Thursday, October 04 2018
Trigger warning: Talks of mental health, vulnerability
You: How are you?
You: Ok. What's up for today?
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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.
Y: How are you?
Y: Hmm... Do you want to talk?
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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.
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.