Tom Soper

Has it really been a year since our amazing “framily” and my aunt Sue got on a plane from Joburg to Harare to bring Tom home?

I remember meeting Tom at O.R.Tambo International being pushed in a manual wheelchair by Gary Futter, his arms crossed on his lap, placed on a pillow to alleviate pressure.  He was so skinny, kind of frightened, but so ready to come home.  Lizzie, that special nurse, who just had to see him off, was with them.  I remember the planning that was involved getting him from Pretoria to Joburg to Home.  The renewed visa issues.  I remember packing up the flat I had been using for months and months.  I remember a few days prior Tom having a stimulation test in the hope that there would be some form of nerve messages being registered and it resulting in a resounding negative.  I remember saying goodbye the day before to the most incredible group of people who had rehabilitated Tom in Pretoria.  I remember leaving a list of things at the hospital that need to be packed in the day bag and those for the suitcase.  The medicines and supplies.  The laptop with the Dragon. The transfer board.

I remember my heart just pounding as we checked in and for the first time I had to say, “My husband is in a wheelchair and we will need assistance boarding”.   Ant, Mark and I lifting Tom into the aircraft seat and strapping him in, being watched by everyone already seated.  It was an emotional time.  We left Bren in the hospital after his bike accident.  We took off, we looked out the window and said goodbye, we cruised at 20000 feet, we landed.  The welcoming party at Harare airport of Tom’s work colleagues in the Tom t-shirts was incredible and overwhelming.  Arriving home to our house, our girls, our family, our dogs, and our domestic staff was so monumental.

I remember the next few months being so incredibly hard, emotionally, physically, practically.  The car transfers until the van arrived, pushing Tom in his wheelchair around the house whenever he needed to be moved, the physiotherapy, the training of carers, the lack of privacy and space, the adjusting, the explaining, the questions, the permanence.  The scores of people through the house – like a train station we called it.  “You know where the fridge/kettle is….. Help yourself”

I remember the meals cooked by my friends that were delivered quietly and without fuss.  The moving of furniture, the new ramps fitted, the setting up of big PC.  I remember the exhaustion I felt and I could literally feel the adrenalin pumping through my body making me move.  I remember feeling so relieved I never had to fly to Joburg and drive to Pretoria to visit Tom.

I remember the first outing we made to the girls’ school for their school plays and the reception Tom got.  I remember wanting to sob my heart out but holding it together.  I remember how tired and uncomfortable Tom got that evening.  Mostly I remember Erin sitting amongst her class mates, dressed as an angel in her Dad’s white shirt with a tinsel halo, banging a musical triangle to the beat, with all her heart and the hugest smile just beaming at her Dad.  I remember Tom giving a talk to the girl’s classes explaining his paralysis.

So here we are, one year later.  At home.  Tom has achieved so much, and as I always say, with such grace.  He has an incredible team around him, Spike his PA, Jimmy his driver, Jane our Gogo, and a carer that enable his day to happen.  Someone once asked me while Tom was still in hospital when I would be packing up and moving.  I remember saying I hadn’t even thought about it.  This is our home; we are surrounded by a huge network of family, friends and staff.  This is our home, we aint going nowhere.

Mostly I remember the breathing you all did so that Tom could eventually make it home.  I am still breathing.   He is still breathing..

It’s been a while since we got back from our first holiday.  What a trip!  We made it.  We made it through the clouds, over the mountains, to the beach, through the laughter, through the tears, through the good cheer.  And all together.  8 adults and 8 kids….. not friends but one jolly big family.  Our Framily as I call them now.

The logistics were incredible but the careful planning and openess between us all allowed things to run smoothly.  And it started right from the beginning.  The trip to the airport….. Because the Ralphs and Greenways were leaving early on Saturday we were able to get Tom to Charles Prince airport in his van on Friday morning.  The posse that followed would have made our president proud! We arrived to a gang of young trainee pilots who with lots of instruction and guidance from the many “cooks” got Tom into the back of the light aircraft.  And with some hefty muscles and serious effort the 170kg wheelchair was lifted in too.

The flight was overwhelming, in more ways that I can say.  I found myself sobbing uncontrollably.  Seeing Tom behind me with Erin hugging him was so intense – a feeling of relief that we had made it, a feeling of gut wrenching sadness that this is what our life is, a feeling of joy that our holiday was actually happening, a feeling of bitterness that I was feeling all this.  Tom also cried. And cried.  During the flight I squeezed up next to him and realised I hadn’t sat next to him and felt him on the side of my calf, the side of my thigh, the side of my arm in a sitting position since last May.  I put my head on his shoulder and behind my sunglasses let the tears just stream.

The authorities in Mozambique were so accommodating and allowed us to get a vehicle onto the apron so we could transfer Tom directly for the aircraft to the waiting car.  He went ahead while the rest of us cleared immigration.  Moira our host and Bebe her assistant, were fantastic in making this happen.  We arrived at our destination after a bumpy trip on the sand roads to the fabulous villa’s where we would be spending the next 2 weeks.  Hamish, Moira’s husband had made ramps for easy access into the villa and so maneuverability for Tom was great. Obviously he was unable to get upstairs.

In the two weeks we got Tom down to the beach once.  Again it was packed with logistics but planning ahead made it work.  So into the front seat of the 4X4 he was hoisted and with permission from the next door resort who has access down a boat ramp we were allowed onto the beach.   Out of the car with further huffing and puffing and into the big tube that Bren had brought preciously for this moment.  And then with lots of laughter and some serious muscle power from 6 adults (Wendy taking photo evidence)  we lifted and then hovercrafted Tom along the lengthy sandbank to the sea.  I had brought a hammock which we had placed under Tom in the tube and so we could lift him out and into the water without yanking any of his arms or legs out their sockets.  As Tom cannot feel anything below the line of his shoulders, all he wanted to do was to be dunked under the water.  I grabbed his nose and we literally had to push his entire body under the waterline in order for his to be immersed.  Our bodies naturally float so this took some effort.  He blew bubbles out of his nose and mouth and came up ecstatic. A smile that described it all. He said to have the water over his face and be underwater was wonderful.

Back into the hammock, then into the tube and back up the beach to the umbrella we went.  Laughing (and huffing) all the way.

There were times when I found it all so overbearing and consuming and had to be by myself. As did Tom.  Watching other couples be couples – holding hands, rubbing sun cream, walking on the beach, holding their kids. It’s such a hard emotion to describe – the envy, the wanting, the hate, the love, the repulsion, the loneliness.  Something I work on everyday and get tired doing it.  I just want my hand to be held.

The kids were great, as they always are.  Obviously our girls have so much more to bare but all the other kids are so accepting and see Tom as Tom and they automatically know his boundaries.  Little Chloe has taken months to get close to Tom in his wheelchair but within days was riding on his lap around the garden, just the two of them chatting.  Cams will happily rub Toms head for as long as he wants. They will walk past him with a biscuit or packet of chips and just slip one in his mouth without thinking or feeling uncomfortable.

Back at home now reflecting on our holiday.  The biggest theme that keeps coming through was that we made it.  We actually left the house, left the country and had a proper holiday.  It was incredibly difficult, incredibly relaxing, emotional, jubilant, golly just so many things.  I, we couldn’t have done it alone.  And so to our Framily I say Thank You – you have no idea how much!.

Back at home now reflecting on our life after our holiday.  The girls are back at school and I am back at work, as is Tom.  He tries to get to the office everyday.  Jimmy, his driver and friend, is just marvelous and happily straps Tom into the van with all sorts of harnesses that are necessary for the safety and stability of the wheelchair.  Tom finds it incredibly uncomfortable and actually hates any journey.  We have had to patch up the road outside our house as the potholes cause him to be thrown around too much.  He collects the girls on various days from school and takes Erin to ballet, an afternoon where he can roll around the shops (and notice how many places are not wheelchair friendly).  He made a momentous long haul trip out to a mine a few weeks back, one where he was hoisted into the front of the van for the duration.  What a difference this made to Tom being able to see out the car window and feel stable for any length of time.  Unfortunately the weather got the better of Tom and he overheated somewhat, being unable to regulate his body temperature and needed to be doused in cool towels regularly throughout the day.

The girls are adapting slowly.  Ciara is like her Dad and floats through her day without much fuss just accepting what is and what isn’t.   Erin is struggling.  She mentions on a regular basis how much she misses what she and Dad used to do.  Particularly being bowled over on the bed and buried under the pillows.  This is so so hard to hear and deal with, but she and Tom talk regularly about what has been lost but what is still here.

I struggle with so many things and find myself being a guru at distraction.  Not always. And when it comes, it comes down like a crashing building on top of me.  It’s tiring responding to the world positively and its equally exhausting responding negatively.  Sometimes it is so good to just be quiet.  And sometimes it is so good to belly laugh.   I keep remembering Nicky Futter and her Gratitude List.……. Remember.

I looked back on the web site to this day a year ago and Tom was still on a ventilator.  He had been put back for the third time.  But for a short while he was able to be wheeled outside and there is a picture of myself and the girls huddled around his bed outside Milpark hospital on the helipad.  I remember it so vividly.  But can it really be a whole year ago.

Tom has had a rough couple of weeks, its that time of year when the cold weather hits our chests.  Poor Tom cannot cough or clear his throat or lungs.  So some serious percussion physio and jumping and shaking on his chest has occurred.  It hasn’t been pleasant and I have been frightened at times rushing to his bedside in the middle of the night to assist him coughing.  But he is over it and we have learnt some lessons.

We are about to embark on our first ever holiday since Tom’s return.  And to a beautiful place that has special memories.  The glorious Mozambique.  We leave on Friday.  Tom, myself and the girls together with the Malloch Browns will fly while the Greenways and Ralphs will drive.  Tom would not be able to handle the 11 hour drive so we are literally bundling him into a small aircraft while the other drive his van with his wheelchair across the border to the beach.  Its daunting but exciting.  Going with our dearest friends makes it so much easier as they know the drill, what is expected, what can and can’t be done.  And we have been there before so we know what to expect.

Obviously it will be so different.  To get Tom to the beach will be a journey in itself but we shall conquer.  To let him float in the sea with his girls is my goal.  So we will be equipped with floating devices, tubes and what ever else necessary to make this happen.

Its also our 10th wedding anniversary and I truly believe that spending it together with some of  the most special friends we have, in the most spectacular place on the planet, well that’s what I call a blessing.

I still take such deep breaths and feel the oxygen fill my lungs.  What a simple function we take for granted.  I thank the universe that Tom got this back……… even if he can’t feel his chest rising and falling.

This is crap.  I hate this.  I’m sad.  I’m bitter.

Tomorrow I might wake up feeling different but right now I HATE THIS.

This experience we call life is bombarded with extremes and the way that we react to these extremes almost defines us. After all, what is left in conscious memory is usually related to the peaks and troughs of our experience as we see it and not the mundane bits in between. My current extremes fluctuate between feeling incredibly lucky to be alive and a feeling of utter helplessness. Despite the depth of the later, the feeling does dissipate in time and I have learnt to deal with this by not reacting to it, just acknowledging it without getting caught up in it accelerates the dissipation. It is after all, a reasonable feeling in light of the circumstances. As to the former, I guess we should all acknowledge and be grateful for the ability and opportunity we have for recognition and joy. Take very little for granted!

Apologies for not updating the site for some time. I consider this a good sign as it is indicative I am getting on with my (new) life. There is no doubt that this process of settling will take a few years yet, but as with all things one has to begin somewhere and I feel that I have made a reasonable start. I’m not sure exactly what to report on this blog but can tell you that my pressure sore is history [I am convinced that this was sent to me to enable me to learn patience.. Which I can now confidently define as the inverse of frustration]. Touch wood somebody please. Lesson learnt.

The anniversary braai was exactly as planned-a casual and friendly platform attended by some truly wonderful people. I hope that a good friend of mine doesn’t mind me using her poem to create a clearer picture of Sally’s and my gratitude-

Magic doesn’t fit in boxes
it streams in clouds

flowing with our dreams
not  our control

it is not held in place by our rules and regulations
but in  the trust of our common intentions

a place without boundaries
in a web of shared resources

living in a moment
- never re-gathered
soaring  the edges
on outspread wings

magic doesn’t fit in boxes
it comes from circles of love

The last month has been characterized by World Cup soccer, increasing work hours, embarking on the project of a new house and generally establishing routines. The Tour de France will probably shape the next month as there’s sure to be some avid viewing. Talking of which, Argentina is about to give Germany a good thrashing, so I am off to watch that.

Until next time

Tom

My wonderful, special friend Tess came out from Brisbane to be with us for 10 days.  She had come to support me in August and had only seen Tom in hospital since his accident.  I’m sure for her, seeing Tom at home was hard, his new body, his new way of doing things.  We have done so much as couples, together, for so many years.  We spent the last few days of her visit in Joburg, together with my wonderful, special Al.  The three of us laughed hard and cried harder.  On our first evening we discovered the geyser in the shower had packed up, so we were forced to boil a kettle and “bird bath” in the sink, and then jump in the freezing cold spray of the shower.  Various sounds of pain were heard from the bathroom from us all.  But as I stood under that ice cold sensation I thought HOW MUCH TOM WOULD KILL TO EXPERIENCE THIS UNCOMFORTABLE FEELING.  I stood there, still, for some minutes.  For the next three days each one of us appreciated that icey cold water we take for granted.

I got home today and Tom was in clean up mode.  He had decided it was time to purge.  So I emptied his entire wardrobe and held up each and every piece of clothing.  There was an Out Pile, a Maybe Pile and a Keep Pile.  Our criteria for throwing or keeping was simply size.  Tom’s belly is growing into what is called a “Quad Belly”.  Because he has no muscle control, and no ability to burn fat by exercising,  his belly is expanding.  It’s not like Tom at all, as he was always a fit man.  Anyway as the Out Pile got higher and higher and the Keep Pile became defined as more and more practical gear, I got more and more reminiscent.  ”Remember this t-shirt….. Oh I love you in that shirt…… you wore that tie at …………. No point in keeping that we can’t get your head into it…………  We  got to the end and then attacked the Maybe Pile.  Tom’s words were “I have no need for possessions”.  The entire pile was binned.  It shot me threw the heart.

On our way home, Al and I bumped into Clint who now lives in Sydney.  I don’t know him well but without words he gave me the tightest hug, saying everything.

What a beautiful lesson.

2 more days to go.  2 more days when everything I say about “last year’ will boil up some memory of this new life that erupted after the words, “Is that Sal?”

I’ve been lying in bed late most nights replaying that phone-call and reliving those vile hours that followed.  I’m eaten up with panic and fear and nausea.  I’m dreading the 5th of May.  I question why all the time.  Why will the 5th be any different to today, I will still feel that panic and fear and nausea.  Then I think it’ll just be another day, I’ll busy myself and then it will be over.  I’ll wake up on the 6th and it’ll be over.

Everyday I write a message on this website, in my mind.  Everyday I spill my guts out.   Everyday I feel these intense emotions well up in my stomach and erupt out my eyes flowing down my cheeks until I can’t breathe through my nose anymore.  And everyday I never write anything because I realise whether those feelings are written down or not, they are still felt.  I realise its unfair to put my feelings into words for all to consume.  It probably also amounts to the fact that I don’t think I want you to know that I see couples holding hands and swaying to a song and how much I miss that and that I wonder if you even know you are holding hands or if it’s just habit.  It’s so cruel that I can hold hands with Tom and if he has his eyes closed he doesn’t even know I’m attached to him.

How can tomorrow coming make me feel any better?  It’s incredibly tiring constantly being asked how is Tom.  Am I ever actually going to be able to say, “He’s great, just dandy thanks.  How can I not want you to ask how he is?  Then you don’t care.  And you’ve got to care.  I couldn’t do this without your caring.  I remember the outpouring of love, care, concern, disbelief, shock, revolt, all those feelings felt from all over the world pushed me up those hills ( remember those hills?…) and rode the bumpy ride with me down those mountains…..

I’m tired of all things, and within a split second, grateful for each and every one of them. I’m tired of carving the chicken.  I’m tired of turning on the generator, I’m tired of tucking in the girls, I’m tired of picking up the pizza, I’m tired of that buzzing mosquito that I’ve swatted every night, I’m tired of answering the phone, I’m tired of making a plan.  Oh there are so many things.  Oh how lucky I am………

Tom has just rushed past (in his wheelchair. Obviously! ) with Erin balanced on the back wheels and I was consumed with happiness. I smiled and laughed.  It’s all about adapting, isn’t it?  They have the same need for speed and how special they still get to do it together – even if it’s in this warped new way.

The 5th will come and go but Tom gets to spend it with those people who stopped their lives on that night, that whole vile night, for him and for me.  It will come every year and every year I suspect the panic and fear and nausea will lessen.

Open house at our place this Saturday the 8th May from 12 o’clock onwards,  bring drinks and something to braai.  Bring smiles. Come for a minute, come for the day. Come for a laugh, come for a cry.  But most of all please come so we can, at last, thank you for all those breaths you took.  If you can, let me know you’ll be coming. RSVP on the website, or my cell or Tom’s cell, or email tomandsal@zol.co.zw.

I’ve just taken a deep breath.  It helps.

Out of the night that covers me

Black as the pit from pole to pole

I thank whatever gods may be

for my unconquerable soul

In the fell clutch of circumstance

I have not winced or cried aloud

under the bludgeonings of chance

my head is bloody, but unbowed

Beyond this place of wrath and tears

looms but the horror of the shade

but despite the menace of the years

finds, and shall find me, unafraid

It matters not how strait the gate

how charged with punishments the scroll

I am the master of my fate

I am the captain of my soul.

I had a massage today, and as I was lying there I realized how blissfully unaware I was of my paralysis, not just then, but quite a lot of the time. This is good news, but also has its downside because when I am rudely reminded of my physical restrictions [can't hug my family, go cycling, etc.] and vulnerabilities [pressure sores, shortness of breath], I am temporarily reminded of my challenge.

Nothing wrong with a challenge however. Removing or dealing with obstacles in one’s path is part of life and brings enjoyment, a sense of achievement, a feeling of worth. Helping others deal with their obstacles adds even further delight. This is living life. And I am grateful for life.

It’s been almost a year since my accident, and in a weird kind of way time seems to have flown . Especially since my return home over five months ago. I am gradually establishing my boundaries, settling into new routines, reassessing habitual thought patterns. I have been pleasantly surprised observing the quality of various relationships I have with others, and humbled by the depth and extent of responses to my situation especially visible on this website. It is on my agenda to try and respond individually to comments, good wishes and general good intent, be it by e-mail, phone call or face-to-face thanks. A good opportunity for this (for Zimbabwe residents) will be an open house braai at home, probably in 2 to 3 weekends time-I will ask Sally to put a post up when we have a suitable date. This will be an anniversary event, celebrating an extra year of life and toasting many more to come..

In the meantime, Sally and the girls are getting on well. They have just got from my holiday in Durban and Sally, whilst already at work, is also back on her bike enjoying this passion and bracing herself for our next grand project which will be to build a dream (and wheelchair friendly) house. Ciara is still very enthusiastic with Bugsy, her very cute new pet hamster whilst Erin, a real drama queen, entertains us more and more with a character that whilst cute now, I suspect will be a real handful in teenage years!

I will definitely be making more of an effort to post regularly to the website. In the meantime, be healthy, positive and wise.

Tom

[Footnote- It is quite incredible to reflect on the power of the mind and what it has the ability to accept as normal. Interestingly, careful further reflection reveals that everybody's normal is unique to them even though we are seldom mindful of this enough to respect others' attitudes, moods or expectations].

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.