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.
To make a long story short Matt spent almost 2 months in the hospital, the majority in the ICU. I met some incredible nurses, therapists, psychologists and some doctors that probably should consider a different career path. On January 3, a Saturday, at 10 PM Matt slipped into a coma and went into emergency brain surgery. It is an odd thing to say or look back at but Matt’s mom called his brother and I to let us know they were going to intubate and bring Matt back for surgery and we should get back to the hospital ASAP. A phone call no one wants to get! I got back in time to see and talk to Matt pre-intubation, eyes shut, labored breathing and I knew without a doubt that this surgery was life or death. I thought to myself as they wheeled him by post-intubation for a last goodbye that he looked better and that’s when I realized the gravity of it all.
Matt pulled through sans skull, we would have to schedule surgery at a later date to replace it and he would wear a helmet at all times in the meantime to prevent direct injury to his brain. He was even able to be woken from the medically induced coma within 12 hours, a great sign. He still could not speak or move his right arm and his bowels were still uncontrollable so Matt had the double, maybe triple whammy of recovering from a stroke and brain surgery and still no one had any idea why, for lack of a better term, he was pooping his pants 24/7. Those first couple of weeks in the ICU were gut wrenching. I watched with little knowledge as Matt tried to rip out all of the tubes keeping him alive, whispered to him, the hardest thing I have ever uttered in my life, that if he had to go I would find a way to survive without him and encouraged him that we could make it through this together. One day he reached over from his bed to prop my head up as I crashed from the long nights turned days turned weeks at the hospital and I knew my Mattie was still there. Those were my little moments that stood as glimmers of hope for a future for us in a world that was so negative due to the graveness of the situation.
I had a neurologist sit me down and tell me I was young and to go back to Colorado to my life because Matt’s “best case” was a special car adapted for one handed driving and maybe a couple of words, but I refused to give up hope. I googled Aphasia, the condition he had which left him with the loss of language, and found an incredible program in Chicago at the Rehabilitation Institute of Chicago that was my light at the end of the tunnel. I read stories of people who made complete recoveries and some who learned to communicate in different ways and focused on that while trying to forget what that doctor said to me and at the same time wondering why people say the things they do. I could understand if we were a year in but this was just a month in. I had learned from my research that a month was like a second in stroke world and that with Matt’s age and neuroplasticity anything could happen at that juncture in time.
Everything that could have happened in that hospital did. For that month and a half it seemed like we did nothing but move between the ICU and neuro floors. He became septic, had multiple blood transfusions and finally got his bowels under control and a diagnosis of Crohn’s Colitis. Matt jokes that I was the one who got him talking because I ripped a piece of tape off of his chest and he screamed, proving to everyone that he still could use those vocal chords. I joke with him that after a month of being at about face every time he did anything I almost had a heart attack, convinced something was seriously wrong-something I am still working on three years later, when he motioned me over and said I love you. We were blessed that Matt’s physical strength returned quickly and he was able to walk unassisted before leaving the hospital.
The next stop was a two week intensive inpatient rehab Matt would dub the nursing home, where he met his first of many speech therapists, Christa. I cannot begin to describe what a saint Christa was on every level when we needed one the most. She absolutely helped Matt begin to speak again and work through his apraxia, basically a disconnect between brain and muscles, but more than that she guided us through this new life when we needed it most. That is overwhelmingly what I found in those weeks turned months that there were kind souls sent to help and guide us and blessings in disguise everywhere. Just after Valentines Day of 2015 we embarked on our new journey of recovery back in our home of Colorado.