illness. I have been through a lot, especially with people judging me so the fact that more people are aware of invisible illness makes me happy.
SB: The second Crazy Sock Walk is January 24. What should people expect to see at the walk?
L: Crazy Sock Walk will have a raffle and silent auction with prizes donated by friends and community businesses (along with some of Melanie’s framed photography and artwork), a sock raffle, as well as a bake sale, food & drink items, and a one mile group walk in crazy socks. Melanie also has various awards she gives out to participants.
M: AWESOMENESS! Just kidding, we will have food, games for kids, food, baked goods from the “Amazing Melanie Marie Bakery”, raffles, and art for sale.
SB: How has the support of the community been?
L: We’ve had support from many local small businesses in donations for the raffle and auction. Friends and family are always supporting Melanie but we hope this year to have even more community participants with a very close to home location for the walk.
SB: What is the best part about having this awareness day, and now event, each year?
L: The best part about the awareness day is the smile on Melanie’s face as she sees the impact she has had and the support being given to not only her, but others, who are dealing with chronic pain and illness. The Crazy Sock Walk event has taken Melanie’s Crazy Sock Day to a new level. While Crazy Sock Day has never been about money, the walk does bring in a nice donation to two non-profits we see as vital to the RSD/CRPS, and chronic pain community. (US Pain Foundation and RSDSA)
M: Everything. This disease has been the most difficult thing to happen to me, to see that so many people care about me and Crazy Sock Day is insane. I never expected it to get this big, or really even past friends and family so it’s just astounding.
SB: Have you been able to meet people that have stories similar to yours because of this?
L: We have met many people through Crazy Sock Day, and heard many people praise Melanie’s efforts, or even say they have learned from her journey.
SB: What do you see happening with this in 5 years?
L: Crazy Sock Day will always exist with the power of social media, but, we’re taking each year as it comes as far as any physical events. Crazy Sock Walk 2015 was great fun and successful, and we hope to see Crazy Sock Walk 2016 meet or exceed that. We’ll see what 2017 brings. There are always ideas circulating in our minds.
M: Honestly I have no idea, and as long as my friends and family are still participating, I’m happy.
SB: What is something you want everyone to know about you/the event?
L: Crazy Sock Day is all because of one young person who brought a big buzz and made change in an area where change was needed (awareness). I hope people will learn from this, that every person, no matter your age, can make a difference.
M: I’m not some amazing, strong person, at least no more than anyone else. I just do what I need to in order to live my life. I don’t do this for attention, it actually has very little to do with me other than it being my injury anniversary, I just want people to know about invisible illness, CRPS, Mito, Gastroparesis, and EDS.
L: Melanie has faced many obstacles and challenges in her young life because of chronic pain and illness, but she has shown through her actions that you can adapt to a new normal, you can improvise with participation in activities, and you can keep living despite it all. This is the true spirit of Crazy Sock Day.
It’s not too late for you to support the Crazy Sock Day/Crazy Sock Walk. To donate to the event, please click here. Visit Custom Ink if you are interested in purchasing a Crazy Sock Day shirt. Be sure to wear your craziest socks on Sunday, January 24. You can post pictures to the RSDSA Facebook page and we will share them with Melanie and her family. Proceeds from this event will go to RSDSA and the US Pain Foundation.