Lost Without Leaving

May 1, 2018

There are moments beyond words. Such an odd sentence to be written by a writer... but true, so true, nonetheless. 

 

On October 22, 2017, my older brother passed away. In the eyes of most he had been sick forever: Donovan had a rare form of Congenital Muscular Dystrophy, Merosin-Absent - so rare, that upon his death we learned he was the eldest living patient with this exact type.

 

Don was fourteen years my senior, sarcastic as the day was long, a lover of Escher, Pink Floyd, and psychological thrillers. He fought daily - for his rights, for his voice, for his life. In the winter of 2016 his health began to falter - regardless of his disability and the obvious medical issues it caused, Don was now, actually sick. His heart was tired. His lungs were tired. He was tired. 

 

After a year of consistently-degrading life quality, and several medical resuscitations, he passed away peacefully. We held a celebration of his life - he had lived such an incredible life! He had traveled - an assumed impossibility for an individual on a ventilator. Cruises. Flights. Road trips. He had inspired - an all-too assumed reality for those who are differently abled. Speaking publicly to nursing students, boy scouts, high schools, anyone who would listen. He had eaten - a rarity for those who utilize a trach. Raw oysters. The sharpest of provolones. Chicken Wings. He had completed his college degree. He had drank vodka in an ice bar. He had seen U2 play live. He had lived. For thirty-nine years he had lived.

 

So many only saw Donovan for what he was: disabled, in a wheelchair, different looking. They failed to see who he was. They failed to understand that just as Joe, or Tim, or Harry was, Don too was my brother. And in his passing I did not focus on who he had inspired, or how brave and strong he had been, or how his pain and suffering had finally come to an end. I focused instead on the guttural sadness. On the sheer loss. For it was loss - I had lost my brother. A man I joked with, and watched movies with. The man who made my dream of seeing Disney World a reality. A man I respect, and love, and now, miss, terribly, with everything I am. 

 

I had lost him - and I was lost. Lost without ever even having left my house.

We speak of travel as a journey, as a trip, as a movement from one destination to another. For the past seven months I have been grieving. I have been learning to move from before, to after; from with Don, to without. 

 

I know that this journey has not ended yet - it most likely never will. I also know that I am ready now - ready to reclaim pieces of myself I had given up in the face of this grief. Pieces which I had to put down; I was juggling too much. Pieces such as this blog. 

 

Follow along with me - I'm just trying to find my way back Holmes. I got very lost this year, but I seem to have found a trail marker recently, and I'm now on my way once more. 

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Honey, I'm Holmes!

Marian is a twenty-six year old disaster who hates hotels, loves new experiences, and always dresses inappropriately for the weather. 

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Going Places ≠ Going Far: PART I

August 8, 2018

Lost Without Leaving

May 1, 2018

Live In The Moment, Not On The Page

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I always dreamt of visiting all seven continents; I always knew I'd never make near a seven-figure salary. They told me to keep dreaming -- I told them to watch me go!

Hey, I'm Marian! I go places. Then I write about it.