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.
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.
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
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.
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
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.
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.
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)
The Wheelchair Teen 
Oh, Simone… I am angry that the school would not allow you to walk. It is good that you are sharing this story now. Hopefully it will make a difference in the way other children are treated.
As always, you are amazing and inspiring. Beautiful Simone! ❤
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Thank you so much, Linda. It felt good to finally be able to share about this after all this time. I think that things are a bit better at the school I used to go to now. I don’t know if they have the same disability specialists working for them, but I know that they have a new diversity group at the Secondary School and they even invited me back to give advice on how they could improve which was good. Your words of encouragement always make me feel better ❤ Thank you so much for lending an ear and listening to my story, it really means a lot.
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Sending big ((HUGS)) ❤
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Oh man… I got so sad reading this post… I am glad you are not living with the guilt anymore and looking forward to your bright future. Oh, if only the stupid school allowed you to walk, the doctors were more optimistic and you had more courage!
Everyone adapts to changes, and it is really good you are comfortable with your wheelchair. You are doing great, Simone!
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Thank you. I agree – everyone adapts to change, and that’s why I eventually had to do. It’s not an easy process and it took many years to come to terms with what happened but I eventually made it and now I’m also happy that I have. Yes, there are a lot of ‘what ifs’. It’s tough to think about what could’ve been. But the good thing is what is happening right now, and you’re right, I still have a bright future ahead 😊 Thank you so much for listening to my story and sharing your thoughts, it means more than you could know ❤
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Welcome!!😊 Yes you did made it, probably more than you could ever had! If it weren’t for those circumstances you would not have been so emotionally advanced.
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That’s true, I guess I’ve never seen it that way before 😊
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Simone…I agree…the school was wrong (maybe afraid of a lawsuit). We all make wrong choices out of fear. The trick is to overcome the fears (not an easy thing to do). It is not easy to look ahead and not behind, either. That is why I like the Bible story of Lot’s wife…she often reminds me to not look back. What is done, is done. I can’t do anything about that, but I can look ahead with a new attitude. You have much to offer this world, and I am loving watching your growth and your courage to share your journey. You have already made a difference and there is more to come! You do have purpose! Keep shining and dancing! 🙂
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Yes, I think that desicion was made out of fear. The school banned me from a lot: they said that I couldn’t join drama club because they were scared I would get upset if I wasn’t able to join in with all of the activities even though it had never happened before, I wasn’t able to use any of the lifts without an escort which greatly restricted my freedom, etc. They just tried to put out a lot of fires before they had even started. I like the Bible story of Lot’s wife too. Even if it takes all of our strength, we must focus on looking ahead rather than behind. It’s truly touching that you’ve loved watching my growth as I share my story. Readers like you are definitely a part of what makes everything I’m going through worth it. Thank you so much! Keep quilting and sharing your positivity and love with all of your readers! ❤🌷❤
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It really is terrible the school wouldn’t let you walk!! I guess doing so would have been a liability for them on the off chance you would’ve fallen & gotten hurt, but still… ggggrrrr!!
I’m so glad you have forgiven yourself. You have no reason to feel guilty! You were just a little girl when things happened that were out of your control!
Thank you for all that you share & do. You’re wise well beyond your years & have such a good, loving heart! ❤
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It is quite frustrating – all it would’ve taken is a little trust to allow me to walk. After all, it hadn’t been a problem at all in Primary School when I was even younger. Thank you, that means a lot and I’ve come to realise over the past few months that you’re right: I shouldn’t feel guilty. Most of these things were simply out of my control. Forgiveness for this is one of the best gifts that I can give to myself. You’re welcome, I’m very happy that you read and enjoyed learning a bit more about my story. Thank you so much, a loving heart is a wonderful thing to have. And I know that you have one too ❤❤❤
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I’m sure it’s very frustrating. It’s just wrong.
These things were truly out of your control. I’m glad you’re forgiving yourself because there’s really no reason for you to feel badly!
A loving heart really is a wonderful thing!
Aww… thank you! ❤❤
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I think as you get older you will learn not to be so hard on yourself. You can’t change the past. From what I can see, you are a strong young woman. Thank you for sharing this sad and wonderful post with us.
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True, I can’t change the past. I hope that what you say is right and in the future it will be easier not to blame myself for everything. Thank you so much for calling me a strong, young woman. Your support and kind words have moved me deeply. I feel extremely grateful for them ❤ You’re welcome, thank you for listening to my story ❤🌷❤
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Simone, your vulnerability about your journey is so inspiring. You are such a beautiful soul and your authenticity is an honor to read. Thank you for sharing more of your journey with us 🙏🏻. Dreams fascinate me too, I dream almost every night…so that’s incredibly neat that you still see yourself walking in your dreams. The outside world and how they treated you is so unfair and infuriating but, all happens for a reason even if we don’t know those reasons yet. You are so strong and fearless. I know self-forgiveness is really tricky, but you are doing it! I am so so proud of you!! Keep being beautifully YOU and let that electric spirit shine on!
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Ace, each of your comments always warms my soul. Your words mean a lot to me and your support is very dear to my heart. I’m happy that you dream every night too – it truly can be such an amazing thing to do. When I dream, it’s like I’m walking and running all over again. True, I believe that everything happens for a reason too, even if it’s not all made clear to us instantly. Thank you so much for calling me a beautiful soul, strong, and fearless. You can’t know how much that means to me ❤❤❤ I truly appreciate you my amazing friend.
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Thank you for this very candid story of evolution and experiencing your limitations. It takes courage, but you have found it in the meantime and that is very important. Fortunately, you have now come to a point of acceptance and that will mean a lot to you. Less dubbing and thinking and more living and enjoying, even if in a slightly different way. Looking back is not forbidden, but looking ahead is also the best for you. Bye bye bye… Simone 🙂
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You’re welcome, thank you so much for lending an ear while I shared my story. Yes, I have been able to find courage in the meantime and I’m very grateful for the courage that I’ve found. It wasn’t easy – so I’m proud that I was able to build it up over the years. I am indeed looking forward to less thinking and more living and enjoying now that I’ve accepted myself. Self-forgiveness can truly be such a great gift. Looking ahead is great advice, thank you. I can’t thank you enough for taking the time out and sharing your incredibly kind and encouraging words with me ❤❤❤
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Dear Simone, your fighting spirit and your wisdom are inspirational. You walked for 6 years longer than the doctors said you could (if I have numbers right) You are taking your pain and making meaning. I’m so glad you are taking your experiences and educating others. My hat’s off to you.
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Thank you, Rebecca, I’m so happy that you find my wisdom to be inspirational. I don’t think I would’ve described myself as someone with a fighting spirit before so it means a lot that you said that because I guess it proves that I was able to build one up over time. True, I did end up walking six years longer than the doctors expected, so there’s always that to be proud of at least. Making meaning out of my pain feels incredible because it at least gives a purpose to the times that I feel down and the times that I feel low. Thank you so much, I consider your hat’s off to be a great honour ❤😊❤
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wow just wow wow wow….. you reached my heart with your courage… a courage that I would use alot more often than I have of late… thank you for showing me yours…. it’s a beautiful gift to receive…. I am confident others will say so too. I salute you ✊👊👏
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Reblogged this on MiddleoftheHeart and commented:
such courage is a truely rare find….. wow just wow wow wow
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Thank you so much for sharing this! That truly means a lot ❤ I’m glad that this spoke to you. And thank you so much for these kind words – my courage was definitely something that I had to work hard to build up over time.
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Awwww ❤❤❤ lots of love and hugs to you hun!!!! You have a fighting spirit and that’s what makes you special,!!! You did and you are doing whatever is best for you ❤❤ And believe me when I say you are an inspiration
Ps- what a cutie you look in those childhood pics 🥰🥰
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Thank you so much for the love and hugs!!! I really needed them after writing this ❤❤❤ I am incredibly touched that you said that I have a fighting spirit and am an inspiration. A fighting spirit is a great thing to have because, with it, one can face any tough times or hardships that they may encounter in their life. And being an inspiration means that I’m able to make purpose out of my pain – so both are amazing complimets.
[P.S. – I know, right? I used to be very cute when I was young 😊]
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Now you are gorgeous hun 😍
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Dear Simone, how wonderful YOU ARE!!
All my problems are not significant compering with what had to overcome!!
Joanna
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Thank you so much Joanna, your comment really made me smile 😊 We all have our own mountains and challenges which are proportionate to everything we have to face in life. I’m sure that my challenges seem small compared to some others who have been through even worse. What’s important is not putting ourselves down and taking each challenge one day at a time. You are also amazing Joanna! And I really respect your knowledge and deep admiration for nature. Never forget that you are incredible too! ❤😊❤
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Thank you, Simone, for sharing so bravely. I pray that it will help others who experience something similar to know that their feelings are normal. My own condition has worsened over the last 10 years, and I also look back and realize that if only I had or hadn’t done this or that, then things would be so much different (and better) for me now. It is painful to dwell on those thoughts, and we should not be hard on ourselves. Things are already hard enough. The future is something I personally struggle with, and am publishing a short poem about today. For me, I look to Jesus and His love and promises to me instead of imagining the near term future of my condition. This makes all the difference. He has a plan for each one of us who look to Him in faith. God bless you, Simone, and may He continue to grant you incredible courage to walk in the good plan that He has for your life.
Blessings,
Craig
P.S. – Curiously, I am never disabled in my dreams either. That must mean something, but I’m not sure what.
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You’re truly welcome – I pray the same thing, one of the reasons that I was so eager to share this piece is because I wanted other people to be able to relate and feel normalized. I agree, we really shouldn’t be so hard on ourselves. I’m sorry that you’ve also had these thoughts and feelings – they can be very tough to deal with. I also look to Jesus for his love and promises to help me through. I could not have come so far on my journey without Him and knowing that the bad times won’t last because He has a gloriuos plan for me which is continually unfolding. I read your poem about it and I really enjoyed it and was able to relate. I’ve seen other people with disabilities in this comment section also saying that they are never disabled in their dreams – maybe it just usually happens that way. God bless you too Craig ❤❤❤
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Oh, Simone. I’m angry at the school on your behalf. It was so unfair and stupid of them to insist that you do not walk. I’m so sorry to read all that you have gone through. Sorry that the school’s stupid rule accelerated your condition and that you blamed yourself for it for a long time. I’m glad that you have forgiven yourself and come to terms with all that has happened. I hope that this doesn’t happen to more people. Thank you for sharing your story and raising awareness. I hope you have a great week ahead. Keep writing, keep inspiring us ❤️🤗
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I was angry at the school for a long while too, it was a ridiculous rule and I just hope that they treat their disabled students better now. I’m also happy that I’ve forgiven myself and come to terms with my past. Slowly, over the years, I’ve been able to let go of that anger and resentment piece by piece so that it’s not holding me back anymore. You’re welcome, I truly appreciate you lending an ear to my story. My week was very crazy and busy but the good news is that the presentations at the school went really well 😊 I hope that yours went well too ❤🌷❤
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I am glad that hear that, Simone. I am glad that the anger doesn’t control you. It was my pleasure. I am happy to hear that the presentations at the school went really well. I had a great week too. Thank you. Take care 🤗😊
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“…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.”
I love that, your bravery made you write this hence vacate your cocoon! I feel like you are feeling differently about your plight as the day goes because of being such a brave girl!
Thank you for sharing.❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
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You’re welcome! Thank you so much for such a kind and thoughtful comment 😊 Sorry it took me so long to reply, I was taking a week’s break from my blog to go to a school and give some educational talks to the children about disabilities. I’m very happy that you appreciate my bravery. I am definitely feeling differently about my plight. Aw, thank you for these extremely kind words! ❤ Have a lovely day today 💚🌻💚
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You’re most welcome dear. I hope those talks went really well.😊❤️
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They did! The children reacted very well to my message and wanted to learn what they could do to make life easier for disabled people. It was a really great experience! 😊
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A very brave girl. An inspiration for many! And not only disabled but very abled people too. I am glad you have left the past in the past. May you be successful in your endeavours and enjoy life; because we live only once. 💞🌹
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Thank you so much for calling me brave and an inspiration! Those words truly mean so much to me. I am glad that I left the past in the past too – it’s been very good for my mental health and to help me accept myself. Thank you very much for the well-wishing – I hope that you will be successful in whatever you choose to do too ❤❤❤ Sorry it took me so long to respond, I was taking a week’s break from my blog to give some educational talks about disabilities to some children at a primary school but I’m back now 😊
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Simone, your story took not only time and contemplation, but tremendous courage to write. Your story is a journey of the progression of your disability, with more than your share of frustration and heartbreak, and of healing. I trust that writing your story has and will continue to deliver healing, forgiveness, and acceptance. Your story is empowering for your readers and powerful for you. Thank you for sharing and reminding all of us how precious mobility is. 💖
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I am extremely happy and honoured that you’ve appreciated and understood my story so clearly. It did take a lot of courage to write and was filled with frustration and heartbreak but I’m happy that it ended with healing and acceptance. I am so glad that you think it will empower others – I sincerely hope so. Mobility truly is precious, it feels good to know that you were reminded of that. You’re very welcome, thank you so much for lending an ear Michele. I’m back from the break I was taking from my blog and will share this weekend how the presentations went 😊
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Simone, it looks like the first message I sent did not go through. I will try again…
You are a beautiful and courageous woman and writer. I look forward to reading about your presentations.
Have a wonderful rest of your week. 💐
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I’m sorry that your first message didn’t go through. Thank you so much – you’re also a beautiful woman and writer, and your stories whisked me away to magical places of passion and discovery. I hope that you’ll have a wonderful week too ❤🌷❤
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No worries. 😊Thank you so much for your beautiful comment. Best wishes and a joyful week to you. 💐
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That’s a toughie. With hindsight of course there are things I would do differently. I am in my earlt 50s ans still do not feel I am fully-grown yet. You’ve a way to go
Good luck next week. Seriously, this is a good thing you are doing. Proud of you.!
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Thank you! It means a lot that you’re proud 😊 It was a very busy and crazy week but the good news is the presentations went really well and I think I was able to open the minds of many children. I’ll write about it on here a little later, but for now, I’m back on WordPress and it ended up being a very successful week. Yes, I think with hindsight there are things that everyone would do differently. You’re right, I have a way to go. I hope that I’ll get there eventually.
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Omg..! I’m angry at the school..! But I’m so sad to hear our story my dear..! You are really great..! You are powerful..! You are amazing..! You are an angel..! This is heart breaking pieces dear..! I really proud of you..! You are amazing..! I would like to go orphanage homes..! There I will see many children they can’t walk..! I’m very happy to found your blog..! And shared your blog with them..! Now they trying to walk and they were really inspired after reading your post..! I will save this with me and tell this with them..! God bless you my dear..! You are an angel..! You are powerful..! Keep shinning and rocking my dear..!💖🤗
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I’m angry at the school too, they didn’t treat me very nicely. Thank you so much Filarance for these amazing words! You are such an amazingly kind girl and I feel very happy to have found your blog too. Your words always make my day better and uplift me. I truly appreciate them. I’m made speechless by your fantastic words, all I can do is say thank you. I’m happy that you want to go to orphanage homes, that’s a very selfless thing to do! It would mean so much if you shared this with them. God bless you too, you are also extremely powerful my dear ❤❤❤ I took a break from my blog but I’m back now and looking forward to reading your posts again 😊
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Yeah!! So sad to hear this from you dear..!
Wowww..! My powerful friend, you’re very welcome my dear..! It’s absolutely my pleasure..! Woww..! It’s so awesome to hear from you..! You’re words means the world to me dear..! Awww!! I lost for words..! Wowww..! I’m truly happy to see your comment dear..! You’re such a sweetheart..! Wowww..! Sure, you can my dear..! Your sweet and lovely words making me very happy dear..!🤗❤️💖💕
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Simone, thanks for sharing your journey to self-forgiveness and self-acceptance. I wish you success in your new venture to bring about change ❤
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You’re welcome Rosaliene, thank you for lending an ear. I’m very happy that you enjoyed my story and thank you for the well-wishing. The educational talks that I gave during my week’s break from my blog went really well and I see them as my first few steps towards making real change ❤❤❤
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Don’t regret on what could have been, but put more attention on what is, and can be. A future of possibilities, and opportunities which are beyond your imagination waiting for you to bring them to life. Your destiny has impact greater than your disability. So, give no recognition to your disability. It’s not a disability because you do things differently. Afterall, we are living in global society of diversity with adversity.
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Wow, these are extremely wise and encouraging words – thank you so much for sharing them with me. Sorry it took me so long to respond – I took a week’s break from my blog to give educational talks to children about disabilities at a primary school. Yes, I’m trying to take your advice and put more attention on what is and what can be because I know that my future can be whatever I want it to be. “Your destiny has impact greater than your disability” I found these words to be very powerful. I’ll try to hold onto them moving forward ❤❤❤
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Good on you. The challenges that fulfil you lies ahead, not behind. So, wheel yourself forward, not backward.
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Hi Simone, sometimes people want to do the best, and instead do the worst. But finally you’re the strongest: you won a great victory accepting yourself just as you are, and struggling for others.
Please, keep dreaming 💪
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I understand – I’ve come across many people who have meant to do well for me but have ended up actually harming me instead. But you’re right, I was finally able to come out on top of it and win a great victory by accepting myself. Thank you so much for these encouraging words, Andre. I always appreciate your input. I’m officially back from my week’s break from blogging now that the educational presentations at the school are over. I hope that you’ll keep dreaming too and writing incredible poetry ❤❤❤
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but I was always good at ignoring them – this makes the power of your spirit so clearly evident, right at the first time you said it. The little girl is has so much more knowing than all the experts around. Your sharing reflects the numerous instances where the institutions refuse to look at the holistic potential of an individual and focus only on their knowledge of the physicality. You are a gorgeous spirit warrior who has won over the toughest battle of all by finding forgiveness, acceptance and purpose through your journey. Your other powerful words that caught my attention were – I still wouldn’t change who I am now. You are a powerful spirit warrior. I am very familiar with vivid dreams and I think your dreams are very much real in how they convey freedom of running through joyful fields – for you have the ability for joy unlike any one claiming to be abled, through your honest, earnest, courageous, vulnerable way of navigating life. You are a healing awareness for us all. Much Love.
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Your comment means so much to me. Truly. Sorry it took me so long to respond, I am now back from my break from my blog. I agree – sometimes institutions tend to do that and it can be harmful to prioritise knowledge of the physicality when it comes to specific individual cases. I am taken aback by your descriptions of me. All I can say is thank you. Being a spiritual warrior is an incredible feat because they can handle all of the punches that life throws their way. So I feel honoured to have been called one by you. I hope that I will continue to feel that joy and it will continue to grow throughout my life. I feel so happy to have met you, I’ll always carry these words with me. Much love to you too. Have a wonderful, incredible, blessed life ❤❤❤
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You are very welcome 💛💝
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I can’t stop crying, this has hit me to the core. I’ve never spoken about the process of losing the ability to walk, like you, I still have dreams where I can walk independently. It hurts. You’re bloody amazing, you know that right?
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I’m so happy that my words moved you, comments like this are definitley what made my story worth sharing. It’s nice to know that I’m not the only one who has dreams like this. It does hurt. Just know that you’re not alone, it’s perfectly normal – there are other disabled people in this comment section who have said that they had similar dreams. Thank you so much for calling me amazing ❤ You are too, I learn so much about numerous different types of disability through your blog. Sorry it took me so long to respond, I’m back from my break from my blog now though. Have a lovely week ❤🌷❤
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Thank you 💚 that means a lot, let me know if you ever want to feature in the series 🙂 hope you have a lovely week too 💚
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Never blame yourself and never give up!! 🙏
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Thank you so much, these are very kind and wise words. I truly appreciate you reading this post. It took me a while to get to your comment because I was taking a break from my blog but I’m back now. Sorry for the wait 😊
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Simone,
With each revelation, my admiration for you increases exponentially. You do indeed have a fighting spirit—accompanied by a huge heart and ability to forgive that enables you to soar above your setbacks.
The fact that you have reclaimed your art and communicate so beautifully via a pen in your mouth reinforces the sense I get every time I read your posts: you will do big things and lead a rich, full life. And once again, I feel enriched by your example.💕
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Thank you so much Annie for this lovely comment. Sorry it took me so long to respond – I was taking a break from my blog but I’m back now. I’m touched that your admiration of me continues to grow. I am overjoyed that a big heart and an ability to forgive was the sense that you got from my writing, especially since this was a very emotional post for me which I had re-written multiple times. My previous versions of the post weren’t as forgiving and self-accepting so I’m proud of how far I’ve come when it comes to how I used to view this story. I hope that I will be able to go on to do big things too. I’m absolutely honoured that you feel enriched by my example. Thank you so much Annie, I always treasure your incredible comments ❤❤❤
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Simone, I am sorry for your suffering at the hands of ignorant people, sorry that you ever blamed yourself. The most important human function happens in the brain, and yours seems to work superbly. Whatever we have in the physical world is a bonus. Enjoy! ❤ ❤ ❤
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Overtime I’ve come to agree, the physical world is not as important as what we share from inside – after all, on the internet, I’m as ‘able’ as anyone else. Thank you so much for these kind words, you have no need to apologise: things are much better now and everything that I went through made me that much stronger. I’m back now from my break from my blog. Hopefully I’ll be able to share this weekend about how my raising awareness about disabilities trip to the school went.
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I quote “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.”
This is great to know that you have found your talent and using it for benefit of others!
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Thank you so much for this kind comment 😊 I am also extremely grateful that I’ve found my talent and that it’s something that will hopefully make a difference in this world ❤
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Simone, God bless you! I, too, look back and think, “If only I had pushed back when …” But we were both too young when others were making those decisions for us. I’m glad you were able to “forgive” yourself, but really there’s nothing to forgive. I have come to believe that God works all things together for good for those who love Him and are called according to His purpose (Romans 8:28). You can assume that He has a wonderful plan for your life, and we (your readers) see it unfolding already in the way you inspire so many with your blog, to name just one.
On the other hand, your story sounds eerily familiar – people in authority taking away your rights “for your protection,” using fear to keep you from doing what you clearly COULD do, making you eventually UNABLE to do what you should have been able to do. Some of us see this happening on a massive scale, and are starting to push back, especially mothers of school children who have decided “enough is enough.” But that’s a discussion for another day.
Blessings,
Annie
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Thank you so much for these kind words Annie. Sorry that it took me so long to respond to your comment – I am now back from the blogging break that I had been taking. These are normal feelings to feel, it feels good to know that I’m not the only person who looks back and is occassionaly regretful about not pushing back harder when people wronged us when we were younger. I also believe that God has a wonderful plan for my life. He hasn’t let me down thus far ❤
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(And He won’t. ❤ )
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This was a heart touching write up! Went through your journey, through your words !
But I love the way you say, it’s time to accept and let go of the past. That’s the hardest part and key to living today well 🙂 you are a fighter 💛
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Thank you so much for calling me a fighter ❤ I am so glad that you went through this journey with me through my words because that was exactly what I was trying to convey. Indeed, if any of us want to live today well we all need to accept ourselves and let go of the past. I wish that for everyone. I truly appreciate your comment, the only reason it took me so long to get to it is because I was taking a break from blogging but I’m back now.
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Simone, I cried throughout reading your post. I agree with all former comments and believe your will and tenacity will see you through the rest of your life.
You’re aWEsOMe!! ❤️🦋🌀〰️😘
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Sheila, thank you so much for this lovely comment. I’m sorry it took me so long to reply, I was taking a break from my blog while in London but I’m back now. It is an incredibly rewarding feeling to know that my words moved you so deeply. Thank you so much for these amazing encouragements – I hope that my will and tenacity will see me through whatever else I have to face too. I truly admire you and your love for this planet and support of small businesses. YOU are awesome, Sheila! Thank you for helping to put a smile on my face today ❤😊❤
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Little sister my chronic illness is different so I only need a cane sometimes but I can relate to losing ability to do things. It is difficult and at times more so than others. As we persevere and seek Jesus in our struggles, he can reach others through us. I often think of the wonderful example of faith from Joni Erickson Tada.
Jesus is shining through you and he will reach people through you.
One day we will do as a song I love says- We Will Dance On the Streets that are golden. Knowing that keeps my hope intact. I once could walk miles and now only a few blocks. I once had focus to study for hours and now brain fog kicks in. A few examples. But Jesus is at work and one day my struggle will be over and I will be home with him. Until then he has a purpose for me in this life.
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Thank you so much for this message. I’m truly sorry that it has taken me so long to reply – I’m back from my break now though and me and my family made it safely across into England after a successful quarantine and five tests each. I’m happy that I shared this story because it’s good to see that some people were able to relate to the feeling of losing the ability to do things. It shows me that I’m not alone when it comes to dealing with these difficult emotions. I’m very pleased that you mentioned Joni – she was a great example for me and her story helped me through some dark times when I was younger. I’d be honoured to let Jesus shine his light through me so that it can reach other people. Nothing would please me more than being an example of what people can achieve through faith. I love the message that you shared here – one day we’ll all be able to run and jump and be carefree when we go home and stand beside him. Until then I hope that I will have an impactful purpose to fulfill in this life. Thank you so much for sharing that with me ❤❤❤
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You are a precious piece dear Simon. Erase your thoughts of saying that you are a waste piece. I know it takes a great courage to handle self at your condition and it’s frustration but dear one you hot guts and you are very powerful and can inspire many such souls with your other abilities capabilities n much more. I am glad to know that your contribution of speech at school n yes your precious journey started here n will never end. Keep it up with your strengths. Sendinv you loves n good wishes. Be blessed ❤
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Thank you so much for the love and good wishes ❤ Sorry it took me so long to respond, I was taking a break from my blog. I can’t tell you how much this comment means to me – thank you for these amazing words. You are precious too Suma Reddy. I am trying to ignore my negative thoughts that tell me that I’m not worthy anymore. I hope that I will be able to inspire others through my words, so it’s great to hear that you’ll think that I’ll be able to. I promise to keep up my strengths and I hope that my journey will continue too. Thank you so much once again for these encouraging words. I shouldn’t have kept you waiting so long.
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Never mind sweetest. I can understand that. Glad to see you back n hope you are doing good. Take care. Have a good day with happy smiles.💖💖🤗
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It takes not only courage but immense faith in oneself to write about a difficult and emotional journey. You have moved way ahead of defeat, victory is yours for the keeping. I understand that quite a few factors influenced this painful journey, but often, the more we hate and blame them, the slower we recover from the blows inflicted. Life is the way it is, and as I read your words, I find a brave, beautiful, and talented young woman whose dreams are immense and will definitely be realized with grit and determination. Simone, you are an example to so many. Many individuals your age hardly have half the understanding and maturity you exhibit. It’s such a joy to know you. And you must love yourself always. That would be the greatest honor you bestow upon yourself. Shine bright star, the darkness is lighter with your radiant spirit. Love and best wishes always. 🙂
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I didn’t deserve this comment – it’s truly so wonderful. Loving myself is a great honour, but it’s not easy. It’s something that constantly needs working at and, even now, sometimes I struggle with it. I agree: the more we hate and blame the factors that held us back – the slower it takes to recover. That’s why it felt incredibly good to let go and share about everything that happened so that it would be in the past once and for all. I am so happy that you see such a talented and brave girl through my writing – especially since sometimes I lose sight of her myself. “Shine bright star, the darkness is lighter with your radiant spirit” I will keep these words with me always. I can’t thank you enough for your love and support ❤❤❤
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Good to have you back, Simone. You deserve all the goodness and happiness in the world. 🙂
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Good to be back 😊
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It is obvious, from the number of responses and the depth of their emotional connection, that you are already making a difference in this world. You write with wisdom and maturity far beyond your years.
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Thank you so much, truly ❤ I am extremely grateful for every single comment that I recieved – including yours. I’d love to think that I’m making a difference and hope that I can touch many more hearts and souls in the future with my words 💚🌻💚
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I think many of us have been there with self-blame, I certainly have too Simone…I once read that by blaming ourselves for things and berating ourselves, we are attempting to gain control of the situation…it can sometimes (not always!) be less painful to imagine that we hurt ourselves rather than someone else hurting us. But as in most cases, you are certainly not to blame for what happened and I am so glad that you are on a journey of moving beyond that and helping others with what you know:) All the best with your communications to the important people, I hope it goes well and you change some things around here because from reading your blog pieces it’s all too clear that a lot of things need changing. Sending some peace your way Simone, enjoy your break!
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I’ve never heard that before but it makes a lot of sense. I suppose by blaming ourselves it’s easy to have someone right in front of us who we can hate for all of our problems rather than someone else who is outside of our realm of control. I hadn’t thought of it that way before. I am glad that I am on a journey of moving beyond that as well, and I hope that you were able to too. Thank you so much for the well-wishing, the presentations did go really well. I think that I was successfully able to open more people’s eyes with them which is great. I hope that you were able to enjoy your break also! ❤😊❤
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I’m glad the presentations went well Simone! And all the best with wherever your adventures take you:)
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Such cute pictures of you Simone.. Now and then. Wow what you have been through is remarkable and I love the fire in your belly and determination. I love that you have dreaming nights where you remember being in your body and running through the fields.
Have some great time off and enjoy speaking which I know will be amazing an inspiring💖💖
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😊 I’m glad that you enjoyed the pictures. I’m also happy that you enjoyed reading my story and that you appreciate my determination. I hope that, by reading my story, others will learn to feel the same when it comes to facing hardships in life. The presentations did actually go very well! I think that I was able to open quite a few people’s minds with them which I’m very happy about ❤😊❤
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So glad to hear from you! I wondered how you were and how it went! So glad to hear and congratulations I know your work is always making it inside. Keep up the great attitude and educating people as July! Haven’t seen you lately visit when you get time XOXO 💕🌹❤️
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Definitely, I’m looking forward to getting back to reading and commenting on your posts again! 😊
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Oh and I am looking forward to yours too!!! 💕🌹😍
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You are an inspiration… whose eyes say, I am just as sassy as before… maybe even much, much more… and a poser I shall remain forever more… for I… yes I… am thewheelchair DIVA teen… sitting tall… and definitely not… a waste of space!!!!
🇯🇲🏖️
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I love this little poem that you wrote for me! Thank you very much – it’s very sweet and I love it ❤ I am honoured that you think that I am an inspiration and a wheelchair diva teen. Over the years, I promise to continue to sit tall and remain just as sassy as before 💕😎💕
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“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.”
Regardless of your not being able to walk anymore NOT being your fault in any way, this was just stupid and abusive. But maybe one day you’ll be able to teach able-bodied people how to deal with disabled people like you, exactly because you went through stuff like this.
“finally love myself despite suffering from depression numerous times and telling myself every day: “you’re a waste of space.””
Aww, hon, you aren’t anything of the sort. And you’re going to make a difference, I just know you are. Your spirit will rise above everything you have to endure and all the people who suck.
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I agree that it was quite a dumb move made by the school. Yes, that’s one of the reasons that I’m fighting to make a difference – so that hopefully what happened to me won’t happen to anyone else in the future. I hope that you’re right and I will be able to make an impact. The presentations went really well and were able to open a lot of people’s minds so I guess that that’s the first step. I think that it’s important for all of us to rise above what we endure, no matter what we face in life. It isn’t easy though – that’s why it was such a difficult journey for me. Thank you so much for reading and listening while I shared it ❤❤❤
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Reblogged this on and commented:
I read about Simone’s story and was so touched.
Sent her an email too!
If I was ever given an opportunity to visit The Netherlands, would hope that I can pay her family and her a visit.
Note to all: CMT is a progressive illness ya? Please do not stop your workout routines! You can exercise from home too or take strolls (if your condition allows).
But please for the love of God, please please please be careful and don’t over-push yourself ok? ❤
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Thank you so much for sharing this – I feel so happy to have reached someone else with CMT and that you were touched by my story. I loved your email too and have replied to it, thanks for reaching out. That is very good advice. It’s important to keep moving when you have CMT – I guess my story is definitely testament to that.
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It is common for children and teens to blame themselves for things that they are not responsible for. IF anything could have been delayed, it falls on your caregivers (doctors, nurses, school etc) to have advised your family better. Degenerative diseases are no ones’ fault and often follow a course of their own. I admire your courage to face your feeling of guilt right in the face and the great example of optimism, perseverance and acceptance that you are giving. As for the dreams, when my father died and for many years, I would dream that he was alive, just to wake up to the crude reality that he was not. Sweet photos of the younger you! Thanks for sharing.
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True, it is quite a common feeling for young people to have. Writing everything down like I have here – has helped me to realise that it wasn’t really my fault and there was nothing much that I could’ve done to stop things from turning out like they did. You’re right – degenerative diseases follow a course of their own. It feels good to be able to let that guilt and worry go and see things from this perspective. It feels amazing that you admire my courage and my example of positive attitudes that I am giving. Thank you so much for reading my story and appreciating it as you have. I’m sorry that you had those dreams, but at the same time, I can relate just a little bit. I’m very sorry for your loss, thank you for sharing that with me. I hope that you’ll have a lovely weekend Alessandra ❤
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Thank you for sharing!!… it is sad that you can no longer walk like you thought you would, but the battle for you has not stopped, in fact it is just starting and you are an inspiration for everyone!!.. “Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” ( Maria Robinson )… 🙂
“When you are truly inspired by some great purpose, some extraordinary project… your mind transcends its limitations, your consciousness expands in every direction, and you find yourself in a new, great and wonderful world! Then those dormant forces, faculties and talents inside you become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be.” (Patanjali )…. 🙂
Until we meet again..
May flowers always line your path
and sunshine light your way,
May songbirds serenade your
every step along the way,
May a rainbow run beside you
in a sky that’s always blue,
And may happiness fill your heart
each day your whole life through.
(Irish Saying)
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You’re welcome! Thank you for lending an ear and listening while I shared my tale. You’re definitely right – the battle for me is just starting – and I won’t go down easy. I’m honoured that you find me to be an inspiration – I’m both amazed and overjoyed that my story was able to touch and move so many. Wow… that Patanjali quote perfectly described how it feels like to have a goal to fight for or a greater purpose. That’s exactly how I feel about fighting for equal rights for disabled people!
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It takes a lot of guts and self confidence to really share something like this in the open: you sure are filled with a truckload of both, and I’m so proud of you for being so brave about it! 👏🏼👏🏼👏🏼👏🏼❤ (btw you looked so adorable in those sassy little kid poses)
I’m still in disbelief that your secondary school refused to let you practice walking, but I guess they must’ve had their own reasons to do so. The least they could’ve done is offer some guidance in ensuring that nothing happened during these walking sessions, maybe things would’ve turned out better I guess? I don’t know…..but what’s done is done, I suppose. The biggest achievement you’ve managed to attain so far is overcoming your depression and your self loathing. Never, ever blame yourself for your condition at any cost: you are an absolute boss and a true champion. Keep tackling challenges ahead one at a time, and enjoy life as it is.
Good luck with your conference next week! Big things are waiting for you indeed 👍🏼
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It did take a lot of self-confidence to be able to share this – that’s why I re-wrote it so many times and waited for a while until I felt ready enough to post it. So it feels incredible to have recieved this amazing response to sharing my experiences: thank you SO much for reading and sharing your thoughts about it with me. I am extremely grateful for it ❤ I agree – what’s done is done. It feels good to let go of all of my past guilt and self-loathing. Aw, I can’t thank you enough for these extremely kind words! Thank you for calling me a boss and a true champion. It put a huge smile on my face 😊 That’s great advice – it’s important to enjoy life as it is and take things one step at a time. Actually, the conference went really well! I think that I was able to educate a lot of people with my words which was what I was hoping for. Thanks for the support, I hope that you have a great Sunday! 💚🌻💚
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You’re very welcome!
I’m so glad to hear that it went well. Wishing you a happy Sunday in advance as well! ❤
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You are incredible, brave and inspirational 👏🏼❤️ Thank you for letting us see you at your most vulnerable and teaching us in the process. Wishing you all the best in all your endeavours💕🌸
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Thank you so much for these incredibly kind words! I truly appreciate them ❤ You’re welcome – it felt almost necessary to share because it helped me to be able to officially let go of the past once and for all. Thanks for lending me an ear while I did. I wish you all the best too! ❤😊❤
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You’re welcome, thank you so much 🌸💕
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This is a very brave post and in a way a lesson for me. I am a lot, lot older than you and I keep stopping myself from doing things because of my fear of falling. Thank you for the lesson of not giving up.
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Thank you ❤ I’m so happy that you were able to learn something valuable from this post. It is indeed important to not give up or to let our fear hold us back. I am honoured that you took that away from me sharing my story. Thank you for telling me. I hope that you’ll have a wonderful Sunday! ❤🌷❤
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I applaud you for your courage and such a wonderful kind heart! I know about that fear of falling. At my age everyone thinks everything stops and we just kind of fade away. Not so! I will fight with my last breath to keep what abilities I have. That said, I know it must have been so hard to accept your situation. I am still working on that one. Sending love and big hugs!
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It means so much that you appreciate my courage – thank you for these amazing words. It feels good to be able to speak to someone who could relate to that fear which I shared in this post. I applaud your fighting spirit – never give up on the abilities that you have left, no matter what anyone says. You will thank yourself later for it. It was difficult to accept my situation but honesty, self-reflection, and optimism got me there eventually. I hope that one day you’ll be able to do the same. Thank you so much, I wish you lots of love and hugs too! ❤❤❤
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It’s terrible and must have been frustrating for you that the school didn’t allowed you to walk! Maybe the decision was out of fear or sometime 😐
But you!! Yes you girl! You are such an inspiration for all❤️ I said earlier also..you are such a pure and genuine soul that I really love to read you!
So glad you were finally able to share the whole story! The way you carried us with the incidents in a gripping way is commendable!
The outside world is very harsh and cruel at times and the way you had to deal those is more frustrating but dude you are such a strong soul!
You are much stronger than me/us as self forgiveness is really tough but you are DOING IT!
Reading you always imparts a lot of positivity to me seriously ❤️
So so proud of you!! Keep acing Simone! You are a shining star! Keep shining ! Lots of love to you! You are awesome ❤️
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It was very frustrating that the school didn’t allow me to walk. You’re right – it was most likely out of fear. I can’t thank you enough for this incredibly kind comment! Your words were amazing and encouraging and really made me smile. I’m glad that you thought that I was able to tell my story in a gripping way and that you enjoyed it as much as you did! I am honoured that you think that I am a pure and genuine soul. I feel the same way about you too – you are always so kind and loving. True, the outside world can sometimes be harsh and cruel. That’s why it’s important to stay strong and face all of the challenges in life with courage and hope. I am overjoyed that reading my work makes you feel more positive. It means so much that you are proud of me. I promise to keep acing and shining. Lots of love to you too ❤❤❤ You are amazing 😊
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Yes reading you does make me feel positive ❤️
Sending lots of love and hugs ❣️
More power to you!
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You are such an inspirational person Simone, a fighter!! I feel so disheartened and so sorry that you have suffered sooo much. Got tears in my eyes reading your post. It’s difficult to find such a brave, beautiful person as you are ,inside out. May God bless you immensely ❤️ keep shining my dear🥰
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It is an indescribable, incredible feeling knowing that someone was so moved by reading my story. Thank you so much Samreen for sharing this with me. I have suffered a lot – but I wouldn’t know how Simone would look like without all of the scars as well as the truimphs. My pain has helped me to become a stronger person overtime. I can’t thank you enough for calling me a brave and beautiful person. I think that you are too for how much passion and true heart you pour out through your amazing poetry. I’ll keep shining ❤ May God bless you too 💚🌻💚
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Aww I loved this post, you should be so proud of how far you’ve come though and I love how you’re using this blog to spread awareness. Good luck with the emails – I’m so proud and happy for you! ❤
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I’m so happy that you enjoyed this post! It’s one that meant a lot to me so I truly appreciate the positive feedback! ❤ The emails have been going really well and I’ve been able to reach even more people with my message of equality for all disabled people through my presentations and public-speaking which I’m really happy about. I’m honoured that you feel proud of me, Zainab. Thank you for always being so supportive and caring! ❤😊❤
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I am so amazed by your courage and willpower, Simone. I love your determination to move on. It is really commendable. I feel bad the school did not let you walk… But you have emerged a winner. I absolutely love reading your posts and I actually read this the day you posted it, but I waited for a good time to write my comment. Keep going and know that you are a light in this world. Stay blessed and safe. ❤️❤️❤️🤗🌹
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Thank you so much, Diana. I have missed your beautiful writing so much while I was on break – it was one of my favourite parts of blogging. I am so happy that you enjoy reading my posts – especially since this one was very close to my heart. It means a lot that you appreciate my courage and willpower. I didn’t have much of it when I was younger, it was definitely something I had to build up over the years by wrestling my challenges in life. You and your amazing writing are most certainly lights in this world too. I hope that you’ll stay blessed and safe too ❤❤❤
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