{Karlton Bontrager}

The countdown has begun. Karlton’s return to the United States seems almost within reach. As the excitement within me builds, I can only hope that I haven’t overlooked anything in the preparations.

The biggest step forward came when the team at ISIS sent a fax to the Rehabilitation Hospital of Rhode Island, detailing Karlton’s accident, the course of his treatment, and his present status. ISIS sent a copy to me too, and for the first time I got to read the technical side of Karlton’s injuries and progress. The report was dated 10/29/2002, and it included an account of Karlton’s success on the so-called Mall Assessment. On 10/24, the occupational therapist took Karlton to Meridian Mall in downtown Dunedin and gave him five tasks to do. Each of them involved locating a shop and gaining information by interviewing sales staff, such as asking where the restrooms were located or finding the cheapest flights from Auckland to Los Angeles. In his own account, Karlton indicated that he breezed through the tasks. The written report noted that he used the escalators safely, and that the crowds and confusion did not disorient him. He completed all five tasks in just 25 minutes. But the occupational therapist also noted some problems in planning. One of those was having to return to the main floor before carrying out a second task on a different floor. And when the assessment was finished, he could not locate the car in the parking lot because he had forgotten what it looked like.

Both the neurologist who will be treating Karlton here in Rhode Island and the staff at the Rehabilitation Hospital of RI had high praise for the report. They said they were unaccustomed to receiving such detailed information. Moreover, they indicated that Karlton had received high quality care. That is what we had known all along, but it was reassuring to hear it from professionals States-side. Since the report documented so much progress, they judged that Karlton will not need to go to the Rehabilitation Hospital after all. More than likely, he can live at home and be seen by the rehabilitation staff on an outpatient basis. We need confirmation of that impression, however, from the ISIS team.

Meanwhile, the insurance company that is facilitating Karlton’s return to the States has been in discussion with Jennifer. Karlton would like to make a stop-over in Los Angeles to rest up as well as to see friends and family in that area before flying on to Providence. The insurance company will provide a nurse to accompany Karlton on his travels, and it is building the Los Angeles stop-over into its plan. Last I heard, however, the insurance company was operating on the assumption that November 18th was only a tentative dismissal date from ISIS. It was reluctant to purchase Karlton’s ticket on a commercial airline until it had assurances from ISIS of a firm date for his return. And so we go, round and round, trying to get the different parties involved to communicate with each other.

On Monday of this week Karlton moved into a flat of his own at ISIS. Unlike the rooms he has had at ISIS to date, the flat is a separate entity. It has a kitchenette, bedroom, bathroom, and living room. Karlton has his own telephone and television, and he is encouraged to use the kitchenette to make snacks for himself. Though the nursing staff is still available to him, they restrict themselves much more in terms of entering his quarters and interacting with him.

Meanwhile, friends from the community are keeping Karlton busy with their own schedules. More and more often when I make my daily telephone call, I learn that Karlton has left ISIS for a few hours. A friend stopped by and has taken him out for lunch, for dinner, to a party, or just to hang out together. He’s really lucky that way.

And so the excitement mounts. Plans keep changing, but the ultimate goal remains the same. Before long, Karlton really will be home.

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Many have wondered if we will continue the website now that no family members are in New Zealand with Karlton. It is our intention to do so, but Karlton has assured us that he is not up to the job. It’s a bit of a challenge for us to write from afar, but we’ll give it a go anyway.

One of the obstacles we face in arranging Karlton’s return (scheduled for around November 18) is his lack of medical health coverage. He is 23 years old and has graduated from college, so he can no longer be considered a dependent on his parents’ health plans. Moreover, neither his traveler’s insurance nor New Zealand’s ACC will cover him once he returns to this country. Furthermore, it’s been difficult to get information about Medicaid and SSDI without Karlton’s being here. The Social Security Administration did not even want to talk to me until Karlton was back in the States. Rhode Island Medicaid was a bit easier. They will accept applications within two weeks of his return.

Through the Rhode Island chapter of the Brain Injury Association (www.biausa.org), I was able to locate several rehabilitation facilities in New England. One of those contacts identified and recommended a neurologist in the Providence area. That neurologist recommended having Karlton go directly to the Rehabilitation Hospital of Rhode Island upon his return. As an inpatient, Karlton will be available for a full work-up of his case. We are hopeful that his stay in that hospital will be a short one, and that he can take part in further therapies on an outpatient basis.

Last Tuesday evening Choy-Lang and I attended a support group for brain injured people and their families. It was held at the Rehabilitation Hospital. We found the group to be open, warm, and very supportive. They were eager to learn of Karlton’s accident and progress in recovery as well as to fill us in on what to expect during his period of therapies locally. They highly recommended both the neurologist and the hospital. Afterwards, one of the co-leaders of the group gave us a brief tour of the facility. We were favorably impressed.

Another question we face is whether Karlton will need a stop-over in Los Angeles. My own flight took nearly 2 hours from Dunedin to Auckland and then 14 hours to Los Angeles. Beyond that, it was still another 7+ hours to Providence. It seems to make sense that he would need to rest in Los Angeles for a few days before continuing on to Providence. Karlton, of course, would like to stay with Jennifer and Alec, his sister and brother-in-law. He would also like to visit his family and friends in that area. But the purpose of the stop is clearly a medical one; we do not want to endanger his health by getting him caught up in reunions and other social agendas. Moreover, we want to ensure that Karlton has the medical support he needs during his stop-over.

I keep thinking that these questions will all resolve themselves in time. In retrospect, I may some day wonder what was so complicated about arranging Karlton’s return. At the moment, however, the process appears to be fraught with so many unknowns.

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I took many of Karlton’s belongings home with me, and it wasn’t until I began packing in earnest on Monday night that I realized how much we have together. I packed as much as I could, and on Tuesday morning, I ended up panicking and repacking a couple of times. Finally, I was able to get all but one article of clothing to fit. Karlton will have to transport that back on his own. At the airport, I found out that I had 60 kg of check-in luggage-the maximum allowed.

There were still a couple of items of business to see to at the hospital. I made sure that arrangements were made for Karlton to continue to attend acupuncture appointments. I also left his passport, bank account information, and credit card to be put in the safe. Upon hearing that his passport was being handed over, the nurse helping me decided that the safe wasn’t safe enough. She’d put his things in the medicine locker. It was interesting to learn (but not that surprising, after thinking about it) that the ward’s meds (specifically because of its stocks of morphine) are kept under tighter watch than is the safe!

There wasn’t time for much more before Karlton and I were taken to the airport by a friend. It is a little difficult for me to leave Karlton, especially given that nobody else from the family is with him any longer. But then again, he has only about a month on his own. He’s in good hands, and he has friends who will be taking care of him as well. I also hope that he’ll become more independent and motivated without a family member around.

Although it hasn’t always been easy for me to notice the day to day progress that Karlton makes, in retrospect, he has improved significantly in many ways since my arrival. When I first saw him, he had his left arm in a sling all day long. If he had to go to more remote areas of the ward, he would often find shortcuts which required leaving the ward, just so he would not have to walk as far. By the time I left, he wasn’t using the sling at all, nor did he need to take those shortcuts. His walking has become stronger, faster, and steadier. I know that he will continue to make progress in the coming weeks, months, and years.

I asked Karlton if he might be willing to post updates himself, but he said he couldn’t. He would forget things, and he thought it would be better to have “objective opinions” (I didn’t know mine were!). So it looks as if this might be the last update, at least in this form. Although there might be more summary-type updates, I doubt we’ll be able to have any detailed daily posts. Thanks to all of you who continue to check in. Your support has been really made a difference to all of us.

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On Thursday, Karlton went about his usual morning routine. In addition, he had another session of baking, making chocolate muffins. He saved one for me (they were really tasty!) and told me that again people had shown up to eat them after being attracted by their aroma.

After taking a bite of his hospital lunch of a baked potato with corn (which Karlton did not find acceptable), we had lunch with Nina at a Japanese restaurant. Again, Karlton astounded me with his appetite. Both Nina and I were feeling stuffed, even after letting Karlton eat some of our sushi. After finishing his bowl of udon as well as what we gave him, he announced that he liked the food at that restaurant, but the portions were too small! As we were finishing our meal, Nina and Karlton’s friend Gabrielle showed up at the restaurant with her friend Tom. It was a nice surprise for Karlton to catch up with more friends. We returned to ISIS, and Karlton had a peanut butter and jelly sandwich.

A few times during my stay, I tried unsuccessfully to catch sight of northern royal albatross and yellow-eyed penguins. Realizing that my time to see them was running out, and that my luck wasn’t so good, I signed up for tours to see them that afternoon. I left Karlton on his own for a few hours (during which he did “not much,” he later told me), and headed out once more for the Otago Peninsula. The first tour was a short cruise down to the albatross breeding area and back. There was a bit of wind, and we were lucky enough to see a few albatross flying around the lighthouse. There were also several on the ground, some displaying. We also caught sight of a Hooker’s sea lion, fur seals, spotted and Stewart Island shags, and a little blue penguin swimming. After that, I went on a tour of a yellow-eyed penguin breeding reserve. We walked through a series of hides (blinds) to watch a few penguins incubating. We even had good enough timing to watch one walk back up the beach from a day at sea. I was really excited to have the opportunity to observe all of those cool critters.

After I returned to the hospital, I reminded Karlton that we’d be leaving relatively early the next morning for Queenstown. He was sure that he’d have no problem getting up and being ready. He was really looking forward to getting out of the ward for an overnight trip, and he definitely did not want to take a wheelchair along.

Motivation is something that Karlton struggles with, and the occupational therapist is trying to help him with that. Friday was definitely no exception! When I arrived to pick him up, Karlton was just beginning to get dressed. He said that he hadn’t overslept; rather, that he just didn’t have the motivation to get himself out of bed after he woke up.

We ended up not leaving for Queenstown until after 10AM (we’d planned to leave around 8:30). Although Karlton said he didn’t want to sleep in the car because then he wouldn’t be able to sleep at night, he did end up snoozing for a fair bit. We stopped for lunch along the way, and then continued along the drive, eager to get to Queenstown. Unfortunately, we reached a point where the road was closed until 3PM! We had to sit and wait in the car until the road opened up. To my amusement, as we passed through smalle r towns, Karlton said, “It’d suck to live here! No cell phone reception!”

By the time we made it to our destination, it was raining and late afternoon. Karlton stopped by the jade shop in which his former flatmate Luke works. After looking around at Luke’s work for awhile, Karlton went back to his old flat to hang out for awhile. After a Thai dinner (“How many dishes am I allowed to order?” Karlton asked me), we went back to the friend’s house where we were staying.

Despite having slept in the car, Karlton had no trouble getting to sleep or staying that way. In fact, it was quite a task to get him up on Saturday morning. While he was sleeping in, I decided to move the fingers of his left hand. As I was doing this, Karlton flexed them backward several times. Although he isn’t able to do this when awake, I found this very encouraging.

I wanted to go visit the Kiwi & Birdlife Park, so Karlton met up with his rugby teammate Wayne while I went off on my own. During this time, Wayne filled Karlton in on some news. Sometime after his accident, the rugby team they’d played on together had won their division championships. Karlton also learned that somehow, a rumor had started among his rugby teammates that the hospital was thinking of pulling the plug on him! They almost had a moment of silence before one of their games for him. But the coach called the hospital just before that and learned that Karlton was improving.

We decided we’d better start heading back to Dunedin (how time flies; even though we hadn’t done much, it was already past 2PM). Karlton told me, “It’s not that I love being at ISIS, but I’m ready to go back now.” We stopped on the way to watch some people bungee jump off a bridge and for some fruit ice cream. Although Karlton says that his teeth are too cold-sensitive to have his own ice cream, he didn’t mind eating a portion of mine!

We stopped for pizza a little further down the road and then continued on the drive back. Karlton made it clear that he was uncomfortable sitting in the car for so long and was eager to reach our destination. He had a little bit of trouble estimating the remaining time; he sent a text message to Jennifer saying we’d be back in 40 minutes when we still had 2 hours to go.

Once we reached ISIS, it was pretty clear how tired Karlton was. But he did say that it was really good to be out of the hospital for awhile and to catch up with friends he hadn’t seen in a few months.

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Wednesday was an eventful day. I didn’t hear Karlton complain of boredom a single time, so I trust he was kept busy enough. Karlton enjoyed his outing to the the art gallery in the morning. He had his lunch and rode the exercise bike as usual, informing me that his physio session earlier that day had been challenging.

After his session on the bike (incidentally, Karlton is consistently improving in time and distance on the bicycle), Sarah, the staff member who coordinates different activities, asked Karlton if he wanted to make scones. Though not too excited about the idea, he agreed (“Anything to get me out of here!” he later told Mom).

While the scones were baking, we found out that a discharge date has been set for Karlton. Although the logistics of his flight have yet to be worked out, he is scheduled to be released from the hopsital on the 18th of November. Of course, to Karlton, that feels like the distant future, but it really is coming up soon. The smell of the baking scones attracted people to the kitchen, and most of the food was gone by the time we left for acupuncture.

As usual, Karlton dozed off during his acupuncture appointment for a little while. But then I found myself getting sleepy after Karlton awoke, much to his amusement. I woke up to his laughter as my head did one of those elegant jerky moves that they often do when dozing off in an upright position!

After dinner, Karlton’s friend Rachel, with whom he’d been snowboarding on the day of his accident, came to visit. They went over to Becci’s house to hang out. I was happy to leave the hopsital early, only to later realize that I’d started a load of laundry there. I returned to take care of it just after Rachel and Karlton returned. Rachel had a drive ahead of her and had to leave just after returning, but Karlton was really happy that she had stopped by.

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On Monday afternoon, Karlton asked me if we could please go to campus the following day for the $2 lunches served there. So I made sure to arrive at the hospital in time to take him to lunch on Tuesday. I found him planning a trip to visit an art gallery on Wednesday. When I asked him if he wanted to go to lunch, he hesitated and asked ‘Who’s going to pay for it?’ Karlton seems to be pretty worried about money lately. I think he’s concerned that he doesn’t have a job now and might not for awhile.

We did go to lunch, and Karlton really enjoyed it. He was pleased when the woman who coordinates the lunches said that she might stop by the hospital sometime to take him food. Unfortunately, because there were no tables for us to use (we had to sit in chairs with our plates on our laps), Karlton ended up feeding his pants almost as much as he fed himself!

After returning to ISIS and doing his daily exercise bike routine, Karlton announced to me that he was feeling unmotivated. Luckily, soon thereafter, two of the physiotherapists showed up. One of them, who Karlton has nicknamed the Medieval Torturer because she pushes him to work so hard, had been away for the past two weeks and was determined to get him back to work. They wanted Karlton to walk up and down the hill next to the building. It was a challenge for him, and he complained that his right leg and foot were hurting. This was because he was trying to compensate for difficulty using his left leg by depending too heavily on his right leg. After a brief rest at the top, Karlton walked back down without too much difficulty (he had thought that he’d lose his balance and fly down the hill). Although they said that Karlton had become a little lazy with his left leg, the physios seemed pleased by Karlton’s hill climbing.

After resting a little bit from the walk, and with a little nudging from the occupational therapist, Karlton did his laundry (including his curry pants from lunch). He also found out during this time that the physicians had approved his leave on Friday for an overnight trip to Queenstown. He was pretty excited about that, but he was also tired and hungry, so I heated up some of the food Mom had made and frozen for him when he was here.

After that (and dinner which soon followed), Karlton showed how worn out he was by falling asleep in his recliner at around 7PM. He decided that he’d better get ready for bed then. I’m not sure if it was the increased physio work that wore him out or if it was something else, but I’m sure going to bed early did him some good!

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Arriving at ISIS on Monday, I found Karlton thanking the physician in charge for allowing him to spend Saturday night away from the hospital. It seems that he really appreciated being able to sleep in a ‘normal’ bed. I also know that he enjoyed being able to watch the rugby game on TV. I learned from his last eye appointment that Karlton is somewhat myopic (though this might change), and he had been unable to see what was happening at the game that he attended a few weeks ago with Sam and Nina.

Karlton informed me that morning physiotherapy had consisted of shoulder, hamstring, and stair-climbing exercises. I was pretty tired, and after his afternoon exercise bike ride, Karlton didn’t seem to be up for too much either.

Liz, the occupational therapist, came by to tell Karlton that she would be keeping track of how much he initiates activities. Although he has been doing a good job meeting many of his daily goals, he often fails to take the initiative (e.g. rather than sitting up and getting out of bed in the morning, he will call a nurse to help him get up). She also told him to get in the habit of having his left arm participate in activities (even if only by its location) rather than having it hang idly to the side, as it usually does. Finally, she suggested that he participate in some of the cooking classes offered by ISIS.

In his acupuncture appointment, Karlton seemed more sensitive to pain than he had in the previous sessions I’d observed. Although he fell asleep again during his foot massage, he was intent on being awake for needle placement. No way was he going to subject himself to a wake up needle stick again!

After Karlton had dinner (macaroni and cheese–his favorite!), I left to do some volunteer work with a sooty shearwater (sea bird) researcher out on the Otago peninsula. Karlton informed me that after checking his email, he would most likely go to bed. Although he didn’t seem too excited by the OT’s suggestions, I hope that he will go along with them and continue to take steps toward independence.

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Karlton slept in on Saturday, which was good because he had been up late. He said this was the first time he was able to sleep so late.

I asked him if he’d show me where Baldwin Street (supposedly the steepest street in the world) was. He agreed, but I had a really tough time getting him to put pants on. Karlton was sure that he would be warm enough in shorts, even though it was really cold out. Finally, he agreed, and we left.

It was a really strange feeling driving up and down such a steep road! I joked to Karlton that I’d push him up in a wheelchair and just let him roll down. He actually had run up and down the street several months before.

After that, Karlton wanted to go to Arc Cafe to hang out with friends. Several people he knew were there. We made plans with Sam and Nina to watch a rugby game that evening at the motel. Karlton had permission to spend the night there (his first night out of the hospital!).

After having dinner at the hospital, we packed up Karlton’s things and went to the motel. After Nina and Sam left, Karlton decided he was hungry and made himself some pasta. He is slowly beginning to do a few more things for himself. After eating, he went to bed.

In the morning, I woke up feeling really sleepy. Karlton was awake though, and he told me that he wasn’t going back to sleep. He’d lie in bed for about 5 minutes more, he said. Two hours later, he finally got up! I’m sure the rest was good for him; I was just amused at how confident he’d acted that he wasn’t going to sleep any longer.

Nina had baked some bread and invited us over to have some. We first had to get Karlton’s afternoon meds from ISIS, and Karlton really took his time getting his things packed at the motel. It’s interesting to note his sense of time. He wanted to tell Nina that we’d be there in fifteen minutes, even though he was not even close to ready to go. He even wanted to make a phone call before heading to ISIS.

We finally made it, an hour later, to Nina and Sam’s. They had a fire going, and the fresh bread was really tasty. Karlton really had a good time hanging out with them and another friend Dave.

After that, we went back to ISIS. After having dinner, Karlton and I went through his belongings to determine what I should take back to the U.S. with me. His bags aren’t very large, and it’d be cumbersome for him to have to pack a lot of things. He has quite a lot of stuff, but he was willing to temporarily part with much of it.

I was pretty tired from my trip and the weekend, so I left relatively early that evening. Karlton told me that he had really been making an effort to be more independent over the weekend. Let’s hope he keeps up the good work!

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Apologies for taking awhile to get this update out. I was away for a short trip from early Thursday morning until Friday evening.

Wednesday was an unremarkable day, as far as activites go. Karlton went through his usual routine of waking, showering, physio, and some occupational therapy. As he often does, Karlton fell asleep during the massage portion of his acupuncture appointment. I felt a little sorry for him when he was awakened by a needle being placed in between his toes! It was apparently one of the more painful needles to beging with, and I’m sure it seemed even worse by it being a wake-up call.

Paul was supposed to stop by around 5, but unfortunately, we missed him because of the acupuncture appointment running late. But he and Karlton made plans to have lunch on Thursday.

On Thursday, Karlton had an appointment to receive his new leg brace. He said that it is much better than the previous one (the new one was made from a mold of his leg).

He had lunch with Paul and Jamie as planned, and in the afternoon, Becci took him to Aidan’s place and then to a sauna. Karlton said he’d never sweated so much in his life! He had a good time on both of those outings, and I’m glad that he had visitors while I was away.

In the meantime, I was on Stewart Island. It was a quick trip, and it was a rainy day, but it was great. Although I had to get up at 4am for the drive to catch the morning ferry, I managed to stay alert for a quick bus tour of the island as well as a 4 hour walking tour of nearby Ulva Island (which is a bird and plant sanctuary). I left on the Friday morning ferry and drove back to Dunedin along the Southern Scenic Route, stopping at a few attractions along the way.

Karlton again had visitors on Friday. His friend Erin from California stopped by in the afternoon. In the evening, he went out to dinner with Tsukasa. When I returned from my trip, he was still out. It wasn’t until after 11 that Karlton was ready to have me stop by. He was in good spirits; I helped him get ready for bed and left the hospital around 1am.

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I met Karlton at Dunedin Public Hospital on Tuesday morning for an eye appointment. He had both his vision and his eye muscles checked. Although his focusing appears to be stable (i.e. no change since the last check), his muscles (or eye alignment? I didn’t quite catch it) have changed. Until everything has stabilized, we won’t know if he’ll need eye surgery. It might be up to another year before they’ll be able to determine this.

Returning to ISIS, Karlton told me that he’d done shoulder exercises for physical therapy. After lunch, he went to ride on the exercise bike.

After that, we had a meeting with one of the physical therapists and the occupational therapist. They wanted to give Karlton a little more motivation to take care of himself. Together, they formulated a list of short-term goals for Karlton. In about two weeks’ time, we’ll meet again and assess his progress. Karlton is so eager to go home, and his work toward these goals will help determine when he is discharged.

Some of those goals for Kalrton are to be at his physical therapy sessions on time (he apparently was often quite late for them last week), to dress himself properly (he usually refuses to put his left arm through the sleeves of his long-sleeved shirts, preferring to let his arm hang at his side), and to be able to prepare snacks and drinks for himself. Although Karlton told me that he didn’t like the meeting at all, I think his work on those goals will be constructive. It was also interesting for me to hear the things that Karlton is capable of doing alone. He often asks me for assistance with many of those things.

Additionally, we were told that he will have more occupational therapy checks throughout the day. He received a new schedule for the coming weeks, and it appears pretty full on week days. I hope that this will keep him more occupied, though I’m sure Karlton will still complain of boredom.

After a meeting with the speech therapist (which, of course, Karlton believed to be unhelpful), it was dinner time. ISIS has admitted a number of new patients in the past two days, and Karlton talked with a few of them while he ate.

I was intent on having Karlton do things for himself that evening. So when he wanted a peanut butter and jelly sandwich made, I accompanied him to the kitchen but had him make it himself. Similarly, I had him remove his own shoes and clothes when he got ready for bed. Once I leave New Zealand (as well as once he’s discharged), he will need to do all of these things on his own. Although he’s feeling lazy about doing them now, I’m intent on having him get used to doing things himself.

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