Deafness is a continuum…. it’s not all or nothing.

As I’ve mentioned before, I’m deaf. I intentionally use the term ‘deaf’ rather than hearing impaired, hard of hearing or Deaf. I’ll explain why in a moment, but first let me explain what the difference is between the terms:

Deaf, with a capital ‘D’ refers to people who are born Deaf, or become so prelingual (before they can speak, usually this means before 12 months of age).

Nyle DiMarco is probably one of the most well known Deaf people  today following his winning both America’s Next Top Model Cycle 22 and Dancing With The Stars Season 22.

Hearing impaired, in contrast, is usually how the hearing community describe people with a hearing loss. As so we’re missing something, that we’ve lost it and that we’re not ‘normal’ as a result.

Hard of hearing is kind of in the middle. It describes the reality but doesn’t fully identify with either the Deaf or Hearing cultural perspectives on deafness.

The term ‘deaf’ is usually used by those of us who have accepted our deafness, but were late deafened (post lingual) and/or have a progressive loss.

It’s not to say that we don’t have any residual hearing but that we’ve accepted having little, to no, hearing.

Deaf, deaf, hard of hearing or hearing impaired – we may, or may not, choose to use devices such as hearing aids, cochlear implants (CI) or bone anchored hearing aids (BAHA). They also may be completely useless and not viable options for us too.

Some of us have progressive loss and some us have loss that literally can be different day by day/ moment by moment. I can wake up one morning with no hearing at all and that day, my hearing aids will make no difference whatsoever. Other days they make a big difference.

So why do I personally use the term ‘deaf’. I use it because I have accepted my deafness but also because it helps me. If I say I’m hearing impaired the onus is on me to communicate. When I say that I’m deaf most people take the time to ask me about the best way of communicating with me and make sure that I can see them. So I use the term deaf.

I have a progressive hearing loss. It was first identified when I was a toddler. If my mother called to me from behind me I wouldn’t answer. Once she worked out that I wasn’t just being disobedient it quickly became apparent that my hearing wasn’t quite right.

I spent my childhood in regular visits to audiology and Ear, Nose & Throat (ENT) specialists. I had grommets/tubes surgery on several occasions which is designed to equal up the pressure on either side of the eardrum; though usually they’d get me under the anaesthesia only to find that there wasn’t a fluid imbalance and they weren’t needed!

Unfortunately, I also broke my nose on a number of occasions which also required surgery. My mother has many ‘happy’ memories of sitting at my hospital bedside marking her students work, or writing their report cards, while I recovered from various surgeries.

As a result of trying different devices I now have a highly amplified phone at home and in my office; which as long as I use it with my hearing aids, and in speaker mode, and know what the conversation is about – I can get by. Just!

I was born and raised in England and so the school system is slightly different there in that you go up to Secondary School (High School) at the age of 11. My last year of junior school I’d struggled a great deal more than in the past so the summer before I went to secondary school I had my first hearing aid fitted; in my worse ear, which was my left.

I also had braces and glasses fitted and a baby sister born in the same week!

Anyway, I wore one hearing aid for the next few years and learned how to advocate for myself. I learned to make sure that I always had spare batteries, and the school office kindly kept spare batteries for me too. I learned to make sure that I was always sat in class so that I could see the teacher’s face and most of the students’ faces too.

Basically, I learned to ‘pass’.

My school, Townsend Church of England School, was partnered with Heathlands School for Deaf Children. While some of the deaf children came to Townsend to be integrated in mainstream classes, I went the other way. I was mainstreamed and attended Heathlands several times a week. Initially I went for work experience as I planned to be a junior school music teacher at that age.

However, once there the school recognised that I was having some issues and had me attend speech and language therapy as well.

Heathlands, to this day, promotes all forms of communication including spoken language as well as British Sign Language (Yes, BSL is very different to American Sign Language).

As a result, while I speak very softly, as I ‘hear’ my own voice inside my head as much louder than it is heard by others, I speak well and don’t have a typical ‘deaf’ accent.

However, I have never truly heard more than about 20-50% of what’s actually being said to me.

I guess!

I take the parts of the words that I hear, and I make up the rest, and I’m very accurate.

Once in a while I get in a mess. Usually because I’ve missed the context of a conversation and while the conversation itself made total sense to me, I was actually talking about a completely different subject to that of the person I was talking with.

I speech read. That means that I don’t just lip read but that I watch your whole body, your demeanor and mannerisms to give me clues as to what you’re saying.

Once again my test results are confusing for health professionals. I now have a severe hearing loss. However, I still score over 90% on word recognition.

The most likely reason for this is that I am a reader. I learned to read as a very young child. In fact, I was reading books before I started school at the age of 4. I remain an avid reader to this day.

As a result I have an extensive vocabulary and therefore have a huge lexicon of words to choose from when I’m trying to work out what is being said.

As I said before, I ‘pass’ in the hearing world. Or at least, I did.

In my early 20’s my hearing deteriorated further and I was prescribed a second hearing aid for my right ear. I refused to have two aids for several years. In my mind, one hearing aid meant that I had a hearing loss but two meant that I was deaf. It took me a while to culturally adjust to the concept and I didn’t really accept being ‘deaf’ until my hearing got a lot worse.

In 2014 I reached the stage of being ‘legally deaf’ in Canada. That means that I can no longer hear enough to ‘pass’ with just my hearing aids, but that I have to rely on other forms of communication as well. In my case, that means that I now have to be able to see people’s faces to ‘hear’ them and that a standard phone, always difficult, became impossible. It’s when I started needing a ‘hearing dog’.

Thankfully I heard about the Canadian Hearing Society and have been fortunate enough to work with some fantastic staff at my local office who have helped me identify resources that help me specifically.

So I’m now working my way through ASL classes (which by the way really hurts my hands!) so that I can communicate in an emergency situation or if I get to the point where my voice can no longer be understood by others.

They also helped me try out TTY (TeleTypeWriter) which works somewhat like text messaging over normal phone lines as long as both parties have TTY machines.

I also tried Relay services which is where I can type or speak my end of the conversation and an operator will type the responses back to me. I hate the lack of privacy in that service and also find that most of the time if I use it to call people, they hang up as they don’t listen long enough to the operator to realise that they’re not being asked to pay for the call!

As a result of trying different devices I now have a highly amplified phone at home and in my office; which as long as I use it with my hearing aids, and in speaker mode, and know what the conversation is about – I can get by. Just!

I rarely use it. It actually amplifies sound to the point that hearing people should really be wearing ear protection if the sound was continuous!

Thankfully, most of the time I don’t need to use a phone. The use of smart phones has become so prevalent in today’s society that I can text, or email, the majority of people that I interact with.

For businesses I can usually use secure, online services such as secure messaging or online chat facilities. Or, in many cases I just simply go and see them in person.

So for example,  if I need to make an appointment for my car to be serviced, I drop in to the garage and book it in. Yes, it takes a little more time out of my day; but it’s effective.

However, every now and then I will hit a big brick wall!

This is where I am required to use the telephone, and only the telephone is allowed, to accomplish something that I need to do.

Now to be fair, the organisations stating this requirement often do provide TTY facilities (known as TDD in the US) but I don’t have a TTY device.

If you recall I didn’t like it and I also found that many times it would take hours for me to get somebody to answer it. Also, as I can manage 99% of my life without such a device why would I invest in one?

Additionally, right now, my breathing is so difficult that I can’t speak clearly. As I speak softly at the best of times, I am not currently audible on the telephone so traditional relay isn’t an option for me; even if I was willing to deal with the third party in my conversation and could get the organisation to answer the call.

I am not yet fluent enough in ASL to use video relay services.

So I’m left with a conundrum.

I have to get something done but I’m being told that the only way that it can be done is by telephone, which I can’t use.

Now I could ask a friend to call for me. Bizarrely, given that the reason these organisations give for insisting on the telephone is that of security they don’t seem to have a problem with a ‘complete stranger’, from their perspective, acting on my behalf.

Yet I have two problems with this.

1. I’m 44 years old and I have been independent a very long time. Why should I have to have somebody else do something for me? It’s not convenient for me, or for them, and often I don’t really want to share my personal information with them.

Which doesn’t detract from the fact that I have some awesome friends but rather speaks to the fact that I just don’t feel that it’s appropriate.

2. More importantly, as far as I’m concerned though, is why should somebody else get to dictate to me what kind of device I use to help me with my disability?

Can you imagine being told that you have to use a specific make and model of wheelchair to go shopping because the mall doesn’t allow any other kind in their stores?

So what do I do? I advocate and educate. Repeatedly.

Today I had a win! Kind of.

As I’m still not doing so well I needed to reschedule a trip that I had planned for a couple of weeks time. While the entire booking had been made online and all the accompanying reservations, and requests for an accessible room, had been managed online, I could only reschedule the trip by phone!

Thankfully, on this occasion, with a bit of detective work I was able to find an email address for the right office in the organisation in question. So I emailed them and explained my situation.

The first response was probably automatically generated, or at best was a cut and paste response. Please call the following number to reschedule.

I replied, explaining once again. This time I got a human response. Initially they didn’t know how to help but would find out. This is when businesses keep or lose my business. They did find out and made arrangements with me to connect with them by live chat, and to connect to the manager specifically, so that they could help me. But here comes the kicker…. it was made very clear that this would be an exception!

Now I really do appreciate the fact that they did make an exception, that the lady that I worked this all out with today was fantastic and went out of her way to help me reschedule everything and make sure that all the disability accommodation requests were carried forward to my new booking.

However, why did this have to be an exception?

There are many people, not just deaf people, but those with speech difficulties or social anxieties about using the telephone, that would benefit from there being alternative communication methods to the telephone.

Which brings me back to my opening statement today. Deafness is a continuum. It’s not all or nothing.

Yes, there are people who are culturally Deaf. They are comfortable with relay services and usually fluent in sign language.

Yes, there are people with normal or near normal hearing where a little bit of thought and speaking a little louder will help them.

However, there is huge community in between these two points where our deafness is at different points.

We can hear some frequencies and not others.

Amplification helps some and not others.

Personally, I actually have something called ‘recruitment’ as a component of my deafness which means that I can’t tolerate loud noises either. They sound disproportionately loud to me and give me migraines. My hearing aids actually deliberately dampen loud noises!

So what works for me today, may not work for me tomorrow. A case in point is that right now my amplified phones are useless for me as I can’t talk well enough to be understood.

The Accessibility for Ontarians with Disabilities Act actually states that there are different kinds of deafness using the terms I described above. However, in their guide to help organisations comply with the Act there is an assumption that all communication is in person.

Which works fine, until it doesn’t.

The company that I was trying to sort things out with today is based in Florida, USA. My local gas company no longer has any offices in town.

I can’t physically go and see either of them in person.

To date, I have not yet had to deal with this conundrum and found any valid reason for why the telephone is being insisted upon.

I use secure online messaging with Immigration regarding my sponsorship of my mother’s residence in Canada.

I use secure banking for all my financial activities.

I can access my medical test results through an online secure website.

So if my most personal and intimate information can be handled using secure online services I am quite sure that rescheduling a trip, or arranging for a gas line to be installed, can be done using the same technology.

So come on people – it’s 2016! Lets use the technology that’s available to us and stop discriminating against the disabled.

Let’s get educated and understand that it’s not a case of hearing or Deaf –  there’s a whole continuum in between.

You don’t have a right to dictate to me what equipment I have to use, if any.

It’s my right to choose and that’s protected by the Canadian Charter of Rights and Freedoms.

I do my part. I see it as my responsibility to advocate for myself. I do speech read. I do work very hard to ‘hear’. I use my hearing aids despite the fact that they’re not like glasses. They don’t return my hearing to ‘normal’.

In fact hearing aids, CIs and BAHA’s have a couple of major problems that the hearing community don’t seem to understand:

They only work when we use them! As soon as we take them off; which we have to do to shower, swim, sleep or just give our ears and brains a rest – we’re still deaf.

They don’t make our hearing ‘normal’. They just give more feedback to our brains that we have to interpret. Our brains have to learn to understand and interpret what we ‘hear’. It takes me about 3 months, every time I get new hearing aids, to adjust and I wear mine most days from the moment I get dressed to the moment I go to bed.

For those people who use CI’s or BAHA’s it takes about 2 years!

So please understand that when I say, “I don’t use the telephone, please text or email me instead’, I’m not saying it to inconvenience you. I’m actually simply informing you that this is how I choose to communicate.

So if you’re somebody who has to communicate with people as part  of your job please don’t assume that everybody can either use the telephone or is Deaf. Please make sure that you have alternative forms of communication available.

To those people that I’ve come across who have gone out of their way personally to accommodate me – I thank you.

People have used their personal cell phones to text me; or email me. They have listened to the voicemail on my phone and actually sent me a text or emailed me instead or repeated their names and numbers several times, very clearly.

I thank you.

However, I also wish it wasn’t necessary.

We have the technology – let’s use it!

When did compassion, courtesy and general professionalism disappear?

So I spent most of today at the hospital getting more tests done, trying to find out why I’m having so many problems breathing.

As a result I was seen by a variety of different health professionals. They were all excellent at the practical components of their job but it quickly became apparent that some of them seem to have forgotten that there is a living, trying to breathe, human being at the centre of this.

I’m deaf. I need to see faces to be able to ‘hear’. I have some hearing with my hearing aids in, which I was wearing today. However, hearing is hard work for me. It takes a lot of effort especially in a busy hospital environment with lots of background noise.

My chart is clearly marked with a nice little bright blue sticker showing the international symbol for hearing impaired/deaf/Deaf. Unfortunately for me, because I have a progressive loss, and was mainstreamed through school, I speak very well (I don’t have the typical ‘deaf’ accent) and I “pass” in the hearing world as ‘normal’.

Due to the nature of the testing that I was having done today I had had to leave Kai at home, so people also didn’t have a visible reminder of my deafness in the form of a 50lb Standard Poodle wearing a vest that states “Deaf Handler”.

However, how hard is it to make sure that you face me when you’re talking to me?

It started with the triage nurse showing me where I needed to wait. She walked off in front of me, far too fast for me to keep up, talking about what was going to happen.

I literally couldn’t keep up and hadn’t a clue what she was saying other than the fact that I knew she was talking. I called out to her, as much as I could in my breathlessness, and she didn’t hear me.

Thankfully other patients did and they stopped her. She slowed down but then didn’t talk to me at all.

I’m not stupid. I’m deaf. I just need you to face me.

An hour or so later, and I’m waiting to be seen still and I start having an allergic reaction. Patients in the waiting room have fruit infused water and iced teas with lemon. These are major allergens for me. So I go up to the desk and ask if I can wait somewhere else. Again, the staff member talks to me while facing away and carrying on with something else. I have to ask her to repeat herself, facing me, several times. It’s a huge imposition apparently for her to take 30 seconds to actually face me!

If I was well, I’d have been angry and advocated for myself and educated her. If I was working, and her teacher, she’d have been given a failing grade and expected to retake my class.

However, today I was a patient and it just hurt.

I didn’t feel that I mattered enough for somebody to take a few extra seconds to face me when talking to me.

To be fair, she did find me somewhere else to wait – that was somewhat safer.

A porter comes to take me for more testing. By now my friend has arrived and is actively advocating for me. I am very blessed. She reminds the porter that I’m deaf and need to see faces to ‘hear’.

The porter comes round to the front of the wheelchair to face me and re-introduces herself and explains what’s happening. Not a trace of frustration with having to repeat herself. In fact, if anything, she was apologetic about not having faced me to begin with. I felt cared for and recognized. I existed! I was a real person! It didn’t take much…

The porter then ensured that she faced me whenever she spoke to me. Not only that but she specifically passed on this information to different staff as she transported me between different places. Everyone that she spoke to then made the effort to make sure that I could see their faces which, in some cases, was quite difficult for them due to the positions I was in for the tests.

She advocated for me, when I wasn’t in a place where I could do so effectively for myself.

The porter was a bright spot in my day. Simply because she took the time to make sure that I could see her face, and to facilitate my interactions with other people. She advocated for me.

In contrast, at one point a technician came to run a test on me and I don’t think in the 5-10 minutes that it took that she spoke more than 2 words to me. I can’t be sure, as not once did she actually face me. This was despite the fact that the test was pretty personal and invasive. I literally felt like a lump of meat being man-handled.

I understand that health professionals can’t treat everybody as so they’re a member of their own family. To be that empathetic would cause burn-out and make them poor at their job. However, when did compassion, courtesy and general professionalism disappear?

As part of my job, I often work in medical schools and teach classes on professionalism, ethics and interactions with patients and their families.

Today, I was reminded of how important those classes are. Health professionals need to have objectivity. They need to have arrogance for they literally hold our lives in their hands; and if they aren’t arrogant enough to believe in their abilities and skills then they could never be successful at what they do.

However, there has to be a balance between objectivity and empathy.

I believe that this balance is compassion. It’s being courteous to each other and professional.

It’s remembering that every patient is likely to be scared. To not be at their best. That they’re human. That they need to feel cared for and not like a piece of meat. That while they may cope well when they’re well, by definition if they’re a patient they’re sick and/or scared of being sick.

Sometimes compassion can be seen in the simple, practical things like taking note of the fact that I’m deaf and making sure that I can see you when you’re talking to me.

Sometimes, it’s in the intangible. The way that you deliver information or news. It might be repetitive and boring to you. However, to me this is new. This has implications for me. It makes a difference to my life.

My results today were mixed. They didn’t find the cause of my difficulty breathing but they did find a whole new health problem for me to deal with. This was presented to me very matter of factly and then I was sent home. No time to process the information. No time to ask questions. Just “We can’t find the cause of your breathing issues and by the way, you need to see a new specialist and they’ll be calling you tomorrow with an appointment.”

I’ve worked in health services research for over 20 years. I know that being called for an appointment the next day is not usually a good sign.

I get the fact that I’m complicated; that nothing much is making sense and that that’s frustrating to you – the health professional. You’re used to problem solving and finding solutions. I’m not helping.

What seemed to get forgotten today though was that I’m the one living this. I’m the one having problems breathing. I’m the one that has now had a specialist, my own doctor and a handful of health professionals literally say “We don’t know what’s wrong or how to deal with this” all in the space of 48 hours.

At this point, all they can recommend is to rest, stay isolated and wean off the steroids slowly so that hopefully we can find the problem once the steroids aren’t masking any issues.

That is scary. Steroids have been keeping me alive for the last 6 weeks. Every time I’ve weaned off them I have become worse and had to go back on them. This time we’re doing a much slower wean and hopefully that will help.

In the meantime I have a whole new health problem to research and find out about before tomorrow!

Hopefully, this new specialist will offer compassion, courtesy and professionalism because at this point I am so far passed tired that I simply can’t advocate for myself.

But, then again I shouldn’t have to.

So I made it to Tuesday…. despite Grey’s Anatomy!

Anybody who read my first blog will probably remember that I was waiting to see the specialist today, Tuesday, in the hope that he’d have a solution (or at least a reason) for my breathing problems.

The good news is that I did make it to Tuesday; the bad news is that he doesn’t know what the problem is either. Nothing is making much sense.

He recommended hospitalization in a negative pressure, private room to give my body a chance to rest. The thought terrified me.

Before this last anaphylactic reaction my most serious reactions were actually when I was in the hospital in 2011/2012. As a result, I know that despite their best efforts, it’s impossible for the staff to keep my allergens away from me. Citrus, especially, is so prevalent in everything these days. Berries (also an allergen) are abundant at his time of year.

We agreed that I might not have a choice much longer, but that he’d let me continue to isolate at home as long as I continue to do nothing.

I’ll stay on the higher dose of steroids and do a much longer taper and he’s ordered more tests. So I’m basically still in a holding pattern of not being able to breath properly but not knowing why.

The asthma component seems to be under control (though I was informed that what I had considered stable for the past 8 years really wasn’t and that we’d be addressing that in the future).

To get to the specialists office, which was all of 2 minutes away, I had to over use my Ventolin (TM) inhalers. Not that they seemed to do much, which makes sense if the asthma component is under control, but I’m not sure what else to do.

So I wait for the tests and cancel my life for the next couple of weeks.

Which brings me to Grey’s Anatomy….

When this all started I had to find something to do that involved as little movement as possible. When reading was too hard I turned to Netflix and at the recommendation of a friend, have been working my way through Grey’s Anatomy.

For anybody who hasn’t seen it, Grey’s Anatomy is a TV series that follows Meredith Grey as she progresses from being an Intern to a Resident to the Chief of General Surgery at a hospital in Seattle.

Like many TV shows it centres on several characters and their lives and relationships. Every episode seems to include at least one death, sex between a new combination of characters and the doctor’s remarkable ability to identify, diagnose, test for and resolve complex health issues using innovative surgery within 44 minutes!

Having worked in health care I am well aware of the used condoms that janitors clear up daily in the supply closets but I’d still like to reassure anybody else watching, that in my experience, health professionals do act a lot more professional than they do in this show. It’s entertainment.

Which brings me to my thought for today. Where is the boundary between entertainment and education? 

One of my medical conditions is Osteogenesis Imperfecta (OI). If you’ve heard of this at all you’ll know it as ‘brittle bone’ disease. One of the reasons that you may have heard of it is actually from Grey’s Anatomy.

Over a couple of episodes, in Season 11, one of the main characters finds out that her baby has OI and her and her husband decide to induce early and let the baby die a natural death, rather than carry to full term.

Now let me be clear, there are a number of different types of OI and the show did make it clear that the baby had type 2, the worst. The baby was experiencing fractures in the womb and even if carried to term, would be unlikely to live past 6 months, and that 6 months would be full of pain.

I have type 1 or type 3. The milder forms. This means that I experienced most of my fractures in puberty. That as I grew older I experienced less.

However, it also means that I live with an invisible disability that impacts almost every part of my body.

OI is a deficiency in collagen. Collagen is the building brick for the body.

So in my case, it means that I have:

Progressive hearing loss (also compounded by having Ménière’s Disease as well).

I am at a high risk of fracture and consequently have to be very careful with what I do and how I live. Several times a year I fracture the smaller bones in my body, mostly my feet, which I self-treat unless they’re displaced. Even then I’ll often put them back in place myself and just carry on with life, avoiding an ER visit.

The whites of my eyes (sclera) have a grey tint but not the shocking blue of type 2. Which brings with it an over sensitivity to light, and an inability for my eyes to adjust to changes in light as quickly as they should and consequently you’ll rarely see me outside without sunglasses.

My heart has to be monitored as I have a murmur as part of the OI.

I also have spinal curvature and severely brittle teeth which has meant hours and hours of dental treatment with pretty much all my teeth having had root canals. Several of which have had to be repeated and then treated surgically as well.

Just to confuse the doctors, who always think of OI as somebody with restricted height, I am of a normal height  which is typical in Type 1. In fact, I’m actually pretty tall at just under 6′- but my Dad is 6′ 6″.

Types 1 and 3 come with respiratory problems too; which might help explain my current difficulties.

So this is what the milder form of OI looks like for me.

Type 2, the one presented in Grey’s Anatomy is the most severe form. It is frequently lethal at, or shortly after, birth, often due to respiratory problems. There are numerous fractures and severe bone deformities. People with type 2 are usually very short and their lungs are usually underdeveloped. Their sclera will be a vivid blue in most cases.

Grey’s Anatomy were absolutely factually right in how they presented Type 2.

I, personally, appreciated the way that they handled the story line. The mother is presented as a Christian who could not bring herself to terminate the pregnancy. She was about 24 weeks at the time, and as a doctor herself, knew that babies could be born viable at that point.

However, when she realized that her baby was experiencing fractures, and therefore considerable pain, while still in the womb, she was placed in an impossible position.

The script writers came up with a very humane solution which was to induce the birth and let the baby die naturally.

So I don’t have an issue with the facts or how they dealt with this specific example. Where I’m more confused though is in trying to work out where the boundary is for such shows between education and entertainment.

They never mentioned the Osteogenesis Imperfecta Foundation who work tirelessly to educate and support research into this rare condition.

They didn’t mention the 25-50,000 people that live with OI (or all types) in North America.

They didn’t mention the community of people, impacted by OI, that meet annually for a national conference in the US.

They didn’t suggest that the parents meet with other parents with surviving children with OI.

Most importantly, to my mind is that they presented OI as a disease that all the health professionals knew about. This is simply not true.

OI is a foot note in most medical students’ learning. If anything, health professionals will remember seeing a picture of somebody with Type 2  OI as the vivid blue sclera is pretty distinctive and memorable.

Therefore, I am the expert in my condition. I’m the one that has to educate repeatedly. To remind health professionals that a suspect fracture often won’t show on a standard x-ray as my bones are too thin (osteopenia) and that it’s better to treat as if it’s fractured and do imaging a few days later to confirm, than to not stabilize the bone.

I’m the one having to remind them not to pull or push on my limbs, or bend them into awkward positions, even for x-rays.

I’m the one having to remind them to use caution when inserting IVs, taking blood pressure, or performing other medical procedures to avoid causing injury.

I’m the one that has to remind them that I have the experience of my own body and that I can give good directions for the safest ways to lift, carry or reposition me; especially after a fall. (In my teens I broke my knee because people wouldn’t listen to me and insisted on lifting me after a fall; so instead of just having a fractured wrist I now had a broken knee to deal with as well).

Having dealt with dozens of fractures and medical procedures, I have a good sense of when a bone is broken even before x-rays are taken. Just like with my nose a couple of weeks ago. I knew that it was fractured.

The nurse on admitting didn’t. Because I went immediately to ER I had hardly any swelling at the time and no bruising yet. You had to look straight on at me to see the bend. Thankfully on that occasion, the ER doctor did listen to me and treated me exactly as needed and very well.

However, none of this was covered in Grey’s Anatomy. In fact because they chose to present Type 2, without any information about the other types and all the points I list above, they reinforced all the myths about OI.

8-9 million people watch Grey’s Anatomy. Many of whom will be in the health care professions or are interested in becoming a health professional.

OI is a rare disease. What a fabulous opportunity to educate people about this disease that was missed for the sake of a story line.

I understand that in Season 12 the same characters get pregnant again and I’m sure that there will be lots of drama about whether this baby has OI or not too.

However, I’m also sure that, this being entertainment, this baby will be healthy.

So I have mixed feelings. I love the fact that they raised awareness of OI in general. However, I wish that they’d done a better job of educating about all the different types of OI and that there are people living with OI daily.

Would that have made for a better show though? I don’t know. So just where is the boundary between education and entertainment?

Right now though, I wish that I was a patient on Grey’s Anatomy and that all my health professionals would be as knowledgable about OI as they were on the show, that they could run all the tests needed (including the tests that I’m waiting on) and get the results instantly, find the source of my problem, fix it and let me return to my ‘normal’ life within 44 minutes!

So when did it become OK to pretend to be disabled?

So last night one of the members of a Facebook group that I belong to posted that she was going to a time-share for a holiday and had realized that dogs weren’t allowed. So she was thinking of “certifying” her pet dog as a service dog so that she could take it with her.

Now, I’ll give this person full credit; because when I pointed out how offensive that is, and why, she took full responsibility and apologized.

However, the post is still running with others making similar suggestions for alternative ways of getting round the rules.

Which brings me to my question: When did it become OK to pretend to be disabled?

I am a service dog (SD) handler. I owner/private train my dog which is allowed under the law in Ontario, Canada where I live. As it is in the US, where the FB poster I refer to above was located.

However, to be clear, what I say next is about Ontario, Canada.

To use a service dog here I must be disabled. I don’t get to decide that by myself. My healthcare provider has to believe it and be prepared to stake their professional career on it by writing a letter, on their letterhead, which I must carry with me saying so. Not only must I be disabled, but that letter from my doctor must also state that a service dog would help me with my disabilities. (For those that are interested the law concerned is the AODA).

Then we come to the dog. I am privileged. In Ontario I am allowed to owner/private train my dog and have the same public access rights with them as somebody who obtains their service dog through a program. Handlers in other provinces are not so fortunate and I’ll come back to why I believe that to be a problem in a different post.

However, that means that I am responsible for all of my dogs training and behaviours at all times. The standards expected of a Service Dog are incredibly high. We start with basic obedience; but until a dog is house trained nothing else much matters, so potty on command is my first priority.

Basic obedience through to advanced obedience is just normal behaviour expected of a service dog. But think about it. Obedience trials are usually run in a controlled environment: a show ring. Service Dogs have to be obedient in every scenario that their handler could ever be in.

That means our work places, shopping malls, movie theatres, restaurants, fairs, schools, universities, camp sites, hospitals (!!), doctors clinics and waiting rooms, festivals, concerts, theatres, gyms, parades…. and the list continues….

So we train obedience and then we train generalization which means that the dog has to be obedient in all settings. We add duration, distance and distraction to everything.

Our dogs have to be able to hold a down while kids are throwing toys around or bouncing balls at them. They have to be able to continue working while people are talking to them, petting them and just generally distracting them from their job. To focus on us while bacon is sizzling on the BBQ above their head….

In Ontario Handlers with Service Dogs in Training  (SDiT) don’t have public access rights so much of this training has to be done in pet friendly locations. So now we’re dealing with out of control pet dogs. Dogs barking and lunging at mine, or just wanting to play. My dog has to be trained to ignore all of this and focus on me.

OK, so now I have a well-behaved dog in a pet friendly location; well, that’s just a magnet for petting. Now we work on training my dog to ignore people as well.  Not to take treats from anybody but me, or only with my permission. Not to eat or drink anything off of the floor ever!

That one skill alone has saved many a Service Dog’s life! Our dogs go in places where dogs don’t usually go. That means that they are not safe places for them at all times. A Service Dog handler lost her dog a while back because anti-freeze had been spilled in a store and she missed the fact that her dog drank it. It died!

We have to train our dog to wear a vest, harness, back pack, head collar, flat collar, slip collar…. a wide variety of working equipment depending on our needs, both physically and what works best for the dog. These change as we work through training and also depend on our disabilities. I don’t need to use a head collar on Kai. I currently choose to because he associates it with work.

Depending on weather and the places we need to be with our dogs we may need to train the dog to wear boots, eye protection or ear protection.

I personally train my dog to work completely off leash, because for my needs at home and work he has to be off leash most of the time. But then we come to being out and about in public and by law he must be leashed, unless he’s actively doing a task, so we now retrain everything and adapt to my using a hands free leash as well. Also a normal leash in case somebody else has to handle him in an emergency.

If possible owner/private trainer/handlers will often have their dog take the Canadian Kennel Club Canine Good Neighbour test. This is a good baseline for starting public access work in non pet friendly places.

As I live on the border with the US Kai was actually tested by the American Kennel Club and has passed the Canine Good Citizen, Canine Good Citizen Advanced, Canine Good Citizen Urban and the UKC SPOT tests.

So then we start working on public access in places where dogs don’t usually go. Small trips that are just for training. Grocery stores – proof him around food and the dog toys. Get him used to working behind/beside a cart. Tuck in close. Slowly building up to a ‘normal’ shopping trip; whatever that may look like. For me, it’s usually early morning. The risk of exposure to allergens is lower then for me as there are less people.

By now you’re probably getting the idea that training a service dog takes hundreds, thousands of hours of training. But at this point we haven’t even discussed training him to help with my disabilities.

Task training.

Some dogs have a natural alert to things such as seizures. However, that isn’t considered a task. If you’re lucky enough to have a dog that naturally alerts then we now train that alert into a task so that it is consistently reliable. The rule of thumb is 99/100 accurate alerts! Kai naturally alerts to my asthma and is starting to naturally alert to anaphylaxis (Neither of which will I be exposing myself to train into formal tasks).

For most of us we’re training response tasks. Either a response to something that our body does, that we do, or that somebody else does. So we might train a diabetic response/alert through the use of saliva samples, or guide work for those of us that have sight/balance difficulties or brain fog days.

Kai’s first priority is sound alert. I’m deaf. I use a specific ring on my cell phone, a distinctive alarm and have the LED flash. My home phone is amplified and flashes, rather than rings. My doorbell makes my lights flash – there is no actual bell

Kai is trained to tell me about all of these.

Some of them he simply fetches the source of the sound (like my cell phone); others he takes me to the source of the sound.

In my car, he sits on the front seat (harnessed in) so that he can show me the direction of emergency vehicles by turning his face and staring in the correct direction. Out and about he tells me about people coming up behind me, or that are calling to me, vehicles moving behind me…

As I have a number of other medical conditions Kai is also trained to respond to my breathing and remind me to take my medications. He can tell that my breathing is worsening several minutes before I really feel it. By taking medication earlier I can usually prevent more serious problems.

I have a lot of pain. Kai has been taught to put his weight on the pain points as it helps me. It helps a lot. It’s like having a warm weighted blanket with me at all times. However, I have to deal with the fact that when he does this at a venue, such as a concert, it looks like I have a poorly behaved dog on my knee rather than the reality which is that without him doing it, I’d have to leave and go home as the pain is unbearable.

I have issues with balance so Kai picks things up for me. As a result my risk of falls is much less. I break fewer bones.

Then comes the fun part – our dogs are trained to be intelligently disobedient! Yes, you read that right! Disobedient. So we spend hours training obedience to allow them to be disobedient?

Yes, but only in certain circumstances. So for example, if I have Kai in a down stay in the kitchen while I’m cooking he can leave to get the phone for me when it ‘rings’. He’s being disobedient to the down stay but obedient to his task training. He’s making an intelligent choice as to which is more important.

I could go on about training and Kai’s tasks for a lot longer…… I have a lot more medical problems that he helps me with.

My point though is this: to look at me I look just fine. I’m a member of this community of handlers that have invisible disabilities.

And somehow because we exist it seems to have made it OK for people to pretend to be disabled.

I don’t understand it.

I love Kai. Each and every day he helps me. But having a service dog is not easy. It’s like having a toddler permanently. Has he pottied? Do I have the equipment I need for him? What’s my backup plan if he’s having an off day today (He is a living being and not perfect)? Am I ready to deal with the people trying to pet him or distract him today? Do I have the energy to educate people today?

So, yes, I am privileged in that I get to take my dog with me everywhere that I go (Except for places that you can’t go in street clothes, or when I can’t handle him myself). But to have that right I take on a lot of responsibility. I am responsible for his behaviour. If he behaves inappropriately in anyway, I correct the behaviour or we leave. We retrain and in some cases we have to make the gut wrenching decision to wash out our dogs.

I had to do that with my first Service Dog: Topaz. It broke my heart. After almost 2 years we hit an issue that we couldn’t train through. She became protective of me. Unfortunately a 90lb German Shepherd that won’t let anybody near her handler is not often OK as a service dog.

She wasn’t aggressive. She simply refused to let you near me by placing herself between us and moving to make sure that you stayed away. I was hers and she was going to take care of me.

For some handlers this would be an appropriate task. People with combat and non combat PTSD often train their dogs to create space around them in this way. However, I work in a University and spend a lot of time with young children. It wasn’t OK for me, and my life, as people saw her as aggressive due to her breed and stance.

Thankfully I work with an awesome dog trainer in Michigan who was able to help redirect this and help me find the right home for her. Topaz is now working on a farm having the time of her life. I guarantee you that those farm animals will never be hurt by a predator while she’s on duty!

Washing out a dog is not easy. Starting all over again with Kai wasn’t easy.

Kai is still very young.

While not required, I had a MI professional dog trainer,  that I didn’t know, evaluate us using their version of the Assistance Dogs International Public Access Test (The international test used by programs to state that their dogs are ready to be placed with their handlers).

I anticipated us identifying some areas that we’d need to work on as while I’d worked on all of the requirements with Kai I’d never put it all together before and we did the test in a completely unfamiliar mall.

He rocked it! We passed!

Despite this, as he is so young still I’m still building up his training and adding more distance, duration and distractions. The training will never stop.

But to come back to my question – are you getting it yet

When people say “just go online and certify your dog as a Service Dog”.

It’s offensive.

It’s mocking me.

  1. There are no online registries that are legitimate. They are all scams. You don’t even know, or care, enough about the law to know that!
  2. Your dog may be well behaved; but there is still a huge difference between a well-behaved pet and a service dog.

Do you know without a shadow of a doubt what your dog will do if another dog barks and lunges at your dog?

I do.

Do you know that your dog will not eat or drink anything without permission?

I do; because if I don’t my dog could die.

Would you borrow a wheelchair and pretend to need it simply to get boarded first on a flight?

I doubt it.

So why, then, is it OK to pretend to be disabled so that you can take your pet anywhere that you feel like?

When you pretend that your dog is a service dog, and it isn’t, you are doing two things:

1. You are putting every legitimate service dog team out there at risk.

They are at increased risk of their dog being attacked either aggressively, or even just in play, by your dog. Yes, we train our dogs to be able to deal with this. But they are living beings. As a result, your ‘friendly’ dog could be the one dog too many that came on to a Service Dog; the handler then couldn’t retrain the dog to ignore dogs after that when it was working and had to wash the dog. Thousands of hours of training thrown away because you had to take your pet dog somewhere!

Watch two Service Dog teams cross paths. Unless they already know each other they will keep space between the dogs. They will have them greet on terms that the handlers know is best for their dog; that is if they feel that it is appropriate for them to greet at all. They will support their dog in ignoring the other dog completely.

You also make our access rights more complicated by presenting the scam registration paperwork.

Legally, in Ontario service dogs are not certified.

Their very behaviour tells you if they are a service dog. If it isn’t obvious then a business can ask the handler for their doctor’s letter confirming their disability and need of a service dog.

If the dog isn’t behaving appropriately, and the handler isn’t effectively addressing the issue,  the business can legally, and should, ask the handler to remove the dog and come back another time when the dog is behaving appropriately.

2. To have a Service Dog you must be disabled. So when you pretend that your dog is a Service Dog you are faking a disability. That is NOT OK. That is offensive to me. It hurts me.

I’ve spent my entire life living with a variety of disabilities.

I’m not looking for pity.

I’m not looking for praise.

I simply want to get on with my life, with whatever support I need to do that.

In my case, at this point in my life, part of those supports is a Service Dog.

So the next time that you think it, or that you hear somebody else suggest: “Just say that your dog is a  service dog so that you can take it anywhere.”

PLEASE STOP!

THINK!

You are saying that it’s OK to pretend to be disabled.

You are saying that our disabilities are so meaningless to you, often because you can’t see them, that pretending to have them is OK.

Simply to take your pet with you? 

If you really feel that that is OK then I invite you to come and spend a day with me.

Live my life for just 24 hours.

Live with the restrictions that I have on my life.

I guarantee that you’d see the world differently as a result.

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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