The Only One Who Sees Me

This heat with a 2.5 year old who’s very emotional and trying to establish (read: push) her boundaries has been so tough. I have been in tears, I have shouted and I have hated myself as a result. I never wanted to be that mum.

Not able to lift her and soothe her during a crying fit in our narrow hallway the other day, I shouted, turned away and cried so hard I couldn’t catch my breath.

Squidge’s tantrum stopped dead and she crept back in, frowning with concern before she came and placed her baby’s bottle in my mouth because she knows, when babies cry, they need milk. My beautiful girl dried my tears.

Yesterday, we were planning to travel across the neighbouring city on the bus to see a friend and her girls. So looking forward to it. A big ask, but it felt like it was doable with Squidge mobile and the walker. People would know I was disabled, no worries about putting the pram down.

Except, walking with Squidge sat on the walker, every journey is twice as long because the wheels get caught between paving slabs, because the anti-tilt means I have to turn the walker round to pull her safely up and down kerbs. For an aid that’s meant to help me, I have to pre-empt everything. It gets tiring.

I had to coax her off the walker onto the bus so I could lift it up. She went to find a seat but I took so long sorting out my ticket that she came running back, crying for me not to leave her. I had to promise to finish my purchase at the other end of the journey and went to park the walker in the space. A kind lady took Squidge into her lap as I struggled, because the bus had already moved away. I’d planned to sit on the walker facing Squidge but my balance on it was so precarious, the kind lady insisted I take a seat, holding out her hand to me.

“You shouldn’t have to struggle like that my love” called out another lady. “That’s what the disabled seats are for.”

She pointedly looked at a lady in said seats with a shopping trolley who muttered “If she wants it, she can have it.”

I didn’t say anything. After all, I didn’t know the lady’s circumstances but it was quite hurtful not to be addressed directly. It just makes me feel like people are too embarrassed to recognise me.

The second lady, having watched me struggle to sort my ticket, asked if I shouldn’t get a concessionary bus pass. I told her the truth: “I was allowed one in England but the rules in Wales say not because I can walk.”

“That’s disgraceful.”

The first lady chatted with Squidge and I all the way until her stop. I wish it could have carried on that way.

But to the busy city crowds, Squidge and I were instantly invisible. She wanted to walk with me after so long sitting on the bus so well. I walked her not 50 feet into the bakery to get a drink. People leant round me and the walker to grab things as I talked Squidge through the options in the fridges and when we were waiting for someone to step back and let us leave, at least half a dozen people walked through the door with no thought to the fact the walker or indeed, the toddler might need a bit of room to vacate.

“Oh for God’s sake!” I fumed quietly.

“No Mummy!” Squidge reproached sternly. “No say that!”

I smiled. “Sorry baby, you’re right.”

Then a group of schoolkids came racing across the pelican crossing that I was trying to judge as flat enough to roll Squidge across in the walker. They were coming right at us but I thought “They can see me, they won’t run at a walker.”

I was wrong. They swarmed me, Squidge and the walker and I felt myself tense in preparation for a fall. It didn’t come but my nerves were so on edge in these crowds with uneven pavements that I screamed angrily after them, with no effect obviously: “Yeah, don’t worry about me.”

We waited for the green man as the city crowds ignored his absence and ran across the road anyway. When it was time, we went across the road to the stopping point in the middle, except the walker hit the lip unable to push up. Crowds kept coming as I felt the walker tilt and began to panic. To stabilise, I knew I needed to turn it round to wheel Squidge up safely. I tried to do it as quickly as her safety would allow but the crowds just kept coming over the crossing. No-one cared to see us there struggling.

I finally managed it, my stress increasing when the same happened again. Why could no-one see me?I felt the walker lurch again and cried out in panic: “Oh God, are you OK baby?”

Finally, without a word, a man reached down and lifted the walker over for me onto solid ground.

“Thank you.” I said. “You’re the first person that’s bothered to see me here today.”

How could so many people be so wilfully ignorant to someone with a mobility aid, with a child struggling? I could never do it, even though I’d be little help. I’d have to try.

The simplest things were beginning to feel too hard and behind my sunglasses, I began to cry. The city was busy and loud so I didn’t bother trying to muffle the sound, half wishing someone might slow down and ask me if I was OK or needed help. Nobody around me did.

Instead, my beautiful girl said: “Don’t cry Mummy.” Oh, how I loved her then.

“I’m so sorry baby. I’m sorry it’s this hard.”

I tried to coax her onto the next bus to our friend’s.

“No” said Squidge.

I was stressed, so terrified she was about to throw herself down in the street for an emotional tantrum.

“Please darlin’.” I pleaded. “I can’t lift you with the walker.”

But she didn’t tantrum at all. “My no want to go on bus.” she said calmly.

What was the point trying to force her? It just doubled the journey and effort of trying to get her home safely when I’d be in pain from the effort. I think she knew that.

“I go home and see my daddy.”

“OK baby. Shall we go get an ice cream from Maccy’s first for Mummy’s superstar?”She walked all the way until she recognised the Golden Arches. I text Kev, telling him how defeated and tearful I was that I was so invisible here, that I was ashamed I had let my friend down.

(I shared the same sentiments when I apologised to my friend. She promptly told me I shouldn’t dare to feel ashamed for trying as hard as I had. I love her for that.)

I also told Kev that Squidge had been such a comfort, I would buy her another ice cream if she wanted. I took her into the disabled toilet to get changed.

Hot, beaten and emotional, when she sat up, I asked: “Can I have a hug?”

She gave me the sweetest tightest cuddle yet.

“I got you Mummy.”

I broke down crying in my toddler’s arms.

“I’m so glad you do, baby.”

She was only coaxed onto the bus home by promise of seeing her daddy again.

She was exhausted, meaning the decision not to carry on our journey across the city was the right one.So sweet right? Except I was full of dread. I couldn’t carry her from the bus and the walker. I’d fall. I needed her to walk off the bus. So I had to lift her into my lap and rock her awake, cradling her head against injury thanks to the erratic braking of the bus and throwing us forward.

And today, my shoulders and wrists hurt so much from the effort of having to lift the walker up over every uneven paving slab out there that Squidge even attempted to lift it for me.

I cannot describe how sad I am to live in a world where only my 2 year old daughter cares to notice how hard it is becoming for me to get through every day. It’s so bloody shameful.

But I could not be prouder of you baby girl. Thank you for seeing me when the world ignored me. I’m so glad to have you. I know now more than ever I couldn’t do it without you.

Mummy’s medicine

Pain is a huge part of ageing with cerebral palsy. Whilst its omnipresence is unavoidable, the levels of pain I wake up with every day are unpredictable and draining.

The impact on my emotional wellbeing is getting larger every day.

Yesterday I woke up with very painful tension in my neck and shoulders. Movement was too hard and I was reduced to slumping on the sofa.

Kev climbed in behind me and began to massage the tension. I cried out in pain.

When she was younger and Squidge’s saw that, she pushed Kev away, shouting “No Daddy!”

Yesterday however, Squidge saw and heard my pain and climbed into my lap. She wrapped her arms around my neck. “Ohhh!” she sang empathetically.

But I struggled to hold her as Kev continued apply the necessary pressure to my stubborn muscles.

“Oww!” I whimpered, unable to hold it in.

Squidge pressed her hand tenderly to my face, stroking my cheek as she asked: “You OK Mummy?”

My heart swelled as she worked so gently to distract and soothe me. I didn’t want her to think that her daddy was hurting me so encouraged her to climb into Kev’s lap and feel the tension for herself.

She knew what the solid lump was as soon as Kev helped her feel it with her little hands. “Mummy ow!”

“Yes baby. And Daddy is helping take the ow away for Mummy. It is Mummy’s medicine but Mummy is not very brave, so Mummy say ow.”

“Do you want to help Daddy give Mummy her medicine?”

“Yes.” she said, hands poised in the same position as Kev’s and bless her, she started pushing gently on the lumps.

Kev’s pressure increased, needing to use his elbows. So Squidge climbed down.

“Ow!” I cried out loudly.

But Squidge frowned, telling me sternly: “No Mummy. No ow. Mummy’s medicine not ow.”

We laughed together. Our wonderful girl had listened so well. She knows that medicines exist to make us better. Therefore, we have already taught her it is useless to give into pain.

I like that. Our parenting means thst she already knows that pain is there to be pushed through.

We’re not going to be defeated. Mummy must take her medicine.

I really needed that

This is the walker. Squidge loves it but there are versions of me that despise the fact I need to use it at all.

Today was not a day when that fight needed to matter. I had slept horribly on my shoulder and every movement hurt. Today I needed its help.

I dropped Squidge off at playgroup and was already in tears from the pain. I felt so lost and overwhelmed.

And then, walking through town, an elderly couple approached me, joking about not texting in charge of a vehicle.

The lady asked me outright what I needed it for, curious, not accusatory. It felt strange. But her kindness allowed me to a bit more honest.

“My balance is shot.”

This lovely stranger squeezed my hand and said “Good for you. You’re doing the right thing then.”

I really needed to hear that. For once, there was no judgement, no eyeing me up as a fraud because you can’t see my pain.

I went on to my massage. The therapist was so kind and understanding. She knew of cerebral palsy, was unsurprised when I mentioned my muscle tension, or the need to have a bit longer to get undressed. She even offered to help. And I didn’t allow myself to feel patronised. I felt supported.

She worked tirelessly on my muscles and tension. I felt the pain subside, the muscles loosen. By the time I collected Squidge from playgroup I felt human enough to agree to a play in the park.

After the emotional turmoil of constant pain and stress these last few weeks, it was nothing short of miraculous. I’m allowed to be important too. I think I really needed to be told that today.

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”

It Doesn’t Have to be a Nightmare

So I thought that first fall was my worst nightmare come true. I never counted on feeling worse than that, even though I know it was unavoidable that it would happen again.

On Thursday night, Kev went for a run whilst I agreed to bath Squidge alone. I wrapped her in her towel and lifted her into my arms, doing well so far. I tried to pick my steps back into the lounge carefully, she is precious cargo after all. But I kicked one of her boots that I’d stupidly left on the floor and we keeled over together. I wanted to throw her away from me, but the only direction she could land in the split second that we fell together was towards our glass coffee table and I just couldn’t make myself let her go. So in that instant decision, I had no choice but to land on her. I moved off as quickly as I could, but understandably she cried.

The guilt coursed through me and I cried too, checking her over again and again, even when she’d stopped crying as soon as I’d adminstered ‘magic kisses’ to where she said her arm hurt. But oh, I felt like a monster, a careless monster. After all, I should have known to pack her shoes away before undertaking bath time by myself. I called Kev in an instinctive panic and he came home as quickly as he could. The rest of the evening passed just as normal, though I’ll admit I did have a glass of wine for medicinal purposes!

The next day, playing on the floor with Squidge, she playfully pushed me back on the rug, wanting to climb and lie on me and play. That’s usually a good way for us to play together, because there’s nowhere else to go if you’re already on the floor, it’s pretty safe. But this time, I fell back on her big toy drum with quite some force and I cried out in pain when it dug into the tense muscles of my shoulder.

Squidge stopped dead, frowning in concern and confusion as Kev moved to help me get up.

“Mummy ow.” I explained when I was sat down safely.

“Mummy ow the drum.” she replied.

About half an hour later, she threw herself down on the floor, striking her back on the drum in the same fashion I did, looking over at me as she shouted: “Immy ow!”

In that second, I was heartbroken, realising she was imitating my fall, repeating my pain as if it was a normal aspect of the life we live together. In the next second, I was impressed that she had understood the whole incident. After all, imitative play is how children develop an understanding of their world and whether I’m comfortable with it or not, falls and pain are a regular and undeniable part of our life.

I got down on the floor and said gently: “Oh darlin’, Immy doesn’t have to ow. Mummy ow cos Mummy fell over.”

“Immy and Mummy fell over.”

Then I realised she was connecting the two incidents, as if it was she thought she had to fall because I did, because we’d fallen together the previous night. Again, heartbreaking. After all, I am her mum. I am alive to be her greatest protector and yet from my arms, she had felt pain, however fleetingly. I felt so guilty, although given how much I worried about this exact incident when she was a tiny wriggly newborn, I suppose there was a need to be proud that it had taken me over 2 years to get to the dreaded moment.

But still, it showed how clued in she is. That made me very proud too. She shows such a great level of understanding and empathy.

“We did fall over darlin’, but only because Mummy has tired legs. Immy has clever legs, you don’t need to fall.”

I showed her where on my body I had hurt myself on the drum, let her feel the tight tenderness in my shoulder.

“I don’t want you to ow like Mummy, when you have clever legs!”

“Clever legs!”

“And what does Mummy have?”

“Tired legs.”

I think this is the start of explaining Mummy’s differences. In the simplest terms I can. And so far, my beautiful Squidge’s head and heart are keeping up. I really hope this won’t be so bad after all.

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.

Did I make you uncomfortable?

I’ve written before about earning the nickname of The Part Time Part Timer at work.

I made a flexible working request with my boss, who was brilliant and let me work from home as much as I deemed necessary without another word, so long as I was taking good care of my body and managing my pain.

It means I’ve been out of the office a lot more, seeing a lot less of even my colleagues on the field.

My boss tells me I should care about me and not what anyone else thinks of me, because my life is no-one’s business. He’s right of course, but I’m a born worrier.

I decided to try and take control of how rubbish the ill-informed jest made me feel. I know no harm is meant but that still doesn’t give such words the right to make me feel so bad.

So I decided to be honest. To share the details that would otherwise be missing from colleagues understanding about my absences from the office.

Someone asked me for some paperwork I hadn’t seen. I couldn’t find what they asked for. They said it was time sensitive and asked “Do you mind if I have a look? You might not have seen it…”

I moved back and started to say: “Of course not!” when they finished “…because you’re never here.”

My defense tightened in my chest. I knew they meant it in a light-hearted way but enough. I had the right to speak a truth they might not be aware of.

“Actually, I’ve had to work from home a lot more because I’m finding I’m in more and more pain.”

But they were talking again before I’d even finished the sentence.

“Oh, I shouldn’t have said that.”

That told me they weren’t really listening, batting my words away.

And why would they do that? I can only surmise it’s because the truth made them uncomfortable. I wonder if I’m supposed to feel apologetic. Because I don’t. My life, its ever increasing limitations make me uncomfortable every damn day. It’s only right to let that be the truth. I have to deal with it, it’s not my problem if others cannot.