Thursday, May 31, 2007

Rehab - a bumpy ride...

Dawn breaks when the early starters put down their mugs and empty breakfast bowls. In the background the half seven news bulletin blathers away, followed by advertisements and crazy morning tunes. The therapists bring their notes of the previous day up to date, and then go to find their patients who are already awake and waiting. The pace picks up just after eight ’o clock and by nine there may have been a traffic jam or even a light crash between wheelchairs, nursing staff, visitors and walkers with disability aids…And the gym is a real ant’s nest of activity until four o’clock when the therapists sit down for lunch and to add notes to patient reports. The patients are back now in familiar and now welcome beds.

Life In a Nutshell...
For us it all ended and began with a severe head or spinal cord injury caused by an accident or maybe an aneurism. When we woke up in ICU, we might have been connected to a lifesaving ventilator and the C1 and C2 injuries are the ones that really are deep trouble at risk of infection, pneumonia and dying. Then one day we were tranferred to rehab to learn to adapt skills for a new life. Supposed to cope with it all we try to hide our fear and anxieties. TLife goes on, regardless of the fact that we may have lost the ability to walk or talk properly, make a cup of tea or get out of bed all by ourselves...

In this gym we work tremendously hard. We learn here how to accept (you never really to) and do the best we can with a mental and/or physical disability. Our bodies were broken and although we are grateful to be alive, we deal with a lot of physical and mental pain. We're damaged goods. Everything changed the day we lost our ability to be independent and it is something that will probably take a whole lifetime to adapt to. Young or old, married, single or divorced, we pine for the normality which we once had in a world we once knew. Everything seems different to the smallest proportions. People look at us differently, even if they don't realize it. Our friends, family, strangers or ex-work colleages sometimes don't know quite how to handle the situation - making light of uncomfortable situations in order to hide their shock, angst and sadness. If they only just be themselves and not pretend, it will make things a lot easier, but we all know it's not quite that simple. We are all only human after all.

Probably what annoys us most, is the assumption that we have undergone personality changes in ICU; going in Mr Brown and coming out Mrs. Brawn. Well, if some of us had brain injuries it should only serve as yet another reason why endless patience, acceptance and love is required. 'Support' in our lives becomes a magic word.

Most of us have no sensation from the hips down, or the chest… One or both arms may still be okay, and if we are lucky our hands can still flex too. When things don't go so well and our limbs won't follow what our brain tells it to do, that's when the going gets a little bit tough. We have to strengthen our upper bodies and always be on the lookout for nasty weeping bedsores as it can appear within hours. We are told not to ponder over the future too much - it takes a lot of willpower not to. There are a great many other things in the back of our minds such as our embarrassment when things don't go right or disappointment in ourselves when anti-depressions or sleeping tablets become daily companions. Our new dependency to get washed, dressed, fetched, fed and catheterized by strangers is something we'd never have imagined having done for us. There are times when we experience sudden outbursts of burning white anger at anyone in the near vicinity, especially when someone enter our bedroom without introducing themselves or explaining what they are doing there. What do they think of us, showing so little respect?

We have lots of realities to cope with: muscle spasms, medication, hospital viruses that seem to think our bodies are just great to invade. Just curling a finger around a plastic mug can be exhausting, trust me, you don't want to imagine it. Let alone living with a curdled inner state of contradictory emotions. Part of the gym excersize regime is the fun bit when we work with silicon clay to strengthen our hand muscles or build puzzles to improve co-ordination... Oh boy, it's just like when we were kids, but let me tell you something about this innocent little excersize: It can keep you busy for hours. And just as you think you finally cracked it there seems to be a missing piece. But we try and oh Lord, we really want to have a piece back of who we were before.

There are those dreaded mornings which streches into long days when one feels too tired to keep ones eyes open, days when gravity seems to pull down more than lame legs... On those days you don't feel like anything but an injured mutt that wants solitude to lick it's wounds...lie down and sleep and sleep some more. But even in this much needed escape we get haunted by the voices our therapists, food trolleys, our comrades talking to visitors or a TV playing illegally in the middle of the night... Rest is something our bodies and minds crave day and night. It is absolute bliss to have a cat nap in the dining room after breakfast or halfway through a workout in the gym.

Some days are better than others. The inability to follow a command promptly sometimes really irritate the living daylight out of us and probably our kind, diligent, slavedriving therapists too. Occassionaly the world seems to be our best friend again when things seem to get better. But soon again our minds have to conquer dull depression when spastic limbs and lethargic bodies just won't obbey and reach their target...It's an awfully lonely road to travel apart from a few sunny days; bumpy and full of hidden turnoffs, scary thoughts and deep potholes. Getting on with normal mundane daily tasks such as putting a spoon in our mouth, talking,lifting an arm or foot just above the surface, flexing a painfully clawed hand without whimpering or just to get into a standing position with numb feet going nowhere is not a picture for the weak, meek and mild...

At least we do seem to work together as a team here in the rehab gym, and we make friends here sometimes for life. We aren't completely alone and I will always hear laugther, coaxing, discussions regarding improvements and the radio blathering on as I drive by:

Okay time to get up Mr Lumber spasticity Nerves; careful now.
That’s very good Miss Thoracic Nerves! Let’s work on your balance today.
Mrs. Cervical Nerves, a little physiotherapy in bed today to keep ulcers away.
Mr tough Sacral Nerves - let’s see if there's flexion control today.
Mr Spasm the artist, you're doing great mouth-painting you know
Mr L5 - you can still wash up dishes for your wife you know...

Humerous Mr AVM (arteriovenous malformations cervical spinal cord) saying to a therapist: How's my sitting position now- do I STILL look like a Bushman???

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