There was a time in my life where everything offended me. The worse of those times I recounted in my book, Butterfly Child. It was during Nicky’s second Christmas in 1997 and I was at my lowest low, the lowest point in my life.
The following is an excerpt from Chapter 5:
This was without a doubt the worst time of my life and all the heartache was taking its toll deep in my core. This time I was not suicidal at all, just really morose. Within the past 3 years I had a child that was stillborn at full term, a miscarriage, Nicky was born with this awful condition called EB, my marriage was on the skids and I just had to declare bankruptcy. Perhaps it was too much to ask for people to treat me with a little kindness and compassion, thinking before blurting out certain things, or avoiding sending me those “Read how fabulous our life is” Christmas letters, because nobody did. Life went on splendidly for everyone else and I resented it. When you’re in this kind of place in your soul and you sit there, reading these Holiday Letters full of glorious details about people’s healthy children, their jobs, and their magnificent trips and on and on, bitterness creeps in. Considering I hadn’t had a full night of sleep in a year, I couldn’t help but feel angry, jealous, hurt, and even offended. I was very ashamed to feel this way toward people I loved, but that was not a feeling I could control in my hazy, tired and over-sensitive mind. My soul was damaged and it would take years to heal. During this time I lost friends because of the mental state I was in, I would say and do things I would later regret and people unfortunately didn’t give me even a small “pass” considering my circumstances. I was called everything from irrational to delusional, that I had absolutely no empathy, compassion or basic human nature. Not sure how I could give compassion if I wasn’t given any, but that’s an entirely different story. Maybe they were right, but they had never been in my shoes, so I took their comments with a grain of salt. I knew deep in my heart I was a good person, but I was utterly alone and going through more grief in a short period of time than anyone endures in a lifetime or two; so I decided that taking myself completely away from everyone and everything might save me my life, or, at the very least, save me from a nervous breakdown.
It certainly was a perilous journey I was in. It would take me many years to dig myself out of that hole. Being offended or judging others for their life, their prosperity, their fortune, for what they said or what they did had nothing to do with me, and I had to learn that. Being offended means we somehow feel insulted, mistreated or disrespected, and rarely that is actually the case unless it is specifically directed at us.
Case in point, I came across a few individuals who would tell me different things that I was doing wrong in caring for Nicky and those were the types of people who were actively and purposely trying to insult me, mistreat me and disrespect me and those were the ones I needed to learn to ignore and steer clear of. There is a difference between taking advice from someone that knows Nicky personally and understands his unique struggles and taking advice from someone who never even met him and is adding insults to their “advice”. EB is so very different from one patient to another.
Look, I am not perfect. I never said I was and I don’t pretend to be. God made me unique just like He made Nicky unique. I make mistakes, but I try to learn from them. I try really hard, and when I don’t know what to do I seek advice from those I trust. All I know is that as soon as Nicky got his diagnosis I tried to learn all I could about his particular form of EB. Along the way I found out that what works for one patient doesn’t work in another. EB looks different and affects children differently. We are supposed to support one another without judgement, but unfortunately that is not always the case. Nobody knows Nicky’s skin more than I do. No Doctor, no Nurse, no other EB parent or patient knows more about Nicky’s skin than me. The reason we do what we do is because we exhausted all other options, always at Nicky’s expense and pain. We don’t like wrapping, we don’t want to wrap, but we saw what horrible things happen when we don’t. Nicky’s genetic mutation is apparently different than most. Please stop judging what others do and just extend LOVE. If I blocked you or unfriended you is because I don’t need your judgement, what I need is the love and understanding you’re not willing to give.
If there is something I learned is that some people are hurting and they lash out at others. I know that because I was hurting at one point and I lashed out as well. But others do it because they are so bored with their lives they have to invent things to bitch about. Invent things to complain about. Invent things to be mad about. They feel the need to lash out at every turn. These are toxic people and it’s important to learn that their negativity has nothing to do with us, and everything to do with them, hence, to be offended is a choice we ultimately make. Ignoring is best. Let them stew in their hate. Nothing you’re going to say it’s going to make a difference anyway.
I often watch as my fellow humans specifically choose to be hateful, choose to be the victim, choose to be mad and choose to be ignorant over and over again. And while at times I would wish to understand people’s feelings, at the end of the day, I don’t have to, because they aren’t mine to understand. I respect their right to feel what they are feeling at any given moment. We all have our own journey and we need to respect that.
So, the next time you find your blood starting to boil and you start taking offense, go inward. As yourself “Why does this offend me?” “What can I learn about myself through this?” Then, right it down. Keep a diary. You’ll be amazed at the insights.
In this new year, stress less, love more, listen more, be kind and spread joy.
Love & Light,
