The Last Steps I Ever Took

Hey, guys! I feel as if it’s finally time this week to own up to a weight that I’ve been carrying around with me for a long while: sometimes I blame myself for not being able to walk anymore. I’ve written this post numerous times over the past few months – sometimes blinded with fury, sometimes with tears dripping from my eyes – but I feel like I’m now brave enough to share with a clear heart and mind. And writing it all down is usually my last step in accepting and letting go.

Pictures of me when I used to be able to walk. I was so sassy and such a poser! 😂

I came to the shocking realisation yesterday that I’ve never had a dream where I’ve been in a wheelchair. If you know me, you know that I have very vivid dreams and that I dream every night. Yet still, I’m always walking in my dreams. I spent the majority of my life being able to walk and I think that it must take longer for your brain and subconscious to come to terms with these sorts of things. I became a permanent wheelchair-user when I was thirteen. That same year I used to have a recurring dream that I was running through a field and that I was extremely happy. While I was asleep, I would always wonder why running through the field made me so happy. Then I’d wake up and it would hit me.

Me before my fingers became permanently curled and my wrists went limp. I was practically non-disabled at this age.

I’ve talked before about how scary progressive disabilities like mine can be, but losing the ability to walk wasn’t like the other abilities I’ve lost over the years. It wasn’t like when I woke up one morning to discover I had suddenly lost all motion in my right hand – it was a gradual process. A battle. A warfare. One that I ended up losing:

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The Process of Losing The Ability to Walk

A picture of me on a trip when I was eight. You can see my wheelchair in the background. We mostly carried it around as an extra to give me a break sometimes. 

The doctors told me I would have to be in a wheelchair permanently at age six but I was always good at ignoring them and ended up walking for many more years than they predicted. When I was eight, I received my first wheelchair, “for when you get tired” they told me. I was a child and it was fun, so of course I used it much more than I needed to. I would sit in it whenever possible and do wheelies and tricks in my mother’s classroom before school. Walking wasn’t an issue yet, so in the beginning, I mostly viewed my wheelchair as a toy I sometimes played in.

I used to fall occasionally when I walked because my walking wasn’t perfect. I was used to it though and made little fuss about getting back up afterwards. I’d been taught the correct way to fall without injuring myself and how to safely get back up again.

Me at my school in the electric wheelchair I was required to stay in while I was on school grounds

Then I graduated Primary School and the Secondary School I went to was scared of me walking so they said I had to stay in the wheelchair permanently while I was there. I’d get told off if I left the chair, even though I was fine without it. The thought of me getting hurt frightened them. I’d been able to deal with walking all of my life and was confident in my ability to do so. I knew I could handle everything else that came with it. But there was no element of trust between me and the disability specialist at school and they weren’t willing to take that chance.

I’d never been forced to stay in the wheelchair for so long before. According to Wikipedia: Patients with CMT (an umbrella term which my condition fits under) should avoid periods of prolonged immobility, such as sitting in a wheelchair for a long time, because it can drastically accelerate symptoms of CMT. Obviously, everything started to happen much faster after I had to spend all day sitting in my wheelchair at school. Losing the right to walk during the day meant that I had much less practise with it and was a big contributing factor. It angers me that the disability specialists at school took that practise away from me.

Things got even worse when I went to a doctor’s appointment one day and the doctor told me that it was dangerous for me to walk. I burst out crying in their office after hearing this. Up until then, I’d gotten used to ignoring doctors when they said I shouldn’t be able to walk. This time though – I started to believe them. I began walking less and less at home because I was irrationally afraid of slipping (even though that never used to be a problem before). The combination of not being able to walk at school and walking less at home was a dangerous one. I’ll never forget thinking to myself one day: “You know what? I don’t really need to walk anyway. I have my wheelchair.” And that was it. For the first time ever, I pulled my punches. I gave up.

The Last Steps I Ever Took

The carpeted floor at my church

I clearly remember the last day that I ever walked because it was Halloween. Instead of celebrating Halloween, my church celebrates something called a Light Evening. I was at the church reluctantly helping out by setting up games for the children when I’d really rather have been at home. At that point, I already hadn’t walked for weeks and presumed that I had lost the ability. But that day I suddenly realised I was able to walk if I leant on my wheelchair and pushed it along like a walker. It was because the church had a carpeted floor. This was the solution I’d been searching for: I could walk on carpet! Carpet also meant my irrational fear of slipping would disappear.

I remember feeling so full of hope and happiness that day. I was already missing the ability to walk and didn’t feel ready to let it go just yet. I immediately told my family members and we discussed possibly changing the floors at home to be carpeted. I had dreams of forcing myself to practise my walking every day at home so that I could build the muscles back up again. I could do it. I could hold on and fight a little harder. I didn’t have to lose yet another function.

A picture of my wheelchair in an empty room

And that was it. There was no follow-up. I never explored the idea further or anything, and after a few days, I had forgotten it had even happened. True to the nature of my disability, the continued inactivity caused the muscles in my legs to further deteriorate and curl in on themselves. Soon, it became impossible for them to straighten out so that I could use them to walk.

I feel like I should have held on tighter. Fought harder. Ignored the doctors and kept walking without being afraid. Pushed back more against the school for banning me from walking when I had every right to. For years I’ve blamed myself. I never believed anyone when they told me it was a progressive disease and I was bound to lose the ability eventually. That’s what the doctors were always saying and they were wrong before. It was because I gave up.

Forgiving Myself

But now I’ve won the biggest battle I’ve ever had to face: accepting myself and my disability. Letting go of the past. Starting to realise that I was only twelve when most of this happened, I wasn’t perfect, and it wasn’t all entirely my fault. I finally love myself despite suffering from depression numerous times and telling myself every day: “you’re a waste of space.” And this time I didn’t pull my punches. I won. Even though it was one of the toughest things I’ve ever had to do. Despite all of this, I’m still just a teenager and I still have my entire life ahead of me.

Me having fun at a wedding with my family

It hurts to think that I could’ve ended up walking for much longer if everything hadn’t happened as it had. But I still wouldn’t change who I am now. I’m strong and I’m fighting every day to make a difference. The battle for myself is over, but my battle for the disabled community has just begun. In two days, I’m going to be speaking at a school again to educate their young students about disabilities. And next week I plan on sending a few emails to some pretty important people. Hopefully one of them will reach out in return and help me to start making a change. Thank you so much everyone for joining me on this new journey.

To read more about my story and the gradual progression of my disability, check out Learning to Write With a Pen in My Mouth and my My Journey Series. Thanks so much for reading ❤ I might not post next week because I’m taking a few days off to visit the school to perform the educational talks, get vaccinated, and hang out with a friend. But I’ll still be active on WordPress to read and comment on all of your wonderful blogs. See you later!  

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Research Citation: (“Charcot–Marie–Tooth disease” Wikipedia, accessed June 9, 2021, https://en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease#Management)

175 thoughts on “The Last Steps I Ever Took

  1. Hey! Your story is truly inspirational.
    Its good to see you realised that how much strength you have.
    Dont focus on what you have lost, just focus on what you have.
    There are people out there that being healthy aren’t doing anything at all and then blame themselves for their unfair life.

    Wanting something to be healthy and well being is different than wanting something to do something good out of your better health.

    I know you know that now. I won’t deny that It must be hard for you at start that makes you feel dishearten sometimes, but you have that realisation about the purpose of life, that most of us don’t have.

    Liked by 4 people

    1. I’m so honoured that you thought my story was inspirational! That’s really great advice – it’s also what I try to live by. If we focus more on what we’ve lost in life, we’ll never be able to appreciate all of the strong, valuable parts of ourselves that we still have. I’m glad you understand that. I do know that now – that’s why I tell people that I’m still perfectly healthy in all of the ways that matter. Thank you so much Ritish for these incredibly wise and encouraging words. I can’t thank you enough for your support and touching words of truth. I hope that you’ll have a really amazing day today ❤😊❤

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  2. I am so sorry for coming to this post a bit late, I must have skipped over the email that notifies me of your new posts. Wow, this was really interesting to read. I am angry at the school for forcing to you stay in your wheelchair. I liked seeing the pictures of what you looked like when you were younger, the one with you and your family at a wedding is really nice, you and the family person smiling next to you, look both very happy. Yay for an orange dress! I hope your talk at the school went well. Sending you lots of love and hugs!

    Liked by 5 people

    1. No worries! 😊 I’m glad that you found this to be interesting to read – I think it’s one of my favourite posts that I’ve ever written since it felt so freeing to write. I liked those pictures too – thank you 😊 The family person smiling next to me is my father. We were both very happy that day because it was a really fun wedding. I’m glad you liked that dress! My talk at the school did go really well. The children reacted very well to my presentation and even some of the teachers learned something new about disabilities too. Thank you so much for such a kind comment. Sending you lots of love and hugs too! ❤😊❤

      Liked by 1 person

    1. I’m honoured that you’ve been thinking of me – I’ve been thinking of you too. I hope that you’re doing well too. Luckily, the flooding happened in a different area to where we were. And we were also in London for the holidays to help my older sister move in because she just got a job there. Anyway, I know it’s been a while but I’m finally returning to blogging! Thank you so much for caring enough to make sure that I was okay. I’ve missed you, your kind words, and reading your great posts. ❤❤❤

      Liked by 1 person

      1. Dear Simone, you are so very kind and loving. It is great to see you back. Yes, I know it is hard to write blog posts when you have so much going on in your life. I haven’t been writing many new posts either, these past few months, for the same reason. God bless you. Sending hugs and love. ❤

        Liked by 1 person

  3. Hi, Simone, this is such a brave post. Self forgiveness is never easy, especially when it comes to something like this. I am quite impressed by your willingness to forgive and move on. It sounds to me like your speaking up for others is your purpose in the grand scheme of things, so thank goodness you experienced exactly what you did! Hope you’re having a nice break, my friend! 🌞

    Liked by 3 people

    1. I’m glad that you thought that it was brave to share this – it was one of the hardest posts I’ve ever had to write. True, self-forgiveness is never easy. It takes hard work, time, and effort – but everyone owes it to themselves to at least try and award themselves with it if they’ve been blaming themselves for something for a long while. I agree that speaking up for others is my purpose, so it adds purpose to my pain: sharing about it here helps to raise awareness and make a difference. I had a great break but all great things have to come to an end – and it’s over now 😊

      Liked by 1 person

    1. I’m very happy that I was able to forgive myself too – the guilty weight was weighing down heavily on my shoulders and causing me a lot of emotional stress and pain. Thank you so much for calling me strong and a beautiful soul. Your words are very touching and moving ❤ Thanks also for the well-wishing – I wish you the best in everything you do too 💚🌻💚

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    1. I understand – I was also quite upset at the school at the time. I don’t think that they treated me very well. Reaching out to others to raise further awareness is going well! Recently, I’ve been able to spread my message of equality for all disabled people to an even larger audience thanks to them 😊

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  4. Hello there!
    I sent you an email, two days a go to be precise. Just letting you know about the email, in case you didn’t check it. If you have already read my mail, then please ignore this message! 😉💜

    Liked by 3 people

  5. I’m not sure how I missed post either, Simone. I searched for your blog just now, as I hadn’t seen any posts recently from you. Hope all’s okay with you.
    You’ve come on a difficult journey and you’ve reached an acceptance. Forgiving oneself is difficult, and you’ve nailed it! Plus you have so many other talents. Talking to others is admirable and a great service to everyone who’s differently-abled. Nobody can speak out enough about CMT (and related disorders) – ‘the most common neurological disorder nobody’s ever heard of’ – I know, I’ve lived with a relatively mild version all my life. I’ve found accepting it and, even more so, talking about it, really, really hard. Well done you!

    Liked by 4 people

    1. Everything is okay 😊 I was just taking an extra months break after the holiday was over to make some urgent changes to my blog like replacing all copy-righted images and adding descriptive captions to every picture on my site to make it more accessible for blind readers who use screen-readers. As a disability blogger myself – I made changing my blog so that it was more accessible my top priority. Forgiving oneself is difficult – but we all deserve a chance to do so. It certainly made the emotional weight that I’d been carrying around much lighter. I didn’t know that you also had CMT – I haven’t spoken to hardly anyone who has the condition before. I understand that you’ve found accepting it and talking about it hard – I know it doesn’t look like it, but I did at first too. Thank you so much for sharing that with me.

      Liked by 1 person

      1. How good to hear from you, Simone! The proper labelling of images is something I should address too! I must also seek out those books which you recommended to me. Very few people know that I have CMT, but since it is so little known, I wanted you to know.
        I look forward to hearing more from you soon. 🙂

        Liked by 1 person

  6. Hi Simone,
    Long time and hope you are well.
    Thank you for sharing your journey.
    Reading this account leaves me feeling so sad that ‘experts’ always think they know best and health & safety laws are designed to protect the organisation and not the individual. Lip service is often paid to needs led duty of care.
    Thank God you have been able to reconcile yourself to mistakes made by others. ❤️🙏

    Liked by 6 people

    1. Hello Margaret 😊 It has been a long time – I was taking a months break from my blog to make some major changes to my site so that it would be more accessible for disabled users. As a disability blogger myself – I took making these changes very seriously. It feels good to be back though 🥰 Thank you for asking – I am very well. I hope that you are too. You’re welcome, thanks for lending an ear while I shared my journey. I agree that it can be frustrating and sad to see experts who think they always know best and health services that may not always be that caring. I am very thankful for that too. Thank you so much for these kind and thoughful words. I hope that you’ll have a lovely week 💚🌻💚

      Liked by 1 person

      1. Great to see you back again and good for you to be able to help other disabled bloggers 🙂
        Glad you are well. I am well, apart from temporary minor health issues which I am dealing with.
        As well as treatment, rest has been recommended.
        A wake up call and time to reset.
        I hope you have a good week also ❤️🙂🌸

        Liked by 1 person

  7. Dear Simone, you are absolutely awesome in every way for sharing such an intimate heartbreaking yet powerful story with us. Doctors make mistakes, we make mistakes… the only solution is to keep sharing our stories & sharing immense strength like yours.
    btw, just finished amazing story of Nujeen Mustafa. do you know of her? she fled war in Syria in a wheelchair, to Germany. here’s just one of several videos on her: https://www.youtube.com/watch?v=7rK6qzwwOi0

    Liked by 1 person

    1. da-AL, I can’t thank you enough for this very kind message. I am delighted that you found my story to be powerful – it took a lot of courage to be able to tell. True – it’s essential that we keep sharing our stories and strength so that we can each make a difference no matter how many mistakes people or doctors may make. No, I’d never heard of Nujeen Mustafa before but I watched the video that you shared. Thank you so much for sharing it. Her story is incredible, I’m surprised that I’ve never heard of her before.

      Liked by 1 person

      1. I try to remember how, some years ago when my husband & I were taking flamenco dance lessons & had to perform with our class, I was so very nervous. then when I was on stage dancing, I looked up & saw many in the audience talking, texting, etc — & I realized that rather than worry about being looked at, we should feel lucky we’re looked at to begin with. Anyone who doesn’t look at you, my dear, is missing out ❤

        Liked by 1 person

      2. What a beautiful sentiment. That’s a very wise lesson that you learnt. Indeed, it’s so rare when we’re truly able to share our talents with the world. Your lucky to have a very wide platform that you are able to share yours with ❤

        Liked by 1 person

  8. This really hit home. Thank you for sharing such a personal part of your story. I’ve struggled with forgiving myself for things I’ve done in the past, and things I didn’t do, and am still walking that journey now. Very different to your journey, as each person’s journey is different, but I see through your story the hope that lies at the end of a particular road to forgiving myself. I see it’s not a ‘one and done’ thing, but a process of learning to be who we are and loving ourselves for who we are.

    Thank you again so much for sharing, and encouraging through your writing.

    Liked by 2 people

    1. I’m sorry that you’re still struggling with forgiving yourself. You’re right – it’s not a one and done thing, it took a lot of effort, emotional weight, and self-reflection. Sometimes it’s something I still need to work at – that’s why it’s a journey. I hope that you’ll eventually be able to find your own hope at the end of your road and that you’ll be able to move on and forgive yourself. I’ll be thinking about you and praying that it all works out for you ❤

      Liked by 1 person

  9. Thank you for sharing. When we learn to accept what comes our way, changing them if we can and accepting if we cannot and doing our best to help ourselves, life becomes easier. My son has Retinitis Pigmentosa from birth. He completed his PhD in English literature in 2016 and is assistant professor in the department of languages in our university. I wish you all the best.

    Liked by 1 person

    1. You’re welcome – thank you for lending an ear as I shared my story. I agree, life becomes easier when we can tell the difference between the things that we can’t change and the things that we can. I’m happy that your son has a PhD and is an assistant professor. You must be very proud of him 😊

      Liked by 1 person

    1. I’ll explain further later but I found out that a lot of my old posts weren’t very accessible to certain disabled users and I thought it was very important to spend some time changing and updating all of them to be as accessible as possible before I posted anything new. As a disability blogger myself – I took changing my site to make it as accessible as possible very seriously. All is well though and I’m finally finished with all of the changes! So I’m returning to posting this Saturday.

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  10. Bonjour ou bonsoir la douceur de vivre
    C’est un café avec une amie, un ami un baiser volé, un message inattendu
    C’est le regard amical d’un passant.
    C’est répondre au téléphone et entendre avec surprise la voix de ceux que nous aimons
    C’est une bouffée d’air frais après une journée enfermée dans une pièce.
    C’est un sourire
    C’est une promenade au soleil après des semaines de pluie
    C’est le sourire d’un enfant.
    C’est notre chanson préférée à la radio
    C’est la pleine lune.
    C’est un câlin affectueux
    Bon week end vous tous profitez bien je vous offre un petit déjeuner

    Liked by 1 person

    1. Sorry, I think this may have shown up on my site as spam for some reason. This is very kind, thank you 😊 It’s also a beautifully-written and incredibly true poem. Happiness comes in all different sorts of shapes and sizes – especially in the little things like smiles and walks in the sun, like you mentioned. And thank you so much for the breakfast. I wish you a very happy weekend 🥰

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  11. Bonjour;vous êtes comme ma fille chérie qui hélas ne sortira pas de ce cancer qui la suit depuis 6 ans;hospitalisée depuis 3 semaine elle est épuisée; deux fois opérée de tumeurs au cerveau;;;; en un mot vous êtes une BATTANTE comme ma fille mais hélas …Une ultime opération l’a soulagerai de ses douleurs mais elle seule doit décider car malgré cela l’issue fatale sera la même; continuez à être une battante; de gros bisous d’une maman éplorée

    Liked by 1 person

    1. This comment is amazing and means so much to me. Both you and your daughter must be incredible and so brave – so for you to say that I remind you of her means so much. She is indeed a fighter – you must be very proud of how much she managed to overcome. I wish you all the best – you are an extraordinary woman.

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