I think we all need a purpose in life and that could be anything – its the thing or things that get you motivated to get up in the morning and face your day. At the time of my relapse my purpose had evaporated if I’m honest, my daughter had become my carer so I felt that I’d even lost the “Mum role”. Although that was returned pretty quickly as she was being horrendously bullied by a local gang and was unsafe even at home at times. We had windows put through and even a “happy slapping” on the doorstep. And social services weren’t interested in helping as I wasn’t putting her at risk. The school were even more frustrating until I nagged the GP and he wrote to them and pointed out they had teachers off sick with stress, for far less serious reasons.
She at just 14, had to cope with the death of her Grandmother, my worsening illness, the bullying and a glandular fever type virus all within a couple of months. We spent huge amounts of the time I could sit up in police stations doing video interviews and goodness knows what else. But I persisted with social services on a daily basis until the poor woman that answered the phones either cracked under the pressure or was fed up with hearing me, not sure which really! And they referred us to Connexions, as fantastic local youth service, who provided Lucy with a brilliant support worker for a year. One of the deputy heads at school also started to realise there were huge issues and took her under his wing. He had an unofficial mission to look after the “misfit” kids and worked with me to organise a flexible timetable, guidance so that I could teach her from home when she really couldn’t cope and he got the school counsellor, youth advisor and Young Carers worker helping her too. After about 6 months she was doing 3 days at school plus home schooling and was very much better, although she never really settled 100%…and on top of all that she was told she was likely to have an autistic spectrum condition too! The interesting thing for me was that she got better exam results etc when I home schooled her part time than when she was in full time school the following year!
As I said it was around this time I became a Christian, mainly through my daughter. She went to a local church youth club and the people there had been great too – if I couldn’t cope or needed to get her to an appointment they were more than happy to come and help with lifts or just providing her with a space for time out. Which also gave me the space I needed to get my head around things. I wanted to give her the confidence to go out again and she had been invited to do their Alpha course, so i rang and asked if Mums could go too as I knew she wouldn’t go otherwise. They made me very welcome and we sat with an elderly couple who were brilliant – they even told me how to pray to protect our home and I can honestly say within a few days of that, the problems ceased……..it was almost miraculous and it showed me that there definitely was “Someone Up There” who was willing to help!
To say it was a time of insanity and chaos is an understatement. The one thing that kept me sane was doing anything or everything creative. As well as cross stitching, knitting and crochet I learnt how to use paintshop pro via the “tag” groups that were around on MSN. I really enjoyed just taking things and being creative with them. It was an escape from the madness going on around me. I also researched and had a go at all sorts of other crafts from needlelace – bit disastrous! to creating handbags from plaited newspaper – decided not to pursue this due to the great English weather, but it was fun. I even tried sewing machines again when I was starting to improve and could be up and about longer.
I was also referred to the pain clinic at around the same time and I distinctly remember a meeting where the staff got a whole group of us together to teach us about the nature of chronic pain and how it could affect the body. It was surreal as I was the most disabled of the whole group, yet the most positive and I sat in silence until the end of the meeting just listening to the despair around me. I chatted to the nurse after, as I knew him from my previous job and we discussed the differences in attitude within the group and it made me realise, far more than ever before just how much despair comes from a diagnosis of long term illness, whatever its cause. But I had no idea how I could help and they’d already told me that I was far too well adjusted for any of the groups they ran…. so I did a year of very slow physio with a fantastic lady who got me walking short distances again. We put together a programme of exercises I could safely do at home and then later in the pool – the theory being falling over in water was the far better option! And I think for months I was the entertainment at the local baths as I tried to regain balance and walk half laps of the slow lane! It worked well, once the carer had medicated all the lifeguards for anxiety lol! It did used to terrify them until they got used to me behaving like a very un-cordinated porpoise!
And as I improved I realised I wanted to teach, but had no idea what……. so being me I talked my way into an adult ed “Preparing to Teach in Lifelong Learning Course” to get some qualifications. The idea was that you were either teaching already or had a plan of what you wanted to teach – so I came up with an idea of training health care staff in better ways to work with people with long term illness, but ultimately I had to accept that it would be physically far too demanding for me. However I got alot out of the course, including my qualification and also I think managed to show some members of the group that disability wasn’t the end of the world. For my final assessment I took some real life scenarios and got them to think about the day to day life of a person with a disability and also how that could affect a person in the classroom… it went down really well and at times I think it might be worth thinking about either dusting it off and offering to run it for teachers or developing a series of blog posts exploring the issues I raised, in the hope it will help other creative skills tutors to come alongside learners who for whatever reason are at times more challenging to teach. What do you think?
So to sum up this post, which feels as if its rambled somewhat from despair to taking positive action along the way. I think the thing that I learned from all the above, was that it actually doesn’t matter what the impairments you have are, or how unwell you are, you still have a purpose to someone. It might be your child or children, your partner or spouse, your friends or even people you don’t really know who see you “putting on your big girl pants and doing life”. For me faith helps as I know I have someone bigger than any problem I can go to and lean on when it gets tough – and even now life is and can be very tough at times. But the difference is I know that “this too shall pass” and also through other support groups, self help books, the things I’ve learned from the Expert Patient Courses, the support I’ve had from other Christians and from some very good friends who have often walked into the fire with me, I know that I am in charge of my thoughts and my actions far more now. So when I start negatively thinking and feel like I’m being sucked down a drain because of life and its hand grenades I can stop the tape running and do something constructive or creative that will help me “change course” and move on.