What if we viewed lived experience as an asset? As an asset of professional, economic,…
“So be sure when you step, step with care and great tact. And remember that life’s A Great Balancing Act.”
― Dr. Seuss, Oh, The Places You’ll Go!
With such a severe and limiting illness, and so many things to do to keep me alive and stay on top of my health issues, being a family has been put on the back burner. Life generally always revolves around me, no matter how much I hate it nor how hard we try to be a normal family. Hospital appointments, hospital stays, doing my TPN and infusion, doing injections, medications, emptying and changing my bag, taking me to the toilet, sorting out supplies, doing orders, paperwork, making phone calls, washing and changing me, getting me what I need, etc.; there’s always something that needs to be done for me. We can’t change the fact that I’m ill and the fact we never know how long I will live. In this household we live day to day, probably even hour by hour, as we never know what is going to happen or how well I am going to be, and things can change in the blink of an eye. Then when you add in the fact that my mum works full time (as does my sister) and we have carers in every weekday, most nights and some weekends, there’s so many people and situations to consider. Plus we have pets (two cats) to add into the equation. There’s so much to juggle.
There are three people in this household, which is so often forgotten. I have a lot of guilt over and sympathy for my sister, it can’t be easy always being the one left out. My mum doesn’t have much time left once she’s done her job and all she has to do with me, so her time with Vicky is precious and can be few and far between. Mum does her best given the situation. And Vicky and I rarely spend time together. We’re so different and have only got on since I’ve been ill, but she has her own life and my life revolves around my health care and of course the fact that I’m stuck in my bed; my bedroom is my world. I won’t lie; after having the carers here and as the day goes on I get more and more tired, so by the time Vicky is home from work I just want to chill and be left alone. I don’t want to have to chat and “perform” – that’s how it feels with people here, I feel constantly under pressure to perform. I spend all my time in my room, and so mum spends much of her time in here with me, and I can understand why Vicky feels left out. And I’m the first to admit I can be unwelcoming and short with her. I just get so exhausted and frustrated, and because I feel at ease with her and mum I can relax and be honest, and that means I can be miserable.
Mum has tried so hard not to make Vicky feel responsible for me in any way. She had a friend as a child whose brother was poorly and her friend was always having to help take care of him, and mum didn’t want the same for Vicky. She wanted Vicky to have a life and to be young, not to be a young carer. Consequently, we’ve slightly pushed her out. She also doesn’t often make time for us or come into my room. We are all to blame for the way things are, we all play our part. We need to work hard together to correct this, to unite and face the struggles and limitation as a family and as friends.
I realise that all families have their difficulties, and the family dynamics frequently change and we adapt to these changes. This is especially true when one member of the family is ill. Even more so when that person’s very existence is being challenged. Everyone wants to do right by their family, but illness greatly shifts the family balance. Most people are looking forward to the future, letting go of the past, but we’re a bit different. The future is very uncertain for us; it is too frightening to consider it a lot of the time. So we are holding onto the past, when I was well and life was simple.
One thing we hold on to is laughter – it truly is the best medicine. We have managed to see the funny side in the most adverse of situations. One day I hope to compile a list of some of our more difficult or awkward situations where we have been reduced to fits of the giggles at the most inappropriate times. Even tears of sadness can turn into laughter.
And so our balancing act goes on, hour by hour and day by day, sometimes sunshine and sometimes rain, but I’m always looking for rainbows.