Being Me

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It wasn’t until I started having bits of me cut off, that I truly understood what it meant to be a disabled person.

 

I remember one day, after one of my 4 amputations, that I said to my Dad, “you know, they can keep cutting bits of me away, but I’ll still be me”.  And he instantly started to cry.  That wasn’t my intention, to make my dad cry.  But I think it was then that I genuinely understood physical disability.

 

When you first have an amputation, you have to wait 8 weeks for the wound to heal and the swelling to go down before you can be fitted with a prosthetic.  And then of course, you need to learn to walk with it.  And at first, you can’t wear it all the time as your body needs to adjust to weight bearing on something that wasn’t designed for bearing the weight of your full body (i.e. a cut off tibia or femur).  So of course there are lots of times you have to go out in public with crutches and a missing leg.

 

And that means people staring, some people do a double take, some people try to look very subtly by just looking sideways, some properly stare for a while, I even once had a lady tap her friend on the shoulder and point at me.  My approach has always been to ignore the staring.  My mum told me I should give everyone who looks a big smile, but maybe I’m not as nice as she is!  I just tell myself that I would do the same thing.  If we see someone who looks different in any way – excessively thin or fat, or with crazily dyed hair or bad style (one I know I have to confess to…see, I am mean!), then we can’t help staring.  It’s just human nature.  So I’ve decided I can handle it, though to be honest I wish it wouldn’t happen…

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The picture above is me during my second year of chemo just after first amputation,
Summer 2008

Anyway, the point I was making was that I’m still the same Louise.  Weirdly people treat you as a hero or as someone who is especially brave, when you have cancer and/or a disability, especially one that makes dramatic visible changes to your body.  And we all seem to think cancer patients will discover the true meaning of what’s important in life.  And yes, I have (though I hope I knew that beforehand already).  But we also don’t stop being ourselves. I carried on with my Vogue subscription and my addiction to shoes (yes shoes!  An amputee who loves shoes…how crazy is that?!) and of course…the handbags (some of you will be breathing a knowing sigh…).  But I also carried on being Louise.  Wanting to see friends, get dressed up to go out for dinner, read books, go to the theatre, watch trashy TV…

 

So my disability didn’t change me at all, apart from making walking, carrying things, getting dressed, dancing, walking on a beach, balancing on a bus, dancing, sitting (I could go on forever but I won’t) a hell of a lot harder.  I’ve always been me throughout.  And I’ve always tried really hard to make sure everyone around me sees and knows that.

 

And of course every one of us is different and wants different things from life, so I can only speak for myself.  And I think that’s why Diana (my boss at Thistle) values me – because I understand.  I just hope after reading this, more people will understand this now too.   I may have a disability, but I don’t consider myself disabled (the parking badge comes in very handy though!).  I’m just Louise and no matter what has happened or is yet to happen, I always will be.

 

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13 comments

  1. I think you learn a lot about patience. We find that everything takes longer. Love your post and attitude.

    Cheryl

  2. patrickohagan · · Reply

    A really helpful and insightful message Lou.
    Staring is something my daughter Daisy lives with too. Sharing your story will help her, and others understand. It’s a human reaction, but very hurtful.
    However…the last time I caught myself staring at either of you; it was because you’re both stunningly beautiful women…so it’s not all bad attention ;-) Big Hugs Gorgeous, Pxx

  3. I had never thought of it this way. In how it doesn’t change who you are (only what you can or cannot do, or how much longer it takes). Thanks for sharing xxx

  4. Lou, Alan shared your link on FB and even though I haven’t met you it is a pleasure to read your blog. It is clear you have a gift for writing. Without knowing you, I feel like I am getting to know you. I have just finished a book called Wonder (abou a 10 year old boy with severe faial deformities) which repeats your sentiments on people staring. I had never thought of it before. I am tempted to use some of your words in my teaching to help my young students to better understand how their actions affect others – would you mind that?
    I look forward to reading on, Nicki

    1. We’d be more than happy for you to do that Nikki. Thank you for the positive feedback Alan

  5. Peter Brepoels · · Reply

    Louise, I shared your story on linked in. Lots of social workers and carers in my contacts and the point you make is as sublime as it is simple: Hey, it ‘s still me. Smart, irrational, weak, strong, funny, sad, …. me.
    Thanks for sharing.

  6. Louiese or Lou,
    You are a great I inspiration to me. Your probably sick of hearing this, I work in palliative care and my daughter has / had ( in remission for the time being) osteosarcoma, she was 17 diagnosed but has made it to 23 , Josie has been to uni and got a first, she had her second amputation of bone taken away 3 days before Christmas 2012 but she is fortunate because they have still managed to patch her up with the longest prosthetic limb . ( a titanium bone inside her leg ) , she still has almost half her femur and a small bit of ankle, the rest is patched up) Josies leg is naturally very waisted and has loads of scars, every day even with a bad limp she is grateful for that titanium bone. Her last surgery she was told after this there will be no choice but an amputation. Your incredible story gives me hope as a Mum . I’m realistic about Josies future as she is , its just that beautiful amazing courage I don’t want to see disappear. JOSIE says sometimes you have no choice and she gets frustrated to be told she is brave but like you it’s all that is left sometimes. However I want you to know that you are amazing because not everybody is brave believe me.
    Not everyday has the bravery part it does not always come with the diagnosis. Stay amazingly brave and thank you for giving a mum hope for the courage to keep going.

  7. Very much like me and my disability. We will not be beaten by it. Go girl GO

  8. rik stoney · · Reply

    Hi Lou
    Rik
    Sues son
    cant beleive Ive not met you and Alan. youve both been all the way to newzealand and stayed with Andy – Tony -Jamie -Alana
    Yet were only a hundred mile or so apart.
    I speak too and ask your dad about you all the time.
    can I say your Dad is the most caring .thoughtfull, calm, understanding,strong person I know.
    What a loverly man
    and what a rock
    Lou I have a saying. Keep it lit.
    And you always have.
    All the best rik xx

  9. john page · · Reply

    Louise (Loops)
    I have never thought of you as disabled. You have always lived your life to the full. Your spirit and determination is inspirational.
    You are my rock and will always be my beautiful princess.
    Dad (Daddy) xxxxxx

  10. No matter disabled or not personality and sheer determination when people talk to people they ser the book inside the cover no matter who we are we all age change but inside we are all the same person…;-)

  11. Ross Swinton · · Reply

    Have a Disability but not Disabled, I’ll get that on a T-Shirt (but wont let on to ATOS). Louise, I’ve passed on the web address of your Blog to all the Veterans who have crossed your path and have used mercelessly. Like me, they are all gutted. Remember when we were toying with the idea of’ Thistle Veterans’ and I was nominated spokesman (cos you scared the rest of them) and was ready for all the reasons we should use this design, had ran through all the opposition you were going to fire my way, had an answer for everything … Except “Oh thats good, I like that.” Totally deflated, don’t think I’ve ever been lost for word before. Now I look back on it I think you knew I was all geared up to argue my point and said that to put me on the back foot and shut me up before I got going; somebody must have told you I don’t come with brakes. From that day you had my total respect, still have. Just glad you never met my wife and showed her how to ‘Slap Ross Down In Two Seconds’, though I think you’ve been giving Pat some tips. I think all dictionaries should remove their descriptor for ‘Inspiration’ and have a picture of you ther instead. Keep Your Rock Lolling. Ross

  12. I have walked on crutches my entire life. I was born with spina bifida. I have a college education and a great career in marketing and sales and have been named the future CEO of the company i work for. Oddly, I always perceive my biggest challenge as being a woman in business. I forget I walk on crutches because i am just being me. You said something I can really relate too. People perceive you as a hero or especially brave. I always feel they give me too much credit. But the truth is , there is probably some truth in the brave. I’ve heard women who wouldn’t go out with a pimple. Imagine if they took on the world with crutches. We all look for heros. If it helps or inspires someone to view you or me as a hero, accept it as a great compliment and recognize your value in life was so much bigger than you ever could have imagined.

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