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.
Once 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.
I had to take a semester off from my post graduate elementary education program, with the exception of one online class that I could not drop, to be a full time care giver, which gave me a new found respect for working moms. My days consisted of waking up, getting breakfast ready for two people, one who now had an insatiable appetite, driving around the state of Colorado to Matt’s various doctors, refilling prescriptions and learning how to dose out no less than 10 drugs on any given day. All of this was coupled with making sure we ate both lunch and dinner, driving to and attending therapy with Matt so that I would know what homework I had to work on that night with him, helping him shower so that he was careful with his side of his head that lacked a protective skull and doing the work for my online Statistics class. I did not know the definition of tired until that moment.
Oh and let me not forget to mention that it snowed several feet every week during this time period, so on top of just trying to navigate all of this I had no garage and an apartment where ice was a huge issue so I woke up before the sun rose to dig out my car and shovel and throw down sand so that my boyfriend without a skull did not trip and fall. One of the things I would learn was that Matt could not tie shoes. Ironically, I had bought him the most intense snow boots, which naturally needed to be laced up every morning before we went anywhere. I thought we did not make it through the stroke for Matt to go down on some ice 4 months later. I often say that winter all I did was dig out my car and lace those snow boots. The days were a whirlwind of driving and information being thrown at me. We had to go to a hematologist at a cancer center three times a week to adjust his blood thinners to make sure his blood was neither too thick nor thin and rule out any rare blood disorders.
A task that due to my personal experience with cancer was absolutely gut wrenching. Every time I walked through the door I had to not only be physically and mentally there for Matt but also give myself a pep talk on how it would be ok and to just focus on why we were there. Let me tell you that is near impossible when you fully comprehend the magnitude of what every one else is going through. Despite the cancer center having stunning views and a great staff, the overwhelming feeling in there was desperation and sadness. It reminded me of the month I spent in the ICU with Matt where you go through the motions of life, hoping it all matters, but death is at every corner, with every beep, code blue or test. The cancer center was by far the lowest points of our week. Matt hated being there as much as I did and while we could be hopeful everywhere else it was near impossible for us there.
The irony is that within a few weeks Matt was cleared of rare blood diseases but the hematologist was still insisting on monitoring his INR level, which in lay terms means basically how thin the blood thinners he took daily were making his blood. We knew his primary care doctor could do this from our grandmothers but still we proceeded until Matt made it very clear that he would no longer be going there, so the protocol was see the doctor then make the next appointment on the way out. We scooted past there with no appointment only to be called a day later. Since Matt could not speak I, of course, had to do the dirty work of telling them he would not be returning. I am terrible at letting people down or saying no so this was not easy for me, so I reacted in what we now affectionately call the Lisa breakup method as in I said I am so sorry but Matt doesn’t want to see you anymore and hung up the phone. Humor is everywhere if you look for it and this was a situation that still to this day we laugh about.
I look back now on that year of my life and it as if it all blurs together and I am the one with the “good” memory of it. Matt says for him it was like one really long day. What we knew when we left California was that Matt had expressive aphasia (meaning he understood everything people said to him but was unable to express himself back or as he says it was like literally being stuck inside your own head), would need a second brain surgery to put a new plastic skull where his had once been, and that he would need to attend occupational therapy for his weakness in his right arm and hand. What we would learn is that on top of the aphasia Matt had apraxia, meaning that when Matt did go to speak he could not reliably count on his motor skills to match up with his speech-in essence due to the damage to his brain his brain now sent the words to his mouth quicker than he could physically open his mouth to get them out. We also learned that his inability to read was due partially to aphasia and partially due to a hemianopsia or visual field cut on his right side, so basically when he was attempting to read half of the page was being cut off so not only was his brain having problems processing it but he also simply wasn’t seeing it.
Lucky for us Matt’s therapy team in Boulder figured this out pretty early on and gave us the name of an eye doctor that specialized in recovering vision after brain injury. Matt was also referred to an occupational therapist that specialized solely in vision recovery, so we began the work of re-training and teaching his brain to pay attention to the right visual field again. It was truly amazing to see what those two specialists were able to do for Matt. He got special glasses with prisms that shifted everything to the left for him so he could began the task of learning how to read and he got eye stretches and exercises to do daily to re-train his brain to pay attention to the right visual field even though the brain did not see it naturally anymore. Matt learned all sorts of compensation techniques to just make sure he scanned everywhere when he was in the world, since he now knew his eyes could not be counted on the way they once were.
It was a blessing that I had been a kindergarten teacher and was in a post graduate program learning even more about exactly what I used now in my every day life. I knew how to teach people how to read, write and communicate and this would be more valuable than I could ever imagine. Matt was not picking up “Moby Dick” anytime soon but we could try children’s books together at night. Reading windows became huge for him as they limit the amount of words you see on the page so make it a lot easier for your brain to focus . I will forever be grateful for my teaching background because I do not think Matt would have been in anywhere near as good of shape without the patience and tools I had learned teaching.
We got in a groove finally and started to make sense of our new world.
The oddest part for us I think was that our life as we knew it stopped but everyone else’s life went on virtually unchanged. Our focus was getting Matt well enough to attend an intensive speech therapy program for a month in Chicago in mid April. This meant getting a colonoscopy to figure out for sure whether he had Crohn’s or Colitis, in the hospital he had been much to sick to have this procedure done so it was a best guess at this point that he had Crohns, and getting the surgery to put his skull back in his head. Other people were getting engaged, going to bachelorette parties, getting married, having babies, going to concerts and on vacation and we were just trying to get through the day with some semblance of sanity.
For Matt he watched his friends live their recreational drug lifestyle and still invite him to go to events where he knew this was the main focus with little regard for him and what he had been through. It was like they expected him to go back to the person he was and couldn’t comprehend that Matt didnt’ fall and sprain an ankle. He had a major stroke due to complications from Crohn’s disease and those very recreational drugs they were doing, he had two brain surgeries and on a daily basis fought for his life.
To say that that those three months in Colorado were life changing would be the understatement of the year. It was as if we woke up one day and were now 75. However, the one thing Matt and I agreed on from day one was that we never wanted any semblance of a boring life and we pretty much got that from day one, though I am not going to lie there were days where I would’ve given anything to know boring for a minute, but c’est la vie.
Matt got his second brain surgery with success and found out that unfortunately he did have Crohn’s Colitis pretty severely, but for us it was the beginning of really starting to figure out this new life together before we uplifted our lives and moved to Chicago for two months.