My little cheerleader

It feels so strange to say it, but this last week or so, I have been on top of the world. Tired, but accomplished and oh so proud.

Knowing that I struggle and knowing that I don’t want to hide forever, I have taught Squidgelet to say 2 phrases on demand:

“Take your time Mummy’

&

“Come on Mummy, you can do it!”

I love so much that she’s so willing to support me in this way because, whilst I confess I am easily overwhelmed, she remains the reason I do everything and her words calm and focus me so much.

We are home alone today and I was determined not to waste it slobbed out in front of Youtube. Despite how much the thought scared me, we got in the car and I drove. Somewhere new. And when I pulled perfectly into the space, Squidge declared: “Mummy did it!” I was so proud.

Today, for the first time ever, I took Squidgelet swimming on my own. She’s two-and-a-half now, with such amazing communication and empathy for her mummy. I have always been too scared, terrified I might fall.

But she listened to my every instruction, always looking back as she held my hand to make sure our small and steady steps on the slippery surface were keeping pace.

She splashed, she jumped, she kicked her powerful little legs and swam all on her own. It was almost as though, with her buoyancy vest on, she didn’t need me. But better than that, she wanted me there.

I struggle to pull myself up onto the side of the pool, but my beautiful girl pulled me the rest of the way by pulling my shoulders with all her might, so determined was she to push me in again.

I’ve never had so much fun!

I dreaded getting dressed again but kept my voice calm and we talked through every step together. I even managed to coax a hesitant Squidge into the showers. I have learnt everything is a matter of making time for it. No need to get annoyed. No rush.

And here is our #successselfie

My awesome little sidekick and me, all dressed.

I had some shopping to get so decided on lunch in Morrison’s 2 minutes away. Parked perfectly there too.

Squidge, very well rehydrated after swimming had an accident as I sat her in the trolley. Potty training is going really well so we’re at the stage of pants rather than nappies and we’re just starting to have dry days.

Related to the cerebral palsy I believe, I had bladder incontinence issues well into my teens that was resolved by medication in the end. I have never forgotten the shame or lengths I would go to to conceal the problem so I wouldn’t have to miss anything fun. I fully believe Squidge has the same excitable logic and I absolutely refuse to let her feel one iota of the shame I did. We carry 10 changes of clothes and handle everything with a “No worries.”

We got her changed and enjoyed lunch together

Pretty much as soon as this orange juice was consumed in one slurp, there was another accident. She waddled back to the toilets, but I praised her highly, remembering too well how uncomfortable it is to walk with soaked legs.

Quick wardrobe change and Squidge was back in the trolley, diligently ensuring all our purchases were well placed.

I adore her and didn’t care a jot when she admitted to “Poo!” as we were at the checkout. It’s much better to see the hilarity in heading back to the toilets for the third time in 2 hours and wondering how I hadn’t been questioned for shoplifting.

The freedom that my determination to show Squidge that there’s “No worries!” is immeasurable. It, and she, are doing me the world of good right now.

Mummy did it, Squidge!

I am too important

I fell over in the supermarket last week. It was not my fault. This I know – displays should not obstruct aisles to the point of injury.

And yet, as I sat on the floor recovering, flanked by 2 lovely strangers who stayed to check I could get up safely, familiar feelings crept in.

Embarrassment. Vulnerability. Shame.

The dull ache of whiplash and resultant stiff muscles ruled my weekend. I cried all weekend, so overwhelmed by misery.

I hate to feel useless. But I feel it more and more. My confidence, ever fragile, is destroyed by every fall. I am going out less and less. I can feel the independence I wrangled for creeping away from me, each of us withdrawing into ourselves. We’re separate again now, you see.

That’s not OK. I grieve every day. I was never allowed to recognise that process when I was younger. I was supposed to be grateful that I had legs that worked and that wasn’t worse. I have been haunted by “it could have been worse”.

I don’t try and deny that grief anymore. I think that by accepting it and letting myself say with the finesse of a child that it is unfair, I am saying it cannot overwhelm me.

Sometimes it still does, this weekend being a prime example. So overrun with emotions – shame and hatred among them – I was desperate to lash out at the body that fails me and punishes me in doing so. Rationally I knew it would achieve nothing, but I was so overrun with hatred for the body I can never turn away from or escape.

It gets so very lonely, being on the fringe of so many parts of society. I can be disabled… but I can walk; I can be a mum… but I walk funny. I’ve never been able to fit anyone’s view. And it has broken me. All I have ever wanted to do is fit.

But I will not. Denying my reality is causing me so much pain. I already have so much pain. I do not apologise when I say I cannot live like this anymore.

I cannot live with I can’t. All that makes me feel is that I can’t be society’s perception of what I ought to be. But I am learning that other people cannot validate what they haven’t come to understand.

I don’t want to waste away here, resenting the safe haven of my home. That is not enough for me. But I do need to feel safe. And so I have finally decided to invest in a walking aid. The thought even as I write that makes me shudder with the embarrassment teenage me felt so acutely when I rejected the option.

But it cannot serve my pride in this way any longer. If I stop living, Squidge misses out too and even if I have to accept a decline so young, I will never accept its effects on my darling girl.

So I’m going to safeguard my independence however I can and teach Squidge that all expressions of emotion are OK, are healthy if they are being processed.

I fully expect that one day she may not want to be seen with her mum and a walker and that’s OK. I have to deal with the disability whatever, so there will be nothing I can’t deal with in her honesty.

But for now, I choose to let this decision empower me. After all, if it helps me carry on, then that’s all that matters. A wonderful friend said to me today “It is not for all the time. Often, it is just a visual reference to inform others you need more time.” Disability is not the either/or scenario I have always imagined. We can work with it. I hope. It feels positive to feel even that.

I am making a choice. I am important. I will shout for what I need. I will teach my girl to shout too. We will muddle through. As Squidge would say (to)”getha”

30 things I have learnt in 30 years of being me

Yesterday I turned 30 years old. I am officially a grown up. I have been always been afraid to age physically but this has harmed me emotionally too.

Last year, in a shopping mall cafe, I sat and wrote out a list of berations. I wrote myself out to be a hateful failure. For all my blessings, I was miserable, trapped in this body and more so, my head.

This year, entering a fresh new decade of living, I am proud to report that with the much needed help of the Mental Health Team I have very much separated that negative voice and now I recognise how and when it tries to sneak in and beat me back down. I have made a conscious choice not to let it win.

These are the 30 lessons I have been so lucky to learn in the last year:

  1. I am a dedicated mum

  2. I am determined

  3. I want the best for myself

  4. I am stubborn

  5. I cannot read minds

  6. The Little Monster cannot be defeated, only managed

  7. My body is not my own just yet but we can learn to muddle along together

  8. Every facet of my identity is my own. They do not need explaining to anyone but me.

  9. The truth can be a friend. I will not spare people’s feelings anymore

  10. I needn’t be embarrassed by my disability on account of people’s lack of understanding

  11. To ask for help is empowering and positive

  12. Decisions taken as a result of my limitations must always be in my best interest

  13. Self care is vital – and allowed

  14. It is OK not to be OK

15. It is vital to be able to say I’m not OK. I have a wonderful husband who wants to listen.

16. I do not need to hide this disability away because I am “lucky enough to walk”. It is mine to own.

17. Not everything is my responsibility. Disability is something society should be accepting of outright. I shall tell it as it is and it should be and no more. My energy is too precious to waste.

18. When I ache, it’s time to stop and be kind.

19. Sleep is precious. Fuck it, napping is empowering.

20. I have brilliant friends who fully support my tendency to drop in and out of their lives, energy dependent. I wish it was different but thank you for loving me regardless.

21. Pain does not have to be endured. Painkillers are acceptable and often necessary

22. I do not need to wage war with a body that struggles anymore. This is a body that has done amazing things for me and made me forever part of the best little person I know.

23. Comparison really is the thief of joy. People are living their own lives to the best of their capabilities.

24. It is no-one’s fault my capabilities have their limits. Least of all mine.

25. I hate to say it but my mum was right…. comfortable shoes and a bag worn on two shoulders is the way forward. Sorry I doubted you Mum!

26. I know this body best. There is very little point in being bamboozled by the medical terms and still not getting the help I need. No more struggling on, I will continue placing the right people and treatment around me.

27. There is pride and achievement to be found in the smallest things. Put my own hair up? Great. Put 3 loads of washing away? Awesome.

28. I will not feel ashamed for repeatedly hitting rock bottom. It is my right to cry and say this life is too hard. Because it is. But I will always fight on for my little family.

29. I will not lie. I will explain each struggle to my beautiful girl so that she understands why Mummy must cry sometimes. She will not be afraid of tears. She will know they are healing sometimes and that Mummy fights on.

30. I will always remember my place in my little family with a girl who loves me and a husband who supports and cares for me in ways I have never afforded myself so that I can enjoy our life together. I will not forget how lucky I am to belong to you both.

Here’s to a very successful 30s!

Happy Cerebral Palsy Awareness Month

No, it’s OK… you don’t actually have to be happy about it. This month, I do not celebrate cerebral palsy because the notion is ridiculous. I celebrate the determination of those I cherish as friends, of myself to live a good life in spite of it all. It’s not easy… It’s never bloody easy. But everything I have is mine. And I am embracing the Month for the first time ever to begin, with a full heart, the lessons I am charged with teaching my little girl about (in)equality, diversity, struggles, acceptance and self love.

I would swap my spine, my hips, my legs in a heartbeat. I am not ashamed of that and whole-heartedly believe there is no one alive with the right to chastise me or tell me I should believe otherwise.

You see, the untold trials of cerebral palsy may be taking me over long before I gave permission but it is not all I am.

This is Kev. My husband. The person that holds me when all I can do is sob and hate every inch of my ruined muscles. Kev who tells me I amaze him because I haven’t allowed myself to drown in these tears in 30 years. Because I stubbornly insist on carrying on.

He is the man that told me there was nothing I couldn’t do, nothing I couldn’t be, if I’d just let myself believe I could do it.

He is the reason I ever left my hometown. The reason I made home be somewhere new.

He is the reason I ever got behind the wheel of a car, the reason I kept going for 7 long years before that little pink licence was in my hand.

He is the reason I am only 2 years away from graduating with a university degree all of my own. I am the reason I started 8 years after all of my friends, but he is the reason I ever took that first step. Because he knew I could when I didn’t.

He is the reason I am a mother. The most sacred of all of my identities.

Mummy to this one. The most precious girl in the world.

This is Immy Squidgelet. 2 years old now and every inch herself. Funny, bright, helpful, inquisitive, loving, sweet… stroppy like her mum.

I never knew I could love someone so completely. That I could craft and meet part of me and think she was the best person ever. This little girl took part of me I never knew I had to spare and she made the best little human out of it, as if just to show me what I really can do. She amazes me every day. I still cannot believe I belong to someone so wonderful. I still look over at Kev and say “I’m her mummy. She’s mine!” The pride I feel whenever I get to say “my daughter”.

This little girl taught me why I must love myself. I am not there yet but she shows me why I must. If I cannot learn to accept the things that make me different then I cannot reasonably expect her to either and that’s just not going to work. I will not have my daughter so negatively affected by something she hasn’t asked for.

She is my reason for fighting on. There are days upon days where I just want to slump on the floor and give up and this one…. she need only come to me and say “Cuggle Mummy” and I have everything to live for. I will not let the part of me I didn’t ask for affect the part of me I am proudest of.

And so believe me when I tell you, I am very Aware of Cerebral Palsy Every. Damn. Month. But it aside, I can be proud of myself. I cannot hope for new body parts and so I must appreciate that I do in fact, have everything I need.

Immy and Kev…. you will never, ever know how proud and grateful this CP warrior is to belong to you both. I thank whoever is up there every day that I have you both and for giving me somewhere to belong. For showing me that CP is not all I am. For not letting me be alone with this. I love you both endlessly.

Please, Ask Me What It’s Like to Be Me

This is written from a place of emotion. CBT tells me that I shouldn’t always listen to my emotional voice. It’s loud and often angry. Mental equilibrium is achieved by letting the rational voice in, to quieten the emotional voice and calm the mind.

But, what I have realised is, my mind cannot be calmed if it cannot believe it is in charge of my body. It doesn’t. I don’t. So, this comes from a place of struggling, of raw pain. Of wishing there could be just a little more understanding.

I offered some insight into my life to a hard-at-work author today, who wants to portray someone, like me, with mild CP in his book. I haven’t seen many such characters (though maybe that’s on me to widen my reading, I get that). But talking to him, telling him my truth was strangely cathartic. I was glad I did it.

See, a lot of my historic experiences have shown me that society believes (and the media often expects) that one disabled person can speak for us all. For me, that figurehead seems to be Tanni Grey Thompson. A very accomplished woman. I will not insult either of us by calling her inspiring. To me, she is just a woman living her life as best she can. After all, that’s all any of us can be right? But to the media, she is the person to (literally!) roll out to explain any disabled related issue to the rest of us. I got sick of the sight of her on TV to be honest and the poor woman has done nothing wrong. But the point is, she does not speak for me, even on the occassions when our opinions align. For starters, we have very different conditions. Tanni has spina bifida. I do not. She uses a wheelchair. I do not. Not all the same see?

I cannot speak to the life experiences of every disabled person, or even every person with the exact same condition as me (spastic diplegia cerebral palsy, in case you wondered). Cerebral palsy has many types, on many spectrums and effects each life differently.

I spent my teenage years, my physically better years pretending it wasn’t there. I’d cry everytime I caught sight of my scissor pattern staggering in shop windows, because that wasn’t the person I was in my mind’s eye. To me, so long as I cou;dn’t see it, I was the same as everybody else.

Except, now, I know this is the wrong approach. The physical toll has worsened. I live in a body worn to an age about 20 years above my documented age. Now, I live in fear of aging. I will not die any sooner as a result of my condition. But at 60 years old, I will likely feel as most people do physically towards the end of their lives. I will be facing, statistically, another 15-20 years, a gift I’m sure. Except, what does 20 years past the end of life feel like? No-one can know can they? I am terrified.

And that’s not what people want to hear. People want to tell me I’m strong and brave and quite frankly, I’m sick of it. Those are token words, they are not what I feel, not by a long shot. I’m not living this life because I’m strong or brave, or (shudder!) an inspiration. I am living this life because I have a family and dreams to live for. Because to not live this life takes away the pride I feel at belonging to them all. I live this life simply because there are people too important to not be here to love and enjoy.

I suppose the argument I have with myself, rightly or wrongly, is that people hide in these platitudes because they cannot know what it is like to be me. I get that. But please, please don’t be afraid to ask. If I’m having a good day, I’ll say it is what it is, that my husband, my daughter are all the reason I need to be OK with being me. If I’m having a bad day, I will probably cry. I will tell you I’m sick of being constantly sore and I’m too tired to do this anymore.

I realise how awkward it might make you feel. No-one really knows how to fix another do they? And I know I cannot be fixed. I long for it and I will not apologise for it. But I know in my heart that it is not a realistic expectation and am moving to take positive steps in self-acceptance, because I feel this is something I really need in my life when the prospect of living a long life has the power to frighten me so much. I have a lot to live for, but that doesn’t make the act of living any less hard.

So, if I’m in tears, if I can’t do this anymore, please don’t shy away. These limitations can be incredibly lonely. I don’t expect the world to fix me. I just need someone to ask, to wear an empathetic/sympathetic face. You don’t need to tell me I do “so well”. I need you to recognise that this is hard, to tell me that the constant struggles are rubbish and unfair. Everyone understands how hard life can be? How unfair?

Please don’t be afraid to ask. To hear. I will always fight on another day. I have things to fight for.

But sometimes, I just need someone to join me in a beaten heap on the floor, someone to help me get ready for the fight again.

What does it mean to be a grown up?

I am *gulp* 30 this spring.

I have always been someone that thought those 5-10 years older were the coolest and totally had their lives and identities figured out. As it is, I’m not even sure it’s cool to label someone as “cool” anymore. But the point is, when I was 7, I thought 11 year olds were the best. When I was 11, 15 year olds were all I could ever want to be. When I was 21, 25 year olds around me seemed to have picked out their careers, loving partners and beautiful houses. They knew what they were doing.

But as I’ve gotten older, I’ve realised that age is simply that. The wisdom that the older generation informed us came with age is distinctly lacking with my fellow millennials. We’re all frantically paddling underwater, as it were. No-one has a bloody clue.

As far as my own identity goes, that’s always been a bit of a muddle too. I was very forunate to meet my husband at a very young age, to know I’d met someone that so wanted to understand everything I am, to support me in discovering everything I could be. Being with Kev has given me experiences I couldn’t have dreamt of had I not left my hometown. Before the big 30, I have a collection of Very Important Papers – our marriage certificate, Squidge’s birth certificate, the titles to our home and my driving licence. In just those few, I realise I have more than some people ever do.

Equally however, some of those people have something I am still grappling with: self assurance.

I have always wanted to be one of those millennial lifestyle bloggers; you know the type – work hard, play hard, has had a favourite wine picked out since their early 20’s that they can drink by the gallon on a Saturday night, chased up with flaming Sambuccas as they happily get to know a dozen new people in a heaving bar, probably somewhere in London where said wine costs £15 a glass.

I waste so much of my waning energy berating myself for not being that person. Except, what with the journey of self acceptance I am on thanks to the support of the Mental Health team, I have to realise I cannot hope to be who I am not. I have to realise that I am OK.

Admittedly, I feel very out of place sometimes, like I haven’t managed to learn things about myself that other people have by my age. I don’t wear make up for example, because at 29 years old, I physically can’t apply it. I don’t have a signature lip culour or a go to perfume, or a protective face I can paint on to make myself feel safe or beautiful. I am just me.

I can’t style my hair. This one I am looking to tackle because I’d like to look a little different. But I really don’t think I could be bothered to waste time on ever-changing make-up trends when I could in fact be sleeping. Sleep is very important to me, to my abilities and my sanity. My Sleepstar eye mask has been one of the best purchases I’ve made so far this year. No flaming Sambuccas over here!

I think it is safe to say I am not living the life of my peers. I work from home more and more now, to manage my need for sleep and increasing hospital appointments for physical pains and mental struggles. There are no grand plans for travelling or holidays. Instead, there are savings to enable us to renovate our house into our forever home, for us to eventually become a one income family. I feel such a responsibility to contribute to all of these things before I am unable to contribute at all.

To me, being an adult is about having a pension plan, pension contribtions, shoes that don’t make me want to cry in pain. My sense of fun has waned in their favour as my energies and capabilities have left me. But I feel positive, for the first time in a long, long time. The Mental Health courses, in the first instances are allowing me to identify what the struggles are and what strategies are best employed to confront them.

I suppose, being a grown up is accepting that not being like everybody else is a good thing, that uniqueness should be appreciated and celebrated. Knowing that I don’t have to like gin, or avocado, or hot yoga (genuinely do not understand any of these concepts. I do like (cheap, sweet) rosé and sitting around surfing eBay and enjoying terrible 80’s films. (Grease 2 is on in the backgound as I write this and people, I’m not even sorry. It’s so awful that it’s brilliant). That to take advice late is better than taking none at all. (I’ve only just started using skin cream this year and I’ve switched from regular to camomile tea to better manage my anxiety.)

It’s being able to utilise good advice and routines. I recently began using Headspace as a tool to calm me down through guided meditation and breathing exercises. I can’t recommend it enough. It gives me somewhere to go when I need to destress, something I am doing to help myself. And I feel the benefits in my sleep alone.

There is a long way to go on this journey, as there is for all of us. But if there’s one thing we all need, it is hope. Hopefully some kind of aceptance comes along with that eventually, but for now, it feels good to be hopeful. I think I am ready to be a grown up.

Just in time right?

2019 – The Year of Self Care

So we’ve ambled into yet another new year. I won’t insult you with the salutation “Happy New Year” because honestly, I know for a lot of people, it isn’t. We put so much damn pressure on ourselves to make changes, do better, and is it really worth the emotional burden?

This year, I have decided not.

I have made resolutions, don’t get me wrong. With a view to being able to work less (because I ache, so much, so often) I want to make it a habit to save as much as I can, to make smart choices and not be wasteful. But that sentiment doesn’t just apply to money. It’s so absolutely true of energy too. Energy it turns out, is the most precious (read: lacking) of all my resources and I have wasted so much of it (even in years where I was so much less hindered by my physical state) wrangling with myself, being so angry at my failures or inabilities.

But it’s such a waste. To be so constantly exhausted makes me angry. To be so angry and embittered exhausts me. And round it goes. And I have to make the choice to break the cycle.

I have battled with negative self thought all my life. Mostly, I don’t like to be me. And it’s OK to say that. This existence is a battle and I don’t have to be ashamed of that because I’m still here, I haven’t given up. I’m too damn stubborn to give up, even when it feels like I should, just for the rest.

I don’t pretend I can just flick a switch, or that the nasty little voice in my ear will just be gone. It will take work. But I have chosen to accept that negative thoughts will happen, as they do to us all. I just need to be able to balance them with positive ones too. I think I need to hear myself say that I am doing well, to give myself chance to believe it.

And so far this year, I am doing OK. I have arranged play dates, I have spoken with friends and family. I’ve sat and made practical decisions like a portable screen riser so my poor neck doesn’t have to ache quite as much when I’m out of the house writing essays.

I even paid for a lovely hairdresser to come and show me how to do a ponytail. And what’s so daft is that I was so embarrassed to do it. I’m nearly 30, with awkward hands that just don’t know how to do the simplest things with my own hair. But maybe that’s not the fault of the hands. No-one ever showed me, because…. I don’t know, it was too hard? And how can I hope to know what I have never been shown? So I have taken that step. The lovely lady was probably 10 years younger than me, but she didn’t judge me for a second. I did, getting frustrated with myself when my hands wouldn’t follow her simple instructions.

But she saw that in me and was so kind, arranged to come back and show me the next step in short bursts. And I’m fortunate that messy ponytails are in, because that’s what we’ve got. I finally managed some semblance of a ponytail, all by myself, and mixed in with the embarrassment was a tinge of pride I am determined to hold on to. I’m going to push myself and I’m going to learn 1 way, 2 ways, maybe even 3 ways to do my own hair, so that I might look a tiny bit different for the first time in forever, to make me feel good. Why on earth shouldn’t I ask for help in doing that, if it will make me happy?

This will be the year of investing in me, of giving myself a good talking to. So it won’t just be “You didn’t bother to do x, y or z today Jo”, it will be countered with “Yes, but today, I needed to rest/do nothing”. It’s OK to take care. No-one else will do it for me.

And that’s OK too. I like to feel in control, of feeling like I know how to get the best out of this year.

I really hope you do too. I have no doubt that you deserve it.