So, last night I ran to Walmart to get some much needed groceries. I was standing in the check out, apparently looking sad, when a gentleman came up behind me and said ‘It can’t be that bad, smile!’ I just looked at him and shrugged my shoulders and he said ‘well, maybe it is that bad. What’s wrong?”
I told him that my daughter is ill, bad collagen, joints dislocate, etc. He was very sympathetic and mentioned that his son is in the hospital after being ill for years. Then he casually said something that floored me:
“My family doesn’t have the bad collagen but every one of my joints dislocate, so I can understand how your daughter feels.” Yup, I bet he does!
I asked him how stretchy his skin is. Not very, he said, as he proceeded to show, what I would consider, relatively stretchy skin. I looked at him and said I was no expert but I thought he probably had exactly what my daughter has. He mentioned his son had problems with his knees, his dad and grandfather and daughter too. He is the first in the family to have all of his joints dislocate. He showed me how his fingers twist around.
I tried to share what I know, to encourage him to seek a diagnosis for him or his family. I could see right when I lost him – his smile seemed fixed and his eyes glazed over a bit. I feel like I failed – there was so much I should have said but couldn’t. He said he was diagnosed with something when he was in the Marines years ago but he just carries on with his life and doesn’t believe in doctors. Even the diagnosis his son has often goes along with EDS or could simply be a misdiagnosis and, if so, is getting the wrong treatment.
I am amazed, gobsmacked really, that somewhere around Greenville, OH there is a whole family suffering from what I am sure is EDS and I couldn’t help. I didn’t feel comfortable giving him my contact info since he was a total stranger so I don’t know his name or have any way to contact him. I wish I could have done more, helped more – something. I feel like I should have been more effective in my communication – even though I know I can’t make someone hear something they don’t want to hear. I know exactly how hard it is to realize your whole family has a genetic condition that cannot be cured and can be passed on to future generations. He needed time and a few moments in the check out was not nearly enough time. I feel very badly that the opportunity to help slipped through my fingers.
I can only hope that our conversation could be a prompt for him to get some information about EDS and share it with his family. Maybe our brief conversation will end up being of some help to him. I pray that it is and wish I could have another chance to chat with him or his family.
So, on the very, very, *very* slim chance that he or his family happened to actually look up EDS and by chance might stumble across this post, I want to help you. If you happen to read this, please comment so I can contact you and help. I know it is highly unlikely that will happen but stranger things have happened. God works in mysterious ways and I pray that our experiences can help someone else.