Life Changes….

No one tells you that the stroke happens, it is extremely tough to watch, but unlike cancer or any other sort of illness, for many that is the easiest part. The real struggle begins with the recovery and all of the unknowns. There was one thing I realized right away when Matt had his stroke. It was isolation island from people our age. No one quite comprehended that this was not a broken leg or strep throat. There was no set time to recover and then all would be well. There were no magic pills or anything rest and water were going to fix. As a matter of fact we now resided in a grey area where we were hoping for close to a full recovery but had no idea if that would happen and were staring down a long road of doctors, testing and therapy and it started almost immediately.

IMG_1214Once Matt was cleared to go back to Colorado to continue recovery we spent a weekend with his mom in California then began the journey back to our home. Let me tell you traveling through two airports with an adult in a helmet that has only half of his skull and does not speak is not a task for the faint of heart especially when this person “looks fine”. People are relentless and would constantly attempt to ask Matt why he was wearing a helmet, which he couldn’t respond to with anything but a smile and eye lift. Then they would turn to me who was struggling to get through the airport with four bags and basically a large toddler. There is no quick way to explain what was happening other than he had a stroke, which I learned quickly shifts their perspective from woah why are you wearing a helmet to a look of gut wrenching pity, which is a look I would not wish on my worst enemy.  Matt being from the South compares that look to the “bless your heart” of his youth.

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What now?!

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.

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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.

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