Tom Soper

We were sitting on the verander yesterday and Tom said, “I’ve been home 4 months”.  Has it been that long, or has it been so short?  Everyone always asks if we are settled into a routine.  That’s a tough one to answer as I don’t think we were ever in a routine even before Tom’s accident.  Life just happens and we live it each day.  One thing is a certainty…… I have no idea what tomorrow will bring.

Tom’s pressure sore is still a problem.  A really big problem.  It’s now about 8 weeks since it reared its ugly red mark which has now turned into a superficial but persistant wound.  Because of its position – on his bum – Tom can’t spend much time sitting in his chair.  This is obviously really difficult for him and trying to work on his computer lying down is not at all ideal.  It also means trips out, have to be planned in advance.  We are trying different therapies, Granuflex, trusty mercurochrome, sudocream, others have suggested prep shaving cream, bovril, honey – which he is now trying.  Tom has purchased a Bioptron light which encourages rejuvenation of the cells. This has shown some slow but positive change.

Unfortunatley because of this pressure sore Tom has been unable to use his bike.  It would cause too much friction with his legs moving to and fro.  Anyway it’ll be the first thing to hook up when its disappeared.  And so his daily exercises of passive moves carried out by his carer’s, Anna or Janet will continue.  If these are not kept up he spasms so much and this causes alot of discomfort.  The spasms refer up to his neck where he has feeling.  These involutary spasms are quite frightening at first if you don’t understand them.  So many people have jumped back in shock and said “Tom you moved, did you see that!”  They are sometimes so severe it takes all of my strength to get his leg back to a bending position.  Unfortunately it doesn’t mean anything for the future. 

He has decided to look into purchasing a tilt table.  He would be strapped onto a flat plinth that slowly, either manually or electrically, tilts him from 180 degrees to nearly 90 degrees.  This would assist largely with his blood pressure issues, his bone density as he would now be bearing weight on his legs,  he would be able to work on his computer in an upright position and hence get a different perspective!  He could do this to a certain degree in his “standing wheelchair” but because of its design, the pressure sore is at risk.

Tom being a very keen reader misses reading books terribly.  He’s just got something called a Kindle that has made a huge difference to this love of his.  It’s like a small laptop but without the glare a computer gives.  It’s used specifically for reading books, and with the help of a long stick with a rubber end to avoid slipping, from his mouth he is able to “turn the pages”.  He can now do what he used to do and read stories to the girls at bed time.  The Hobbit is going well!

We’ve each had our birthdays’, Tom’s in February, mine a few days ago.  I spent the morning of mine in tears, uncontrollable tears.  I think it must have been one of those FIRST’s people say we need to get through.  But my dinner this last Friday night was spent with my family and friends and I laughed and laughed and laughed.  So these emotions come and go, many times a day. 

A routine is difficult when emotions rule.

This web site was set up 10 months ago to keep you all updated with Tom’s progress in hospital after his horrific accident.  I’m not sure if 10 months is a long time or if it was just yesterday.  Since Tom has come home our lives have changed drastically.  Life has done a 360 degree about turn.  Things that seemed so important before that horrible day don’t even enter my thoughts anymore so obviously they weren’t that a big deal then.  My role as a parent which seemed so defined before, has grown enormously.  I never used to swim with the girls, ride around the block with them, run cross country with them, now I do and I see their joy.  That’s important. For me this website was an outlet for my feelings and fears.  I would still like it to be.  As I’ve said before I don’t know who, while reading it, discards my comments, who gains from them, or who understands them.   Some of my thoughts I just can’t put down in words and some I don’t want anyone to know anyway.  Most of the time I am just being. I keep busy, I work, I’m a parent, I ride, I cry and I cry, I breath and I question.

I have been wanting to write a post about Tom’s life since he has been home but life has got in the way!  This weekend I have promised myself to get this out.  So here it is.

Christmas was a new kind of perfect.  As always the girls woke up early and ran through to the lounge to get their stockings off the fireplace.  They brought them to Tom’s bedside and sat on the bed and emptied them with that wonderful childish excitement.  We then waited for Tom to get up and into his chair (it takes from half an hour to an hour, this time is incredibly frustrating for Tom and perhaps with practice will get quicker), before the girls dived under the lit tree.  I found this whole experience so intensely moving and sobbed my heart out when Ciara (newly appointed the one to dish out the booty) handed me my present from Tom.  3 canvas pictures, one of each of the girls and one of the two of us.  Wow what an overwhelming feeling came over me, I’m not sure what it was but I suppose I hadn’t been expecting anything and then seeing us all together still doing what we did last Christmas with a few permanent changes it all just came flooding out.  I also feel the weeks leading up to xmas played a big part, our house had been turned up side down, so many new people had been in and out, some now living with us on a weekly rota, privacy is something of the past.  Our veranda is constantly teaming.  The regulars now know that if they want a cup of tea or a toot, they know where the cups are and where the bar fridge is.  And while you’re there, I’ll have one too! 

 Xmas lunch was under the tree with family, pulling crackers open with our mouths.  It was a beautiful day getting hotter and hotter as the afternoon progressed.  Usually Tom would have been in the pool with the girls for hours.  So we all donned our swimming costumes and laid Tom on a sheet, 6 of us picked him up and nervously stepped into the pool.  We then placed 3 “noodles” under Toms’ neck, chest and knees to see if he would float.  All of us, so frightened he would sink like a stone, didn’t let go until through fits of giggles Tom insisted.  He floated!  Watching him put his head back, close his eyes and let the water wash over his face was precious.  A moment I’ve engraved in my memory.  I can’t imagine how foreign it must have felt.  He said it was so strange seeing his body submerged in water and not feeling anything but the sensation of water over his face was wonderful.  For a few seconds I think he was lost and safe in that water. Far far away.

Tom’s power wheel chair arrived in late November, a huge difference to his independence.  It’s operated by his chin.  He also uses it to stand up in twice a day to get a different perspective on his surroundings but more importantly for pressure relief and improved bone density. His van (the ET!) has also arrived with a hydraulic lift at the back which he can drive onto and up into the back make car trips a lot easier although he dislikes them intensely.  The design of his wheelchair means the suspension is very sensitive and so every bump, and pothole is felt with intensity and pain.  He is strapped in at 4 points on the base of the wheelchair and then across his chest so he certainly is not going anywhere fast. 

We saw the New Year with old friends which was wonderful.  Lots of laughs.  It still amazes me watching men with Tom.  A kiss on the forehead is now a comfortable greeting, some are so happy to stand next to him and give him a beer, others massage his neck.  The woman will wipe his face with a cool face cloth when he is hot or cut his fingernails when that time is overdue!  My goddaughter Cams insists that she will feed him and will rub his head for ages even while her friends are swimming. Tom spoke to Ciara and Erin’s class soon after he arrived back and I have had many of the parents of those girls express the positive impact it has had on them.  Thank you for your feedback.  This is all so new for us all as a family and we have no recipe to follow.

I woke up the other night and my right arm from my elbow down to my hand was “dead” – fast asleep.  I lifted it up and looked at it.  It was not my arm.  I touched it with my other hand and I felt nothing.  It didn’t even feel like somebody else’s arm.  It was a frightening few moments, something I have felt many times before but always knowing that in a few seconds I’d get pins and needles and the feeling would slowly return.  This time I just stared, petrified.  This is something of what Tom must experience.  It was horrible.

Tom has a bad pressure sore at the moment and has spent most of the past 2 weeks in bed being turned from one side to the next so as not to put too much pressure on his behind.  Pressure sores can become extremely dangerous and can lead to complications so it is something that we need to be very aware of.  It was checked again on Friday and found to be infected and not healing so Tom is on antibiotics and still in bed.  I know when I am feeling sick and have to stay in bed, the most I can do is a morning.  This has really made Tom quite low and sad.  Working on a laptop looking at it sideways is unpleasant, drinking tea sideways isn’t that much fun. But he still inspires me at his patience and grace.  All he wanted to do the other night was give me a hug.  But he can’t.  Its hard.  We keep breathing deep breaths.

Tara Ralphs organised a squash tournament at the Highlands Sports Club this weekend to raise money for Tom.  She rallied a great bunch of people and auctioned off the couples on Friday night at the pub.  They played all of Saturday and gathered afterwards for the prize giving and an incredible dinner.  Tom and I “walked” down to the club last night to be a part of it for a while.  The club is not far from our house and it is easier to just walk/wheel down the road than to load Tom up in the van and harness him in.  This bunch of amazing squash players, many Tom knows and has played against when he was a member, raised a substantial amount of money which more than covered the cost of a reclining massage chair that was brought up from South Africa with the idea of promoting blood circulation and muscle work out for Tom.  (I have also sat on the chair, many times… and feel the purchase was a good one!)

Highlands Sports Club is a special place for Tom, he visits it often with the girls almost every weekend.  They walk down together and spend time on the courts, rollerblading or hitting tennis balls, while Tom urges them on.  They will continue to pop in for sure. 

A special mention to the Bowls Section, who independently added to the total amount raised.  And because of the Bowlers the Club is wheelchair friendly so access is great.  All the ramps are used for their trolleys and now Tom!

I have a moment to sit here at last and start a post that I have been writing in my head for a few weeks.  Our house has been a stop on a train line since Tom got home.  An incredible amount of our friends and Tom’s work collegues have spent a great deal of time on the verander, drinking tea, sipping beer, flipping charts, strategizing…….  The gate bell chimes and the phone rings constantly.  It’s tiring but it’s so good to be surrounded by all these people.  What has struck me the most and has squashed my biggest fear is that they all treat Tom as Tom.  With some people I see apprehension when they first meet Tom after such a long time, I have no idea of their expectation, but the air is soon relaxed and the conversation flows.  Some people dive right in and enquire about Tom’s situation, he replies very factually.  It’s something we have spoken about and we feel that knowlege is the best way forward and it keeps everything honest and out there.  There are some questions though, that I get asked, that are very personal and those ones I battle with.  It’s a tough one for me to work through but Tom and I are still a couple, with 2 children and we have a life to live.  It will be a very different life to the one we had 8 months ago but we still require an element of privacy, as does every one.   I see how hard it is for those people who used to do something active with Tom, its kind of awkward.  I see people avoid us because I imagine they just don’t know what to say or how to be.  I see men kiss Tom, rub his head, squeeze his shoulder, hold his hand and I’m grateful for the body contact they give.  I see tears held back and deep breaths taken.  What I’ve learnt is that there is no right way to behave but just to be honest.

People enquire about how I am doing and I also reply truthfully.  Sometimes I am ok, my day has been busy with work or kids or house chores. Sometimes I am so emotionally exhausted I can’t even think.  Sometimes I am flat and numb and it feels like I am just existing.  This is the time that frightens me the most as I wonder if this is how the future will be………  existing by just getting through the day.  Then there are moments of pure amazement and realisation of the meaning of love and family.  I caught Tom unawares the other night, alone, looking at the sparkling Christmas tree and I was overcome by a calmness that he was still with us and that my girls get to kiss their Daddy on Christmas morning.  Is that what this is all about?  At that moment is was the only thing.  And then another day starts. 

Every day I plan on writing a post that will be a list of thanks, but each day it gets bigger and bigger and I worry I will leave someone off.  One day I will do it, I want to.  But for now I’d like to blow a kiss to everyone this Christmas, wherever you may be.  Be with someone you want to be with, if only for a moment and take a deep breath. Together.

Silly season is well and truly amongst us. I lay up last night thinking that we should send out a newsletter for 2009 together with season greetings. I then realized that it’s all here anyway, right on this website. Or at least the last seven months of it is. The beginning of the year was characterized by various cycling events including an awesome Sani-2c and a blustery Argus. With this in mind, I would like to make mention of my latest acquisition-an exercise bike! With a portion of the funding raised, your Christmas present to me is an electrical stimulation bicycle that will allow me to get back into one of my passions in life whilst assisting my bone density, joint integrity and general fitness.

On the topic of spending money raised, you may be interested to note that I have identified three disadvantaged children whom Tom’s discretionary fund will be putting through school next year [school fees, uniforms, books, nutrition etc.]. I am hoping to have pictures and the full story up on the website by January, but thanks to Ryan Wiberly and the Humber crew who specifically requested that their funds be put to a charitable cause. More welcome of course!

It’s great to be home in Zimbabwe. I have been back one month already and time seems to be flying. Routines are gradually beginning to emerge, and I am back  into the swing of things at work. I have been inundated with visitors, made several public outings and got really well set up at home with regards to computing and communicating with the world [on Skype]. Best of all however, is being with my family!

For 2010, I offer you the same advice that I’m taking myself – to simply be as aware as possible of each moment. The clarity and appreciation of things exactly as they are might astonish you. In addition, I would like to borrow a phrase from one of Mary Oliver’s poems -

“for how long will you continue to listen to those dark shouters, caution and prudence? Fall in! Fall in!”

Finally some thank yous – to the organizers and participants of the croquet day in Johannesburg, the Cape Town walk and of course, the Humber (hilarity!) challenge right here in Zimbabwe. You guys are really great.

Have a fantastic Christmas!

Tom

It had become a tradition between Tom and myself that when ever we travelled, we would buy each other a bottle of scotch that we had never tried before. Whilst these were gifts to each other, it was understood that we would never try a new scotch with out one another. When I visited Tom in Johannesburg, I would constantly remind him of the stock that awaited us back in Harare, it was against this backdrop that I selfishly looked forward to coming home with Tom. Well that did not pan out as planned. However I am now home and whilst it took twelve days longer to get round to Tom’s house, just being in a position to sit in the garden with a truly special friend was a memory that I will always cling too. And yes that single malt “Ian Macleod’s Smokehead” tasted so sweet.

I am home and on the mend, with a serious bout of cabin fever starting to set in. I would just like to use this opportunity of thanking all of those who visited me in hospital as well as those who sent me well wishes from all over the world. Special thanks to Alison my amazing wife, who has kept a level head and ensured that I take it easy. Lance my little brother for dropping everything and coming to collect me in Johannesburg. Sally who without hesitation, and in the middle of one of the most emotional times of her life, found time to comfort Alison while I was in ICU. Tom for being so patient and waiting for that drink. Ant Gibbs my partner for taking over my job. Last but by no means least and in no order of priority the rest of the team I was riding with Ant, Mark, Wendy, Nikki and Brenda sorry for the poor times.

Tom the next round is on you.

Bren

What a fun day!!………

Final attendance count was bang on 50 people, although admittedly a couple of those were a little small to play Croquet. Country Club were absolutely brilliant and set aside two Croquet pitches for us. Tom, you would have been disappointed to learn that some of the more ‘creative’ rules have been removed from the game, and as a result no balls were sent to disrupt those on the cricket pitch or the kiddies party that was taking place. Our two local experts, Victor & John, were loaned to us from the club for the day and were great at helping us all learn the new international rules. Despite their instruction things did become somewhat ‘competitive’ in a number of games.

The beers went down superbly in the baking Highveld sun, and miraculously we were spared a downpour. The Club produced some great snacks and fillet rolls that were devoured by those who were able to stay on. I have attached a couple of photos to the posting, which will hopefully give you an idea of how the day went.

Thanks to all of you who made it and those who generously paid and made donations even though they couldn’t…