Four years ago today I was in a psychiatric unit suffering from anorexia and severe depression. That morning I was awoken by a nurse. They knew my physical conditions meant I needed a lot of sleep and that I didn’t eat so I didn’t go for breakfast. “What’s wrong?” I asked, annoyed that they hadn’t let me rest.
“Your parents are here to see you.”
“What time is it?” I presumed I must have been asleep all day.
Suddenly my mind whirled with the myriad of things that could be wrong. Maybe the dog had died. Maybe one of the kids had had an accident. Maybe the house has been burgled.
“Why are they here?” I asked her.
“They need to speak to you.”
I climbed into my wheelchair and went straight up to the relatives room. My mum and dad sat next to each other looking anxious. “What’s going on?”
“Jenny’s dead”, my dad’s tone was flat, lacking emotion, the same tone he had whenever he was sarcastic.
“Haha,” I said, “what’s really wrong?”
“I’m sorry”, he said.
We sat there looking at each other in silence, my mouth agape. A guttural, animalistic howl broke the silence. It took me a moment to realise it was coming from my mouth. I desperately tried to recover my thoughts, to calm myself down, to talk, but the noise kept coming and then broke into sobs. My mind was full of “NO”.
Jenny was my aunt, but that word entirely fails to convey who she was to me. She was my dad’s twin and had never married or had children, and so she was a third parent. I had spent most school holidays with her and numerous holidays. She was often my emotional oasis and in the year preceding her death she had lived in my house with me, my husband and my children. I had lost numerous people throughout my life, but this was the biggest loss I had ever experienced.
I spoke to her the day before she died. She told me that I should just get rid of her ashes when she died because no one would want them. I told her that I would want them, and expressed to her how much I loved her. She was surprised. I still don’t know if she ever truly understood how much she meant to me- to many people. She was supposed to visit me the following day, it made no sense that we should be cut off from one last meeting by a measly 24 hours.
Jenny was born in 1947. On the very day she was born she was diagnosed with polio. They didn’t think she or my dad would make it through the night and so a vicar came into the hospital to christen them. She was a fighter from the get go though. She was left with paralysis in her right arm, partial paralysis in both her legs, and one functioning lung.
When she was a child the doctors performed numerous surgeries on her. My grandmother thought that they knew what they were doing and so agreed to the procedures, but in actuality they were treating her like a guinea pig. Jenny was greatly infantilised throughout her life and when she experienced strong period pains it was recommended that she have a hysterectomy whilst she was still very young. I know some people in my family may disagree with my reading, but I’m quite certain that had she not had a disability this would never have happened. It was almost expected that no one would ever want her because of her disability and as such she would never have children anyway.
I don’t think she ever got over not having children. She would have been an amazing mother. She had so much love to give and that space in her life almost acted as a crystal refracting that light in a myriad of directions. She was the most generous person I’ve ever known and as such she was perpetually broke. Often that generosity was taken advantage of by those around her, but she’d often shrug it off with a “life’s too short” type comment.
In 1998 she was diagnosed with non-Hodgkins Lymphoma. The cancer was aggressive and made her feel terribly ill, but her indefatigable spirit continued. Indeed she continued to live with my aging grandfather and cater for most of his needs, when asking for him to enter residential care would have been so much easier for her. She faced cancer with the same humour she faced the rest of her life- often throwing off her wigs and painting her head with glitter, and the tiny bits of hair she had with hair mascara, and dubbing herself “Aunty Fester”. It was during this time when she smoked weed for the first time- an experience I think she shocked herself with.
As she grew older the Late Effects of Polio began to plague her health. She was diagnosed with diabetes, and then COPD and heart disease, amongst numerous other ailments. The last few years of her life were spent in and out of hospital. She tried to tell us all that she was dying but I don’t think any of us really believed it- she was just so full of life. She was the life and soul of the party. On my 18th birthday we all sat in my garden under a gazebo in the pouring rain whilst Jenny encouraged my friends to repeat, “I am a pheasant plucker…” amongst other things. She came with us to the Rocky Horror Show and went in full Magenta dress. I can’t listen to Queen or ABBA now without remembering her singing at the top of her lungs despite not being able to carry a tune. Hers was a “world be damned” attitude.
As such her death was a total shock to me. A bolt out of the blue and straight into my heart. The day before I had been given a card from her- “Please look after yourself and get well soon baby. Remember I will always be there for you”. Even now as I type those words a tear roles down my face- how could always be only 24 hours?
I took her mobile phone from my dad and from my hospital bed called every number in her contacts to tell them that we had lost her. Over and over again I was told stories about how amazing she was. On the day of her funeral the crematorium was so full not a seat was left and tens of people had to stand at the back. I sobbed to the point where it hurt- and so did many others. She was an aunt-mother and a great aunt-grandmother to us. She might never have been a biological parent, but she was my extra mum nonetheless.
I often say to myself “if Jenny could get through it, with all of the additional things she had against her, so can you.” She was the perfect role model for a person with disabilities. Society threw everything they could at her, trying to pull her down in a huge number of ways- including assaults and social exclusion, but she wouldn’t let it faze her. Yes, she sometimes felt low, and indeed suffered from depression, but that’s not what bravery is about. She fought back against an incredibly oppressive society, and though she took her knocks she never let it change who she was as a person- put simply the kindest, funniest, most generous, kickass person I’ve known. I will miss her every day for the rest of my life. She was only 63 when she died, but she made her 63 years on this Earth count for a thousand lifetimes.