Editors Note: Read this very forthcoming and upfront post about the real experience of one person living with MS. They have 2 children and their MS is steadily progressing and affecting all areas of their life. This version is the full unedited version that the author wished to be published rather than a more brief summary published elsewhere.
This We Don’t Talk About story was originally published in shortened form as ‘I Feel Sorry For The Person Who Left Me This Note. They Clearly Don’t Understand Disability’ by The Huffington Post on 2 May 2016. You can read that version here. This is a longer, more complete version of Justine’s story.
By Justine Van Den Borne
Justine Van Den Borne made national news on The Project after her Facebook message to someone who left an abusive note on her windshield went viral. There have been more than 250,000 Facebook likes, 58,000+ shares, and 42,000+ comments so far. She is 41, the mother of Annabelle (19) and James (17), and is living with Secondary-Progressive Multiple Sclerosis.
Let me tell you what my MS is really like
A few days after I posted the note on Facebook on 10 November 2015, I wet myself in public.
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 MS diagnosis.
Everyone’s disease is different. We all have different stories. But we have many 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.
They also don’t know how to react to my increasing disability.
Two months ago – after I was on The Project – 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 down on the grass and sobbed. I knew the heat was making it worse, and so I dragged myself to the nearest shade. 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. Because 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.
But 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 have a strap, because I don’t grip like a normal person and shoes just fall off. Last year I stepped on a pitchfork in the garden and ended up in hospital… that was the first time I felt anything in my foot for years.
My hands feel like I am wearing gloves. My fine motor skills aren’t what they used to be. I can’t even plait my daughter’s hair.
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 you saw me on The Project, I was in pain.
This is how it impacts my family and my future
My children, Annabelle and James, live at home. They are 19 and 17, and 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.
It started with numbness in my hands and feet nine years ago. I ignored it, as you do. But then my neck and face went numb, so I went to my GP. My blood tests came back normal, so I was sent to a neurologist.
They suspected a brain tumour and ordered an MRI. The neurologist found no tumour: my brain and optic nerve were – and still are – fine. But they did find four massive lesions on my spine.
I was diagnosed with Relapsing-Remitting MS (RRMS), but after a while my neurologist changed my diagnosis to Secondary-Progressive MS (SPMS). SPMS does not have the relapses that RRMS. It just progresses over time.
All these years later I still only have those four lesions. But they are changing colour, indicating more white matter. That means more damage has occurred. I have weeks when my body stays the same, but it never lasts. I notice my progression. There is always something little going on.
I notice. It makes me think of my future.
Before my diagnosis, I feared the fate of the guy who played Superman – his brain still worked, but was trapped in his own body. That may be what MS means for me.
I am an only child. My parents worry about me. My mother helps me so much deal, and wonders 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 they are confronting their 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. But then again, I wouldn’t want to know unless we could treat or avoid it.
My son plays his cards close to his chest and I’m not sure what he thinks. He is always around to help me though, picking his sister up and taking her places now he can drive.
My daughter worries for me. She is like my shadow. We are always together.
I want my kids to be kids. But my MS has impacted their childhood. 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.
Their father and I split up ten years ago, before I was diagnosed. Daryl is a fantastic dad and ex-husband. It took us a while, but I think we co-parent well.
I have been with Michael for the past nine years. He has been with me every step of the way with MS. But it has been hard for him. He knows what I deal with behind closed doors.
What I have lost – and gained – because of MS
I was made redundant at the end of 2012. I experienced a massive progression in my MS that year and some days I couldn’t walk without falling. My neurologist suggested I stop working, as I was only making the MS worse by trying to do more than I could. I now receive the disability pension. I am grateful for that, but it was not a choice I wanted to make. It was depressing; it felt like I was giving in to the disease.
But MS is makes things hard, and some things are no longer possible.
We have gone to Thailand as a family for the last couple of years, but the next trip will be the last time I can go. It is just too risky these days. I fell over last time and dislocated my finger, ending up in Bangkok Hospital. What if I hurt myself more seriously next time?
My MS progresses every year. Sometimes is just a little worse, and sometimes there is a step change.
I will have to learn to self-catheterise soon. The thought frightens me.
We just brought home a puppy, a Labrador called James. He is to be a companion dog for me. There are aid dogs for people with MS and Parkinson’s disease, but there is a long wait list. I am going to see if I can train James to pick up what I drop.
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.
I think we all have to do our best to stay standing up, and this is my way.