All in his Head

Talking

Almost one month had passed since Matt had woken from the medically induced coma. He was still on the neurological ward, but making lots of improvement. He was finishing a course of antibiotics but all his stomach flu symptoms had gone. He could swallow and he was talking, although a lot of the time his words weren't understandable, he was producing unintelligible sounds, mixing words and speaking gibberish. The speech therapist had brought him a fixed display device. There were large pictures and words that Matt could point to when communicating, Kelly and his team had to constantly remind him to use it, and it was a struggle. Matt would gaze at it for a while before using his palm to clumsily touch one of the large squares, or he'd ignore it all together, prompting concerns for his cognitive ability and executive function skills.

Physically Matt was gaining strength slowly, though he could still not sit up without support, and he could not walk. He could stand with some help though and he started reposition himself on the bed, mainly moving onto his side, curling into himself, a position Matt had always favoured. The involuntary movements were still there, they were muscle contractions that seemed to come out of nowhere, generalised secondary dystonia, the doctor had explained to Kelly. His upper body and mainly arms were the worse effected, and on occasion they'd needed to give him medication to stop them, they were decreasing though, which Kelly took as a good sign that the medication he was on was working and he was getting better. There was focal hand dystonia too, causing his hands to cramp or tremble, so much so that when Kelly cut his finger nails, he had to carefully uncurl several of his fingers to access the nail. The physical therapist had given him some exercises, and a few devices to help improve his movements.

Kelly had made the decision to trim Matt's hair since it had become difficult to manage. Despite the nurse's best efforts, his hair had become matted, Matt wasn't always the most cooperative patient when he was awake, he could often be quite agitated when he was confused, and disliked being touched. There was a short patch growing where the ICP catheter had been drilled into his skull, and it had thinned out because of the medications he'd been taking. So Kelly brought his trimmers from home and buzzed off Matts hair, he had to do it in two sessions because Matt started to become distressed, but he got it done, and Kelly actually liked how it looked. Although he knew Matt looked good to him all the time, but he had been worried about doing it without his consent, although he knew Matt would understand once he was feeling better, and if Matt didn't like it, it wouldn't take long for it to grow out. Kelly was impressed that he'd managed it though, he'd almost asked Shay to do it, but with Matts erratic behaviour, he knew it was best for him to try, and he'd done a decent job.

"Ok, Matt, next card," Kelly said, lifting up the next A3 sized card with a letter, word and picture displayed brightly. "Ok, C is for…"

Matt gazed at the image for a short while.

Kelly repeated himself, unfazed.

"Meow…" Matt muttered.

"C is for Cat. Can you repeat that, baby? Can you say cat?" he asked. "C is for Cat."

Matt looked at Kelly blankly.

"That's ok. Let's have a look at D," he said, picking up the next card. He held it in front of Matt. "D is for…" he began, urging Matt to finish the sentence. The word and image were displayed on the card.

"S… s…" Matt tried. A frustrated expression appeared as he struggled. "Ss… soft…"

Kelly smiled. "They are soft. D is for dog. D-og."

"Brown, it's… it's brown," Matt said quietly.

Kelly quickly looked at the image on the card. "It is. Erm… the dog is brown." He grinned. "Ok. E is for…"

Matt turned his head.

"Had enough? That's ok, we'll get through them all one, maybe we should start at E tomorrow, hey?"

Matt opened his mouth but nothing came out.

"Use the board if you're struggling," Kelly reminded him, but Matt just let out a short huff.

Matt glanced at the board.

"Wanna do something physical… ok that sounds a little dirty…" Kelly added. He looked at Matt, almost waiting for him to reply with a dirty joke, or at least chuckle and roll his eyes, but there was no recognition. "Erm, right, let's get that tub of putty out, make some shapes, yeah?"

Matts eyes followed Kelly as he stood up, clearing away the cards and getting the box of therapy putty from the shelf. There were four little tubs, each a different colour and strength. Matt was using the extra soft, and soft pots at the moment. Matt smiled when Kelly placed the two tubs on the table in front of him, it wasn't Matts usually blinding smile, it was small, and almost seemed like it wasn't natural, taking more effort than it should, but it was good, he was communicating.

When Doris arrived, she watched Kelly and Matt from the door, Matt was using the therapy putty and Kelly was doing his best to assist, without actually doing anything other than being encouraging.

"Is that a dog?" Kelly asked Matt, turning and giving Doris a smile.

"S… s…" Matt began, shaking his head. "Soft."

He smiled. "Is it a cat?" he asked again, studying the flat shape Matt had constructed.

Matt just shook his head once more.

Doris smiled. "It's an alpaca, isn't it, Matt?"

He looked up, not realising that Doris had arrived, but he didn't give it much thought.

"Are you making animals?" Doris spoke as she sat down next to Kelly. It was better that way for Matt, sitting on opposite sides of the bed didn't help his concentratation.

Matt looked at her but didn't respond.

"That's probably enough for today," Kelly announced, figuring Matt was tired now, but when he started to clear up Matt slammed his palmed down. "Ok, you can keep going then," he said, expression blanching.

Determined to keep going with the task at hand, Matt focused on the putty, slowly gathering it back together.

"Are you worried about tomorrow?" Doris questioned Kelly quietly as Matt ignored them.

"I'm fine, thank you," he responded.

"I'd be surprised if you weren't worried," she continued.

"I'm actually looking forward to it," he admitted. He was going back to work tomorrow.

"So you feel bad about that?" Doris presumed, she knew the man well enough by now.

"Yup…" he said, letting out a small sigh as he watched Matt's hand movements.

"I'll be here, he'll be fine," she told him.

"Because he won't notice… that's what I said to myself, he won't notice if I'm not here, so it won't matter that I'm not," Kelly scoffed.

"He knows when you are here, that's what matters."

"I just make him do all this stuff…"

"This stuff is important, that's why you keep you encouraging him, you're helping him to recover," Doris said, but even as she spoke the thought entered her mind; what if this was it? What if he didn't recover much more than this? Even she had to admit, it was hard to see Matt like this. The avid reader unable recall the alphabet. The independent man now dependent on others for every basic need. The fierce leader unable to utter a coherent sentence.

Kelly smiled and his focused returned to Matt, who was squishing the putty in his fingers, it was a good exercise by itself, but Kelly had read that stimulating him could help. "Hey, Matt, will you make a rectangle shape for me?"

Matt was looking at him, focused on him.

"A rectangle," Kelly repeated himself.

Matt looked at the putty in his hands and after a while he got to work on Kelly's request.

"Thanks, Matt, that's really good," Kelly told him. "Couldn't do this last week, you're doing well, baby."

Matt spoke, but the words were garbled and strained. He frowned when Kelly didn't respond, quickly becoming frustrated that he wasn't answering him.

"Matty, Matt, it's all right, I'm sorry I didn't understand. Can you remember, the doctor said sometimes when your brain can't find the right word, it substitutes it for others. How about you use the board?" Kelly said, offering it to him.

Matt looked down at it, scanning the pictures and jumbled letters.

"Ok, it's not there?" Kelly presumed. "Do you want to try holding the pen again? Try writing it?" he asked, worried, because he could see how agitated Matt was at being unable to communicate.

Matts expression changed; he was looking at Kelly blankly.

"Want to get some rest? I'll dim the lights, get you another blanket?"

He nodded wearily as Doris started to adjust the bed so he was lying flat. Kelly draped another blanket over Matt, slipped his glasses off and dimmed the lights. He'd fallen asleep before the two of them left the room.

Kelly was pleased to see Matt after his first shift back. He washed and sanitised his hands and stepped into the hospital room, Matts risk of infection had lowered now, but they weren't taking any chances. The nurse was with Matt, setting him up for his third four hour infusion of Rituximab. One more dose was planned in a weeks' time, along with a second dose of cyclophosphamide.

Matt didn't acknowledge Kelly until he spoke. "Hi, Matt, how are you?" he asked him, at times he had to remind himself to speak slowly and clearly, trying not to use any slang words, so that Matt would have a better chance a comprehending him.

He looked at Kelly and gave him a smile.

Kelly smiled back, leaning in to push Matts glasses back up his nose.

Matt moved his head back into the pillow that was supporting it, Kelly just continued to smile as he spoke. "It's ok, they've just slipped a little," he said as he repositioned them. "There, good as new."

"Slept through the night," the nurse informed Kelly as she finished setting up the infusion.

"Slept through the night?" Kelly repeated, beaming. Although Matt slept most of the time, his short bursts of awake time were scattered throughout the day and night.

Matt simply smiled because Kelly was, he didn't know why though.

"Meds all are sorted," the nurse told Kelly. "I'll be back in later."

"Thank you," Kelly responded. As she left he turned his full attention back to Matt. He didn't say anything, he just took his hand.

There was already talk of Matt being discharged once he'd had his second dose of cyclophosphamide. He would still need regular treatment for another five months, but it could be done on an outpatient basis, once they were satisfied he no longer needed second line immunotherapy they'd start him on a steroid saving medication which he'd be on for at least one year, along with steroids for three months until it was in his system and working, and afterwards he'd still need check-ups for another three years because of the chance of relapse.

Doctor Murphy had given Kelly some information on several brain injury rehabilitation places that would continue to help Matts recovery. Kelly had dismissed the idea right away, but whilst he'd been lying awake in his quarters last night, he starting thinking about them, because he knew it wasn't practical for him to take care of Matts current needs every hour of every day. Matt needed round the clock care, there was no a single thing he could do to look after himself right now, and it had hit Kelly hard when he realised it, because despite some improvements, Matt was still entirely dependent on those around him.

"Kel…"

Kelly grinned. "Hey, baby."

He was gazing at Kelly, expression perplexed.

"Are you ok?" Kelly asked him.

Matt frowned.

"Use your board," he reminded Matt, moving it closer to his hand.

Matt looked down at it. The letters were nonsense, he could make any sense of them, and there was only one suitable image. He tapped it with his finger.

"You have a question? It's not on the board," Kelly responded. "Do you need something?"

Matt shook his head and his shoulders dropped. He spoke. "D… dohi plifal… b.. be… besloor…"

"I'm sorry, Matt, I don't understand. It's not your fault though. Your brain is making words up sometimes," Kelly explained.

He shook his head again.

"The doctor said, sometimes you know what you're saying, but the words that come out aren't the same as in your head… I'm sorry. We can try again later, I'm sorry."

Later that day, Kelly made a call to Matts speech therapist, wanting to know if there was a more advanced device for Matt. He hated to see him getting frustrated, and four days later, the therapist brought a long a dynamic display device to Matts session. Kelly sat in whilst the man explained the device to Matt, it was basically an advanced version of the board they'd previously using. It was a touch screen device, about the same size as an iPad, the display could be altered and there were several pages of options, including custom words and sentences. The therapist had set it up with large bold font, each square also contained a picture as it was obvious Matt was still struggling to read. The devices were expensive to buy, and the programmes cost extra, so they were renting it. Kelly had also been looking into renting an electric wheelchair ready for when Matt was discharged, he wanted to try and give him some independence. The physical therapist had Matt using a wheelchair the other day, but he couldn't push it himself, and needed a lot of support sitting, he was getting stronger and could support himself a very short time, but he grew tired incredibly quickly and really struggled to even hold his own head up.

Kelly watched, trying not to interfere, as the therapist explained the dynamic display device to Matt, he wasn't being very responsive, but he had already had a physical therapy session earlier on. He moved onto some voice exercises, helping Matt to use his throat muscles, he started with some tongue exercises. They had a printout of several swallowing exercises which Kelly would help Matt practice with between sessions, and he was hopeful Matt would be able to eat soon although he'd expressed no desire to do so. The NG tube had been changed twice now, and although Kelly knew how helpful it was, it was just a glaringly obvious sign as to how dependent Matt was at the moment.

Matt became interested in the new device a few hours later. He'd had some sleep and woken to find Doris with him. Kelly had explained the device to her when she'd arrived, she then explained it to Matt again, who began to use it, answering a few simple questions for her.

As they spoke to each other Matts arms started move involuntarily, then his whole upper body. His muscles were contracting uncontrollably and he gasped. Although it wasn't the first time Doris had witnessed his dystonia. His attacks sometimes lasted quite a while, long enough to warrant giving him some muscles relaxants, that wasn't the case now though. It soon subsided and Doris wiped away the tears from his face. He looked so lost and confused, lost like the boy she had met in the library all those years ago.

"It's all right, Matt, it's all right, it's over… close your eyes, I'll read to you."

TBC