Phase 1 of my adult life began at an Americorps program in Austin, TX. This would prove to be the toughest, most life changing 9 months of my life. The experience opened my eyes to a whole different side of America that up until that moment I had been privileged enough or perhaps sheltered enough to not know existed, depending on how you flip the coin. I have learned that sheltering and privilege are part of the very reason why these social justice problems still exist in our country. If the more privileged classes pretend social problems do not exist and that equality abounds or worse yet refuse to talk about or become uncomfortable when these issues are brought up change cannot happen. Unfortunately, we need those people to take a stand and create an uproar. We all know money is power and without it it can be very hard to draw enough attention and awareness to a problem to even begin to make a change. Too often in our country the people going through the worst social ills do not have the power, resources or time to make the change without someone helping them out and bringing greater attention to the issues. For me Austin would be my eye opener to just how much needed to be changed in our American society. It was also the first place where I experienced what I perceived as personal failure, burnout and began to really question who I was and what I was doing.
A favorite quote of mine is “The cure for anything is salt… sweat, tears or the sea.” For me that is incredibly true. I have often found myself needing all three, sometimes at the same time. Exercise has been a passion of mine and major form of stress relief for as long as I can remember. I was a kid that hated TV or being indoors. I remember many a summer night spent outside running around catching fireflies or playing manhunt until I was forced to go inside and get ready for bed. My mom enrolled me in dance classes when I was 2, I started skiing the same year and shortly there after it was soccer then lacrosse throughout most of high school and college. As a lifelong athlete you can start to take advantage of what your body can do for you through exercise, until that one thing that you have always taken as a constant and given is taken away from you.
Stroke…. this is a post I have struggled with writing as there is so much and so little I want to say at the same time. Recently; however, some of my close friends have started to ask me what it was really like. Apparently at the time Matt and I were going through it I could reiterate what was happening but never could articulate what was really happening. Perhaps that is because, as I am sure anyone that has been in the throes of a medical emergency knows, it is just a monotonous process. You are in it so you cannot describe it. For at least a year or two after his stroke Matt and I wanted to return to normalcy and I think secretly hoped no one we met knew what had happened. It took almost three years for both of us to be ok admitting he had a stroke and the hell we went through in the two years of recovery. Within the past few months Matt has even gotten into advocacy for the disease, Crohn’s Disease, that caused his type of stroke, venous sinus thrombosis.
For me as the partner not personally going through the illness it was like watching paint dry or holding your breath for as long as you possibly can. I have always been a fly by the seat of my pants kind of person and I believe that suited me well in stroke world because simply put you never know what is going to happen. I would call it the cha cha because for every step forward we took we also took a step or two back. How did I personally get through it? I think it was a combination of things. 1) I do not believe in looking back except when trying to change behaviors. This was not a situation that had anything to gain by looking backwards so I just simply did not think about the could’ve, should’ve, would’ve. 2) I hoped for the best and prepared for the worst. This is the best advice I could give anyone. You genuinely do not know what will happen in those first few days with the type of stroke Matt had, sinus venous thrombosis that hemorrhaged, the bleed could cease and they could drain the blood- best case scenario or the bleed could continue and the brain could shift past the midline and meaning you will need to remove a portion of the skull to allow the pressure to decrease and the patient to survive. Those first few days are all about hope and preparation. 3) Research, research, research. I am a person who needs to know exactly what I am staring at… the good, the bad and the ugly and I had to learn that to keep myself sane. There were many sleepless nights watching Matt where my laptop was my best friend. I researched the best doctors, rehab programs and latest findings to really see what our best and worst case scenarios were. 4) Have no expectations. I never once mourned the Matt that was or assumed he would be the same person. I heard time and time again the new normal, but perhaps the beauty for me was that Matt and I did not have a normal yet. We were getting to know each other and the parts of him that I knew could not make it (recreational drug use and partying all night) were that parts I and few others knew he was working very hard to change. He was trying to transition to a more adult version of himself. Matt and I often joke that if anyone knew him they would know he did not like to do anything quietly so why not almost die to kill off that former version of himself. All joking aside though Matt’s stroke was the hardest thing I have ever been through. I was 28 and my boyfriend had a stroke. Suddenly I lived in a hospital and every other partner going through what I was going through was on the other side of life. They were talking about making their partner comfortable and finding activities for him to do and I was thinking Matt is in the beginning of his adult life. He was just getting started, creating a career and a life for himself. I cannot watch him slip away without giving it a hard fight to obtain a new normal. All of this would effect me more than I knew at that time. Three years later I have just begun to process what Matt’s stroke meant for me and where it led me. It showed me my passion and that may just be the silver lining for both of us. Matt got a second chance at life and I got a second, third, fourth whatever you want to call it opportunity to figure out what I wanted to do with my life.
As I mentioned before 2014 was a year that would forever shape my life. Matt was in California visiting family for the holidays and I was in Philadelphia with my family. He had been complaining to me on the phone that he had such a bad headache he did not want to talk or really hear anything. Previous to that when we were both at our home in Colorado he had been having some pretty intense gastrointestinal symptoms that he swore were from lifestyle choices, not illness. I briefly had mentioned that since his symptoms were not getting better maybe he should see a GI and get tested for Crohn’s Disease because I had a family friend that had it and it sounded similar. We often joke that Matt did a Google search, decided he did not want that and forgot about it, chalking it up to a lifestyle that was becoming unsustainable.
December 31 of that year my new boyfriend Matt and I were supposed to attend a concert outside of Denver with his friends. Instead I sat on the airplane in first class, it was the only seat left and I had enough miles so away I went, chatting aimlessly about how I was going to visit Matt in between writing him a letter on the back of my Praxis study guide explaining how scared I was but also how I knew we would prevail. I laid it all out how I knew he couldn’t speak so I was writing down everything I thought before I forgot. I had no idea if Matt would know who I was or why I was there, but I knew this letter was going to be crucial to my survival on that 2 hour plane ride. I arrived to his hospital, suited up (anyone with Crohn’s knows how they always assume you have C-Diff which requires isolation) and walked into Matt’s hospital room where I was greeted by his huge smile and desire to ferociously make-out with me. Turns out Matt was still there after all. The foolish thing I thought then was that it was all good. We were in the clear, it was just recovery from here on out. I was about to learn that it was far from that.
Well what are you going to do with your life was always beyond a loaded question for me. I was/still am one of those people who always said I am going to change the world, which has gotten a lot more laughter than praise in my adult life, but I still stick to that goal to this day.
Along with struggling to figure out who I am and what I want to do I have been going through a very personal struggle with estrangement from my only sibling… my younger brother. It is a continuous struggle to make peace with this situation and I pray everyday for the strength to be able to continue to do that.
2014…. One could say this was the year that began the renaissance within me. It started out with a bang and by bang I mean I had finished 2013 with starting a new job, the one that would do me in with cube life, following an epic breakup after deciding to spend 2 weeks roaming around India and Nepal, where I did in fact get so malnourished that my brain ceased functioning and I drank the water. Yes, I know this is traveling 101 but tell me how you feel after eating nothing but a Luna bar a day for 1.5 weeks, trust me when I say you are no longer able to think coherently about anything. Continue reading “2014”
Why start a blog? Well that is a great question. I think it has been something I have thought about for a few years now, as I have begun to figure out who I truly am and what I want to do with my life. The past few years as I will fill you in on later have been anything but calm, cool and collective. It has been more like some sort of crazy roller coaster that you’re begging to get off but manages to break every time you think the end is near, which I have in fact been on one of those only it was a Ferris wheel, leaving you constantly wondering if it will ever end until eventually you start to maybe, just maybe, enjoy the ride or the fire company comes.