Two months ago, on the morning after Patrick’s final Cranioplasty, I was waking up to a phone call from our neurosurgeon, telling me there was bad news. An infection it seemed, was present on the dura covering the brain during surgery. A culture swab revealed not one, but TWO types of bacteria. “I will not lie to you, this is a serious complication,” he said. And so began a month-long hospital stay, complete with a seizure, c-diff colon infection, fever, 4 weeks of IV antibiotics, 10 days in the hospital, and 3 weeks of inpatient therapy. All of this followed after an already arduous two month journey that included a previous surgery to implant tissue expanders into Patrick’s head, and 6 weeks of injections to grow new skin by stretching those expanders out with saline.
Yea, it’s been one hell of a summer.
My writing and sharing has been minimal of late, not because there wasn’t a lot going on to share, but because it seemed we were riding out the end of a roller coaster without seat belts. My hands were not free to type, as they were holding onto the rails for dear life as we careered downwards and flew upwards. But now it would seem that things are beginning to straighten out and even pick up speed, on a track that is both flat and smooth. Hallelujah. So i’m back, with the intention to begin writing each and every day, to share with all of you our continued and incredible journey.
Patrick was away from home for a month. As I wrote previously, there was an unexpected adjustment process for both of us being apart, and it didn’t go so well. But what I was NOT prepared for, was that his coming home would be an even BIGGER adjustment process than his hospital stay!
Case in point: On the day I picked Patrick up and brought him home, he had a walker. The idea was for him to transition from a wheelchair to a walker in the home. As he walked in the door he said, “This is weird. I haven’t been here in forever.” And he was right. The reality was that the home had become new to him again, and as a brain injury survivor he had spent a month learning new routines in an institution. Now, he had to relearn the home… and with a walker, no less.
Not five minutes home, Patrick attempted to use our bathroom with the walker. I stayed by his side, but as he went to sit down, he reached for a grab bar behind him that had been there EVERY SINGLE TIME he had gone to the bathroom at the hospital. In our home that bar didn’t exist, though his beautiful, neuroplastic brain had learned to expect it there.
In a cruel twist of fate, I had noticed but never paid much attention to the tiny crack that ran through the middle of the toilet tank. Down Patrick came with his full weight onto the seat, with his arm on the tank! CRASSSSHHHHH! The entire toilet shatters!!! S-H-A-T-T-E-R-E-D.
The moments that followed were book worthy: Patrick in shock, hanging onto the grab bar for dear life. Me in shock, trying to get the flood of water to stop with one hand, while holding him up with the other. Shards of porcelain everywhere, and little Prana sauntering up to the edge of bathroom and drinking from the pool of toilet water, completely unphased.
“No!” Patrick yelled. “You have to get her away! She can’t drink that water its dirty! She could get cut on the porcelain!”
He was not consolable, so I had to let go of the plug to get the cat. Water began sprouting up like a geyser, as I grabbed the cat, locked her in the bathroom and got my phone. Back into the bathroom, water now flooding the living room, I make a phone call (unable to plug the water, hold Patrick and call at the same time).
….Oh and by the way, we were supposed to be at my church gig in 30 minutes.
You should’ve seen the look on the faces of the maintenance crew when they arrived. What a comical and bizarre sight to behold we must have been. But the toilet was replaced, the mess cleaned up, and we somehow made it to mass, without I hope anyone knowing that we were doused in toilet water.
Soooooo yea. This is pretty much a microcosm of our first two weeks together at home.
We just weren’t in step with each other. We had been told about his discharge with no notice, and without a lateral transfer into outpatient, so we had no schedule to keep us on track. I had lived alone for a month, and found it twice as difficult as I’d remembered to be an active 24-hour caregiver. Patrick, as he readjusted to the correct seizure meds, had withdraw symptoms, and was raging more than usual. He was being terribly unreasonable. Anxiety was high. We fell into old bad habits, the walker quickly ended up in a corner and the wheelchair dominated our lives at home again. We weren’t doing his exercises. We were fighting a lot. Things felt abundantly stressful. And the cat… DEAR GOD OUR CAT, PRANA had become a fluffy white ball of terror.
By the time my birthday arrived, I had no idea where to turn or what to do. Had it been this hard always, I wondered? Had I just forgotten because I had some time and space to live somewhat outside of it, or was it really worse? Whatever it was, we were at an impasse. Blogging seemed nonsensical at that time, as I had never felt like a bigger impostor. TBI was kicking our butt, bad.
And then, when I had hit an all new low, a miracle happened. I think you all know what I’m talking about here; Patrick’s magical, romantic, courageous and thoughtful celebration of my birthday. That was the day, that our relationship and recovery began to unravel the tangled summer of madness, and move forward. Which is to say that if you are a survivor, and think that your injury limits your ability to make a difference in this world; think again. Sometimes one act of kindness can do more good than you know.
It was as if he had shifted our gears into motion by his act of independence. I didn’t notice at first that we’d made a paradigm shift… but things were definitely changing. At first I noticed, what can only be described in the TBI world as a “fog lift.” One day, just more of that indescribable quality of Patrick was with me that had been missing. Then, when we went to see our neuropsychologist the following week (who we have seen on and off for a year), instead of talking about his therapy etc., we got real for the first time about the challenges of TBI within our romantic relationship. I think I was afraid to admit them out loud, and of being judged. So I was surprised when he looked at us and said, “To be honest… I’ve been waiting for this.”
“What?” I blurted out.
“Some 50% of marriages end, and TBI is not even a factor in them. The reality is that the statistics regarding TBI and marriage is devastatingly high… 90% of them do not make it.”
It was difficult to hear those numbers thrown at us, but after agreeing to be totally honest, things began to get out and aired in the open. And from that, progress began to happen on that plane as well. I cannot stress enough the undeniable aide of a good nueropysche for couples counseling. If we tried to talk to a psychologist who knew nothing about brain injury, I’m fairly convinced it would be a waste of time. This on the other hand, has been invaluable. He has bridged the gap of brain injury between us a little more the past few weeks! He helps Patrick understand how his brain injury effects his life, but what I like best about him is how he, unlike all the other doctors and therapists, approaches Patrick as just a person, and not a man labeled with a thousand medical terms and diagnoses. He does not define Patrick, nor see Patrick as a brain injury. And as for me, I have quickly learned that the journey of transitioning from Caregiver to Girlfriend is going to be all sorts of uncomfortable, challenging and a daily work in progress. But what I didn’t realize, is that I’ve already been on that journey from day 1, and what lay ahead, however difficult, will be as equally rewarding as the rest of this journey has been.
(Look for Part 2 of this blog update… I had to share our difficulties to prep you for the next part – I promise Part 2 is going to gob-smack you with wonder and awe! )