First short story published as an e-book on Amazon

So my foray into freelance journalism didn’t last long. I was hospitalised for a few weeks shortly after my last published article and in the chaos of that combined with starting back at work full-time soon after I simply forgot to keep writing articles. However, I’m hoping that Soo Today will forgive my transgressions and start publishing my articles again once I provide them.

In the interim though I have achieved another milestone. My first short story “Hannah’s Heart” has just been published on Amazon as an e-book. You can find it here.

I doubt that it will make me rich but it’s nice to see something other than my text books on my author’s page.

I’ve also finished the draft of my first book. It’s currently out for review with publishers. However, I may just publish it myself on Amazon as it is relatively easy to do so in both e-Book and paperback formats. So watch this space….

Hey, guess what? The internet is public!!

In the past week it has been very bemusing to me to find that people believe that the Internet is the whole story. Even people who know me well, and know that I am well aware that anything posted on the Internet will exist forever; seem to assume that I would be posting the full details of my health and current situation.

A blog is for sharing thoughts and ideas. It’s not, in my mind, an appropriate place for explicit details.

My posts will never include anything about myself that I am not comfortable sharing totally publicly. Whether that’s to protect my privacy or that of others.

Just in case you haven’t realised it – the Internet is public! Anything posted on it, even in a private Facebook group, is accessible by others.  It’s also permanent. There is no way to completely delete anything posted ever.

You might make it much harder for people to find. You might make it so that they have to know it’s there to look for it. However, search engines are constantly archiving and indexing content.

As an example, there are sites that have information on them relating to past positions that I have held, or papers and talks that I have given at conferences, that hold out-of-date contact information on me. It’s impossible for me to get these corrected or updated.

Partly, this is because those sites are old and the people who used to manage the content are no longer in those positions or don’t have access to the sites anymore in terms of changing the content.

Sometimes, it’s more that they are an historical archive. The problem is that people aren’t great at dating everything on the Internet.

Therefore, if you search for my full name you will find current information as well as old information regarding my academic affiliations. For those that don’t actually know me it can be hard for people to find the current data.

Hopefully, people who know me in real life will also know my current affiliations which will help them narrow their search focus or they’ll be connected with me on LinkedIn which I do keep current.

Anyway, my point is – please don’t forget that the Internet is only ever one facet of a person’s character and personality. It’s the facet of themselves that they’re willing to make fully public whether intentionally or inadvertently.

Some people like to share the minute details of their day down to what they eat at every meal. For many of us though the Internet is a means of communication. It presents part of a story and not the whole.

To understand the whole, you need to spend time with the real person, and have a shared understanding. There needs to be communication and dialogue. This can be mediated by technology and doesn’t always have to be in person, but there’s nothing quite like being able to watch somebody’s face as they speak to understand the nuances and meanings of what’s being said.

As somebody who reveres honesty I didn’t join Facebook for many years and even then I initially had a very simple account. Over time, and with being housebound now or months, I am more involved and active on Facebook than I was.

However, I will still not post anything that I don’t want to be public, even in private groups. There are too many stories of people breaking the ‘rules’ and sharing things outside of the group. Further, Facebook itself can always see anything I post. So I limit my posts on Facebook.

I have a limited Twitter account. I do use LinkedIn to keep my professional colleagues informed as to how to contact me. Beyond that, this Blog is a place for me to experiment with my non-academic writing.

As such, writers are challenged to write from what they know. So at times, my Blog includes personal information such as issues with my health or my wishes for my life like my Bucket List posts.

However, if you want to know ‘Me’ – you need to talk to ‘me’ and not just base your conclusions and understanding of me on one representation of a facet of my personality.

My Blog gives you a peep at who I am. It will never tell you the whole story.

I struggled this week with whether or not this is dishonest. I’m still debating that. Is it better to have a public presence and this forum to explore my non-academic writing in? Or should I delete (as much as possible) all online presence because others can’t distinguish between an online view on who I am and the reality?

It’s not that my online presence is a lie or a distortion of me. I’m not pretending to be a slim 20 something blonde; I am what I am. It’s just that online I will only ever present part of who I am.

I’ll only ever discuss aspects of my health saga and situation. Sometimes that’s because I do try and look at things as positively as possible and if I posted the full story it would often be far too depressing to write, let alone for others to read! At other times, it’s simply to protect my own privacy, or others.

I guess what I’m saying is to be careful. Don’t assume that you ‘know’ somebody based on the Internet alone. Remember that people don’t know the real ‘you’ based on what you post alone. We are rich, complex human beings with many facets to our personalities and constantly changing as we go through life.

I am not the same person today that I was yesterday or that I will be tomorrow. I think that’s a good thing. However, the Internet is static. It’s a series of snapshots of specific points in time.

It’s interesting even now to go back and see what I posted 6 months ago when I posted this Blog and to think about how I’d write it today. Some things would be identical. Others, I’d now approach very differently.

However, you wouldn’t know that by just reading my posts. You’d only know that by being in relationship with me.

So I ask you to remember, that if you’re reading my Blog I appreciate you, I thank you for your time, but please remember that you don’t know ‘Me’ based on this alone.

 

Aggressive, passive or assertive? Sometimes we just need to mind our own business

I’m a member of a number of different Facebook support groups. They tend to be in one of three areas: service dog handlers and dog training (either general dog training or training service dogs specifically), invisible disabilities and more recently writing groups.

Each, are established initially by an individual, or a group of people, with a vision of an online support group. They set the rules and boundaries for discussion and activities within their groups and they moderate the content on a daily basis.

Something that I’ve noticed, though, is that regardless of the focus of the group, some are regularly caught up in some form of drama.

It’s how that drama then plays out that I find fascinating.

Within the service dog community, we see a lot of judgment and ‘Service Dog Police’. That is that people decide for themselves what is allowed in terms of the behaviour, size, age or training of a service dog and then take it upon themselves to berate anybody who doesn’t conform to their expectations. Oddly, enough these ‘police’ rarely know the actual laws that apply to the situation themselves and are often the first to make excuses if they are called out on something themselves.

I would typify these people as tending towards being aggressive in the way that they address such situations.

Then we have the invisible disabilities group. Within this group, people tend to take offence easily. Their disabilities often being used as an excuse for poor manners. Ironically, the person that ‘offended’ them initially has disabilities too – that’s the nature of these groups.

Here we see a lot of  “I’m leaving” posts which remind me of toddlers having tantrums, packing a bag and leaving home only to make it to the end of their own driveway. It’s not that they really want to leave, but rather that they simply want somebody to ask them to stay.

In general people in these groups tend towards being passive aggressive in the way that they deal with conflict. It’s about inducing guilt and shame in others.

The last group is the writing group. Here we see all kinds of people and all kinds of reactions. In general, though, people tend to not tolerate the aggressive or passive nature of posts seen in the other two communities. These are quickly weaned out and in their place we see more assertiveness.

Perhaps it’s the fact that writers tend to have better command of the written word? Perhaps  it’s just the nature of these groups and how they are moderated?

Regardless of the community, or how they deal with conflict, one thing that I have seen in common across all the groups is an inability to just mind their own business!

It might be a post in the writing group that is about somebody’s faith. Immediately it’s a religious debate and the author is proselytising as opposed to the author just simply posting their writing for comment and review, just as dozens of other people do all day, every day.

In the Service Dog (SD) community a handler posts about having taken their Service Dog in Training (SDiT) to a zoo or amusement park at a young age. Immediately they are irresponsible handlers and are going to ruin their dog. Rarely does anybody even ask how the handler was managing the situation or the temperament of their dog.

I’ve taken Kai places that I’d never have taken Topaz at the same age, and vice versa. They are different dogs and as their owner/handler I know what they can handle, what I can handle, and always have a back-up plan. The majority of handlers will. Yet so often, people just assume the worst of others.

Then we come to the posts where people are describing situations that they have encountered with their disabilities, service dogs, or writing and I can’t believe that they didn’t just walk away.

Whether it’s an employee in a shop harassing a SD team by insisting that they want to play with the dog, or a writer engaging in extensive debate on whether or not somebody’s critique was mean or helpful.

What happened to just minding our own business?

If somebody is harassing your Service Dog, then move – walk away. Don’t allow it to happen.

If somebody posts something that offends you, because you find any mention of God offensive, then just don’t read the post.

If a post troubles you because of how they’re dealing with their specific disability then let it go.

It’s not up to you to determine if they should be using a wheelchair or not, that’s between the individual and their care team.

If somebody posts something that suggests that they are poorly informed regarding the law then kindly point them in the right direction. If they listen, fantastic. If not, move on by.

When did we become so judgmental?

When did this become acceptable?

What happened to the old expression?

“If you don’t have something nice to say, don’t say anything at all”

When did this increasingly pervasive sense of entitlement mean that we have the right to judge and treat others with anything less than respect?

It bothers me that the people who judge the disabled the most, are other disabled people.

It bothers me that the people that criticise other Service Dog handlers the most are other Service Dog handlers.

It bothers me that the people who tear another’s writing apart with tenacious maliciousness are other writers.

Yet, by being bothered am I falling into the same trap?

Am I paying more attention to what others are doing and judging their actions than I am to my own affairs?

So perhaps, I’m really speaking to myself today.

I’ve left many of the groups that I initially joined because of the sheer amount of drama allowed within them.

I remain in others because the support that they do provide can be invaluable.

Some of the discussions in these groups provide new insights, new suggestions on how to address specific issues or difficulties and add a lot of value to my life.

I’ve made some great friends through these groups who have become friends in the real world as well.

Others remain online friends with all the caution that goes with that but doesn’t lessen their value in any way.

However, I think that I need to practice what I’m suggesting even more than I already do.

When there is a posting that bothers me – I need to just move on by.

Hide it if necessary.

Block the original poster if necessary.

It only takes a few seconds to do.

Hopefully, I will find that by increasingly minding my own business that I will be able to find greater peace.

My first Blog as a non-academic author.

So I’m currently off work struggling to breathe. Life is looking very short as a result. I’m facing my 45th birthday in a matter of weeks and I’ve spent my entire life dealing with different health issues.

Ironically, despite having some pretty rare conditions (which I’ll talk about another time) it looks like it’s going to be something as simple as an orange based cleaner that’s curtailing my adventures through life.

On May 11th 2016 I had a massive anaphylactic reaction. I’ve experienced anaphylaxis before but this was faster than any I’ve ever had before. So fast, that I couldn’t either get away from the trigger or self-inject my Epi Pens.

Thankfully, I was in my doctor’s waiting room at the time and my doctor was able to assist me. Medication, oxygen, an ambulance ride, several hours in ER and I’m sent home to recover. Bizarrely I’m safer at home than I am in the hospital.

My exposure was to an orange product. Somebody just didn’t think and sprayed a citrus based cleaner/air freshener right behind my head. This was in a scent free building; an office building dedicated to health care. Yet somehow, the fact that it was a “natural” product led this person to think that it would be OK.

I nearly died. Anaphylaxis can cause death in less than 15 minutes. A biphasic (secondary) reaction can happen several hours later and also cause death.

In one of the few places that I didn’t think that I needed to be hyper-vigilant I found out that I did. I’m used to watching for somebody starting to peel an orange or squeezing lemon or lime into a drink or onto their food. I can smell citrus at great distances. Usually, I can move away from the exposure and ask somebody else to remove it for me, if I can’t leave completely. This time it was in an aerosol. I had no chance.

My skin starts to get itchy, my service dog is acting up and starting to pull at me but my brain isn’t working quickly enough already to connect his behaviour with what’s happening. I’m coughing and gasping for air. People are looking – they’re asking if I need water – I think… I’m deaf… I can’t watch faces closely enough to ‘hear’ them… I need help. Now!

People are panicking. I’m still trying to get enough words out to explain while trying to get my Epi Pen out of it’s case. It’s been less than 2 minutes and I’m already shaking too much to self-inject. I’m going to die. The thought makes me laugh; which doesn’t help.

I’ve lived through multiple car accidents, severe trauma, lived with life threatening conditions my whole life and here I am, dying due to an orange!

My doctor hears the commotion and thankfully realizes the problem; pulling me through the doorway as I’m collapsing on the floor. My dog, my gorgeous Kai, is concerned and trying to help. He’s not.

I’m trying to get a hand free to signal him at the same time that my doctor finally gets that shot in my leg! Kai obeys. He sits and watches closely. He stops trying to put pressure on my chest. He’s trained to place his weight on the places where I have pain. He’d never been through this with me before so he was doing what he knew.

Staff are calling 911. Patients are concerned. I’m on oxygen now and a monitor for my heart and oxygen levels. My oxygen levels are low – vey low. My heart rate is high – very high. Finally manage to get the word “orange” out and my doctor starts asking people about oranges. Somebody brings over a can – it was an aerosol of some form. They can’t remove the exposure. It’s now in the air. No choice but the ER for me. More medication – full on asthma attack now.

Paramedics arrive. They can’t get their monitors to work. No breath to explain that it’s a common problem. They check my vitals again with my doctor’s equipment and get me up on the bed. Kai jumps up too and snuggles in for the ride. Somebody gathers my purse and the used Epi pens and inhalers and adds them to the bed… we’re on our way.

Downstairs and in the back of the ambulance now. They need to get me stabilized before leaving for the hospital. I should be doing better, now that I’m away from the exposure. I’m not. Can’t get the IV in the first hand. Let’s try the other. Oxygen mask slipping. More inhalers needed. Finally the IV goes in and the paramedic starts infusing liquid antihistamines. It’s cold as it threads up my arm. Leaning forwards. Can’t lie back as I can’t breathe then… Must use my back muscles to force air out of my lungs. I know how to do this. Breath in and out, as so through a straw. Coughing again. More inhalers. The ambulance moves off. No lights or sirens today.

On route; more inhalers needed. Getting dizzy and light headed now from the amount of medication now in my system. This is on top of the amount I take daily to just live in a world that is inherently unsafe for me.

On arrival at ER the paramedics get me registered. A nurse helps me change into a gown and they hook up the heart monitors. Once again they don’t work initially. Still can’t explain that this is usual for me.

The nurses are great with Kai. We’d not trained for this yet. My last Service Dog (SD) had been to the ER with me several times in non emergency situations; had been exposed to paramedics and all other emergency response people and been in and out of ambulances and fire trucks. I hadn’t had chance to do this with Kai yet.

Kai jumps off the bed and stays with a nurse while they get me changed. He’s watching closely. As soon as he’s given permission he’s back up on the bed with me. He’s not impressed with all the cables and needles now connected to me. Are they painful? He sniffs at them, sniffs at me, and somehow he knows… we’re going to be OK.

He turns round, snuggles down and relaxes completely hooking his front paws around my arm. His calmness helps me calm down. The panic response in me starts to calm down. My breathing starts to respond to the medications better. My heart is still not doing so well but it’s not getting worse either.

All those hours of teaching Kai to be calm are paying off. He’s calm. My world will be OK. Nurses come and go checking on me. They’re monitoring me closely in case of a secondary reaction. They’re having a horrendous day in the ER. I give permission for several nurses to pet Kai; it helps them and it helps me reinforce to him that the ER is a good space where people are helping me. I’m so proud of the fact that they all asked permission first. So many people assume that they can pet a service dog, without asking, which puts many handler’s life at risk.

Several hours later and the doctor comes to discuss next steps. I can stay and be monitored or, if I live close enough to the hospital, I can go home. We agree that I’m safer at home at this point. I’ve already seen a nurse with lemon in a diffuser water bottle. I can’t risk being exposed to citrus again today. I’m safer at home. I text a friend and she comes to take Kai and I home.

At first it doesn’t seem like such a big deal. It was an allergic reaction. I’ve had them before. But over the next few days I don’t recover properly. I have to miss teaching a class and get a colleague to cover for me. I re-plan my last few classes so that I’m talking less. I’m not doing so well. I’ve taken one course of high dose steroids. My doctor follows that with a tapered course. I’m still not doing so well. Classes are finished. Just marking to do. I can do that from home. I stay home as much as possible. Reduce as much risk as possible.

Still not doing so well. I’m struggling emotionally too. How do I deal with the fact that one minute I’m dying and a few hours later I’m going home from hospital as so everything is OK? – it’s not!

We try increasing my usual medications. Doesn’t help. Another course of steroids, another tapered course. Sleep, always an issue, has long gone.

June 16th 2016. Up at 4am to let the dogs out. (I have a pet dog too). As we come back in Kai is alerting to the fact that I need to sit down, now, and take my inhalers. I’m not responding quickly enough for him. He escalates his alerts, just as he’s trained to do. Unfortunately just as I finally sit down he jumps up to put his paws on my shoulders. We butt heads! I see stars! Literally – it’s true, not just a cartoon effect. I felt it go. My nose is broken. I have a long, long history of broken bones. I can’t put this one right myself.

Make up the Kongs, crate the dogs and head to the ER for the second time in a month. It’s 4:30am and they’re suspicious of my ‘story’ about my dog hitting me. Perhaps I should have brought him with me?

In the knowledge that I needed my nose reducing fast and that I might be needing surgery I left him home. I have the right to have him with me anywhere anybody can go in street clothes; as long as I can see to his needs myself. As a team though, I need to consider his needs as well as mine. The ER will be quiet at that time in the morning. If they need to operate on me he’ll need to be taken home. If I leave him home, my friend (and back-up handler for him) can go get him and bring him in later if needed. So I left him home.

I reassure the staff again that, on this occasion, I wasn’t the victim of abuse or domestic violence. (Where were those questions in my past?).

The doctor listens to me! He listens to my explanation of my medical conditions and why I’d prefer that he reduce it immediately if possible rather than surgically. He agrees that it would be best. A number of very painful injections later and we both cringe as he manipulates the pieces back into place with a definite sound. He looks at photos of me from my phone to see if we’re somewhere close to what it looked like before (Note to self – make sure to have a good straight on photo on my phone in the future). We discuss management and when to go back to hospital. I go home, let the dogs out again, email in my apologies to work once more and try to sleep.

The doctor did a great job with my nose. The bruising is minimal; the swelling isn’t bad and ice is helping. The pain is bearable… but then again that’s relative when you live with pain everyday anyway. I work from home and postpone what I have to. I’m still struggling to breath.

Back at the doctors and we continue the steroids again. Add in new referrals to the asthma clinic, the local specialist as well as the one that just comes to our community every few weeks. I’m signed off work.

The heat isn’t helping. Late 20’s and it’s hot and humid, especially for northern Ontario, Canada. I get a call from the asthma clinic; can I come in straight away as they’ve had a cancellation. Trying to make out what they’re saying on the amplified phone is like hearing under water at the best of times. I can’t hear much past my own struggle to breath. Somehow we manage to agree that I’ll head straight in.

I leave Kai home again. I don”t have the energy to explain that I have the right to have him with me and, God knows, I don’t want to expose anybody else to their allergens. However, he is a standard poodle so he’s a very low allergen risk. He will go with me another time. The staff aren’t usually the problem – it’s other patients. I don’t have the energy.

I get to the clinic and just driving 2 minutes has triggered a full asthma attack again. The receptionist works out who I am! I take my inhalers and recover as much as possible.

The asthma educator comes and gets me. Between coughs and wheezes I explain the situation. We review my medications. I’m maxed out. I try and provide a spirometer reading but can’t exhale long enough. She suggests that a COPD medication might help and will fax my doctor’s office for a prescription. We agree that I’ll return to the high dose steroids rather than continue tapering. The asthma/allergy specialist offices calls while I’m with her and she kindly takes the call for me. An appointment is set for Tuesday.

We agree the protocol for when I need to go to the hospital. She insists that I use 911 and not take myself! Thankfully I now have text 911 set up. I make my way home and it takes me the rest of the day to recover.

2 days later and I’m still struggling to breath. I can’t walk more than a few feet without having to stop. I can’t talk without coughing. I can’t lie flat without coughing. Sleep comes and goes. 8-9am seems to be the only time I actually sleep at all. Why then? I don’t know. Usually mornings are my good time.

I’ve now been pretty sedentary for several weeks. Almost totally so for the last week. My iPhone steps is recording less than 175 steps a day, instead of the 8-10,000 that I usually try and maintain. My joints are seizing up with the lack of movement. I try and exercise gently but that triggers coughing again. Breathing has to come first just now. Pain levels are ridiculous.

My home is set up for an old lady. I have night lights everywhere. Nothing on the floor for me to trip over. I need handrails to even use the toilet. My shower is a walk-in with a seat. All this has been helpful before; now it’s essential. I’m so tired.

Tuesday. It’s now Sunday night. I have to get to Tuesday before I see the specialist and hopefully he’ll be able to help me. I can see my world getting smaller in front of me. My mum checks in by email. There’s nothing she can do. A friend kindly drops off some gluten free bread from the farmers market for me. She delivers it to my garage as I can’t risk spending time with her. I can’t talk anyway but neither can I risk exposure to any scents/perfumes/smoke she carries with her. Another friend drops off a treat – coke 🙂 I’m gaining weight – I’m doing nothing but sitting, watching Netflix, reading Facebook and eating.

Something needs to change. Another friend texts me from Alberta where she’s recovering from knee replacement surgery. She sends me links to writing fiction and suggests a number of funny story lines based on the farce that is my life. She knows me well.

A friend on Facebook, a published fiction author, posts a link that was first posted in a Facebook group for writers. I join it. Somebody posts a challenge: Using 6 words only, make someone’s day.

I post “Oh my God, I can breathe!”

I pray to God that soon that phrase is something I can say, without coughing and wheezing, and that it will make my day.

I watch as others post their responses. Other challenges are posted. It makes me think. What’s stopping me from writing?

Hopefully we’ll get to the bottom of what’s causing my breathing difficulties and I’ll be back at work soon where I’ll continue to publish academically. I’ll also continue to write for the general public about my work in ways that are understandable and I love it. I’ll teach my students to write in different styles and voices.

Despite all this though, there’s still a voice inside of me that’s crying out to be heard.

For years I’ve thought… when I’m on sabbatical I’ll start writing then… when I’m on holiday… once this, once that…. always some time in the future…

Then it hits me. To be a writer, one just has to write.

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