When Life Just Doesn't Make Sense
I am struggling to find an adequate way to write this or even begin to put words together to convey the thoughts and emotions that are running through my head. I will do my best.
Since the last time that I made a blog post, I have changed. My family has changed. My trajectory has changed. Life as we knew it is gone. Just gone. The Erin as I knew myself feels like a distant memory and at this point, is an Erin that I miss and am jealous of. That Erin had a plan and she was going places. This Erin, the one that is fervently typing on her computer, is confused, angry, hopeless, worn down, tired, overwhelmed, and afraid. But she is also hopeful, courageous, determined, joyful, and inspired.
Quite frankly, I am the ENTIRE emotion wheel.
To quickly recap the events that have transpired since I posted last:
Jan 3, 2021 - Sage was born in Kyiv, Ukraine
March 10, 2021 - I woke up with left sided facial paralysis, numbness and tingling from my waist down, vertigo, double vision, and extreme exhaustion
March 12, 2021 - MRI showed over 30 lesions in my Brain
March 14, 2021 - we moved from our home in Ukraine and flew to GA
April 5, 2021 - I was officially diagnosed with Relapsing - Remitting Multiple Sclerosis with overr 55 lesions in my brain and spinal cord
April 23, 2021 - We moved to Redmond, OR to plug into our new jobs and start our life in the US
May 18, 2021 - I began my disease modifying therapy, a Chemotherapy infusion every 6mos
Feb 22, 2022 - the news of the war in Ukraine reached my ears
To say that I don’t know what to feel or how to proceed, is an understatement. I am at a loss for words.
I think I am mostly at a loss because I am an action oriented person. For those that know me well, they could attest that as soon as I encounter a problem, I solve it just as quickly as it came up. I used to pride myself at my ability to navigate difficult situations, defy odds, and come up with solutions to anything and everything. So what does a fixer, a solver, an action oriented person to do in the face of multiple stressors and events that are outside of any control? What CAN I do?
I think the truth and the reality is that I can’t. Or at least, not in the capacity with which I used to surmount all obstacles. I am essentially bound by limits, borders, and barriers that are all unable to be removed.
So what now? What do I do? How do I move on?
I feel paralyzed and hopeless regarding the war in Ukraine. I can’t understand how to think about it or what to do about it. Not long ago, that was the country that I, and my family, called home. Ukraine is a place very near and dear to my heart, it is ALL of my childrens’ birthplace. I am happy that my children are safe, don’t get me wrong, and I know that I am not actually Ukrainian … but my heart has always been and will always be there. I feel a sort of “survivors guilt”, wondering why I was able to stay safe and others weren’t. I feel moved to do something.. but what? I feel driven for justice .. but how? I don’t have the answers to these questions. I am just left to sit with my emotions and thoughts, in hopes that I can DO something soon. For now, we wear our Vyshyvankas (Ukrainian traditional clothing), speak Ukrainian, make and eat Borshch, and pray and advocate.
Regarding my diagnosis, I am a pendulum. At times, I am hopeful and determined to live my best life and not let MS get the best of me. At other times, I am a terrified mess that is waiting for the “certain” doom of disability. I am scared and sometimes that fear gets the best of me. But I am also motivated and hopeful and continue to put one foot in front of the other and plan to defy the odds like I’ve always done. I mean hey, I have always been called a “medical anomaly” so maybe that will be in my favor here.
For now, I have found a community in Bend, Oregon that gets it. They are a group of people around my age who are all living with neurological conditions. We meet 1-2x/month and engage in a weekly fitness class. I have also found refuge in an organization called “Meat Fight” that aims to benefit those living with MS by empowering them to stay active via endurance sports. Through Meat Fight, I was given a road bike and starter kit and will be riding the BikeMS event in the WIlamette Valley this August. I will also be hiking the Grand Canyon through Meat Fight with a group of people all living with MS at the end of this month (April 2022).
Fear. Joy. Anxiety. Confidence. Anticipation. Worry. Anger. Confusion. Motivation.
I feel it all. But I also recognize the need to be present with my husband and children, to put all of these thoughts to bed and to play, talk, craft, snuggle, dream, weep, and just be. And it’s that reality, the one of those big brown eyes, that scraped knee, the ballet recital, the soccer game, the first steps, and the first words that keep me going.
When life just doesn’t make sense, what more can you do?
