Who I Appear To Be

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It’s a strange double life I am leading.  Like i’m a secret undercover agent.  Except I am not saving the world from crime, I’m just surviving, one day at a time.  There’s this magical spell that covers my words, so when I say “I’m not well”, people don’t hear it.  If I do manage to explain anything to them, they forget it and assume I am well the next time they see me.

I don’t look sick, I don’t ‘act’ sick.  I just am.  Sick.

Deep undercover in my role as a ‘well person’.

Because the person you see, is Rachel, the wife, mum, the lady who is there sometimes… but lately, not so much.  You see me in the car, driving my son to and from school, or at the supermarket, leaning on my trolley and contemplating my groceries.  You might see me on a weekend, in a cafe with my family, or having a picnic in the park.  You don’t perceive a problem because you may be wrapped up in your own problems.  Busy surviving your own stuff. Life isn’t only hard for me.  And, after all, I am an expert at covert operations.  It’s actually easier than being real.

Sometimes, faced with friend’s status updates about feeling tired, or having a cold, I would like to post a real status update of my own.
Something like:
“YAY!  A new anti-nausea med to add to the mix!”
“I’m so CHUFFED!  I just administered my own enema and it WORKED!  Go me!”
“Today the courier guy said he hoped I would have a better afternoon, ‘cause he could tell I had already had a terrible morning.  And that was so NICE.  So kind from another human being.”

But I don’t.  I stay undercover and spend my energy on making the least waves possible.  It’s not that I don’t want to tell people what is going on with me.  I’m a talker.  Nothing is sacred, I’ll tell you everything, in one sitting, given the chance!  No, it’s because I have learned from my experiences that people really don’t mean
 “How are you?”  when they ask it.
People really don’t want to know.
And the crushing reality of that, when you try to answer the question, is truly devastating.  It makes you feel small and insignificant. It makes you want to run and hide.

Rachel the wife:  is rarely intimate with her husband anymore, even though she loves him.  She can’t bear that she smells like urine, that she might leak wees or poos in bed.  So she goes to bed in continence garments and tries to pretend that intimacy will happen tomorrow night.  Cuddling is better than nothing.  But she is afraid, so afraid that he will stop seeing her as an attractive person.  Her belly distends from gastric dysmotility and she feels his eyes appraising her body.  His face is blank and she can’t read it, so she imagines what he is thinking… it isn’t complimentary.  He misses who she was and he wonders how they got here.  He’s not sure if he can keep going forever like this.  What will happen when they are older?  How many more problems will there be?  Will he be her carer?  She imagines his thoughts and rolls away from him, hoping he will somehow know how much she loves him.  She is so ashamed. He deserves so much more than what she has become.

Rachel the mother:  asks a lot of her children.  They have to do jobs, unlike most children their age.  Her daughter makes her cups of tea and is kind to her brother.  Her son strokes her on the face and tells her it will get better.  She knows her kids are extraordinarily empathetic.  She’s proud of that, but she worries all the time.  At what cost to their childhood?  How many ways will her being ill, screw them up?  Can she stop their anxieties?  Should she go more undercover?  She knows she can’t do all the things they want her to do.  She agonises over how little she can help at school, on trips, at extracurricular activities.  She pushes herself to take them where they need to go, but the cost; it is so high.  Every morning, she braces herself in bed for the efforts of every afternoon.  She cries.

Rachel the friend: is best online.  Or text.  She has limited energy to maintain friendships.  So she has few friends and lots of acquaintances. Her  friends are so very special, so vital to her joy.  She loves people, but it’s hard to keep it going when her energy is spent on her kids, on her husband, on doing her housework at snail speed.  She is often lonely, often down.  Mostly, she seeks solace with other people like her, from the comfort of her bed.  They are in bed too, online, on laptops, tap tapping away.  Shouting a two dimensional hello from a continent far away, but not expecting her to walk the malls, make small talk over a glass of wine or go out for a night on the town.  They get it.  Those cyber sick buddies, her new social circle.

That is me, driving my son to school.  I am fighting back nausea, running the torturous marathon of a five minute drive.  I smile at you, his teacher, through the window of my car while my body aches all over and my left eyelid muscles fasiculate into an unintentional wink.  My eyes are so dry that I am blinking like a cartoon flirt. I hope that you won’t pause to chat so you won’t see what a wreck I am today.  Thank goodness I can drive through to pick up and don’t have to stand.  I couldn’t stand today.  You smile and tell me I look well.  I thank you.  What else am I to do?

That’s me, in the supermarket.  I am gripped by the searing heat of nerve pain, like my whole left leg has been dipped in a vat of hot oil.  I grasp hold of my trolley and try to look like there is something interesting in it.  I calculate whether there is enough food in there already to feed my family this week, because I know I won’t be shopping anymore today.  I brace myself for the lifting of groceries into and out of my car.  I wince at the thought that someone will judge me for using a mobility car park.  I swallow it all and smile at you as you pass.  I know you from school, right?

That’s me in the cafe with my beautiful family.  I want them to have as many memories of normal togetherness as they can.  I wanted to stay in bed, but not as much as I want them to have an ordinary activity.  We’re ordering and I am watching the waitress blur in and out of focus.  My head is a grey fog this morning.  I need to focus on the conversations but it is taking enormous concentration.  I don’t know what I want to order.  Any of it might make my tummy problems flare.  My son says something funny, like he does, and I laugh.  It is a spontaneous, loud, laugh.  It’s out before I can moderate it.  My bowel spasms and my breath is snatched from me.  The tears sting my eyes.  I see you walk past the cafe, I smile-grimace, and wave.  I know you from the kids’ swimming, right?

That’s me, lying on the picnic rug.  For me, it’s like a raft in an ocean of ever moving waves.  I am clinging to my piece of flotsam, watching the kids riding their bikes.  I am talking to my patient husband, he needs normal, too.  I feel the shakiness inside myself and wonder if it’s nearly time for my pills. No, not yet.  I concentrate on the feeling of the breeze on my hair and face.  It’s a beautiful thing.

You see me, care free. You know me from somewhere, but I am not who I appear to be.

29 thoughts on “Who I Appear To Be”

  1. Wow, you are an amazing writer! Wish you didn’t have to write because you have so many struggles 🙁 Arohanui

    1. Ah, we all have struggles Cat, as you know. If life was straight forward we might not know when things were brilliant because everything would be grey. Arohanui back at ya. 🙂

  2. Rachel, congratulations on your new “baby”! She/he/it is beautiful. I see lots of potential for you to really connect with people here.

    Out of nowhere (?) I am thinking of that quote about there being a crack in everything, it’s how the light gets in.

    Your light is shining here.

    Annette x

    1. I love that quote. “There is a crack in everything, it’s how the light gets in”… it’s true. None of us are spared the cracks in life. All of us can find the light in every situation if we let it in. It just may not be shining where you expect it to! I really appreciate your feedback Annette. Thanks for taking the time to drop in. x

  3. Rach, what an amazing blog! Good on you for finding a way to use your talent and share. What a lovely perspective undercover is… I will share it with my mother in law who has the same feeling. Love you.

    1. Thanks Bronny. I feel so lucky in my life, this post is just a reflection of how things feel on a tough day. It’s good to write it out sometimes! Love to your mother in law. And to you! 🙂

  4. Oh Rachel. I can hardly reply through my tears. What a brave and wonderful woman you are and I am glad to know you. Even more so now with your amazing writing.
    Love S

  5. You are an amazing person and an exceptional writer, thank you for writing your story and allowing us into your life. I look forward to all your future posts.

  6. Rachel, thank you. For writing. For your honesty. For your vulnerability in sharing. For sharing about your life. For making me cry, yes thank you even for the tears, because it touched my heart and soul so deeply.

  7. Well my friend I have laughed & cried with you before, now we are miles apart & you can still make me laugh & cry all in one breath! You have such an amazing talent, please share more. I miss you, I miss our coffee & cake catch ups! You are so incredibly brave & so very wise, I’m so lucky to have you as my friend. Thinking of you & your beautiful family xxxx

  8. I enthusiastically agreed to check out your blog, but I was not at all prepared for what I found. I knew you were good with words…but not this good, and I knew you were sick…but not this sick. Your writing is so fluid and poetic and raw and direct that I feel inadequate adding to it. It is just so touching to read, and is a great reminder to all of us living in relatively well behaved bodies, that we should take the time to cherish everything and everyone. I know that you would trade your illness for good health in an instant, but dealing with it is just your reality, and I think you are brave for sharing it so openly. I’m sure your family will re-read the words many times over… xx,

  9. Thankyou for sharing this Rachel. It’s not just that you have the courage to be honest, it’s also that you’ve put the words together so beautifully. An incredibly touching and powerful post.

  10. Oh Rachel, this is so good. It has brought me to the “ugly” cry including sobs. You describe this “sick” life so perfectly-the constant struggle just to pick something up like a bag of groceries, the embarrassment of having to use an automated cart at the store. Not being able to stand or hoping people don’t talk to you because you just can’t manage it that day. You hold it all in. The fact that every movement causes pain is just something you don’t talk about. The changes to your body the incontinence-all the humiliations of not being who people think you are or should be. I needed this so much. I needed to let it out for a minute. And there I go-making it about me not you. But it is about you. You are the crack. And we are the ones your light shines on.

    1. No Barbara, it is not just about me. This blog began with the idea that I could chronicle my chronic-ills, so that people might understand invisible illness or find comfort or feel less alone. So it is about YOU too! I love that you share your struggles with me in your comments, it helps me to know you better. It helps me feel less alone in it all too. I am so sorry you deal with all that and I know how tough it can be. You are amazing, the way you carry on, holding it all in. It’s okay to let it out sometimes, too. Thank you for your comment, I appreciate it so much. You make me feel like I am doing the right thing. 🙂

  11. Hi Rachel. I am blown away by this post! It says so eloquently how I feel and have felt since I was 18 when I was diagnosed with Crohn’s Disease. I have been in remission for since 2006 but will always have many of the digestive issues because I’ve had so much of my intestine removed through numerous surgeries. I have the daily fear of having another flare up since the next surgery will probably be an ostomy (bag). It’s so true that people don’t really mean it when they say “How are you?’ and I ALWAYS reply, “I’m fine”, smile, when of course, I’m not. You have inspired me to try and write about my experiences on my blog. Right now I only have pretty pictures and sweet words. That is what half of my life is like – wonderful. It’s the other, Crohn’s Disease, side that I never talk about. Thank you!!! Thank you for your beautiful words, honesty, freedom, and INSPIRATION. Yes, you are inspiring.

    1. Hi Jeanette,
      I am so glad you found me here. 🙂 I think there is a lot of healing and help that can come from writing about our experiences. And I think you’ll find that your words can help other people too. I was really surprised how many people have found their own stories within mine and I feel so privileged to connect and help with my words. Sometimes, you just need someone else’s words to help your loved ones understand. Maybe your words will be the words that help other people explain things to those near and dear to them. I understand your fears about the bag. I look forward to reading your story Jeanette!

  12. Hi Rach – I’m a Rach too! I’m tap-tapping away in bed here, with my dicky back giving me problems this weekend. But nothing like you describe. I have lived with different levels of chronic pain for twenty years, but your descriptions of everyday life sound like my worst days. It sucks, it really does. My heart goes out to you.

    You express yourself so beautifully in your blog. I wish you all the best.


    1. Hi Rach! So sorry to hear about your back. I really don’t know how people with chronic pain manage it. When I have pain I find it so incredibly distracting and grump-inducing. So my heart certainly goes out to you too! Thanks for taking the time to comment, it really means a lot to me. 🙂
      -the other Rach X

  13. Wow Rach,
    Stumbled on this by accident,you always had the words.
    Totally get the undercover thing, healthy people just don’t get it.
    Laughed and cried reading through reading your stories.Some very close to home.
    You are an inspiration not only to us the bent,busted and broken but everybody that faces adversity.

    1. Wow. Thanks Pete, that means a lot. You’ve known me a very long time! I really hope that your latest spare part is being kind to you. I think of you often. I’m really chuffed that you have read my stuff. I really want this to be a place for everybody, not just people like us who are ‘bent and broken’ (love that). We all have our stuff to suffer. Some earlier than others, but i think empathy matters. Kindness matters. Arohanui X

  14. Tears streaming down my face Rach, I have no words for you, I just wish life could be better for you. Did you hubby read this post? I hope so. It sounds like you take so much on board yourself. Big hugs xx

    1. Yes, he reads them all (actually, he likes me to read them to him, before I post, then he can use his power of veto if he wants to, especially if it has something in it related to him!) We talk a lot about everything that is going on. When I wrote this post last year, it was actually the first time I really let it out. When people responded to it, it was the beginning of thinking that maybe I could write things about my experience that might help other people, too. I guess it was the birth of blogging without me realising it at the time. It’s still one of my most popular posts and the most raw. In spite of, and maybe because of everything, life is still wonderful, Lisa. It truly is. I feel grateful every day for the things that are incredible about my life. We none of us ever escape some kind of suffering, so I am working on getting through it the best way I can. Thank you so much for reaching across the ether with your comment. Brings me such comfort to connect with people here. Thanks Lisa.

  15. What a powerful piece. Thank you for sharing. There are only a few people that my daughter can be completely real with when asked the How are you?” Question.
    I was touched by your concern for your kids. You will worry cos you’re their Mum but don’t worry about your health impacting them and the future. I grew up with a Mum who has CFS amongst other things. I’m not going to say that there weren’t tough times but I’m a more empathetic person for the experience. I’m also not stopping at dead end answers from GPs!
    We created family fun and activities that were special to us. If it meant Mum went in a wheelchair we did it that way. If it meant we had a day of rest and quiet activities between adventure days we did that. Life is good when we find gratefulness in the midst of the toughest days.

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