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.
It turned out Chicago was just what we both needed. We were living in River North, right downtown, walking distance from where Matt’s speech therapy took place and to tons of things to do in Chicago. We both took full advantage of everything the city had to offer and Matt went to a 9 to 5 for the first time in his adult life.
I also got some freedom to have my own life again and I firmly believe every care taker needs that. We love the people we take care of dearly or we would not do it but it can be a lot especially when there is no one else to help. I had forgotten what wandering around a new city or running for as long as I wanted to was like because in the back of my mind for the previous 6 months I would always have to get home ASAP if I ever left Matt alone. There was no such thing as peace of mind because I simply did not know if Matt was ok or that if he needed 911 whether he would be able to communicate with them enough to dictate what was wrong, so I had to be present and available 24 hours a day. As a person who loves going off the grid this was beyond hard, but here in Chicago Matt was taken care of for the majority of the day so I could breathe easy and explore, wander, run to my hearts content.
The Intensive Aphasia Program gave Matt his life back. I cannot say enough good things about this program and what it did for Matt. I will never forget after the first day when I picked him up and asked him how it was and he responded with “no more talking, I am exhausted from talking”. I took this as a great sign and a few hours later as we were eating dinner he actually initiated a conversation with me.
We learned that Matt had color anomia, which explained a lot. In the rehabilitation hospital he had been an inpatient in they kept telling him if he needed to get out of bed he had to hit the red button to call them. Matt never did and it turns out he did not hit it because he had no idea what the color red looked like anymore. There was a disconnect in his brain between the color and the name of it. He saw the color green in the grass, but he would have called it purple because there was no connection between the color he saw and any name for it.
Matt got to continue to work on his apraxia, which at this juncture was his biggest problem. His mouth just couldn’t get the words out as quick as his brain thought of them. The intensive aphasia program gave him the resources to be able to slow it down and enunciate and then try it again, but they also more importantly helped him understand that if he tried three times and it did not come out right still to just move on and find a simpler way of saying what he was trying to say.
For me RIC provided me with tools for care givers and connections with other partners, family and friends going through the same thing with their loved ones. I met people, whom while they were much older than me, were going through the same things and actually got what it was like on a daily basis to not only go through everything that you had to do but also to prompt another adult to put on their shoes or get a jacket, while rushing out the door to therapy or doctor’s appointments.
In Chicago we learned so much individually and together and I believe for the first time fully grasped what Matt’s outcome could be. Every single person we encountered was pushing for Matt to return to work full time eventually and that was huge coming from what he had been through and where he started. Together we went to museums, walked around the city, tried out so much delicious food and drinks, went bike riding together for the first time since Matt’s stroke and slowly became two adults enjoying each other again.
That is not to say that there were not trying times or times when people just did not get it. Matt could not read a menu, so I got a lot of looks from waiters that did not have a clue when Matt handed me the menu and told me to order for him. They assumed I was the crazy, controlling girlfriend who wouldn’t even let him pick his own meal. I thought man if you only knew or spent a day in my shoes. I would have given just about anything to have Matt pick from the menu what he wanted and tell the server himself.
Overall, Chicago was that breath of fresh air when we needed it the most. It allowed us to get past all the noise of what was going on with his friends and family and gave me the opportunity to meet with professionals that gave me coping methods as well as told me how to navigate this new world.
I learned it was ok to not be liked by everyone because at the end of the day all that really matters is what you think about yourself and the kind of person you know you are, which I needed to learn desperately! I would love to say everything changed after Chicago and no one hated me and Matt was fully employed and speaking fluently, but that simply was not the case. However, Chicago did give us that much needed re-set.
” This is when I learned you have to give up your life as you know it to get a new one. Sometimes you need to let go of everything you are clinging to and start over, whether because you’ve outgrown it or because it is not working anymore, or because it was wrong for you in the first place.” ~ Kelly Cutrone
Never be afraid to take the leap, move on and begin again… whether that is somewhere new and different or where you have spent your whole life. It is never too late to start over.