Today is the five year anniversary of Eric’s first seizure that eventually led to his brain tumor diagnosis.
got glioma? he does.
will it ever go away? it won’t.
fglioma? every day.
I wish there was a better word than anniversary to describe the passage of time surrounding events that we must acknowledge and recognize, but not celebrate. Time marches forward. It is so important to mark those events that change our souls, even the ones that break our hearts, because it reminds us that we can survive. We have survived. We will survive.
Today has been looming more like a deadline to me. Whether ultimately accurate or not, I can’t forget the first night in the ICU room, hearing the words “4-7 years”. We have heard a lot of other numbers….we have also seen time frames play out far too quickly. There is simply no way to know what the future holds, and that is the single most difficult part of this journey. There is nothing known, from time frames, to treatment, to symptoms….nothing.
Hindsight is an amazing tool into the unseen workings of the soul that are invisible to us in a given moment. While everything we (mostly I) have shared has been 100% true, most of it has been a bit too shiny and polished to really do anyone any good but myself. In many ways it has been selfish writing. Writing to reassure MYSELF that there is a purpose in this journey and that I am approaching this in the right way.
The untold story, and the future story, is to dig into the why and the how I am happier in this moment than any other times in my adult life. Much of this has come from yoga, can’t lie. From yoga I have learned to quiet my crazy-ass mind, let go of all forms of peer pressure, mean girls and keeping up with the Jones’, and try to understand that I am absolutely in control of how I live my life – learning to choose to be happy versus waiting for it to happen…. I practice every day living in the moment – not the past and not the future. Being present is the greatest gift the tumor has given me, and my yoga practice, teachers and community have put the light on this blessing.
I suppose I am a scientist at heart because I am constantly trying to understand the “why”…..Why does yoga work? Why am I ok? Why do some people thrive and others barely survive? What have I done right and what have I done wrong?
It may be as simple as one word. Love. Choosing Love. Showing Love. Practicing Love. Being Love.
I’ve seen it work. I have sat with the lost in our society – the broken, the poor, the homeless, the sick. Many do not remember the impact of an monetary gift I have given them. A website of resources or a gift of technology is important, but not life changing. It is not life changing because it is nothing without a human connection.
Over and over people respond to and appreciate one thing. Love. This is without exception.
The loving gift of time. The loving gift of concern. The loving gift of friendship. The loving gift of honesty. The loving gift of authenticity. The loving gift of our shared humanity.
People respond to Love.
And here is the other truth. No one can give Love to another without fully first Loving herself, her life, her truth…..completely. It doesn’t work otherwise. And maybe that is why the world is so sad. We have forgotten how to Love the most important person in our lives – our self.
“The great compassionate souls always take their overflow of sorrow and turn it into love.” – Elizabeth Gilbert
Below is a piece I wrote awhile ago about our journey…. it was, ironically, published this morning on kindness blog…..in case you want to keep reading….
I HAVE A CLEAR CUT DIVIDING LINE IN MY LIFE.
39 YEARS ON ONE SIDE – 5 YEARS ON THE OTHER.
My husband’s {inoperable and incurable} brain tumor has been the greatest blessing I have ever received. Let me say it again – his brain tumor is my BLESSING. I know this with 100% certainty – I have never been so full of joy and happiness. Right here and right now. Oh, let me clear one thing up from the start. I am not in denial nor am I deluded. If you can let that suspicion go, the story means more.
We were sailing right along until…we weren’t.
Two amazing kids, happy and healthy, a ridiculously lovable yellow lab, a house on the best street in my favorite neighborhood, a career I loved, loads of friends and family – all that was missing was the proverbial white picket fence.

Life was easy shmeasy.
I DIDN’T REALLY REALIZE WHAT I HAD. FEW DO.
There are always annoyances and challenges to consume our minds and to divert our attention. It’s the rub for us all, isn’t it? It takes a jolt to see what’s right in front of us. I surely got mine.
I will never forget my pivotal moment – the one that woke me from my despair and truly brought more light into my life that I could ever have imagined. Sitting on our sofa together soon after the biopsy of the tumor, Eric and I had tears streaming down our faces (I am sure I had snot running down my chin, too- I am an ugly crier that surpasses all other ugly criers. Trust me. It would make you want to look away)
We both were thinking the same thing….
Struggling to choke out the words…
We are so blessed.
We were beautifully overcome by gratitude for what we had. We had love and support and spiritual nourishment and physical nourishment and kindness and concern… We had it all, and we were finally able to see it.
Never again, not one moment, has it been about what we don’t have or what has been taken away or what may happen in the future.
THE JOY I HAVE HAS TAKEN FIVE YEARS TO CULTIVATE. I PRACTICE. EVERY. SINGLE. DAY.
My joy, my life will never be perfect – it never has been. The difference now is that I don’t work towards an unattainable {and undesirable} goal. I thank God, the universe, the f-d up piece of DNA in my husband’s brain…. for giving me life.
We handle the f-ing brain tumor (FGlioma has become our mantra, our power) as the most trivial and meaningless aspect of our life. It doesn’t have power over us – in fact we have sapped it of all of its power by laughing at it, ridiculing it, using it for change and good and happiness, sharing with others our lessons through this journey….. it is weak and we are strong.
I need my children to know that life is beautiful
in the face of adversity and, no matter what, we get up.
It has been five years since I heard the words
“There is a mass in your husband’s brain…we need to get him to the Neuro ICU”.
These have been the five most difficult and yet rewarding years of my life. I have failed many times. MANY times. I’ve failed in how I handle my emotions, my husband, my children, my relationships with friends and family….. I have spent time being busy – so very busy – just to stop thinking. I have spent hours wasted on Netflix, escaping my reality. I have ignored even the simplest of tasks like returning a text or phone call. I left my job of 12 years and felt the overwhelming terror of filling the hours of the day by myself. I’ve cried. I’ve raged. I’ve been irrational and snarky and pissed.
BUT ABOVE ALL ELSE I HAVE COME TO A PLACE WHERE I AM HAPPY JUST TO BE RIGHT HERE IN THIS VERY MOMENT.
I am so thankful for my family and friends who love and understand unconditionally; for everyone following this journey and offering thoughts, prayers, and intentions; for a sense of humor that is the ONLY thing that makes life remotely tolerable; for my sacred yoga practice and community – my teachers and role models who have given me gifts that are truly magical; for my blessed and privileged life that allows me to follow my heart and passion.
Author Bio: Trish Rohr is a writer :: avid reader :: nonprofit founder :: yogi
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