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February 2019

rare disease families

Page 19 

When Dagmar Bennet embarked on her final project during her third year at university, she couldn’t have known what a close personal friendship would arise and how much collective impact she and muse Adam Pearson would have on dispelling myths around facial and bodily disfigurement. 

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#Rare Revolution #RareDisease ##Charity #Neurofibromatosis

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After the spell of mild weather we have been enjoying lately, you might be forgiven for thinking Spring was in the air. Now though, it has become a lot colder again, and with the accompanying snow the prospect of doing any outside jobs will have beento be put on hold for a while.

For some of us with disabilities outdoor tasks through the winter time or any bad weather can be particularly hazardous to perform on our own. It is always good to be as independent as you can be but there’s no getting away from the fact that we all need some help at times, and this is where your family’sies support can be so important. I consider myself very fortunate to have a supportive family and because I have had a chronic disability all through my children’s life- time they see this as nothing other than normal. 

What is normal?

 It is difficult to determine. Our normal would be considered by most able-bodied people as very abnormal. Maintaining any normality in our family life can be an uphill struggle. That said, cChildren and teenagers are generally good at normality and my children are quite accustomed to don’t get too fazed by seeing their Dad falling over again or worse for wear in hospital and are always on hand to pick me up with a bit of banter and a helping hand. 

This was demonstrated quite well some years ago by my son who was thirteen at the time. I had gone out to collect some wood for the fire, and as usual, carrying something and walking at the same time was proving difficult especially as it was blowing a gale. I managed to get to the wood pile holding the basket in one hand and steadying myself on the wall of the house with the other. The problem now was getting back holding the full basket with two hands. No matter, I thought, I could use my elbow to steady myself against the wall. It was at this point the wind took over and blew me face down in the gravel driveway scattering wood and my mobile phone all over. It took a minute to figure out what had just happened and as I surveyed the scenescene, I could see a blood- stained knee poking through my trousers and blood on my hands so I was likely going to require some assistance. 

I gathered the remnants of my phone and not wanting to cause major concern I phoned my son. ” When you get a minute son can you come out and give me a hand?”. 

” I’ll be right there “,. hHe said. 

Ten minutes went by,  ,then fifteen and by now the windchill was taking effect. Eventually he looked out the front door to see me struggling to get up and then came over to help.

“What took you so long” I asked” 

“I was finishing my computer game”, h. He replied. “You should have said you had fallen over”.

IIf I fall over indoorsindoors, I can usually get myself up with the aid of a dining room chair so I dispatched my son back in to bring a chair out to where I was with strict instructions not to tell his Mother what had occurred as I was keen to play down the incident. EvidentlyEvidently, he was spotted sneaking out with a the chair and my wife followed him out to investigate. So now I was in trouble for not highlighting the calamity fully in the first place and my efforts to keep the incident low key had failed. This is only one of many calamitous situations I have got into through trying to be independent.

On a more serious note, mMy wife has had a particularly difficult time during the forty- five years we have been married. and Sshe has had to revive me on a number of occasions when I have stopped breathing and been unconscious and ! I am well aware that living with someone who has a chronic illness or disability is not easy and it takes a strength of character to cope with it.

I have always been very grateful for the help and support I have had from all my fFamily and it is important to recognise that those of us with a disability or a rare disease can’t do it all on our own. Our lives are the better for having a loving and supportive fFamily who are all too often unsung carers.

rare disease families

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