Surgery has a way of throwing your entire daily, “recovery routine” totally off course. If TBI were a train, and the tracks were recovery… surgery is one thing that can easily derail you.
It’s been a week since Patrick had tissue expansion surgery, and “Frank” and “Stein” (the names of the 2 tissue expanders), joined Team Patrick. We’ve been trudging along together, but definitely not with the same spring in our step. For the first several nights, we had to set an alarm on our phones every four hours to administer pain meds. It seemed that there was no position that Patrick could find comfort in while sleeping. Then, his face swelled up like he went 15 rounds with Mike Tyson! Nobody warned us that this would happen, which irked me, since I asked a thousand questions before we were discharged. He couldn’t see out of his left eye, so we went back to using the wheelchair. But pushing the wheelchair around again, caused my left knee to ache like it had months ago. Then, I twisted my ankle at church on Sunday. Sufficed to say, we’ve been feeling pretty beat up and bleary-eyed.
I am an over-achiever, which I don’t say as necessarily a positive thing, but more of just a factual statement. So in preparation for surgery, I assumed we would plow ahead with our daily schedule without much trouble. Every Sunday night, I create a dry erase board with both of our weekly schedules laid out. I also prepare a checklist for us to mark off our goals each day. Well, Sunday rolled around, I hobbled on over to that board, took one look at it, and laughed. NOPE.
Things sort of all came to a head yesterday for both of us. We’d been cooped up in the hospital and then the apartment for going on 150 hours. The days were blurring together. I’d worn my bathrobe for way more time than I’d like to admit. But I woke up, with good intentions, and decided to go to Yoga. My good intentions withered away though, as I laid on my mat and realized my Prana was nowhere to be found. As my instructor took us through our flow, I felt myself falling asleep. We used the wall to do gentle backbends and spinal awakeners, and I just heard everything crunching. I wished I had Nama-STAY-ed in bed.
As I walked out into the sunlight, I felt seriously crabby. I texted Patrick a giant load of complaints.. i.e… “we need to go to sleep earlier”, “we need to start our routine earlier”… “you need to take your shower in the morning.” Well, ever since Patrick’s accident, he has become an emotional sponge, and will soak up the energy around him. He immediately sensed my attitude and began to mirror it. Sensing this, I turned myself around as quick as I could, and told him I wasn’t blaming him, and we should enjoy the day. (The day, btw, was to consist of an hour drive to Cooper for a follow-up appointment with his plastic surgeon). A few minutes into driving, Patrick called me up. “Hey… ummm..” he said. “What’s up?” I replied. “I destroyed the cereal box trying to get it open.”
Patrick has left sided weakness so he has trouble opening boxes. Yet, he wants to use new boxes of just about anything, even if we have already opened boxes in the cabinet. Its not his fault. His brain just doesn’t see any reason to use what is already there. One day I found 6 bars of soap in the bathtub, 3 bottles of shampoo all half used, and two conditioners. When I ask him why he opens the new ones, he says things like… he just doesn’t like using the soap after it gets to a certain consistency.
Again, none of this is his fault. It is his TBI doing a number on him. And a shredded box of cereal… who cares? But in my state of mind yesterday, it drove me crazy. And I ripped into him like a monkey on a cupcake. I went into what I like to call “mom mode.”
“Why did you open another box?” I said. “Didn’t you see that I opened a box last night for you, because I KNOW you like to eat fresh cereal, even though we have two boxes already open?”
“ I didnt know,” he said.
“From now on, just eat the cereal that is open. There is no reason to open a new box. You eat the cereal in one box and then you throw it out and then you OPEN another box!!!”
I had broken the cardinal rule of romantic relationships: you never belittle or talk down to your partner. So, I shouldn’t have been surprised when Patrick’s brain, overcome with guilt and shame, triggered an outburst of rage. He began screaming into the phone about being worthless and not knowing why he survived, and was it any wonder that he gets mad all the time?
And THEN I did something even worse.
I hung up.
I shouldn’t have done it, but I was feeling just as flooded as he was in that moment. I needed to calm down before things got worse. I took 10 deep breaths, and then called him back.
“I’m sorry, love.” I said. “I shouldn’t have scolded you like that. You’re a grown man, not my kid. And I shouldn’t have hung up. It’s freaking CEREAL. It doesn’t matter at all. And I’m proud of you for trying to open the box.”
“No,” he said. “It is never, EVER, ok for me to get mad like that. I’m blowing up at you? You’re doing everything for me.”
We stayed on the phone until I got home, but I could tell that Patrick was still agitated and frankly, so was I. Still, we embraced and kissed and said we were sorry again, and we tried to move ahead. I poured the cereal into tupperware containers (why hadn’t I thought of that before?), and began to make myself breakfast. I opened the refrigerator door and raised the little dairy drawer to get out eggs, when suddenly, three eggs in succession fell onto the floor, splashing raw egg onto my feet. Just like that… plop…Plop..PLOP.
And in that moment, I felt my sanity unravel. I launched into a cleaning brigade muttering under my breath. The kitchen was messy, but suddenly it looked disgusting to me. I was scrubbing the counters with hostility and maddening frustration. My flip-flops and toes still had egg on them. For about 15 minutes I busted through the house cleaning, muttering, & cursing the skies. And then suddenly, I stopped. Out onto the balcony I went to take 10 more deep breaths. I looked out over the ocean, down at my flip flops, over at Patrick, back at my flip flops. And then, I began to belly laugh. HARD. I belly laughed for a solid 5 minutes, tears streaming down my face. Patrick laughed too. It was good to feel relief.
We drove to Cooper. Patrick slept the entire way. The anesthesia from surgery has done a real number on him. He is exhausted. His spasticity has increased. His bowels were for a time, semi-paralzyed (you can use your imagination how we solved that problem). The pain killers have him cognitively spaced-out. He isn’t walking nearly as well as he was before. But the doctor said his head looks good and is healing well. She will take the stitches out next week, and do the first injection. She showed me how big “Frank” and “Stein” will get by the end of this process and my eyes widened. Patrick looked at me and said, “I’m going to LOOK like Frankenstien when its over. Like, the REAL monster.”
By the time we got home, we were too tired to make dinner. We got in bed around 8 p.m and slept straight-through the night. For the first time in forever, I dreamt one of those long, detailed, full color dreams I was once so accustomed to before TBI entered my life. Patrick was in it, and the dream was magical.
So to sum up, we are struggling a bit. We are in uncharted territory. We’ve both been through a Cranioplasty before, but never tissue expansion. We’ve decided to do a “Summer of Surgery” web series to share with all of you on YouTube; one video every week. We want to do this so that anyone in the future who has to go through this, will have our experience to learn from. We have yet to talk to anyone who has been through it, and we are honestly, quite nervous.
For now.. please keep sending light and love our way, and prayers if you pray, that we can get back up on the tracks as soon as possible.