A couple of years ago, in the name of being “supportive” in regards to Nicky (or so he claimed), someone told me “At least he’s not dead”.
Apparently this individual had lost two cousins to some condition he did not identify and that was the reason for his statement. When I was outraged and said “gee, thanks!”, he did not apologize, either. He didn’t think he anything to apologize for, imagine that. It was certainly not the first time someone was not supportive at all, claiming to be, and it will most certainly not be the last. Empathy and Compassion are not something many people excel at. Sadly.
Please everyone, allow me to share a few thoughts:
Know that anything that starts with “At least” is not supportive at all, to anyone. Least of which making me or anyone feel lucky… or guilty (depending on how we look at it) that Nicky is still with us despite many setbacks and scares. I don’t take his life for granted and never will. Most forget I don’t need to be reminded of the fragility of life. I buried my first baby and had a miscarriage 6 months after that, then I almost lost my husband a few years ago as well. I don’t need to be reminded that Nicky’s condition could end badly, any day. I know, trust me, I KNOW!! I do not need to be reminded. Children and Adults with EB die often and it hurts to hear the news every single time.
I know it’s hard to be supportive when in this society there is no guide on how to be. The image on the right is from a wonderful book which I highly recommend that teaches Empathy and Compassion and how to help those you love going through a difficult time. It’s called “There is no good card for this“, by In this book and in life, we have to understand that we all have different levels of challenges. Each illness has different severity and impacts. Every death is unfair. Acknowledging each person’s difficulties is what we should do instead of using phrases like “at least…”.
Validating someone’s pain allows them to talk about it, which helps them comes to grips with it. Invalidating someone’s pain has the opposite effect. Illness or death are not a comparison game. Would you tell someone they couldn’t be happy because someone else was happier?
I have a Facebook page where I try to update those interested on how Nicky is doing, and it’s been absolutely wonderful, but every now and again (rarely, thank goodness) it gets quite frustrating. I pride myself in having a really tough skin, In the past I’ve been treated so badly I’ve developed a wall around me where negativity bounces right back. However… if I am having a bad day as it is, the nasty comments get to me. Don’t get me wrong, the internet has been responsible for so many good things in Nicky’s life, but it can also bring some ignorant and hurtful comments like:”Oh no, what are you complaining about now?”.
The truth is, most of the time I am not complaining at all. I try not to anyway. I am telling my son’s story. I am updating his condition, I am asking for prayers and understanding. There is a difference.
Then there are those that love the comparison game or give unnecessary or downright stupid advice. Who knew “Yoga” could cure EB? Why don’t we give Nicky anesthesia while he takes his bath? (What???) I mentioned a little while back that Nicky was not interested in going to College simply because the only thing he cared studying about was cooking. If he got better or even cured (dare we hope!) he would not run, but fly to Culinary school. And here comes somebody bragging how their niece with EB went to College. I mean… good for her, but why the comparison? Why was she trying to make me feel bad because Nicky has no interest or the will to go to College right now? It makes no sense. He is certainly allowed to not wanting to go, it’s his life after all. That’s not how we support someone. We don’t bring in our “I am better than you” story. There is something to be said about how we support one another, and that is not the way.
I have been fortunate to encounter incredible kindness and compassion in the course of my journey. Nicky has taught me patience, kindness and a sprinkle of humor. The reality is there is no perfect way to be there for someone that is hurting, someone who is dealing with something awful or unfair.
The most important thing to remember is to not make things worse!
Love & Light,
