04. Revelations

“Dear mom, I get it now.” – Unknown

It would be easy to hold a grudge against my mom even though I understand, because even though I understand, it doesn’t make it easier when she lets me down. No, I am not naive and think I’m never going to be let down, it’s life. It happens. But again, when others come first for whatever reason it’s just an instant reminder of the past. Just like when it comes to chronic illness. If you do get “used” to it, it doesn’t make it any easier… and in reality, you’re never truly used to it – but rather learning to cope with it easier. It is also easy to call mom [selfish] for her choices, however, unless you’ve been in her shoes and have battled chronic illness yourself – what you need to understand is that her being selfish wasn’t really selfish at all. At least not in the negative way it’s usually portrayed. Don’t get me wrong, I fully acknowledge understanding that it is easier said than done, with or without health issues. But! As someone with her own screwed up health, I am asking you… scratch that – [telling] you to at least [try] to understand it.

It took me until I got sick myself to understand. To understand what it’s like to have your life ripped out from under you; grasping at any little speck of normalcy that you can manage to grab hold of, before it slips through your fingers as you fall. Hard. Flat on your ass. It takes a long, LONG time to come to terms and accept that the life you once had will never again be what it was. Not only do you have to accept your new “normal”, but you have to discover the balance between doing what you want to do and how you’ll pay for it. Whether or not X is worth the backlash of Y. Not to mention learning to [live] and not just [survive]. Something I myself am still struggling with. When you’ve been sick for so long, it’s incredibly difficult to not live in constant fear of ‘what ifs’. It’s only natural to want to avoid anything that [could] knock you down and set you back. Therefore getting into the habit of survival mode instead of living a happy fulfilled life.

In the book 10% Happier: How I Tamed The Voice In My Head, Reduced Stress Without Losing My Edge, and Found Self-help That Really works – A True Story, Dan Harris recalls a discussion in which he was told that, “often it’s not the unknown that scares us, it’s that we think we know what’s going to happen – and that it’s going to be bad. But the truth is, we really don’t know.” It’s scary how truthful that statement is! Since the age of nine the need for everything to be perfect controlled the depths of my brain. No matter how prepared I was for a test, in my mind, I had already failed before it began.

I am a perfectionist.

 – [So much so that I have my cousin and husband editing my writing;  if there’s any mistakes that’s not on me at this point. ::wink::]

I have to plan activities and events way in advance so that I can prepare myself in order to partake in said activities/events – only to stress irrationally what I won’t be able to and that I’ll crash horribly once it’s done, just to get down on myself questioning if it was worth it because of how miserable I feel… This scenario is on loop, always three steps ahead of what’s really going on. My mind does not rest, always preparing for the worst and any scenario that could arise. I can be questioning if something was worth it before planning even begins.

As a sick wife and mother – don’t even get me started on the guilt that I am ruining their lives and they’ll someday resent me. Oh, the guilt! That sneaky bastard is probably the worst part of living with chronic illness. It makes you believe you’re always letting someone down, no matter what. The guilt of wanting to be “selfish” and do something for yourself vs. the guilt of how you’ll be perceived and who you’ll hurt along the way. It’s no wonder I have been in therapy on and off for decades. Between the guilt that comes from being sick and this notion that I am never good enough – always needing to do better; that is a balancing battle I am not sure I will ever master.

I read a quote once that I actually wrote out and framed. I have no idea who originally said it so I apologize for not giving credit where it is due; however, the quote is as follows: “The happiness of your life depends on the quality of your thoughts”. Truth. Happiness is a choice and who wouldn’t choose to be happy? As much as I may think I understand, I can not pretend to fully comprehend what all my mother was going through. What I do know is that hanging out with Maria made her happy. On the weekend, for her sanity, she was childless and able to fake some level of normalcy. During the summer she was able to visit my biological great-grandmother who had been a family secret and institutionalized in PA since my grandmother was 2. 

Freda had been forgotten about for over 50 years, so when my mother found out about her she made it her mission to visit every few months. Of course as a kid I didn’t understand the importance behind it, just saw Mom on vacation with Maria. Turns out Mom wasn’t really being selfish at all, she was using her heart and giving a long lonely life a happy ending. Whether Mom went about things the right way or not – I don’t know, I couldn’t tell you. When life hands you lemons you make lemonade, right? There’s no right or wrong way to make it, you just learn as you go what works best for you. Just like with anything in life. You learn from your mistakes. No one can predict how their life is going to go, nor can they predict how they’ll respond to whatever happens. All you can do is move forward with gained wisdom.

As unfortunate as it was, Mom getting sick turned out to be an unexpected gift. A blessing in disguise if you will. When I was six years old I caught pneumonia and for the next 11 years I suffered from unexplained symptoms. In elementary school I was sent home almost weekly due to low grade fevers. I’d spike a fever and it’d go away on its own. I felt fine but the school said I had to go. I simply wasn’t regulating my temperature properly and no one knew why. I had extreme “growing pains” throughout every fiber of my body. Mom was diagnosed with Fibromyalgia and feared my fate was sealed… I don’t have Fibromyalgia. By nine I had started my period and suffered debilitating migraines. Yes, nine. 

Surprise!  – Happy Birthday, Jena! – 

…. Worst. Present. Ever! 

WTF?! Way to ruin innocents, universe!

Nine was a rough year for me. Mixed in with all of the hormonal changes my body was experiencing and the start of my migraines, I was filled with terror bestowed upon me by my thoughtful – loving – brother. An oxymoron, right? My brother, thoughtful and loving? Good one. Jack was nine when he left home for a bit and wouldn’t let me forget it, using it to his advantage. Children are easily influenced by other children, especially when the other kids are older. They have an easier time relating to someone closer to them in age, therefore trusting what they have to say over most adults. So when Jack told me that I, too, would be sent away unless I was the perfect child, got straight A’s, and did exactly what was expected of me, it was easy to believe. He said that they wouldn’t love me if I ever disappointed them. Yikes!

First of all, how heartbreaking is it, that’s how he felt – what he believed to be true?! SO sad! It took me until I was nearly 27 to realize the impact of his words. Up until then I had always figured his words were just words and the issues they originally caused were sorted out when I was 10. Was I ever wrong! I struggled horribly in school. Between ADHD and a form of dyslexia mixed with a processing disorder, I didn’t come close to what I [believed] was expected of me. If Jack was so smart, so advanced – how the hell could I not be “sent away” when he was? How could my parents be proud of me when I wasn’t amounting to even a fraction of Jack? If they weren’t proud of me they wouldn’t love me and then what was the point anymore? 

Eventually the pressure got to be too much. At my tenth birthday party I took a chinese jump-rope, wrapped it around my neck and feet and pushed it out so it tightened around my neck. Luckily some friends walked in on the scene and stopped me. Between begging and pleading I convinced them not to go tell my mother. I know they were petrified so I give them immense kudos for going to the school counselor the following Monday morning. I find it incredible that a group of 9 and 10 year old girls not only grasped the severity of the situation, but also had it in them to do something about it! By the afternoon there was a full blown intervention held in my honor.

Looking back, I honestly don’t know if I was truly depressed and trying to end my life, or if I was joking around. I know I claimed I was joking around but logically looking at all of the facts, it had to have been more of a cry for help. I needed attention. Although, when I was 31 I was diagnosed with PMDD and I do wonder if that played a role because I know for certain that I had my period on my 10th birthday… hmm… Anyway, I was put in therapy and hated it! Over decades of seeing different therapists I know it takes the right fit for anything to be helpful. Maybe if I could have seen the “right” person at that time, I wouldn’t have suffered the next 16+ years with suppressed issues buried so deep! I had no idea they were even there.