A Mum With MS: It Doesn't Matter How Slow You Are, Just Keep Walking
My very good friend, Nathalie Gibson, has been talking to me for a while about sharing her story. As a parent with a disability she struggles to find voices sharing experiences that she can relate to. I wanted her to write this blog for Not So Smug Now because I know this conversation needs to be more visible, but also because I have neverseen anyone show such strength and dignity in the face of truly shitty circumstances. Here's Nat's story.
I’m weirdly asked a lot of things about my health by random strangers since being more ‘visually’ disabled. It's as if people feel the need to break an uncomfortable silence with me when I’m in their peripheral vision - or they need to address the ‘wheelchair in the room’! - and I’m fine with it but no one seems to ask me about me as a parent? Surely it’s not a taboo subject is it?
Today, though, I feel compelled to share what it’s like, as at this very moment in time I’m having a nightmare, both as a parent and being disabled. Currently, my 4 year old daughter wants to make a cake from the dying flowers in my kitchen, the herbs from my kitchen draw, glitter, and the red strains of hair from her Ariel doll she’s brushed bald. Any normal weekend this wouldn’t leave me sitting on the sofa next to her clutching my cup of tea silently sobbing, but this morning, I’m defeated and ashamed.
It’s the first day back after half term and only about 10 minutes ago was the end of a hour long testing stand off with my screaming, crying, shoe-throwing deranged daughter whilst trying to get her out the door and into school. I’m anxiously looking at the kitchen clock and worrying about her not being in her first lesson as she’s now happily playing here at home. I know I’ve lost this one...and I’m not sure right now how to win it back! I’m sure others can relate to a simialar outcome when the battle just gets too much for your sanity, you simply have to, in the words of Elsa, ‘let it go’. My feelings of failure, frustration and guilt like this morning, happen regularly. Not because I think I’m a shit mum, but because I have MS and I feel it exposes my ‘inabilities’, of which I try so bloody hard to hide to not be a shit mum.
Of course my daughter doesn’t mean to expose my weaknesses whilst pushing boundaries. For goodness sake, she’s four and I know she doesn’t understand! Yes, I have good mornings before school, where I’m able to walk smoothly down the hall to my front door carrying her bag either in one hand or between my teeth whilst clinging to the walls. Some mornings I’m able to brush her hair and put a plait in it (not french - I’m realistic) and some mornings my husband needs to do it all for me before he leaves for work. There’s no continuity or set routine with MS. Today, l am having a bad day!
The first few weeks and months of learning how to adjust to motherhood were bloody hard. It is for us all, but on top of the usual pressures, I was also trying to adjust to having an unpredictable disability...both physically and emotionally. Everyone’s MS is ‘different’ the symptoms depend on where a lesion decides to invade and that could be anywhere, at any time, in the nervous system. I have a considerable amount of damage in my spinal cord - which has left me with a whole load of life changing scars. I’ve recently had to learn how to self catheterise which may sound icky but trust me, It’s a massive improvement from the days I use to get caught short and resort to using my car as a urinal (when I did drive). Often, it would simply be because of poor accessibility leaving me unable to enter an establishment all together, so in order to have some dignity and privacy, my car with tinted windows would do the job.
The spinal cord damage has also left me with the inablility to walk unaided. I take muscle relaxants for spasticity and strong pain relief meds for neuropathic pain caused by sensory loss in both hands and feet up to my knees. I remember a funny story a few years back of an elderly man chasing me down the street because I had lost a flip flop and didn’t realise. I just smiled said thanks and carried on - he just thought I was weird! I adjust well, I think, to my symptoms, but when I get a different batch and need to re-adjust, emotionally it’s tough - but what can I do about it?
Today, I sit and think of how tired I am - and how I’m so pissed off with this desease that’s violating my body; a disease that's robbed me of having more children, a career and left me feeling vulnerable and lacking in confidence as a parent. I'm annoyed I can’t just pick Alice up and carry her out the door or chase after her when she runs away from me. If only she knew me before MS, she wouldn’t have a chance of out running me! I still hold the school record from 25 years ago for the 100m sprint so why is it that I’m the one now who gets the short straw and can’t take two steps on my own?
Life should have been less cruel. It should have left me free to run, walk, skip, jump, to do all the things Alice can do. From when she was born I was never able to carry her unless sitting down. I couldn’t walk her in a pram, take her to baby groups, swim with her, have a bath with her, be the one to hold her when she’s having her jabs, pick her up when she falls, push her in a swing, even put her in a swing. At times, I was unable to change her nappy.
Despite all that, the very worst thing for me was never being able to be on my own with her. I always needed help because of my MS - I was becoming less and less independent. I resented those times and resented people around me that could do what I couldn’t. Holding Alice so easily, dancing with her in their arms and taking her out. I never left our flat with just me and her - it was soul destroying.
Those were dark days....and this morning's bad - but not that bad. I clutch my tea and pass Alice the soggy spoon that's dropped her mix of whatever she’s put in my lovely salad bowl. I take a breath and look at her face looking back at me...and I see the love she has for me. She knows I struggle - and I know she can see my sadness at times. But her love for me is unconditional and it’s beautiful and I love it. She loves me for who I am and doesn’t care if I have legs or not. She doesn’t know any different.
I love being a parent (not a disabled person) but a parent. Yes I look at my disability at times when I feel it’s beating me, see it’s restrictions and have a rant and a cry - wouldn’t you? Then I think I have to get on with it. It is what it is. It can’t destroy my soul, my determination, my personality. I have one beautiful, wonderful daughter and I think, without her, "Would I be walking at all? Would I be up at the crack of dawn? Would I have a social life with the parents at the school gate. Would I have just given up already?" I now get over the dark gloomy thoughts of self pity and think about my many achievements as a mum: I was the one that got rid of her dummies whilst Paul was abroad with work because I simply did not have the energy to find them. I’m convinced potty training was so much easier for us as Alice had to witness me often pissing in tupperware in the kitchen as I couldn’t hold my bladder or walk to the toilet. Alice is caring to all kids who are upset, because she sees the love between my husband and I when things are hard.
She quotes Peter Rabbit to me when I fall and struggle to get up saying ‘never give up’; a phrase I use with her when she gets frustrated and can’t do something. I recall the strength I had back in those dark days when I was awake sitting next to Paul at every feed, every cry, every burp. I refused then to let my disability destroy my mental health, stop me or be an excuse to do nothing.
So now, I know don’t have to be the most physical, or energetic parent. I teach her about being strong, how to feel empathy for people that are less fortunate then us, that the world needs to change in so many ways regarding accessibility and how we can help that. I am proud that I'm in control of my role as a mum - even if the tremors, weakness, numbness, stiffness and spasticity takes control of my body - I am still Mum, a title I hold so very proudly.
I want to be the best Mum I can with a disability. And yes we’ve not made it to school this morning - but I’m not giving up now. I will not and cannot let this rob Alice of her life - not one bit. After my tea I’m going to pretend to taste the cake Alice has made with flowers in it .... then I’m going to crawl around the flat, pick up all her clothes, get her dressed (again!) and together we will go out of that front door ON OUR OWN and go to school on our mobility scooter, of which I know secretly every kid in that playground wishes their mum had one too.
Life goes on - doesn’t matter how slow you're walking, just as long as you keep moving!
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