Years of experience with Disability, it's complexity and survival are tackled head on in these articles. Roly has been wheelchair bound with myositis for some 10 years now and he has numerous articles published in magazines in South Africa and on various sites on the internet.
Wheelchairs – Transportation & Life insurance
The determination to stay mobile has had it’s trials and tribulations since being advised that I have a disease called Inclusion Body Myositis.
I have been a very wobbly walker for the past eight years or so and progressed from wobbly unaided to wobbly aided over this space in time. My first walking stick was one I inherited from my mother in law.
I am still convinced in my own mind, that she knew I was going to need a stick at some stage, and that is why she left me this dance with death walking stick. She had prepared this stick for me, for having the temerity to marry her darling daughter.
The damn thing had a will of it’s own and would suddenly go off at a tangent, just when I needed it’s support the most. The resultant sprawl onto the deck would leave me severely damaged in spirit and body. I would lie there in pain while I convinced myself the sounds in my brain were not the sniggers of my dear old mother in law but really just the ringing in my ears from the impact with the floor. After a couple of these incidents I decided to inspect the suspect stick more closely, only to find that the rubber tip had worn through and the protruding wood was the reason for the sudden falls. Nobody can convince me that she did not sit there gleefully rubbing away at the stick tip until the wood was slightly exposed. Short of sending this stick for forensic tests I could not prove that my mother in law had somehow contrived the suspect wear of the tip. I will carry it with me to the grave that the old darling had a good giggle every time I landed flat on my face. I only felt slightly better after using the thing as kindling for a summer barbecue.
Then came a wheeled walker. Also left to me by mom in law, needless to say, but the contraption was closely inspected before I condescended to use it. Yes, you guessed correctly.
Somehow she managed to change this help aid into an instrument of torture that would trip me up at unexpected times. I’m sure that she even coached the dogs on how to get me to trip over them or my own feet. The difference between this walker and the stick was that, now I would fall and become entangled with the metal framework, landing up in positions with a strangely contorted body wrapped in and around the framework. I was fast becoming a wobbly walker with a phobia about falling. At a guess it could be called fallaphobia or crash landing a phobia but it is actually called --- Basophobia or Basiphobia- Inability to stand. Fear of walking or falling. Use which ever grabs your fancy.
Decisions, decisions ---- walk or wheelchair?
Well, once I had climbed the mountain of pride I could see myself maybe using a wheelchair when we went out. But, only, when we went out. Definitely not all the time.
You see, wheelchairs are for disabled people and I’m not disabled. I could still flop into the front seat of the car at this stage and the wheelchair would have pride of place in the rear. The first time I flopped backwards I misjudged my space and whacked my head on the roof of the door frame as I flopped into or onto the seat. I was convinced that my head had been opened like a toilet seat and it took a lot of reassurance from my wife to convince me that my head was still intact and that what was left of my brains was not splattered all over the driveway. I took a deep breath and mumbled something about mothers in law and vendettas before being securely strapped in with my safety belt. That came very close to being the last time I would venture out but after many threats, pleas and shaking of heads I was cajoled into trying again. Everything went swimmingly until I fell the last time and after spending four weeks flat on my back it was decided that I would be safer in a power wheelchair.
Now there was a transportation dilemma all over again. How to get me out?
We sold the van and bought an APV Renault Kangoo with the idea of riding the chair up an aluminium portable ramp into the back. Once there, the chair was to be secured to the floor with tie down straps.
Theoretically this was easy. All the sums concerning head room etc were done and the ramp was purchased. Somewhere along the line here, I seemed to have lost my nerve and I kept putting off the trial run with fake back ache or headaches or any other ailment that I could contrive to get out of the attempt to pull an Evil Knevil stunt in my driveway.
Eventually after continual nagging from my wife and kids I conceded and the day of the test of my courage arrived.
The vehicle was parked in the correct place and the ramp was put in place. To me it looked like people were asking me to ride up the vertical face of a precipice. The ramp was probably at a 40 deg angle and the possibility of tipping over backwards loomed hugely in my brain. The off chance of me steering the chair off the edge was also very real. Blankets and sponge mattresses were strategically placed and I drove up to the foot of the ramp. It had been previously decided that I would not charge at the slope just in case I missed it altogether. The faith that everyone had in my driving skill was rather disconcerting to say the least.
I readied myself mentally and physically and had my son standing behind me in case of a backward tip. Engage gear and ready steady go. I took off up the ramp like a scalded cat, fortunately realising that we had not measured the entrance height and ducking my head just in time to avoid decapitation. We had measured inside but did not think or see that the roof bulged as roofs do. The entrance height was a good ten centimetres lower than the roof.
The main instigator, had all this time, stood with her hands over her eyes, in a “hear no evil see no evil” posture and I will reluctantly concede that my eyes were tightly shut as well. Success !! we had managed it without serious mishap.
Everybody was happy until we realised that the chair could not be turned around inside the car and in any event the ramp was so steep that it would have been dangerous to go down forwards. Then with shrieks of mirth and with my son practically rolling on the ground with laughter I was informed that I would have to reverse down the ramp.
Problems.
I could not twist my head far enough to see where I was going and had to rely on directions interspersed with giggles to get me out of my predicament. Then with my heart thumping in my chest and gallons of sweat pouring down my face, I negotiated the reverse manoeuvre and arrived at the bottom without falling off or tipping over backwards.
Now we have all the systems and routines in place it is still nerve wracking, but, with practise it has gotten easier each time.
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