Sunday, May 10, 2015

A Mother's Day Tribute to a Fallen Fibro Warrior

For years I’ve hated Mother’s Day…

Even though I myself am a mother and recognize that it is a day to honor those who hold our future in their hearts and hands by caring for and loving our treasured young, I simply have not been able to find it in my heart to celebrate.  I’ve been too angry you see… Too angry at my mother for passing away when I was only in my late 20’s, too angry that she passed away from something that could have easily been avoided and much too angry that she passed away on the one day that a mother is NEVER supposed to leave a child; Mother’s Day.

I used to joke that it was her way of insuring that I never forgot the day, all my life I have been horrible with remembering dates; I can’t count how many times I forgot her birthday, mother’s day and my parents anniversary.  It seems callous and cruel that I would speak of her date of departure so casually but I needed some kind of emotional defense against the very real and only deniable to myself fact that I was well and truly pissed off that she would dare abandon me so soon.  Yet this year I decided to look at it in an entirely new light, this year as I move towards a lifetime of working with women who like my mother (and myself) are fighting the good fight against the disease called Fibromyalgia, I will use her passing in May as a shield and a sword that serves in the fight for health and wellness. 
So she passed away on Mother’s Day, that means she passed away in May only a few days before what is now an extremely significant date in my world; May 12th, International ME/CFS & FM Awareness Day, a day when Fibro Feenxs around the world spread their wings and rise from the illness ashes.  I wish she’d had the opportunity to do that, I wish that back in the day, when she was diagnosed that people understood what Fibromyalgia was but the truth is they didn’t and it was that fact more than anything that resulted in my mother’s untimely demise.  Of course she did not die from Fibro directly, nobody ever does… Yet it does kill… It kills some people through the effects it has on their emotional state, leading to deep depression and occasionally suicide.  Some people (like my mother) die a much slower and uncomfortable death as their bodies systematically shut down from abuse of prescription pain killers combined with alcohol and other medications that are utilized in the never ending quest to ease the pain.    



So, yes, for a long time I was angry at my mother, for a long time I thought her weak, I thought that she had given up, given in, and that her selfish actions were completely unforgiveable… Until, that is, I too was diagnosed with the same horrifying disease.  And now… I get it – oh boy, do I get it… Without help and support or understanding and compassion how can any one person be expected to deal with living with debilitating physical pain 24 hrs a day/365 days a yr.  She wasn’t weak at all, in fact in retrospect I have to admire the strength of will it took for her to not take her own life, knowing as she must have that for the rest of her life relentless pain would be her companion.  I remember her hours of research, I remember how she would spend a whole day in the library trying to find information on Fibromyalgia or anything disease that seemed closely related.  In later years she would do the same on computers… phone calls to doctors and to Fibro awareness groups.  She tried to share what she had learned, she even tried to warn me that it might be hereditary and that I needed to be careful and diligent with my health.  I didn’t listen… I was one of those people who didn’t believe… All I did was blame…  So the truth is, it’s not my mom who needs forgiving, it’s me… for not understanding… for not taking the time to find out what the disease was, what it would do to her, how it was making her feel…


Some could say that my own experiences with Fibro could be punishment for my cold and callous ways… some could say that, but I won’t.  I think that more than anything the entire experience has been a gift, a lifetime journey that instilled in me a deeper understanding of the mindset of people affected by Fibro.  It is a way for me to see it from all sides, to understand not just where the Fibro warriors are coming from but to also see through the hearts and minds of both the families and the doubters.  It has made me stronger and has prepared me to face this head on and be of service to those in need.


This year, I’ve stopped being angry; this year I have stopped blaming my mom for leaving, stopped blaming myself for not being compassionate enough and I’ve even stopped blaming the medical community for pill pushing.  I’ve stopped blaming because I’ve realized that all the energy I’ve put into being angry and pointing the finger at this, that or the other has robbed me of precious energy that could put to better use.   This year I will focus all of that energy into educating people about the causes and the solutions to this extremely manageable (and I’m convinced curable) disease.  This year I am going to spend my time supporting those who for the moment cannot support themselves, I will encourage and inspire them to action so that they find the strength of will to take their health and wellbeing into their own hands.  This year I will pour my heart into celebrating how far we have come with regards to understanding the causes of diseases of Fibro and acknowledge the undeniable fact that thousands of people out there care enough about the suffering of others to relentlessly pursue a cure.


This year I will honor my mother on mother’s day by making her my own personal saint… St. Marci, the patron saint of Fibro Feenxs eveywhere who watches over us and guides us on the path to happiness and health.  Thanks mom for showing me the way… I hope in the years to come, I make you proud.


Niki Norlock.


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