Amy’s* Blog

This is a guest post written by a lovely lady called Amy*, about her experiences of having to deal with strangers’ intrusions in relation to her health difficulties.

I have never actually met Amy in person, but she messaged me after she read my blog and she has continued to send me the loveliest messages of support, which never fail to make me laugh. After she told me how my post about “Polio-gate” (if you haven’t read this post, please read it here – it’s a goodun) resonated with her and why, I asked her to write this post for Tumour Has It.

Although this section is entitled “Things Not to Say to a Cancer Patient”, Amy has never actually had cancer. This is insignificant though when speaking about this subject – no one deserves to be treated in this way, singled out and made to feel as though there is something wrong with them, as though they are lesser in some way than the rest of you. It doesn’t matter the reason why we look like we do, or walk like we do, or cannot do the things you do; we all deserve our privacy, our dignity, our space

I have been holding on to this post for a while, waiting for the right time to post it, but something happened recently that made me realise now is the right time. I went out for dinner with a friend, it was the first time I have been out on my own without my parents for ages, and I was hoping for a laid back few hours away from my diagnosis. The waiter opened the door for us and before he even showed us to our table he said to me, “What’s wrong with you?

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My friend, Kourosh, and I out for our curry dinner.

I have been asked these questions many times before, but for some reason, whether it was the phrasing or that I was hoping to escape my diagnosis for that one evening, it took me aback and it shook me. It shook me to the point where I, a person who always makes a point of refusing to hide away and be embarrassed or ashamed of their diagnosis, faltered in my response and responded quietly that I was just ill.

I have returned to that same restaurant with my parents since that outing, and believe it or not the same waiter asked me the same thing again. I do not believe he thought I was someone else; I can’t imagine they get many bald twenty two year old females with crutches in there. My parents and I were astounded; it was pure unrelenting nosiness and entitlement.

To that stranger who asks these questions, to that supposed friend who makes these remarks: your words aren’t just words, they’re pinpricks that sting the eyes, they’re nails that dig in to the skin, they’re splinters that catch in the throat.

This post goes up today because it is not right that it hasn’t gone up already. This post needs to be read right now, if not yesterday, as these intrusions and comments still, for some reason that is totally beyond me, continue. I hope that reading about Amy’s experiences makes you think twice before asking that seemingly innocuous question that to you is just natural curiosity, or before making that comment that to you is just you imparting your much needed wisdom. We don’t need to hear it and we don’t want to hear it. We don’t care what you think.

I want to say a massive thank you to Amy for writing this post and sharing her experiences. Her attitude is one that I admire massively, and I hope to do half the things and go half the places she tells me about in my lifetime. We cannot help getting sick but we can help what we do with our experiences, and Amy has used her struggles in the same way I aspire to use mine.

And now I’ve waffled on for far too long, so I shall pass you over to Amy!

I had lots of operations on my hips as a kid after a misdiagnosis by my local GP, and whilst I am lucky these days to be fairly pain free, I still have a bad gait or “waddle”.

When I was in a wheelchair, people used to come and ask my mum what was wrong with me as if I was deaf as well as disabled. She’d ask them to ask me then they would usually just get uncomfortable and walk off or change the subject. It never really bothered me though. Even as a child I figured them to be more ignorant than rude.

I also never minded when kids asked why I walk funny. I appreciated their directness. At a pool once some kids asked why I have so many scars. Because they run the length of both hips on the front and the side, I got bored and told them I was bitten by a shark and it had me between its jaws but I pulled myself free. They were impressed! The ones that bother me are the adults who try to get surreptitious glances when they think I can’t see at the beach, or the ones that wait to ask my husband what is wrong with me when I leave the room.

The other one I never understood is the “she’s so brave” comments. Sure it is complimentary. There were many times I didn’t deserve it. Such as how embarrassed I felt when I peed on the bathroom floor because I was too shy to ask the babysitter to help with my bedpan, or when I dug my nails into my sisters hand so hard I broke the skin when they took out stitches grown into the wound, or when I felt like I just wanted to die when they turned me in bed after my hip replacement.

What is brave about being sick? You can’t not do it, and quite frankly complaining or being bitter about it can only be a miserable way to handle it. There are also times I didn’t want to be brave. Times I wanted to scream and shout but felt I shouldn’t because that’s how I was being assessed and evaluated by everyone. I suppose it is sweet they say that but I never understood it.

The only time other people really upset me is when we were engaged, when one of my husband’s friends suggested that he shouldn’t marry me because of my “bad genes” and what about our future kids? It made me feel humiliated, angry and faulty. But after 11 years of marriage and two lovely healthy kids, about 15 major surgeries and a lifetime of stares, I have come to realize that I don’t really care.

It is a cliché, but I really am proud of my scars. I am proud that I fought and won. I am lucky that all I have had to endure is pain: when friends have had life threatening illnesses, abuse, blindness and loss. I have never had a “why me” and have a genuine appreciation as to the amazing life that I have had so far. I live my life taking on every challenge (whilst being afraid but doing it anyway) and I think I owe that to starting out life a bit harder than some, with parents that never treated me differently from my siblings.

In sickness, as in life, you can only worry about yourself and what you contribute to this world.

Life is too short to worry about everyone else.

*names have been changed for confidentiality reasons.

Emma (Nuffield Orthopaedic)

Amy on her third birthday.

About the Author

tumourhasit@gmail.com

5 Comments

Allison Semikin

A great guest post. Amy you have been such a support to Beth since her diagnosis and hopefully one day we will get to meet you. You have described so well the ignorance of people whether strangers or not. Beth receives this ignorance every time she is in a wheelchair, it needs to stop, apparently a wheelchair makes you unable to speak for yourself. Xx

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Laura

To Beth and Amy, I completely feel your pain and strength. I had surgery for cancer at a young age removing the large Nevis marks from my face. I have a relatively small and I believe elegant scar on my face. Anyone who knows me will tell you I am not shy nor do I lack confidence. I’ve been asked “what happened?”, “How did you scratch your face?”, and best of all told “Miss, you have something on your face.” I realize as you well describe there is an ignorance to these individuals and a lack of personal space. The best moment and probably the story that changed my view was after a fun evening with life long friends as teenagers we went to the local pancake shop. 4 lovely teenage girls were sitting together laughing a this mildly chubby young man, maybe 20 years old comes up to take our order and looks at me and says “What happened to your face?” And more than his words shocked me but the tone of disgusted as if my face was damaged and made ugly. I couldn’t even speak but my best friend said without hesitation “You are so rude for asking, she was raped, and you are a terrible person for bringing up those memories in a stranger.” I was shocked again. But I realized if anyone had heard or been with me to hear she had and she was as hurt and shocked by his reaction so she wanted to inflict that pain on him with her words. I said nothing, but to order my chocolate chip pancakes and get out of there as fast as we could. I later asked her why she said that, why she made that up and she said, so he would remember that encounter and think twice before invading my privacy. It was then I realized my story was mine to share when I felt like and even though it is on my face for the world to see it didn’t mean I had to explain myself. It is amazing in this age where disability, and equal rights exist for much of the developed world, we still don’t have a general respect for the simplicity of humanity and the diversity that makes us all really the same in many ways. Amy you have a fabulous strength and Beth as always your blog brings me to emotions that I hope to one day hug you and hold your hand as friends over a beer in a lovely pub.

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Marilyn Fletcher

A very thought provoking post which should make us all think. Thank you for sharing this. X

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Anne Jeps

Thanks for sharing, Amy and Beth, sending you both love and huge hugs xxx

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Margaret Carapetian

Hi like it or not, you and my friend Beth do come under the heading of ‘brave’ and are a fantastic example to the youth of today. Best wishes to you.

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