The full impact of having a chronic illness and how it affects the family is never really discussed unless the need arises, or you find yourself in a situation where the conversation cannot be avoided.
My daughter attends college; her course work is Health and Social Care. She wants to be a nurse -- Why? I do not know. My father was a male nurse and although I have the utmost total respect for the profession, I still think it can be a thankless job these days! Never-the-less she has my support in whatever she decides and I have to give her great credit for wanting to help sick people.
It was a difficult question when asked how my illness affected the family? In my heart I know it must be difficult but I never had the courage to ask, and even if I had, would they have answered truthfully? I guess it's something you would never know unless you are given the opportunity to eavesdrop, or let your family loose with a personal account on paper (not intended to be read by me).
It was a half term holiday assignment that brought my illness to the fore. Her tutor had set an example for the students entitled; Impact That Changed Your Life -- Positive And Negative! Her chosen assignment had to be me!
She sat tapping on the keyboard, occasionally asking for help in spelling and time scales. It was a lengthy piece on which I was totally banned from any input other than a few questions. She closed the laptop whenever I entered the room and frowned each time I asked if I could read it! Funny thing being written about and not allowed to have any say, libel perhaps, but I kept her wishes as she printed off four whole pages, popped it in her bag and ended the matter right there.
First day back at college and I had the computer to myself for a change. I had a couple of things to do -- letters to write that sort of thing! I logged on and clicked a programme used solely for text such as spreadsheets, letters, graphs, Y'know the stuff! I scrolled down the documents and saw the assignment Steph had written about me just staring me in the face. Well you just would -- wouldn't you? I knew it was personal but I just had to read it. Call me awful but I'll take it on the chin. How else would I ever know what she really thinks about our family situation, and would it be so bad or something I didn't already know?
I opened the document it began: Mum. Mum was diagnosed with a condition known as Raynaud's in her late teens. Raynaud's is a condition that affects the fingers and toes causing a lack of blood flow and sometimes gangrene!
I read on with an element of awe. I was surprised by the amount of knowledge she had about my condition when she always seemed so disinterested! I could never remember discussing any part of a conversation which related to the subject in such detail -- I was amazed! Paragraph after paragraph of detailed text, much better than I could ever have done myself! and then came the reality check.
The impact upon family life beginning with the negatives. She described how when she was taking High school exams (GCSE's) she sat on the rear seat of the car racing towards Manchester to visit me in hospital with revision papers on her knee and writing coursework trying to keep the pen on the paper. She described all the sleepless nights she endured with worry, when she should have been worrying about her exams, she was worrying about me instead, and how she felt she could have done much better than the results she finally got!
She went on to say how my condition affected our social life as a family. How we used to go out for meals and with friends. How we eat differently now that I can no longer sit and eat a meal, and how I've changed from the cuddly Mum I used to be to a skinny shadow of my former self. She felt sorry for her Dad because she felt that he suffered too, not having the same social life and feeling guilty for drinking alcohol when I could not.
The positives came in the shape of still having me around even though I would never be the same, and she went in depth to describe the relief of having me home after long spells in hospital. I read with tears in my eyes. I guess the full impact on my family is something I never really thought about. Most importantly was the realisation that my condition affected my daughter in such a way that she felt she'd let herself down in relation to exam results, when in fact I was so proud of her achievements! I closed the document with a feeling of guilt. Had I been so selfish not realise how much this had affected my family? How could I ever make things better?
I'm glad that I read her assignment. It was a harsh truth and hard to swallow but at least I now know her true feelings. If she doesn't get "A" Star for it --- I'll be yanking the tutor out of her classroom by her bare neck. A beautifully written piece of work, and I just want to hug her!