When my mum died...coming out of the closet

So many people have shared with me over the last few months their pain-filled stories. Which has reminded me how much sharing stories creates safety for other people to share their stories. I wonder in our culture how many powerful healing stories are hidden away in closets. Are there unwritten rules about "appropriateness" of story telling? Or are there just safe private story telling spaces? I wonder how big a role shame and fear have in keeping us all quiet about our real stories. Someone said to me the other day how great it was that I was now "out of the closet" (and not in a sexuality way.. that's a whole other story!) But in regards to opening up and sharing.. And yes it is great. It was a dark closet there for a while.

So this story is about some of the pain that can keep me in that closet .. And what happened to me when my mum died.

I tend to live with a level of pain in my heart. Being overly empathetic to everything and everyone doesn't help! I've tried so many ways to get rid of this pain, including taking anti depressants at times, as I've been so desperate to have a rest from it. I can get exhausted by its persistent intensity and it's need for attention. But honestly, trying to get rid of it never really works. Numbing it numbs everything, which then makes me feel like being a robot. So one of the tools that works the best for me, which I always come back to, is sharing stories. Sharing my own story, listening to other peoples stories, and reading stories feels like connection. Pain cannot live so intensely in connection. And really what is the point in having all these stories and experiences if I don't share them. It feels like wasted pain (and i'd be greedy to keep all that pain to myself!)

I used to share my story a lot. For 10 years I talked at Huntingtons Disease conferences around Australia and the world, telling my families story and trying to connect and improve supports for people, especially for young people. When I grew up with Huntingtons Disease I literally thought we were the only family on the planet living with this illness!  The world has grown and connected so much since then. The internet allows people to connect and share stories much more freely, which reduces one of the biggest killer to the human spirit... isolation and loneliness. If isolation and loneliness get a hold, I know what happens to me. They take me on a very dark downward spiral tunnel. They hurt my spirit and my heart. Its very hard for any light to get in down there. I have to work very hard to stay out of that dark tunnel. Telling my story is one of the ways I connect to life and light. Darkness can not exist when there is light, even just a little light.

When my mum died 3 years ago I stopped talking and sharing so much. Maybe I needed to stay in darkness for a while. I lost my confidence and passion to make change. I felt lost after experiencing the reality that Huntingtons Disease actually kills people. I mean I "knew" that. But that's very different to experiencing it. For so long this disease just took my mums abilities. For each loss in her decline there would be a new wave of grief, I was so used to that. But her spirit was always alive, even if her body and mind was leaving.

Huntingtons Disease is cruel. Over a 20 year period the person who carries the gene is unable to emotionally function as well,  decisions become jigsaw puzzles, involuntary movements take away independence (ill never forget the huge grief my mum faced when she lost her license at 42, that marked the end of freedom), there's a lot of dropping things (cups, food, pants!) eating food becomes a life threatening experience, walking becomes a dance, toileting skills are unpredictable and communication requires the skill of very good listeners. The losses are slow, endless, and inevitable. And yes, I always knew she would die one day ..but when it happened it felt so final and abrupt.

People would say to me (out of very good intention, so no judgement here if you said this to me!) but people would say "oh it must be such a relief your mum has passed away". I can understand these words from a logical perspective, because of course it would seem like a relief. Who wants someone they love to be stuck in a nursing home bed for years on end. No-one. So I get it. And 3 years on yes I now feel some relief. But at the time, every time I heard this, a piece of my heart would break. To the point I just didn't want to bump into anyone or talk about it anymore. I didn't feel relief at all. I just felt like I wanted my mum back. I didn't want my mum to die. I wanted her to get better. I wanted the magic cure she waited so patiently for.

Every time I came back from speaking at a conference she would ask the same question from her nursing home bed "cure?" and I would respond with the same devastating answer "no mum" In 1995 they discovered the gene for Huntingtons Disease and there was a lot of hope around this time that there would be a cure. She held that hope for that cure for nearly 20 years, until her death.

I think after my mums passing I had to step away from talking about this disease so much. My heart and spirit felt traumatized. Every time I would do a talk at an event I'd have days of recovery and I felt like I was stirring up painful toxic poison in my heart. So I stopped talking at events and stopped being involve in the HD community. I needed to be with my mum who was now gone, and that felt like a silent space. I needed time to be with her in new ways and reflect on her death.

There were so many times during her illness that she would ask to die. So many times she asked me to help her die. It was absolutely heartbreaking over the years having her ask to die and there was nothing I could do, other than comfort her and listen. There were so many times I wanted to help her die but couldn't. There were so many times I prayed and wished she would die.

But when she did die... I felt no relief. I just felt overwhelmed with emotion and a huge loss of both of my mums. I felt the loss of my "well" mum I had as a kid. The mum who was just a normal mum. The one who did normal mum things like read, cook and play with us. The mum who came to all our school events, volunteered at the canteen. The mum who stood up for us when we were bullied and fought against injustices. That mum died when I was 15. But there was no funeral for her.

But when my "unwell" mum died I finally got to see her again. I got to celebrate the mum she was, and honor her and all the love she gave us. AND I got to celebrate the courage, humor and beauty of my mum who had Huntingtons Disease. Both of these women lived with great strength and love. Both of them showed a huge capacity to live with courage in the face of illness and always found the capacity to find joy. Celebrating and acknowledging that felt like a relief.

And now being able to talk and share stories again feels like a relief too.

"Those with the capacity to feel great pain are also those with the capacity to feel deep joy. Those who fall hard rise gloriously" Glennon Doyle Melton