Today would have been my mother’s 80th birthday. She died two years ago having battled cancer for just over 5 years.
She was diagnosed with cancer and then went through the first two years of surgery, chemotherapy and radiotherapy before I realised that something was very wrong with me, something that was eventually diagnosed as CFS ME. Our illnesses overlapped for the better part of 3 years.
I once had an argument with an early appointment with a Clinical Psychologist in an NHS CFS ME clinic who suggested that my illness and symptoms might be caused by the impact of Mum’s.
I shouted her down in anger, hugely offended that someone could minimize and attribute what MECFS is to an emotional cause. That conversation still angers me. It absolutely isn’t! At that point Mum was managing her Cancer and it wasn’t terminal, that came later on.
After you died my illness got much, much worse. It was because I had to do so much in those last weeks, I was on a roller coaster and couldn’t get off. I was extremely ill and housebound for a year or so, but you know that, don’t you. I felt you watching me.
Mum. You were there for me from the first moment I sat in my GP surgery, telling him that my fatigue and pain was so bad, I couldn’t continue going to work, when he first signed me off sick.
You were there when I sat next to you at the kitchen table at home, during your second cycle of Chemo when you must have been feeling so unwell and listened to me saying that I knew something was very wrong with me, something that wasn’t just recovery from the flu I’d had.
You came with me to the awful Work Capability Assessment and without asking you to, sat in the room with the doctor throughout. You helped me when I needed to appeal, getting the evidence together of what was and wasn’t said in that room.
You told me you understood how bad my fatigue was, because you had experienced the same when recovering from Chemo. That always made me feel like my symptoms were validated, even when no-one in the medical profession did.
It was awful watching you suffer so much before you died. However you taught me how to be strong when you aren’t well. You taught me to look at the things I value, so that with my minimal energy I can still do them. Life has depleated in ever decreasing circles but the things that are still around me are the things I value most.
I can’t sing any more, the talent you passed on to me, because it is too exhausting. Sometimes I try a few notes and my voice is still there. I still think about music a lot and won’t let that slip through my fingers like so much else of life has done.
I learn a lot about a lot of different things – like you did and I value the people in my life who care about me being unwell and are there for me – as you did with me too.
While you were in hospital, a couple of weeks before you passed away, I held your hand and said: “don’t worry about me, Mum. I’ll be OK. I’ll recover, they’ll find a cure one day.”
And although you couldn’t talk much, your eyes told me that you’d heard what I said and understood them, one less worry for you to carry with you as you passed on.
I’ve only just begun to understand you in the months since. I’ve begun to understand why you didn’t talk about having cancer, why you didn’t speak about death. It was because you wanted us to live our lives fully, without worry.
After you died I heard you say to me so clearly, as if you were standing in the room: “Life is short, you have to be happy now.”
I wrote it down on a post-it note. It is sellotaped to my wall. It is the reason why I am moving home, it is the reason why I have become selfish about what having MECFS means and it’s the reason why I am now so respectful of my overall health and do the best by my body and mind as possible.
Mostly, Mum, I thank you for being so loyal, present, generous and giving and kind.
Even when you were feeling so unwell yourself. You were a guiding light in my life and gave me the strength to get through and survive this illness.
I speak to you and think about you every day. Happy birthday. X
© Lindy 2015