Blog · September 12, 2018

Why I Am Sharing My Story

I am a nurse every single day for my son and I don’t enjoy it one tiny little bit. There are days where EB just overwhelms me. Still.

One would think that after nearly 22 years it would just get easier, but it’s just draining and relentless. Nicky’s at that age now where he should be living on his own or would soon, perhaps graduating from college, but he is everything but independent and will probably never be. EB takes a toll on everything and everyone. Just recently between a persistent corneal abrasion that lasted weeks and severe stomach cramps which made his existence a miserable day to day ordeal, I was nearly suicidal, and I am not even overstating it.

I guess people might think EB goes away or gets better. It doesn’t. It gets worse. I think at this point I got Nicky pretty much “stable”, his wounds are better than ever, but EB is taking its toll. It’s a fight every single day, with every new wound, every new surgery, medicines here, therapy there, it’s never-ending. After all these years I’ve learned to manage my time, but if I have to pick between cleaning and have some time for “me”on the computer, a game, a bath or a walk, I choose the latter, because I know it’s less costly on my well being. If I am drowning, I cannot help my son, and he’s my #1 priority. This does not mean my house looks like a pig-stye, let’s just say I pick my battles. Kitchen and Bathrooms are always clean and the laundry is always done, the rest, it comes and goes. We could use some major help, but we don’t have it and that’s that. I’ve learned to live without it.

Everybody needs support. But I also know that everyone’s needs are different.  I can’t or, rather, won’t say that to EB groups because I have a hard time with “support groups” of any kind. I went from running EB support groups to not daring joining one. Yes, support groups CAN be amazing. I will never doubt that, but the sad part is that they can also be full of hate. It is horrible. I could sit here and tell tales of all the people who are so easily offended or/and love to harshly judge and criticize and name call… it’s ridiculous! Some get mad because only the worse forms get the attention or those who feel horrible because they are worse than anyone else (that was me, sadly, until I learned not to compare-but that was a journey in itself).

EB varies so greatly that some adults with milder versions still have to learn to cope with it. They have been my major critics, and calling them critics is a compliment. Talking to them I found that if they try to compare themselves with healthy people, they feel depressed, and when comparing to others with EB, they feel guilty for being ‘better off.’  Ultimately, they need to learn that comparisons are a waste of time and energy, we all have issues, nobody is healthy. We all have our own things we’re dealing with.

Yet, it continues. The drama and bad mouthing that went on over the years finally went beyond my level of acceptance. I am so against negativity that if I see even a hint of a negative comment on my EB Awareness Facebook Page I unceremoniously delete it. I make no apologies. I am done with negativity. DONE. I’ve spoken and described in detail on a blog (and even some in my book) about the way I was used and abused by a group of people in the EB community which is the reason why I stay away from their drama. I have enough drama in my life without being in the receiving end of theirs. It was hard for me because in the end my goal is to HELP EB families, be supportive, and I want to be open and be able to give advice to those that need it, but I guess they just need to reach out to me personally. It is what it is. My mental wellness depends on it. I had to take my power back.

Because of all of this, I had to find another way to get support because I knew I needed it. Yes, antidepressants work wonders, my family and a handful of amazing EB moms kept me afloat, but I needed to be able to vent without being judged for it. Life isn’t fair to any of us. It’s how we handle the unfairness that defines us. So, I decided to share my story.

Sharing my story meant that perhaps I could reach those moms who also know that each and every day is a gift. Those moms in the weeds, wether for a season or a lifetime. Those moms that cannot dream of a finish line, because there isn’t one that is digestible without a cure. Those moms who hope every single day.

Sharing my story, wether with my book or on TV, meant I was able to widen my social circle. Once I was ready and open to it, the right people came into my life. Some for a few months, some consistently. We were “used” as well, but it’s okay, because, you know, karma.

Sharing my story meant I could spread EB awareness. EB needs awareness so bad it’s one of my main goals in life.

Because of all the new wonderful people in my life I was able to change my mindset. To be present. To just be “OK.” I have no choice but embrace and know that there will be a lot more challenges for him. I need to help my son be happy, be strong, be willing to embrace this unpredictable life. Because he deserves it. He and all children with EB deserve a cure.

Love & Light,