Caregiver

Back before it turned out Lance Armstrong was taking steroids, when everyone still loved and adored him I read his book and he mentioned something in the book that always resonated with me it was that ” Cancer either brings you together or tares you apart.” He was referring to his first marriage and while I was just a child when I read that it resonated with me for some odd reason, but years later I would fully understand what he meant.

While not married to Matt at the time when he had his stroke I became his care taker, which to everyone whom has ever taken on that role you know how tough it is. I thought the role was temporary and for the most part it was, but I think the thing I never actually fully comprehended was just how much Crohn’s Disease played into my care taker role. In so many ways that would be the reason why for most likely the rest of my life I will cycle in and out of the caregiver role. I don’t think there is ever a way to be prepared for that role especially not in your 20s, but when it falls upon you out of the blue you step up to the plate and embrace it, as I did when I needed to.

However, I think few people really understand what the role means and encompasses and how little support there is especially for young caregivers. I believed the universal truth we all tell ourselves, at least in the United States, that we wont be caretakers until we are well past the heat of our lives. In my experience for older people there were a wealth of resources but for someone under the age of 50 not so much. There was no literature on how to navigate taking care of someone who is recovering from a stroke while working, going to school, trying to have some semblance of a social life and attempting to stay in shape. Not to mention that navigating the treatment world is a full time job and the hardest job I have ever had.

I would like to shine some light on what it means to be a caretaker. There are doctor and therapy appointments intermixed with hospital stays, treatment plans, research on the best doctors and the best and closest hospitals wherever we are and that means everywhere even when we are in a jungle in a developing nation and sometimes it means not going somewhere where there will not be access to good health care. It means researching the newest technologies and treatments to help those with chronic illness cope, holistic v conventional medicine or a blend of both? All of these things while working, going to school and having friends ask why you are not going to happy hour once again.

When my partner, Matt, basically hit the stroke jackpot for lack of a better term and had both an ischemic and hemorrhagic stroke I could never have imagined how much our lives would change. We would learn it was all caused by undiagnosed Crohn’s Disease, an autoimmune disease and one of two forms of irritable bowel disease. You never are cured per say from Crohn’s as it is chronic but you can go through periods of remission. The duration of which varies from person to person.

In a few months time I had learned that the person I was falling in love with had a long road to recovery from his stroke and also had a chronic illness that we would both have to learn how to navigate. In the beginning when I first learned about our new normal I though OK I’ve got this and sometimes I did, but on most days I existed somewhere between surviving and debating running away and never come back.

Matt had survivor and IBD support groups I had sorry expressions, empty sympathy and a whole lot of people pull away from me because they just did not or could fathom Matt and I’s life and did not want to. It was as if by not acknowledging what I was going through they could pretend it was not happening and I was just somebody who did not want to talk to them anymore when in reality I was just drowning and at the end of the day could not fathom picking up the phone to hear about anyone else’s life. I just wanted to get through the night to make it to the next day.

In many ways as a care taker the stroke recovery was the easy part because it had a natural ending in which Matt would either begin to get better or he would level out.  We were extremely blessed and lucky that Matt did start to show signs of improvement and was able to attend some of the best therapies in the country. He has made almost a full recovery which is a pure miracle that we are thankful for every single day and honestly he continues to get a little bit better everyday almost 4 years out.

However, the part that has not been very tough for both of us is managing a chronic illness and for me figuring out how to be a caretaker to someone with a chronic illness.

Last year around this time Matt experience his second flare and I was catapulted back into the role of caretaker. I can honestly say that there was nothing that could have prepared me for it. I was at a juncture in my life where it felt like we had finally made it out of the woods after a long, arduous journey and I did not want to go back, but as time went on I knew where we were headed and if I am being honest there was a moment where I resented it. It is hard to shift the mindset from hey were young people finally getting life figured out to hey my partner is in the hospital and when he gets out I will have to be on high alert to the fact that we may need to go back at any time. I think it was the first time I allowed myself post acute crisis of the stroke to process the seriousness of autoimmune disease and what it honestly meant to have a partner with a chronic illness.

I have learned a lot since then and in many ways embraced the role but that does not mean there are not days when I wake up wishing I never knew what an auto immune disease was. So for all of you out there young or old in the caretaker role I feel for you and know that you are not alone and if you ever want or need someone to talk to or bounce ideas off of I am here.

Begin Again

As much as Boulder was our home, after Matt had a stroke and we went back, we had to accept the fact that our life there was not the same. You have to keep in mind that Matt and I had been dating a mere 4 months when shit quite literally hit the fan so we were getting to know each other, but we were not there yet. I knew tidbits about his family and had met his friends and vice versa, but we did not know the inter-workings of each other and guess what now we were roommates and one of us did not communicate well, talk about a relationship shift.

Matt struggled with the fact that time is everything in stroke world and he had been showing signs of a stroke for days. He thought that if only his family had taken him to the hospital sooner he may have had a very different outcome.  A minute can mean the difference between being saved with few deficits or having a long road to recovery or in Matt’s case the difference between being administered a clot busting drug and being ok or having the clot bleed and having brain surgery.

I encouraged Matt to take ownership in his role in all of this. He  should have listened to me when I said it sounded like Crohns Disease and gone into the first urgent care center saying I think I have Crohns instead of lying about how long he had been having GI symptoms. I also pointed out that if he had not been living such the party lifestyle he would have never thought profuse diarrhea for weeks was normal and would have gotten help after a week or two of it. I also prodded him to talk to his friends about their drug use and what he now knew about all of the complications that happen from them.

Instead of his friends reevaluating their life choices they decided it was just Matt’s bad luck and it could never happen to them and even crazier than that they assumed Matt, who let me remind you could hardly speak and could not read or write, would be back partying with them in a few months at Red Rocks.

I listened to them talk to Matt about when he had to partied hard at various shows and rolled my eyes as I thought ahead to the next days round of doctor appointments and therapy. They had no idea because they chose not to have a clue. It was easier for them that way because they did not want to leave that lifestyle behind, but they also were not ready to realize that Matt had. That version of him died the night he had his stroke and had been slowly dying even before that as he was trying so hard to transition away from all of that.

Matt did not have a phone at this point in time because he did not want to pay for something he could not use and this right here was how it became so easy for me to be the “reason” he had changed. I read Matt every text and handed him my phone every time someone called for him, but he rarely wanted to answer and when he did it was always that he was busy. Naturally, this was seen as me “keeping him from his friends” which is hilarious to me because if you know Matt one of the things we have in common is that there is no telling us not to do anything. I was warned by his neuro-psychologist that this would happen. I was the easiest one to blame, but it was not easy for me at all. I hated being hated for something that obviously was not my fault. How had I made him have Crohn’s Disease or a stroke or not want to hang out with them as much? The reality was his reality had changed and their reality had not and rather than accept and adapt to the new Matt they fought it and blamed it on me, inevitably driving an even larger void between them and him.

This being said when it was time to move onto our two month stay in Chicago we were more than ready. It was the fresh start and change we needed. I was beat down from care giving and dealing with his friends and my friends and our families and my class and the Praxis test. I wondered if I would ever have any semblance of a normal existence again and Matt clung to Chicago as his hail Mary in his recovery.

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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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The cure for everything…

Image-1-1.pngA 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.

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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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