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Feeling Ostomistic
Saturday, October 27 2018

This is not a paid advert or collaboration, just me finding a great deal to pass on.

I have tried all year since reading the Barefoot Investor to find savings where I could through reviewing our bills and that with other providers and even had power panels installed through an interest free payment offer.

One of the bills that has been bugging me, is my pet insurance for Dusty, I know many think it is a waste of money to insure your pet but it is something that could help save big costs. With Dusty's breed of cat, we were recommended by a vet nurse to get insurance and go through Pet Plan.

We signed up a policy when he came to live with us going on 2 years ago to this date and at the time the plan was great and affordable at $36 roughtly a month. But once the 12 months were up the policy jumped up, and then up again and now is sitting around the $63 a month, almost doubling and I am no longer feeling confident with our policy. We haven't needed to use it yet but it was a large cost that had doubled for almost no reason.

So I was on Kogan the other night looking for a gift for Russ for Xmas, when I saw an advert for pet insurance and was curious. I was intrigued by the first month free, but also that the plans looked similar to what I was paying currently with Petplan but at a much lower rate. 


^^See, isn't it an adorable advert, I mean effective, but who can resist those eyes! (screen shot of their site)

I signed up and emailed to cancel my petplan and pray that Dusty doesn't get sick and needs a vet, but at least if he does we have cover.

Best of all, it is now only $39 roughly a month instead of $63 and to our budget and pocket that is a big saving!

I am interested in learning more about their mobile and internet plans, 2 years until our contracts are up but never too early to research options.

That is our power reduced, our pet insurance, our car insurance and our home and contents insurances this year, I think I have done well to make a little savings in each policy.

I always feel productive when I have done some adulting, Russ is even happier if it comes in under budget. Or when Xmas comes early...


He was so stoked and keen to stumble across his Xmas gift early from ToyDeals.com.au

Oh and as for Russell's Xmas present (the whole reason I was on Kogan to begin with), I ended up finding it on a different site for $30 cheaper, it arrived on his day off and he opened it and started setting up before I had realised, so now he has his Xmas gift and he loved it. It was a pokemon go lego like (mega construx) and was a big gyuarados (the evolved form of Magicarp) so Russ has been happy. Found it on ToyDeals.com.au for $30 plus post, but still was cheaper than most sites, quick to arrive too (couple of days too). also not a paid mention, just a damn good find!


Russ focussing as he builds his Gyarados

 
The finished Gyrados from ToyDeals.com.au

Crazy that Christmas is so close, it also means that the Share the dignity #itsinthebag promotion is on soon too, better get started on that myself. I am not anywhere near organised this year!

Disclaimer: I was not paid or asked to write about this, I found and paid for this plan myself and thought it was a great buy to pass on to you, always read the PDS to make sure the product is right for you. 

Posted by: Talya AT 01:03 am   |  Permalink   |  Email
Thursday, October 04 2018

Trigger warning: Talks of mental health, vulnerability

You: Hi!

            Me: Hi.

You: How are you?

            Me: Fine.

You: Ok. What's up for today?

            Me: ...

- - - - - - - - - - - - - - - - - - -

I'm sure you would agree that this is, the normal greeting and conversation you would have with most people throughout your day. What purpose does it serve when it is offered by rote, and from both parties? 

There are times when the question might be just a little different and if you stop to think about your response you can create change. Observe.

You: Hi!

               Me: Hi.

Y: How are you?

               Me: Fine.

Y: Hmm... Do you want to talk?

               Me: Umm...

- - - - - - - - - - - - - - - - - - - 
This is when a life can change, your life, and it's totally in your control.

Hi everyone this is Russell, the Ostomistic Husband.

Recently, I had a bit of a breakdown at work. I got there to work okay, but then things just got just a bit too much for me. Luckily, we were made aware that there is easy access to a counselling service available to staff, through our EAP, so I had to sort of bite down on my pride and ask for help.... finally!

This was hard, but the hardest part of the day came next. 

Next, was the call to the counselling service which led to even more of a breakdown, so obviously there was more to it than just a momentary lapse in willpower. Just talking to them about why I was feeling so teary led to finding I was truly angry on the inside, and I realised it was about time that I started opening up for real and sharing these feelings with someone before they became more harmful…. If not only to myself but to others too, and its the least I want.

The tears were because I was really worried about Talya’s declining health; your best friend dying before your eyes, is enough to jerk a tear from even the most hardened macho jerk. I'd gotten to a point where I had to really start opening myself up to someone and letting them in. 

That hurt me because Talya is the most supportive and talkative person I know, yet, I was not letting her in. I know she only wants to get inside my mind further and help me work through this, but I think that I can’t talk to her about how I feel because that would not be me being strong for her. I also know that Talya doesn’t tell me how much pain she’s in all the time because that’s her being strong for me. 

I am so tired of us pushing against each other when we really should be pulling each other closer, so we can rely on each other‘s strength to be able to help us in our time of perceived weakness. The time is now.

The anger itself, was mostly a due to the fact that I can't control everything. I was finding that the more stressed I was getting the more time I'd have to take off work. Missing out on income didn’t help things, we would have to tighten the purse-strings at home for the following weeks as only small paychecks came in. That made things even more stressful so on spiralled everything down towards chaos and I thought, "Enough is enough! I have to man up. I have to deal with what’s going on inside, uncomfortable as it is I must move forward"

I have autism, so it’s hard for me to talk about feelings that I don't fully understand. But, I have to find a way of communicating my internal workings to someone so that they might be able to give me some additional tools to better deal with those feelings. I don’t generally feel emotions all the time, and when I do get them they are usually overwhelming and too powerful and it scares me. 

Unlike most people, I didn't get to learn how to deal with those feelings, in their varying degrees, when I was younger. So when I get some hot emotion it’s just like a huge slap in the face and I don’t know what to do. Actually I do know what to do; I do what most people in my position do, and that is retreat

So usually I retreat inside myself rather than looking for outside help. I think it best to stop talking, I just want to be alone, I just want to suppress those feelings and hope that in time they go away. I need to learn to recognise there are times that I can self heal and there are times that I require external forces to help me to heal.

What I'd been doing up to now was no longer working, so I had to make a change, it was only inevitable. I think that having this counselling service available to me is a lifeline that has been there for me for years, had I just opened my eyes and pride to the service. I know it is going to be a huge benefit to me. I may have the secrets of the universe poured into my open and receptive mind or I may only learn relaxation techniques to help deal with my grief, not just loss but the anticipatory grief too. 

Either way I will be in a better place than before simply because I answered a question posed to me in simple conversation honestly, not automatically.

So basically my message here is if you need help ask for it. If you can’t ask the people that are closest to you then for the sake of your sanity and health ask somebody else. 

Just do yourself a favour and talk to someone, even if you do all the talking and you realise what you need to do without them saying a word. The fact that they’re there means you are not alone and that you’ve opened up to them means you are able to start healing.

I just want all the blokes out there who are carers to someone who is chronically or terminally unwell, that I see you, that I am you and that you are not alone in this brother. We are the forgotten brotherhood in this story but if anything we should rely on each other.

Let’s remove the stigma that it isn’t the blokey thing to speak up about our feelings, but we shouldn’t feel ashamed for when we do cry, it is better than bottling it all in and an avalanche of problems emerging.

Fellas, we need to be the best parts of ourselves so we can be the champions our women need us to be so lets make a pact that we will not go through this alone anymore. Yes, it isn’t us who are sick but we are the ones who are here holding their hand when they are crying, comforting them in their times of need, but we keep neglecting that this is all taking a toll on us too.

The pain at the thought of losing my beautiful wife is all to hard and real but I know I am not the only partner or husband out there who is feeling this anger and loss.

How about I start up a group called "The Ostomistic Husband brotherhood", where it is a fb group you’re welcome to join and share in the times you are struggling and need a little clarity or just need someone who gets it to know you aren’t alone, I won't be available to offer advice or act as a counsellor but should you need somehwere to ask for questions or need a safe space to open up, this will be it.

If you would find this group valuable comment yes under this blog. It is a safe space, men or partners or carers of someone ill or terminal.

I know there isn’t much support for the men and the carers but lets be in that change tonight.

It is only one day at a time that is given, but lets use that day to try and be the change we wish to see in the world.

Please don’t forget you’re not alone, I am you, I see you, I feel you.

About the Author:

Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. 

 

Posted by: The Ostomistic Husband AT 07:46 am   |  Permalink   |  Email
Thursday, July 06 2017
I know I am pretty slack when it comes to updating posts on my blog the last few months, I have been having fun microblogging over at Facebook and Instagram as it has been more convenient to do updates than to do a blog post due to my health (and sleeping 20 hours most days). If you're interested in knowing or understanding more about what goes into a single blog post and why it can take hours to do one post, the wonderful Micheala from Not Another Slippery Dip recently shared an insightful post which you can read by clicking here!

Sometimes ​the internet can be a beautiful and magical place,
I know I have seen the impact and difference that social media and the internet has made to my own life and those around me, but to see complete strangers come together on several occasions this past year to help us is truly heart warming. People whom I only know from their online presence and otherwise would not have met them, have became good friends to me and have helped to create what has been the most amazing 6 months filled with memories and moments I cherish and I hope that they will too for years to come..... this post is just one of those magical moments created!

Background:

So all the way back in March (I told you I've been slack with my posts) was Russ The Ostomistic Husband's 37th birthday! What eventuated from me feeling guilty that I had ruined his birthday actually became one of the most beautiful gestures I have seen from people from all over the world!

On that same day I was being admitted to hospital for a bit of a respite break and to get my pain under control, it had been weeks since I had felt some relief.

Russ had to work that day, so it was a pretty early start for both of us as we packed my bags and Russ got ready for work and dropped me off to the hospital before he headed to work. Thankfully, my room was ready and available (surprised as it was 7.30am) and he helped me to get settled before he left.

But I felt immense guilt, it was his birthday... his day to be spoiled and showered with love. After all he makes me feel loved everyday and especially made sure I knew how much I was loved by others with the gofundme page he set up for my garden, so I wanted him to know just how many people care about him too.  


Russ visiting me in hospital with our furbaby Dusty! High-5!

What came next:

After chatting with my friend Kylie from Kidgredients in the lead up to his birthday, she suggested putting a call out on social media and asking people to write "happy birthday Russ from __insert location here__" and then take a photo of that piece of paper with a little bit of the background.

I went out to dinner with Russ the night before I went into hospital as we both had a free steak from Hogs Breath as our birthday steaks (a part of the frequent diners club you get a steak during your birthday month), so while Russ was at the toilet I took the chance to write my birthday message on a napkin and ran outside to capture it. In the background above is the iconic whale fountain.

What came next from my post was unexepected!

I was blown away by the response and all the thought and love that was being sent my way.

I even felt like I had travelled the world in one whole day, and seeing all the locations - my heart was heavy with love and excitement knowing how happy this made me feel- I knew Russ would feel the same way!

So once all the images were received (there were hundreds!) I then sent them over to Kylie who then turned the collection of images into a video slideshow!!

You can see the video slideshow here!

Sadly, not all could be fitted on the slideshow and if yours didn't appear please don't fret as Russ sat there individually looking at them on my phone for the next hour, so it wasn't forgotten or unseen and he appreciated it so much.

So 5pm came around and shortly after Russ arrived at my hospital room. I then filmed him and his reaction on facebook live, which you can watch below.


Russ loved the beatiful gesture and seeing all the different locations

Russ' response:

Russ sat there re-watching the slideshow a few times and even sat there for a long time scrolling through all the photos. If you couldn't tell from the video above he was in tears. The love he felt and knowing that so many people cared enough to take time out of their busy lives to do this, really meant so much to him.

Russ is one of those amazing guys who does so much for others without hesitation or needing to be asked and he doesn't ask for anything in return. He is the most loving, caring, kind and compassionate person I know: and he deserves to be recognised and rewarded, even if it was just for one day - his birthday - it just meant so much to him.

It is hard most days just knowing how tiring it is for Russ to work full-time and be my carer too, as well as dealing with the rollercoaster ride that is my cancer journey. Some days he is surprisingly strong, but other days he struggles and looks exhausting... it is hard seeing how taxing all this is on him, so I just really wanted him to know how loved and special he is.

I am so grateful to Russ and for everything he does, he is one amazing guy!


Russ is known for his background antics in our photos - here he is licking my hair, don't ask!

Thank you:

I just wanted to say a special thank you again to everyone who made this happen and a special thanks to Kylie from Kidgredients for all the time and love she put into the slideshow for us. Kylie has some delicious recipes on her site, especially for kids and lunchbox foods, even delicious snacks that are easy to make. Be sure to pop by her site - you won't be disapointed!

Kylie, thank you again for this special memory Russ will never forget, and most of all thank you for being one heck of a wonderful woman and friend. You helped me to create something truly magical. 

 

Posted by: Talya AT 08:18 pm   |  Permalink   |  2 Comments  |  Email
Saturday, February 18 2017

One of the ways I got through my teenage years, was with the hope that one day I would meet my prince charming who would make me feel like a princess, his princess. I romanticised every encounter or relationship I had, always invested in that perfect rom-com moment where I fell in love and lived happily ever after.

My friends thought I was just setting myself up for disappointment and yet again heartbrake, where they would be needing to pick up the pieces and glue me back together... my friends were good like that. They also became rather protective of me too.

So fast forward to 2009 (18), where I desperately needed a laptop as mine was drowned in the (then) recent floods and was hard to keep up with the demand of uni assignments when you didn't have a laptop.

I headed into my local electronics store, walking past the door guy who looked more focussed on watching the latest movie that was showing on the massive LCD TV's that were covered with signs that made you think it was a not-to-be-missed sale, never to be repeated. I walked past the out of service vending machines and an independant ATM machine, one of those "we will charge you $2" to proceed types. I walked through the camera and telco departments when I finally found the computer department.

I wasn't sure what to do, since this was my first "big girl" purchase without a parental unit chaperone. I just stood there lost and staring at the 50+ options of laptops in front of me, confused as to what do I do next.

I wasn't standing there long when this salesman approached me. He was fairly tall, which wasn't a hard thing to notice since I am 5 foot 2", was rather skinny and wore an old set of glasses that looked to be 10 years old. He seemed shy, yet when he spoke about computers it was as if he just looked alive with passion; and there was this look in his eyes when he spoke, that you could trust what he is saying as the truth and not just a sales pitch to try and close the sale... he was really genuine and honest.

Even his attire and how he presented himself made me feel he was humble, down to earth and kind of daggy, which I liked; he didn't feel pretentious at all... just genuine what you see is what you get kind of guy and I admired that. He wore a black collared work shirt that had these weird pleats in the side with a yellow panel (I would later learn these were a massive pain in the ass to iron), the jeans he wore were a light denim in colour and he rolled the bottoms of his jeans up so they sat around his ankles.

I had this immediate sense that he cared about the customer, in a way that he didn't want you buying something you didn't need and he kept trying to talk me down from the higher end of scale laptop that I wanted but didn't necessarily need.

However, as a broke and unemployed uni student I thought I would try my luck at financing a laptop since desperate times called for desperate measures. I was falling behind in uni, so I was willing to consider any avenue possible to get a new laptop and get back on track.

So it wasn't very surprising when I was in fact declined for finance, I even went so far as to try EVERY way possible but I was out of luck.

I didn't want to leave empty handed, so I worked up the courage to ask for his number, which without hesitation refused and said something like "it's against store policy as you applied for finance if I were to take your number". I called bullshit, but he still refused.

But I was utterly confused as to why, I felt we had hit it off. We had chatted and laughed for hours while I attempted to finance the laptop, even had our own inside jokes.

There was just something that in all his honesty, that I felt was sexy in a guy... considering every guy I had met to date were douches who were either so focussed on looks and appearances, were the dangerous boy types who were forbidden (which made them more attractive), were the sporty jock types who prioritised their sports over your relationship, or the mum's boy types.... so it was rather refreshing, and a welcomed adventure when I encountered this kind, funny, considerate, nerdy and genuine guy.

But it ended there.

For the next 3 months I would try and utilise the shared computers at university and applying for credit cards or scholarships to try and help me to fund the laptop, but often I would be waiting for a long time for my turn for the computer in a line.

When I did win a scholarship at the begin of semester 2 I dreaded the thought of returning to the store and in the event that the sales guy remembered me it would be so humiliating. So I decided to dye my hair a purple/burgundy colour and to cut it really short in the hopes that he wouldn't recognise me.

I felt so confident and headed into the store, meandered the recognised path towards the computer department and was rounding the corner into the IT section when he saw me. Instantly dreading this and realising it would be rude if I just pretended I didn't see him, I walked towards him and smiled.

He smiled back and said "It's Talya, right?". Muttering a few curses, I replied "Umm yes, it is". He continued by saying "I told myself if you ever returned that I would get your number, I have regretted it every day since".

So that time I actually left with my intended laptop, his number and the hope that maybe this dream of falling in love might come true afterall.

Just like any rom-com movie it isn't always smooth sailing and theres a few bumps along the way, often tragedies, that can bring two people closer together or can tear them apart... and that has been our story, one heck of an epic love story that should really become a feature film.

We started dating knowing full well that a month later I would be having my first brain surgery, which led to multiple surgies and a 3 month hospital stay and also our engagement at just 3 months together.

On our 12 month anniversary we were married, it was an intimate gathering and budget friendly, but it was also simple in the way that there was no fuss and it was a low-key affair surrounded by those we love dearly. It was a day where we wanted it to be just about us.

But we have faced our fair share of loss and stress: misscarriage; diagnosis of my dad's cancer and learning I inherited the gene; being held up at work and struggling to come to terms with anxiety and a diagnosis of borderline personality disorder; finding out that I have severe stage IV endometriosis and as a result I am unable to have children; a week later learning at 21, I have early stage bowel cancer and would need surgery to remove my bowel; months later had surgery and my first ileostomy surgery was had, survived being close to deat and learned to adapt to life with a stoma; getting severe recurrent pancreatitis rendering me in hospital for the next 12 months; discovering a large tumour where my bowel used to be; thyroid cancer and subsequent thyroidectomy, again close to dying; learned I now had another tumour that was growing rather quickly; started chemotherapy and spent more time in hospital which led to tumour needing to be removed as it was dead and my body was decaying; resuming chemo; learning I had 2 large blood clots; a new tumour discovered on my ovaries; chemo stopped and entered palliative care.

I am sitting here in tears, as I have been moreso the last 6 months, as I just don't know if Russ is going to be okay.

Russ has autism and if it has taught me anything in our relationship of 8 years is that he doesn't cope with change well. We moved house and it took me 12 months of building him up for it as change is unsettling for him, he is only just settling in with his new routine and it has been 5 months. He even had his learners for 20 years and got his p's last year and I was so incredibly proud of him, it gave him independance and took a lot of pressure off from me and meant that I can focus on my pain management and not needing to worry about driving.

He told me recently that he is so proud of himself and that he appreciated me being patient over the years to research how to help and encourage him to embrace change. I read up on autism parenting blogs to help, even though he was an adult I found some of their advice helped me.... I learned patience and to try and do things differently.

He also doesn't cope with his emotions very well, he struggles understanding what to do with them and death usually leads him to shutting himself out from the world. He doesn't know how to deal with what he is feeling and as a result can lash out or just become more recluse than he already is... I saw this when my dad died.

I have started studying counselling so I can learn coping mechanisms to teach him, I know he won't be okay as much as I wished he would be, but I am trying my best to help him.

It's rather upsetting and stressful feeling all this guilt that I have, that we have built the most incredible lives together and lived the most epic love story and it is going to come to an end. I worry about him financially and if he can manage.

He conversed with his boss yesterday about what happens in the end when he needs time to grieve what is available. He has been so worried that he might not be ready to return so quickly after my death because he has no more leave and would take leave without pay and as a result would not be able to pay the mortgage... and he has been rather anxious about all this.

So I spent so much of last night crying, because I feel guilty.

I feel guilty that he is having to worry about all this, that he has limited time to grieve before having to pull himself together to go back to working, all because I didn't have life insurance. It is one of my deepest regrets and I feel like I am irresponsible as a result. I only have under $3k in super too. Even on our homeloan the bank wouldn't cover me with insurance, 'cause terminal cancer and all the credit cards are in his name not mine so that won't even be a relief.... it is such a worry and stress.

I just hope he will have support, I imagine he will in the initial week, but I worry what will happen after that. 
I just hope he will always know how much I love him and that he will be okay financially and emotionally...
I just hope I haven't ruined his life.
I just hope he doesn't resent me for putting him through this.
I just hope that he will be happy again.
I just hope he know just how much he is loved and appreciated.
I just hope that he knows he makes me proud.

Posted by: Talya AT 12:27 pm   |  Permalink   |  0 Comments  |  Email
Monday, September 05 2016

Russell, a.k.a The Ostomistic Husband, has a second blog post or an open letter that he wanted to share with you.

While you might have only said this to us once or twice, and you might not mean anything more than just a compliment, but you are more than likely not the first person that has made that comment to us today. Everyday we are faced with these comments and it is making Russ rather upset as he wonders what do people actually expect of him.

And worst, is that this is how society expects men to behave, that they can't commit and that they won't stick around when shit gets real. Russ is a modern man, and a man true to his word.

☟  ☟  ☟  ☟  ☟  ☟

My open letter to those who continually say "you're a good guy for sticking around" or those who continually say to Talya, “Russell is a good bloke for sticking with you through all this…”, I have the following to state:

I’m not sure how often you’ve heard that little gem, but I’d really like to open people’s eyes to how I feel when they say it without obviously thinking it through.

I’ve been with Talya for 7 years now, and she’s progressed through varying stages of unwell since I first met her; I proposed to her in her hospital bed while recovering from brain surgery (with a golden staph infection on her brain) for Christ’s sake.

I know I’m not going anywhere.

The thought that I could leave only occurs to me when you tell me I’m good for not leaving. Talya knows I’m not going anywhere (I tell her often enough), but she starts to wonder when she keeps hearing, “Russ is good for sticking around” which her inner voice relays as, “I’m a massive burden so why should Russ want to stay?”

Love:
Talya and I have a connection that may only come once in a lifetime.

Why would I want to give up on that just because Talya can’t go for a walk with me? We have access to a wheelchair now so we can still wander through the botanical gardens.

Why would I leave just because she can’t cook or clean? What is this, the 1950’s? Those are basic life skills everyone should learn, man or woman.

Why would I deny myself the true pleasure of simply seeing her smile when I come home from work? That is the highlight of my day. Every day.

Commitment:
I vowed to be there in sickness and in health. That was a promise I made in front of our friends and families, but more importantly, one that I made to her.

We are only as good as our word. I gave her mine, she gave me her heart.

Forever:
I have stuck around because she is worth every second I can give her. I will continue to be by her side until she becomes the angel she’s always been inside.

And you’re right, I am a good bloke......

Because I met her!

About the Author:

Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.

*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Russell AT 07:26 am   |  Permalink   |  3 Comments  |  Email
Friday, August 26 2016

Today, and as it seems a lot lately, I am constantly met with doubt and disbelief when I share my story/prognosis or the fact that I am 25 and terminal with cancer. It almost always makes me feel like people assume that I am making it up.

For the past year my husband and I have been working on a new segment/section of my blog called 'The Ostomistic Husband' which will be posts and topics written by him and in the hopes of showing the perspective of how a spouse feels or views their loved one's illness. 

So, take it away Russ!

☟  ☟  ☟  ☟  ☟  ☟  

All too often I have Talya tell me how annoyed and upset she is because someone has just told her, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.

I’m sure you have heard the same from someone you know with an illness; it seems to be all too common.

I myself believe I have a mild autism which makes me: crave routine; shy away from human interaction; find it difficult to create and nurture relationships as I don’t readily say what I feel inside; have processing issues regarding certain tactile sensations, etc.

These things are not visibly apparent and are not easily discernible even when you are interacting with me.

Why? Because I’ve spent a LOT of time learning how to go about my day, to fit in without drawing attention to myself unless I feel safe to do so. As such, it pains me to hear that Talya is being judged by her outward appearances and not by the effort she makes to display her frightening lifestyle in a manner palatable for those around her. She is always trying to alleviate others…

Fear.

I think that is probably the major force behind the “You don’t look like you’re dying of cancer so it mustn’t be that bad” line.

No-one wants to admit that a young person as outwardly vivacious and spirited as Talya could be dying inside, because that means that they too, may have something as monstrous within them (and not show any signs).

After all, they look fine. Don’t they?

Talya and I see this very differently.

She feels that people are constantly attacking her; sometimes bluntly and sometimes in a back-handed way.

I feel that people are constantly protecting themselves; outright denying the facts about her health (in fear for their own mortality) or suggesting that it can’t be as bad as all that (simply hoping that it could be true, were they in that position).

People don’t want to accept change, they are afraid of the unknown. I get that, more than most.

In the private studies I’ve made on human nature, and by simply watching people react to a situation then react to their own reaction, I believe that people are generally afraid inside (and what a perfect evolutionary trait in self-preservation that is). Some have learnt to deal with that most primal of instincts internally, while others still say, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.

All in all, I feel for Talya a great deal in the aforesaid circumstances but I remind her that she is simply better at hiding her pain than some others are at dealing with their fear.

I say, “If they want to blurt out hurtful statements, without understanding what you are going through, to make themselves feel better, that’s on them, not you. But please, see it from their point of view too”.

No-one wants to live in fear.

 

About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.

*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Russell AT 02:12 am   |  Permalink   |  2 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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