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.

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.