venturing out for Ellen’s birthday

33333 Reminder: Laura Fest fundraiser featuring a night of rock this Wednesday at the good ship in Kilburn. See below post for details.

3

333332I apologise for another long gap in updates, not having written since the sixth of November. Since then I have been occupied by the continuous planning for discharge, learning about different sources of funds required for care in the community. Various legal complications, limits and preconditions make this an interesting task. It also makes you appreciate what a difficult system it is to maintain for the government due to the subjective nature of determining who needs what level of care and how to fund it. The course I’ve been on is called Independent living and is given by a tetraplegic called Brian O’Shea, who lives with his live-in carer. Throughout the course I have learnt a lot about experiences with carers, advice on how to treat personal assistants and how to hire them. It has put me at ease with regard to some concerns I had, and has given me more confidence in terms of the potential to travel and work in the future.

I have had various excursions, including dinner at my friend Lindsay’s and the trip to Lion King for Ellen’s birthday present, which was incredible. I had visits of various friends including Graham who came last week and treated me to some culinary delights from Brighton.

I visited Ellen’s dad, John’s house on the weekend, John had spent a lot of effort into making his house accessible and made it a very enjoyable weekend.we had many visitors over the weekend including many of Ellen’s friends from Winchester and Cardiff, El ‘s sister and her boyfriend- Nick, Mandy-Ellen’s mum, Tommy-Ellen’s cousin and Tony and Nicky-Ellen’s aunt and uncle. We had a small drinks party/gathering on Saturday night for Ellen’s birthday, and then relaxed on Sunday watching a film called Stardust. I was transported down on Friday afternoon using patient transport and experienced strange feelings coming up to a house where I’ve been so many times before but never as I am now. I felt bad at the beginning for putting out Ellen and her family out so much, I am indebted to them for a most refreshing and enjoyable stay, but realised that they really wanted to help me and probably did not feel put out. This helped me feel more comfortable in asking for help. I had one of John’s world beating fry ups on Sunday and I don’t think I have enjoyed a meal that much in a seriously long time.

During weekend there were a few surreal moments of reflection and realisation that naturally come with visits to familiar places outside hospital. There were moments when I felt completely at home and normal, in amongst the strange new feelings and this was almost like a taste of what the rest of my life will be like, which stimulates strong negative and positive feelings. I had moments during the weekend when I was enjoying myself greatly and my lack of mobility was forgotten about, and there were other times when I was sad and acutely aware of my limited physical abilities but there were also times when I was fully conscious of my altered physical state and having a great time even so. I think an important goal to strive for is to stop comparing myself now with my previous, physically uninhibited self, and to be fully comfortable with my physical limitations. If I ever achieve this I think I will be fully healed.I am only now appreciating how difficult this is to achieve .

the district nurses who came to assist in the morning were brilliant, and it didn’t feel like an invasion of privacy, in fact it felt extremely good to have privacy and lie in on Sunday morning with Ellen, I think this was probably the best time I have had since the accident.

This week is the fundraiser in Kilburn (Laura Fest Rock night), on Wednesday I will try to attend and am greatly looking forward to it.

Visit with Tom Monday November 19th

I was with Tom today.

He is on great form – with loads of IT projects, planning for control over his environment, preparing for his first weekend out of the hospital, playing chess, helping a fellow resident set up his new computer, eating well and with small but discernable improvements in capacity to move his right arm. Oliver came over as well (see photos) and we had a really good time. I brought a new cushion for the wheelchair and some DVDs.

We talked of next steps, next year, possibilities for work and so much more.

Tom spoke about eventful travels with Ellen and Susie on Sunday 18th. They went on a surprise journey to see “The Lion King” in London: the return was prolonged because the spindle on the van’s windscreen wiper motor broke. Today Tom said “it is good to be having the normal hassles of life again”, though yesterday evening’s wait for the breakdown crew was as frustrating as it always is, and the meal in the motorway service station was as welcome as ever.

Polly rang too….Thanks to all who are helping to raise funds and provide other much valued support – including visits to the Centre. An inspiring time. Fond greetings from David

copy-of-dscn1105.JPGcopy-of-dscn1108.JPGcopy-of-dscn1113.JPGdscn1106.JPGcopy-of-dscn1107.JPGcopy-of-dscn1104.JPG

Ironman summary

hello all,

having just read the amazing report of the Ironman race, thought I would share it with all of you on a post.  An amazing and moving effort from Charles which deserves much thanks and congratulations.  The removal of my collar has been delayed for another month (I have already been wearing it for 12 weeks), this is due to the review of a CT scan which showed   air pockets around the plate area and gaps where the bone graft had not grown into  as it should have.  This is probably due to the remaining infection in the neck, which I’m hoping will decide to give up at some point.

Ironman report:

In case you’re interested in reading about my experience racing in Ironman Florida this past Saturday, here’s an account of this grueling event!

Ironman Florida is a triathlon held in Panama City (on the Florida panhandle).  The race consists of a 2.4 mile ocean swim, 112 mile bike and 26.2 mile run.  I dedicated the race to Tom Nabarro, who was paralyzed earlier this year in a snow boarding accident.  Tom’s brother goes to school with my son, and when I heard about the accident, I started following his progress. Tom is still in the hospital, and his determination to face this devastating challenge has been inspiring — check out his blog at www.tomnabarro.com260.  Tom completed a degree in engineering and was an intern at Intel last year, prior to the accident. His family is raising funds to build a customized work space for him to continue his engineering projects. If you would like to make a donation, please use the following link: http://tomnabarrofundraiser.chipin.com/tom-nabarro261 (this will be live through the end of November).

Pre-race jitters
My family and I flew from NYC to Panama City on Thursday morning, groggy from waking up at 4:30am the day after a fun-filled Halloween.  Florida was warmer than New York by a good 20 degrees or so.  I wore plenty of sunscreen and made up my mind to wear a hat and sunglasses during the race.  The few days leading up to an Ironman are a spectacle, as the host city swarms with thousands of very fit, anxious people taking care of final race prep.  There is an “Ironman Village,” which exudes a carnival atmosphere, with vendors selling all manner of triathlon-related paraphernalia.  It is easy to get caught up in the atmosphere and wear out your legs wandering around, if you’re not careful.

I was able to fall asleep at 9:30pm the night before the race, but I woke up a number of times before the alarm clock went off at 4am.  I had several anxiety dreams, including one in which I overslept and rushed out of the hotel only to find that the race had already started.  In another nightmare, I found myself sleeping on the beach as a hurricane blew in, whipping up huge waves that nearly dragged me into the boiling ocean.  When I finally did wake up, the pre-dawn sky was gorgeous, the ocean calm and inviting.  It was around 60 degrees and would eventually climb to the mid-70’s by the afternoon with low humidity — the kind of conditions that can lead to a fast race, as long as you don’t make any major mistakes.  I ate a hearty breakfast and made my way down to the starting area at 5:15, leaving plenty of time to pump up bike tires, put food and drink on my bike, put on a wetsuit and hang out with my sister, Becky, who was volunteering as a body marker.  She was in high spirits and joked with many of the athletes as she wrote the race number on their arms and legs.

The Swim
It’s hard to describe the mix of emotions that come with the anticipation of waiting on a beach with 2000+ athletes ready to start an Ironman.  It was a perfect morning, the pre-dawn sky just starting to brighten over the calm, inviting water of the Gulf of Mexico, the soft sand gently squeaking under foot.  I had a brief flashback to family vacations I took to Destin and Panama City as a child, playing on this same stretch of beach.  But it was hard to hold on to that sense of serenity in light of what was to come.  The swim course consisted of 2 laps of 1.2 miles each around a perpendicular set of buoys, and it is pretty much guaranteed that you will get knocked around in the mass of athletes.  Over the course of the swim, I was kicked in the goggles, elbowed in the lip, felt hands tugging at my calfs, and even got stung by a jelly fish on my cheek.  At one point, I thought that I glimpsed the outline of a shark in the deep below, and had a brief, disturbing image of a school of sharks deciding to start a feeding frenzy in the midst of the swimmers.  Despite being generally roughed up and the irrational shark fears, I felt great and thoroughly enjoyed this part of the race.  Early on, the sun started to rise over the water, and I switched from breathing on my right side to breathing on my left to keep from being blinded.  I completed the course in 1:08:35, faster than my goal time of 1:10.  Upon emerging from the water, I immediately sat down on the sand so that a volunteer could quickly yank off my wetsuit, then ran through a shower to remove some of the sand, and jogged into the transition tent.  I asked a volunteer (these people are awesome) to put on extra sunblock while I dried off my feet, applied lubricant to my toes, put on my bike shoes & socks, jersey (w/ extra food stuffed in the back pockets), helmet, and sunglasses.  I had brought along arm warmers and a shell in case it was cold, but it was already warm enough to do without them. 

The Bike
As I started the 112-mile bike course, I saw my wife Eiko, my 6-year old son Sho and my 1-year old daughter Saya cheering for me beside the road, which was like getting an instant energy boost.  I could tell that it was going to be a fast course today: sunny & warm, but not too windy.  There was a fairly strong headwind in the last hour of the ride, but otherwise, the conditions turned out great.  I felt comfortable on the bike and settled into a pace around 21 MPH for the first 75 miles or so, keeping my heart rate aerobic and taking in calories & salt tablets every 20 minutes.  I drank about 24 ounces of either Accelerade or Gatorade Endurance each hour in addition to water.  I also ate Gu packets and Cliff Shot Bloks, but after the fourth hour or so, I started to get sick of consuming anything but water.  There was a fairly strong head wind for the final ~20 miles of the ride, and I slowed down in order to keep some strength in my legs for the marathon.  I finished the course in 5:28:32, well ahead of my goal time of 5:45.  When I entered the transition area, my sister Becky was waiting for me with my bike-to-run bag already picked out — great to have friends in high places! 🙂

The Run
It had long-since turned into a warm, sunny day by the time I started the marathon around 1:45pm, so I did my best to stay hydrated.  Although my stomach wasn’t feeling great, my legs felt strong throughout the marathon, and I appreciated the many 3-hour training runs leading up to the race.  The stomach pain made it hard to push the pace, and I walked through most of the aid stations, making sure to drink plenty of Gatorade and water.  I also ate a couple of oranges, which tasted great.  The course consisted of 2 x 13.1 mile loops, and at the half-way point, I saw my wife and kids.  I stopped briefly to give them a kiss, and Saya gave me a big smile and tried to climb into my arms.  She seemed to say, “there you are, Daddy!  I’ve been wondering where you’ve been all day!”  I decided against carrying her for the second half of the race, however, and promised to be back as soon as I could.  Becky ran along side me for a minute or two, but I didn’t feel like talking — this was when the race was really starting to hurt, and I needed all of my energy to focus on continuing to run.  There were many spectators along the course, some wearing funny Halloween costumes, which helped keep my spirits up.   I also found myself thinking of Tom a lot as I struggled to keep pushing through the pain.  His ability to stay positive despite his accident and honestly confront the reality of being paralyzed reminded me of how some people have the ability to rise to meet even the cruelest of challenges.  I ended up completing the marathon in 3:53:54, a bit slower than my goal time of 3:45.  

The Aftermath
As I neared the end of the race, Sho joined me for the final stretch, and we ran across the finish line hand-in-hand.  I completed the race in 10:43:16, which Sho reminded me was long enough to ensure that we couldn’t do anything fun that day.  He took pity on me, and promised that the next day would be filled with “nothing but fun.”  I was happy to oblige.  I was exhausted and dehydrated (despite my attempts to avoid it), and needed to rest.  Eiko took care of the kids, while Becky used her official status as a volunteer to stay with me in the medical tent, where I got an intravenous drip.  After 30 minutes or so, I was feeling much better, and went back to our hotel room.  The IV clearly did the trick, because Eiko and I came back out later that night to cheer on the finishers in the last 2 hours of the race (from 10pm to midnight).  It is inspiring to see people who have been out on the course for 16 or 17 hours who refuse to give up.  We got to watch the oldest finisher in the race, a 78 year-old man, come across the line with only a few minutes to spare before the midnight deadline.  

I would like to make special mention of the effort that my wife, Eiko, and my children, Sho and Saya, put into this race.  They not only put up with the amount of training that preparing for an Ironman requires, as I disappeared for numerous 7+ hour workouts on the weekends leading up to the event; they spent the entire race day starting at 7am waiting and cheering for me.  I think that managing a couple of young children while supporting a loved one in an Ironman is nearly as exhausting as doing the race itself, but Eiko made it look easy.  Not every spouse would put up with the amount of additional stress that I inflicted on Eiko in preparing for this race, and I truly appreciate her willingness to support such a demanding hobby.  My son Sho dubbed the day after the race as “daddy’s fun day,” since we didn’t get to spend much time enjoying Panama City together before the race.  Although I wasn’t particularly full of energy, he cheerfully treated me to a round of putt putt golf, shell collecting on the beach, and a trip to the arcade.  I did have fun, and appreciated the kick in the butt to get off the couch! 

Finally, my sister Becky drove 8 hours from Nashville, Tennessee to both cheer me on and serve as a volunteer for the race.  She drove me around the course before hand, helped with last-minute preparations, marked the numbers on my arms and legs before the race, had my transition bag out and ready for me after the bike section, and helped take care of me in the medical tent after the race.  As I lay curled up in the fetal position with chills on a cot in the medical tent, she rubbed my feet and told me jokes until I was back to normal.  How awesome is it to have your sister looking out for you in an event like this?  It sure did feel good.

2

Ironman and progress

33correspondence between me and Charles, sums it up.33

Charles,

it sounds amazing, an incredible achievement by you, congratulations on finishing and within such an amazing time. There must have been a great ambience with all the people at the finishing line, I’m glad the 78-year-old trooper got to finish the race, also an incredible achievement. I am so grateful of you to have done this in my honour as you put it, it’s a flattering feeling to have people exert themselves with you in mind. Well done for surviving, the idea of it sounds very brutal, let alone the experience of actually doing it I should imagine. I’m glad you had an IV at the end to rejuvenate yourself, I have found them very useful myself for energy giving properties, nothing like replacing lost fluids. I’m also glad your wife was there at the end to help you recover, I know the presence of a loving women is also a very good source of rejuvenation, I for one would be nowhere without my girlfriend (Ellen) caring for me after my previous exertions. I look forward to hearing some of the race summary, and I hope you have time to recover and reflect/be proud of your achievements. I also appreciate the strength you have demonstrated in dealing with adversity in the Ironman challenge.

I have been having a reasonably good time, a good beginning to last week with my mum and dad visiting on Tuesday after Ellen left on Monday evening (following a greatly enjoyed long weekend, I hope Ellen managed to rest after she had a very hectic previous week completing projects and performances). I discussed arrangements for the new buildings with mum and dad, which are still unfortunately in the planning stages. I also had a visit from Tony on Monday, the previous night we had been at his and Nicky’s house-Ellen’s aunt and uncle-for a wonderful roast dinner which we travelled to by taxi. Hugh Palmer, a great friend of the family, came to visit on Tuesday, which I highly enjoyed , but the rest of the week was very quiet in terms of visitors. I was kept in check and well by my many friends at Stoke, but was a bit low during some of the week due to the delay in my career and lack of focus with work for one. By the end of the week my spirits were high again after keeping myself busy with programming, trying to understand bit torrents protocol (a mechanism of transferring data between computers), chatting with friends and watching many new movies. Not to mention the thought of seeing Ellen and other friends on the weekend. During the weekend I relaxed with Ellen and on Saturday evening we went to a theatre production of Samuel Beckett’s ‘ fragments’ at the Warwick arts Centre. We went with mum, Molly and Ollie (Ellen’s university friends) and Lizzie (Ellen’s friend from school). Warwick arts Centre is typically full of privileged students and adults, who, as a group paid more attention to me from a distance and less attention to me in person, than at any events I have been to previously in my wheelchair. I found this interesting, but not too disturbing until extra attention was drawn to me by paparazzi (aka mum), who was snapping away like a Japanese tourist in Times Square (excuse the simile). When I got over my annoyance, we watched the play, which was brilliant despite some slightly enduring monologues, and being stared at constantly by members of the audience (which I’m getting used to, but feel sorry that they must have missed the majority of the play in favour of my slightly gaunt visage, lime green collar and rickety wheelchair).

The play, incidentally, was about disabilities and dementia (or coping with loss of faculty) as far as I could work out. I had not known that this play would be themed on such a subject area, and noted that some people paid even more attention (from afar of course) to me after the play. I deduced that they associated my emotions to be very similar to those they experienced being communicated to them from the actors through empathy, and the actors performed very well, conveying a lot of emotions as is one of the purposes of the play. Therefore, when they see someone with a disability directly after the play, who isn’t acting, they emphasise in their own little way. Assuming most probably that I was experiencing the same emotions they experienced being conveyed in the play. It probably seems that I was quite bitter about the experience, but on the contrary, I found it very interesting and these are just observations from my waist high perspective. I don’t think anyone ever get used to being stared at, but I’m beginning to avoid letting it bother me.

Getting back to the actual play, my view of the ideas behind the play were not shared by everyone on the way back, but seeing as the important thing is what thoughts are invoked by the play in the audience, whether or not they form the same ideas that the author was intending to communicate or had when writing it, this did not matter. I have not talked about the play much at all, so I’ll finish by mentioning my favourite part from the play.

The play was split into six acts (or maybe five), and contained three actors, my favourite was the fourth (or third) act, was the shortest, and contained only the monologue of a seemingly demented woman. The woman is heard to describe that she spends her time walking between shadows in dim light, between the impenetrable self and the penetrable un-self. I take this as trying to illustrate the isolation that someone who knows they are not themselves, but can’t see how to stop themselves, feels. A task, near impossible, which Beckett and the director, Mr Brooks, pull off very well.

Best regards

Tom

2

Tom

I wanted to let you know that I completed the Florida Ironman yesterday. It was pretty brutal, but I survived it! I was wiped out at the end, feeling woozy and weak, but felt great after I got an IV from the medical tent. My wife and I hung out at the race finish until midnight, cheering on the last group of finishers. It’s inspiring to watch the folks who spent nearly 17 hours doing this race. It took me 10 hours and 43 minutes, and that was about as long as I wanted to be out there! There was a 78 year-old man who made it in with less than 10 minutes to spare before they shut down the race at midnight. He was exhausted and a bit unsteady on his feet, but came in with a big smile on his face as the crowd went wild cheering for him.

l’ll send out a summary of the race with more details in the next day or so, copying a large group of people. I’m planning to keep the fund raising site open through the end of November, so maybe my race summary will bring in some more donations.

Thanks again for letting me do the race in your honor. I thought about you throughout the event, especially when it was getting rough, and appreciated the strength you’ve demonstrated in dealing with adversity.

— Charles

Progress report from Tom: Wednesday October 31st

Tom says:

“I am doing better now: I am spending more time up in my chair each day as the broken skin has healed. Last Sunday Ellen and I went by taxi to Nikki’s and Tony’s place (Nikki is Ellen’s aunt) for lunch: it was GREAT to get out together.

Yesterday (Tuesday) Mum and Dad were here – we discussed the plans for the extension to my grandfather’s house in Standlake (my living quarters). It looks as though my due discharge date will be shifted to end January 2008. We now have planning permission and the building work will start soon.

We also looked at the funds available for the Pavilion, the name given to the separate building which will serve as my social and work space. Family and friends have so far pledged more than 70,000 pounds (nearly 10,000 from the Ultratour). This is a great start. I am so grateful to all – and would particularly like to thank cousins Ffion (who raised over a hundred pounds) and Ben (who raised more than three hundred pounds). I send my best wishes to Charles Scott and thank him too for raising funds as he goes through the Ironman endurance test in Florida this coming weekend. I cannot yet tell you the total that we will need for the Pavilion: I know that further funds will be needed to complete the project as intended.

I am inspired by all your kind deeds, some of which are very taxing, by the generosity of so many people (many of whom do not know me) and by the continued support from friends, family and the professionals here at the hospital. The period since my August 7th operation has not been easy, but I am no longer feverish and it looks as though the infections I had are under control (for now, at least). I am hoping that my “neofract” collar will be taken off this weekend and I will be able to move my neck ….and that I will be able to get around by myself again in an electric wheelchair before long. I really miss that independence.

I think that I have overcome the problem with speech recognition on my computer. Today (Wednesday) I have been concentrating on correspondence – trying to clear my backlog of e-mails. Little things still take so much longer than they used too, so I might not be able to reply as quickly as the senders (and I) would wish. I am learning not to be impatient!”