Blog resumes due to popular demand – thank you for all your support…

In the past couple of weeks, since I suspended this blog to get a big writing project underway I have been sent several requests for me to resume it sooner than later. Apparently, different posts are really helping people and there are more people out there reading this than I knew. To those people who took the time to comment and ask me to continue again – thank you.

I won’t promise that it will always be daily but I’ll commit to writing several a week. I’m also going to go back over the older blogs and edit them for grammar and spelling. Some of them were written when I was very, very sick and that didn’t matter too me so much. Now it does, so I’ll correct it.

As for the big writing project: that is now underway and completely framed out so I’m comfortable that I can continue with both that and keep this Blog going at the same time. I also had a couple of offers from people who would like to write a guest Blog on here. Please use the contact form to let me know if that was you as I’d love to have you write some entries.

As for me, I’ve now been home from the hospital a few weeks and I’m starting to get into a good routine for me. I’m getting support from both my respirologist, my allergist, my GP, my psychiatrist and my psychologist. I have a pretty amazing team helping me take care of my mental and physical health.

That probable break that I wrote about a week or so ago, turned out to be a bad sprain and an old avulsion fracture.

However, all of this would be nothing without the help of some great friends in my life, old and new, who have been willing to stop wearing all scented products, not eat citrus at all and in a couple of occasions made their homes safe for me to visit so I’m no longer trapped by my own four walls. I have safe places to go. Consequently, I’ve felt better able to manage the risk of being in public a little more and have now attended two events at my local library. My thanks to the librarian and group leader who helped to accommodate my allergies so well.

As for my friend, who acts as a ‘service human’ in partnership with my service dog words fail me when I think about how much my new found freedom is possible at all because of her willingness to accompany me, check for scents and speak up on my behalf when I can’t safely do so myself.I am blessed and privileged to know her as a friend.

Thank you.

Oh, and the really good news is that I’m finally at the point in getting better where my employer is working with my disability insurance, my GP and I to agree a graduated return to work plan. Initially it will just be for 2 days a week as I still have to start and complete the respiratory rehab. program but hopefully I’ll be full time again within 2-3 months.I have to reserve my spoons as this will be such a big change after such a long time.

However, I will be working from home to accommodate my extreme allergies.

I am really looking forward to that after 10 months of being on medical/disability leave! I wonder what Kai (my service dog) will think about my going to work in my home office rather than at the University ūüôā

Sometimes my reality doesn’t seem to have any correlation with others.

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Over the years I have learned patience but unfortunately I still don’t suffer fools gladly. When spending all day, every day, for months fighting to simply physically survive my patience is often very thin when dealing with others that seem, to me, to be acting like idiots.

A wonderful example of this happened to me today. I recently sent an inquiry to a company inquiring about the availability of subtitles on their movies, as I’m deaf. Their response was to inform me that they can’t deal with my request for such information by email and would I please call them?

Now I know that often these responses are automatic. This one wasn’t though, or at least it didn’t appear to be. So somebody actually read my message that said that I’m deaf and that there is no point in my buying movies without subtitles and still didn’t think that telling me to use the phone would be pretty idiotic. I’d at least have given them points if they’d sent me the TTY number (I don’t have a TTY machine) but at least that would have shown some thought.

Instead I now have to find a way of making contact with a real person by email, or online message when available, to get my question answered.

Of course the whole thing would be much simpler if they just complied with disability accommodation legislation and captioned all movies!

The worse part is that when I do finally get somebody to understand that I’m deaf they then tend to act as so I’m stupid as well. You wouldn’t believe the number of times that people have said nasty things about my being deaf and what an inconvenience it is for them without thinking that I just might be speech-reading what they’re saying.

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I can’t hear properly. That’s it. It doesn’t have an impact on my intelligence. It doesn’t change my ability to see. If anything I pay closer attention to what’s going on around me than many hearing people do.

It is shocking to me that many people, and in fact a number of countries, still think that the deaf shouldn’t drive. Yet at the same time there is extensive research being undertaken into how to get drivers to pay more attention to emergency vehicles as they don’t hear the sirens over the music they have playing!

Ironically, research has demonstrated that the deaf are actually safer drivers than the hearing. Probably because we do rely on our eyes to hear so we actually pay attention to those flashing lights because we can’t hear the sirens.

Anyway, my reality is pretty logical.

I’m deaf, that means that I have very little hearing in my case – virtually none without my hearing aids in and if I’m not paying close attention.

To me it would then be pretty obvious, once informed that I am deaf, ¬†to assume that I can’t use the telephone. To assume otherwise is just idiocy as far as I am concerned. However, in the last few weeks I have realised that my reality is often very different to others.

I understand that there are always three versions of reality, like truth – mine, yours and somewhere in the middle. However, I don’t understand how people can create a reality that bares no resemblance to facts.

I spent two hours last night repeating information that I have posted about pretty often on my blog. I did it because somebody asked for my help. I finally got fed up of answering questions about something that I have already addressed at length and told them to search my blog for the information.

They got upset with me and stated that I am a “hard person” as I wouldn’t help them. At this point I lost all patience and didn’t continue the text conversation further.

I’d just spent 2 hours helping them. Documented fact.

Additionally, my blog has a search function right at the top; it makes it really easy to find the posts that you’re interested in. The topic that they wanted to know about was the text 911 system. It takes all of 2 seconds to type 911 in the search box, hit enter, and then get the four blog posts which tell you all about the problems that I had when it failed, the investigation undertaken and the results of that investigation. There are links to the text 911 system right in the posts themselves.

However, apparently I wasn’t helpful and I was informed that I was a “hard person” because I didn’t continue to spoon-feed the information they wanted, the way that they wanted it.

Since when is it my job to spoon-feed other people information that I’ve already provided? Especially to an adult who is quite capable of doing that search themselves.

Yet as soon as I set up a boundary and say enough…. I’m the problem.

Some time ago I posted about needing to set more boundaries in my life and that the hard part about doing so is the anger others express when I set them and expect others to keep them. Last night’s conversation was a perfect example of my not respecting myself enough to hold that boundary. I wasted two hours of my life, and a lot of energy (spoons) that I just don’t have to spare trying to be helpful. Only to be called names.

I should have just simply insisted that they use the search function, read the blog posts (that they had said that they’d read already but obviously hadn’t) and only answer any additional questions.

Lesson learned.

This is just one example from my life recently where the facts, not even my perception of reality, but actual documented fact aren’t supported by others realities. Yet somehow they try and make me fit into their version of reality and get angry with me when I won’t agree to do so.

I love this quote about not caring about impressing others and I’m working hard on making it a reality in my life. However, it seems that I need to add an addendum to it….

81929-i-have-reached-a-point-in-my-life-quotesI have reached a point in my life where I no longer care whether your reality matches mine or not. If it does, great, if it doesn’t, enjoy your alternate reality but please don’t waste my time and energy ¬†bullying me when I don’t conform to yours!

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.

 

Great customer service still exists. Thanks Fido!

On the 23rd August 2016, I had an anaphylactic reaction during a biopsy. Being in my local hospital at the time I was treated very promptly and discharged a few hours later with the normal warnings about watching out for a biphasic (secondary) reaction later. In my current condition, and given that I only live a few minutes from the hospital, I’m safer at home than in the hospital. As demonstrated by the anaphylaxis being triggered while I was in the hospital, to begin with.

Unfortunately a few hours later and I needed to return to the hospital Рfast. Being deaf, and with breathing issues which make speaking extremely difficult, I am registered with the Text 911 service as well as with our local Vulnerable Persons Registry.

On this day I experienced an epic fail. Neither of these systems worked.

The Text 911 service didn’t work and I had to spend several valuable minutes trying to get my location and issues across to the paramedic dispatcher. This was terrifying. It was already an extremely scary situation in that I knew from experience that I only had a few minutes if I was truly going into full anaphylaxis once more. The dispatcher worked very hard with me to understand me and it must have been extremely difficult for her, as I couldn’t hear most of what she was saying so had to simply keep trying to repeat myself until I thought she had the address right.

Now because I was expecting the Text 911 system to work I had called from my cell phone. This meant that my address wasn’t automatically provided to the dispatcher.

Except that, it should have been. I’m also registered with the VPR. This registry is meant to provide a limited profile, that I confirm the details of at least every 3 months, to emergency¬†services. This includes my address linked to both my home number and my cell number as well as the fact that I’m deaf, have breathing issues, and other such essential emergency information.

After the event, I contacted both services and asked them to investigate what happened. The VPR is still investigating though I expect to hear back soon.

Text 911 confirmed that I live in an area where the service is active and working and escalated the issue to my service provider – Fido.

At Fido, my concern was investigated by the President’s office. From the beginning, they have kept me fully informed of the steps that they have taken as their investigation progressed.

Today, they reported the outcome to me.

Unfortunately, it was human error.

The system all worked properly.

I was fully registered.

The system alerted the dispatch that I was a T911 user and for some reason, they didn’t follow the protocol.

The person concerned has been identified and retrained. In fact, the local response unit staff are all being retrained and reminders of the T911 protocol are being sent out to all areas that use the T911 service.

I’m sure that my case will be used as an anonymous example as to why it is so important that they use this system when prompted.

I was lucky.

I was actually still experiencing the first anaphylaxis and hadn’t entered a second. My emergency medications had worn off and the increased steroids hadn’t kicked in yet.

If I had been in full anaphylaxis I probably would not have survived the delay.

I don’t bear any resentment against the dispatch operator.

She made a mistake.

She also had to deal with hearing me fighting for every single breath, knowing that she could be hearing my last at any moment while also helping calm me down and get information from me.

I’m quite sure that once she learned that she’d missed the T911 protocol that she will never, ever make that mistake again.

The T911 service is also very new. I doubt that there have been many uses of it in my area, if any, before mine.

I hope to not need it again any time soon. However, given that I’ve had several severe asthma attacks and borderline anaphylaxis since then it’s likely that I will.

I am hopeful that next time it will work as it should.

In the meantime, I want to raise my hat to Fido.

They put a lot of time and effort into finding out what went wrong and then correcting it.

They kept me fully informed every step of the way.

They also recognised that the situation was terrifying and extremely serious.

Not once, did they try to pass the blame.

In this day and age, it is rare to see such accountability from a corporate organisation.

I am impressed and will remain a loyal Fido customer as a result.

Just when… I’m sick of platitudes..

I am sick of platitudes. The one driving me nuts at the moment is “It can only get better”. If I could scream, I certainly will if I hear that one more time.

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Please stop saying this to me, and to others.

Believe me, even when you think you’ve hit rock bottom it can still get worse.

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I’m sick and tired of being sick.

I’m also tired of people just not getting it. That when I say that I am housebound that I really do mean that in over two months that I have not left my home more than a few times for anything other than medical appointments.

That those few times that I have tried leaving my home, have been for essentials such as grocery shopping and that they have been very carefully managed. Even then I have paid heavily for doing something so simple as getting a few groceries.

I’m tired of having to repeatedly explain that I can’t use a telephone. That I can’t hear well at the best of times and struggle to use an amplified phone, but that right now I can hardly speak and so people can’t understand me either.

Even when they’ve emailed me,¬†to begin with, because they know this, people keep then telling me to call them when I need clarification on something. How does this make sense to them? Are they just not thinking?

That when I say that my home has to be completely scent free right now I am not exaggerating. My friend, who has gone above and beyond in making herself safe to be able to visit me simply put a tiny amount of hairspray on the other week and triggered an asthma attack for me.

Just this past week I posted about ending up in Emergency not once, but twice, because I had an anaphylactic response to something used during a biopsy.

Then, when I’m recovering from that, I get more bad news.

I don’t want to hear any more news.

I don’t want to open any e-mail.

I don’t want to look at any¬†texts.

I don’t want to use Facebook.

However, as I said in another post this week technology is currently my only contact with the outside world.

So I don’t have a choice about whether or not I use technology unless I want to be totally isolated – which I don’t.

I can’t change others.

However, I do have a choice in how I react.

So I’m going to remind myself that I can, and will survive.

That more importantly, I am not as alone as I feel, and that I do have some awesome friends that epitomise the sentiment expressed by Winnie-the-pooh: They can’t do much to help me up right now, only the health professionals can (and hopefully sometime soon will) do that but they do a fabulous job of listening to me.

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Those of you concerned, know who you are – thank you!

For the disabled technology can be a life-saver, until it’s not…

Earlier this year I was delighted to be notified that Text 911 was being rolled out in my area. Being deaf I use text a lot. In fact, I only have voice services on my cell phone for emergency use.

Registering with Text 911 was not quite as simple as I’d hoped. However, after trying to register my cell phone with my service provider, Fido, on many occasions and never receiving a confirmation I contacted Fido directly. Back in mid-April,¬†they confirmed that I had been registered with them since the 1 Feb for the text 911 service. They sent me the instructions on how to use the service.

You actually have to make a normal 911 voice call and then wait for the 911 operator to send you a text message which you then respond to. Your cell phone must be able to maintain a voice call, so the operator can hear what’s going on at your end of the call, and text at the same time. I have a new iPhone 5 which meets the criteria.

Being registered for the text 911 service gave me peace of mind, as I’ve always struggled with 911 calls in the past. Either I can’t hear at all due to the environment I’m in and/or I can’t be heard as I speak very softly. Yesterday, of course, I was fighting to breathe so speaking at all was almost impossible.

However, when I called 911 yesterday to request an ambulance I didn’t get the 911 text that I was expecting. As a result, I had to guess what the operator was saying as I could make out very little and I had to fight even harder than usual to be understood. All of this, took up a lot of time that if I had been in full anaphylaxis could have been the difference between life and death. Thankfully, I was in a biphasic reaction and while, terrifying, it didn’t threaten my life.

Being someone who believes in being prepared I am also registered with the Sault Ste. Marie¬†Vulnerable Persons Registry. I’d even updated it since I’ve been suffering such immense breathing difficulties to state that I can’t speak well or easily as well as being deaf.

Despite this, the 911 Operator didn’t appear to have this information when I called. Neither did my address get provided to them, linked to my cell phone number as well as my home number, as I had expected.

So today I contacted the Text911 service and the Sault Ste. Marie VPR. I haven’t heard back from the VPR yet but the Text911 service has taken my concerns very seriously and escalated them to the President of Fido, my service provider. Fido has been in touch to confirm the information and is investigating further.

I look forward to getting answers from all concerned.

In the meantime, though it made me realise how much I am currently relying on technology.

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My home is set up with light alerts on the telephone, doorbell, alarm clock, smoke alarms and in response to any persistent sound near the monitors in my bedroom or living room. My hairdryer or the vacuum cleaner will set them off, which can be quite entertaining! I also have a pager I can carry that vibrates so if I’m going to be somewhere in the house, or out in the garden, where I can’t see the lights I can be paged instead.

The only problem with this¬†is that despite signs on my doors stating that I’m deaf and use a service dog, people think that my doorbell isn’t working because they can’t hear it ring. This is the secret people, it doesn’t ring! Why would it ring in a house set up for a deaf person?

So on the few occasions that people come to my home, that I’m not expecting and already looking out for they often start to leave before I get a¬†chance to actually open the door.

This aside, I rely on this technology to keep me safe. I augment it with my service dog who is likely more reliable, but he is a living being and not perfect.

Those companies that insist on telephone use aside (I’ve written about that a number of times now in previous Blogs) I’ve been able to manage much of my life from within the safety of my own home. Secure messaging, online facilities¬†and text messaging have all been enabling technologies for me. Additionally,¬†a number of administrative staff have gone out of their way to help me using their personal cell phones to text me about medical appointments rather that calling. Others have realised that they don’t have alternatives to voice calls and are now establishing alternate (non-voice) contact methods for people like me. In the meantime, I¬†am looking into services such as email-to-fax as most organisations do still use fax machines!

Beyond that being able to text my friends and family have really helped alleviate my isolation. Even though I am a natural introvert I still need to spend time around people, and not being able to for days on end is very odd.

I’m fortunate in that I have friends and family who have chatted with me by text for hours on occasion. I am so grateful for both them and the technology that has enabled this contact for me.

Having such technology is liberating. However, it’s also terrifying when it failed like it did yesterday. Especially, when that technology is designed to help people just like me, the deaf, mute and/or hard of hearing.

I understand that technology is not 100% reliable. However, it is now the 21st Century and it is time that the disabled, who are often so reliant on technology, are not put at such risk when technology fails.

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It’s not just an inconvenience for us, it can be the difference between life and death. The Soo VPR came about in response to Lewis Wheelan’s death in 2003 during the Ontario blackout¬†because he needed electrical power to survive.

In hindsight, I should have hung up my cell phone and repeated my 911 call from my landline which would have automatically provided my address to the operator. However, when I didn’t get the 911 text response that I was expecting when I called 911 I was panicky and not thinking straight.

My home phone was several feet away from me and walking that distance may have been too much for my lungs to have managed at that point anyway.

I am very grateful for the 911 Operator who worked exceptionally hard with me to understand me and helped keep me calm while I then waited for the paramedics.

I can’t imagine being on the other end of that kind of call where you can hear the person unable to breathe, their struggling and fighting to get a single word out, and their throat closing resulting in what must be horrendous choking sounds. It’s bad enough to live through; it must be awful to be the lifeline for that person knowing that you can do nothing but get information to the paramedics as fast as possible.

So if you know any 911 operators, please thank them for me!

The paramedics were also phenomenal, as were the staff at Emerg. I’m thankful to all of them.

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But my plea is to those who provide technology solutions, such as text 911, PLEASE make these reliable and available 24/7. I know it’s tough to do but it’s my life, and others, at stake.

It matters.