We Don't Talk About_Sammy Moynihan

Thriving with Primary Progressive MS

This We Don’t Talk About story was originally published on 23 May 2016. You can read it here.

 

Sammy is 27 years old. He was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) in early 2013, but has felt the effects of MS since his final year of high school in 2007. MS has fundamentally altered the course of his young life.

Life is full of things we can’t control. You can be as organised and disciplined as you like, but the chaos of the world will always catch up to you. Just when we think life is going zig, it zags… Or goes completely off the rails and lands in a ditch somewhere. One thing we can control, however, is the way we embrace this uncertainty and our attitude towards things that seem to be out of our hands.

I was diagnosed with Primary Progressive Multiple Sclerosis four years ago, but I could feel the symptoms creeping up years before the official diagnosis. At first it was gradual, but they moved faster and faster each until I finally realised ‘something’s not right here’.

Walking became uncomfortable and my legs were always in pain. I was forever exhausted and constantly falling over for no apparent reason. My whole right side became almost non-existent – excessively weak and unable to function ‘normally’. I found it difficult to grip objects, walk up and down stairs and even shower properly (because I couldn’t reach my armpits to apply soap). Every now and again, my brain was overcome with a foggy sensation and I felt like I was always on hard drugs. Remembering simple things became a chore, as did tying my shoelaces. Standing up was something I dreaded, as it meant shaking randomly and longing to sit back down. Other symptoms would come and go as my body played Russian Roulette with itself.

Initially, I thought it was part of growing up – that people are supposed to feel awful all the time and I wasn’t any different to everybody else. After much insistence from my mother, I saw a litany of different doctors before my GP suggested I see a neurologist. He told I could have a brain tumour and ordered an MRI scan. The MRI did not show a tumor, but it did confirm my diagnosis.

The day I was diagnosed with MS is a day that will always stay with me. Primary Progressive Multiple Sclerosis. There is no cure or official treatment, but symptoms can be managed. For some time, I felt very depressed about the whole thing and lost my motivation and drive. I approached life as though each moment happened in a vacuum, merely existing rather than living my life. I dropped out of university in a hurry and stopped doing the things that made me happy.

People think MS is a death sentence but as I came to terms with the illness and learned how to manage it, I realised it was more of a life sentence. MS is a physical reminder of the chaos and changing nature of life. On some days I feel fine but on others, I will be blindsided by a new symptom or overwhelmed by the existing ones. But in managing these symptoms, I’ve become more resilient and less afraid of things I can’t control.

It seems easy to tell sick people to be positive and everything will be fine. In a medical sense, being positive is what got me into this mess in the first place. There are times when smiling or pretending everything is ok doesn’t work. And it is more than reasonable to be upset about having MS. Still, I have found ways to release my anxieties and acknowledge the good things, even when it seems they are few.

I began writing a blog some time ago, Fully Sick with MS. It has been an excellent and therapeutic creative outlet. When things go wrong, I write about it and try to see the funny side. Not only is this cathartic for myself, I’ve found that it has been great for my readers also. The blog has become a great place for people with MS (or any illness including ‘life’) to connect with each other, share stories or even just laugh in the face of adversity.

I was overwhelmed by the amount of attention the blog received so quickly and by how many people appreciated my stories. I overheard people talking about the blog on the bus and kept receiving emails from like-minded fans. I was a little anxious that I was going to turn into ‘that guy with MS’, but I was also mindful to showcase other aspects of who I am. Now I am an MS Ambassador with MS Australia, and I can share these stories in person. I try not to be defined by the illness, but I also don’t want to be scared or ashamed of it either. Differences should be cherished, talked about and never ignored.

My values changed dramatically, and I’ve found myself going in new directions. I returned to university last year. My relationships with friends and family have strengthened, and I am restoring the optimistic attitude I had before the diagnosis.

I realise that by accepting the negative aspects of life, we don’t have to delete the positive ones. We can acknowledge that things might be awful at a given time but we don’t have to let that feeling consume us. Whenever I feel anxious or sad, I embrace it and don’t waste time trying to block emotions. Once I embrace it and accept it’s there, I am able to look beyond it at the things that make me happy. MS can feel like carrying a burden. While I don’t think that burden will ever completely disappear, my back has become stronger (at least in a metaphorical sense).

The chaos and uncertainty I’ve been speaking of can be frightening, but it is also one of the beautiful things about life. Whether you have an illness or not, it’s thrilling to be able to wake up each day with no idea what surprises are in store. New experiences and faces flit in and out of our lives everyday. I have no idea what will happen tomorrow but I sure as hell am excited to find out.

Huffington Post Blog Australia

I Feel Sorry For The Person Who Left Me This Note. They Clearly Don’t Understand Disability

This We Don’t Talk About story was originally published by The Huffington Post on 2 May 2016. You can read it here. A longer, more complete version of Justine’s MS story is published here.

 

I wet myself in public a few days after my Facebook message to the person who left a note on my car went viral.

I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.

I sympathise with people who don’t understand. I didn’t understand MS or disability until I was diagnosed. I do now.

And this is what I want you to know.

I am eight years into my diagnosis of Secondary Progressive Multiple Sclerosis.

Everyone’s disease is different. We all have different stories, but we have similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.

For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.

Slide1

They also don’t know how to react to my increasing disability.

Two months ago, I had my first instance of not being able to walk. I say first, because it is likely to happen again.

I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn’t walk, I couldn’t move. I sat on the grass and sobbed. Fifteen minutes later I was able to raise myself into a chair.

My friend could have helped me move, but I wanted to do it myself — losing my ability to walk, even for a short period of time, makes me cling to my independence even more.

The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.

MS is more than that one horrible episode or bladder mishap. It is constant.

I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.

I can’t feel my feet. That means I can’t wear shoes that don’t tie or have a strap, because I don’t grip like a normal person and shoes just fall off.

I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don’t use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.

And I am in pain.

When you look at me, I am in pain.

When I appeared on Channel Ten’s ‘The Project’ to talk about the Facebook post, I was in pain.

This is how it impacts my family and my future.

My children, Annabelle and James, live at home. They have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.

I have weeks when my body stays the same, but it never lasts. I notice my progression. It makes me think of my future.

I am an only child. My mother helps me a great deal, and worries what would happen to me — and my kids — if she were gone. In the normal scheme of things, I should be the one worrying about them, but she is confronting her daughter’s mortality.

I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. Then again, I wouldn’t want to know unless we could treat or avoid it.

I want my kids to be kids. I don’t like to ask for their help, I don’t want to burden them. I want them to experience the freedom I had, growing up with parents who didn’t have MS.

MS makes things hard, and some things are no longer possible. Sometimes it is just a little worse, and sometimes there is a steep change.

My bladder is getting worse. I will have to learn to self-catheterise soon. The thought frightens me.

I still feel sorry for the person who wrote the note. They clearly don’t understand disability. But good things have come from it — there is greater awareness.

And I hope people read this. I hope it makes them think.

what is your story question in vintage wooden letterpress printing blocks, stained by color inks, isolated on white

What I learn from interviewing others

Everyone has a story. Too many people think their story is not worth anything. That it is not ‘special’ enough.

But all stories are, when told with guts and honesty.

I’ve stumbled upon a community of people who have profound stories to tell. It is not a community anyone chooses to join. We are ill. And the stories are of death and dying, pain and trauma, but also of survival and living.

I’ve learned I’m not alone. Each time I interview another person, I learn a little trick or a hard-won insight that changes my approach to my own illness. Doctors don’t know these, nor do carers. Only the ill.

And I’ve learned there are many of us – more than 4.5 million live with chronic illness (many of them invisible) in Australia alone. There are so many stories to tell, and to learn from.

What is your story? And whose story do you know?