I constantly have people asking me ‘how I do it’ or how Nicky handles all his pain. I think over the years we have learned our unique way of coping with things. I can only limitedly talk about Nicky and how he deals with EB, I know that even if I am his mom, I do not want to speak for him too vaguely or assume, so I will start with him first of what I know for sure.
Nicky hates EB. Make no mistake. He hates it. He will say it. When others say it he agrees. When he saw my shirt that stated ‘I hate EB’ he loved it. I am thankful he is a boy and a boy with limited patience for social media because he has never cared about what ‘word’ I use to define his condition or what others have to say about it. He’s a typical guy, he does not talk much, but, like me when I was young, when I spoke, it meant something, and so is he. He’s always in pain and he takes his mind off by playing videogames. This is why he’s such a Mario Aficionado, he plays Minecraft or plays with his DS. He loves playing. He tells me often he has no intention of dying and I attribute his good attitude to keeping his spirits up, along with pain meds and his iMac. Of course knowing about the clinical trials coming up has been a huge boost. He has friends he talks to that play with his games and he will do anything to take his mind off EB as much as he can. Of course the biggest drawback is that he’s basically immobile for most of the day because any movement causes him pain, so I am thankful he can do things that take his mind off. I will be there for anything he needs. Forever.
Me? My coping techniques are a little more complicated. Not only I am a woman (emotions galore-my husband often wonders how I deal with all the emotions twirling through my head), but I am also an adult after all, an adult responsible for my whole family, not just Nicky. Not only I am Nicky’s 24/7 nurse and his taxi-driver, homework helper etc, he can’t do much on his own so besides dressing him, feeding him and taking care of morning and night routines, along with hospital visits and more, I also take care of his little brother Connor, who, at 11 years old, is a handful himself. Connor has improved immensely over the years, when he was a toddler he was Mr. Disaster, and I counted 15 times in one day he got naked when he was little, now he’s actually helpful, but he does have some growing up to do. He has swimming, karate, homework and needs to be told to brush his teeth and change his clothes. He’s vastly easier to take care of than Nicky, but I am still his taxi-driver, taking him to and from school every day and to the other activities. There is also my husband, that despite having made gigantic progress since his strokes, there is much he needs help with. He does a lot himself considering his limited use of one arm and leg. I had someone asking me when I was going to go back to work… my standard answer is “maybe in the new year” but that is also vague, depending on Nicky’s upcoming clinical trials, but I want to make sure the book I am writing is done first. That is my priority right now. I am certain it will be done before the end of the year.
Don’t get me wrong, I want and probably ‘need’ to go to work for my sanity; at this point and many times during the day I am not sure how the heck I might manage it. My house is a mess as it is. Do I really ‘need’ to go to work? Or would I just do it to take my mind off stuff? So far, a number of things work great in taking my mind off things for an hour or two. I try to read at least half an hour every day. I try to walk half an hour three times a week. I have my cappuccino every morning and count my blessings each and every day. My latest obsession is ‘Outlander’, and that says something considering I do watch a lot of TV. I know I am obsessed when not only I watch and re-watch each episode a million times (I never ever watch any show twice, so that says something), I listen to the podcasts, I am now listening to the audiobook, and considering I never, ever read these kinds of books (it’s truly a first for me), it says a lot. I am obsessed and I like it. I can’t remember the last time I was obsessed over a TV show. CHiPs maybe? That was a long, long time ago. I was a teenager for goodness sakes! I do like it. It’s something I watch and do for “me” and “me” only, since my life is so not about me at all. Of course a glass or two of wine at night help, especially while changing bandages. Nicky likes it when I have my second glass of wine, he says I get ‘funny’. Everything becomes a joke. It’s true. I also like to do somethings that I know I have control over, such as play around with my hair and clothes. I visit this thrift store that is huge and I get a huge bag of clothes for $10, no lie. Love it. I love collecting earrings and bracelets of all kinds. I am sure that once my book is done I will re-start my graphic design and photography stuff. If I can find a part-time job that has anything to do with that I would be thrilled.
I know this may sound a little out there to some, but I am also a firm believer that we ‘chose’ this life. I have stopped asking ‘why me’ a long time ago because of that. There is definitely more to life than this, and this knowledge alone has helped me in ways I cannot easily explain. We are here in the now, choosing this life because we wanted to learn something. This past year I have been fascinated by Past Life & In Between regressions to find out what our purpose is. I’ve known about this since 2001 when I first started reading books from Brian Weiss and Michael Newton, I have watched documentaries and also interviews from people who either remember past lives, deja-vus or other. There is a reason why we are drawn to certain things, how some things look and feel so familiar. I picked up English so fast when I moved here from Italy, I am certain I spoke it before. The first time I met my husband I was mesmerized, almost in a trance. It’s like my soul recognized him… There he is! So now I feel I need this information more than ever, I want to know what my purpose is. I found this woman that is going to help me find out just that. She not only trained with Brian Weiss himself but has her own amazing story. The funny thing is that my parents do not believe in this at all, and you know what? Oh well. I do. I believe in it 1000% and I have long believed we have our journey, our own way of coping and dealing with things, and if this helps me, what does it really matter what others think?
So my coping techniques basically are to ‘do what inspires me’ and enjoy it, while taking care of things that must be done, never forgetting to take care of myself. My family needs me, and I am OK with that.
Love and Light,