Before the Internet, when people died, there were very few opportunities to explore a person's life after they were gone. Home movies let you see glimpses of their life, a diary if they kept one was a source of their thoughts. Save for these few relics however you were left very much in the dark. Then the Internet came along. Or to be more precise it was the advent of social media that spurred on the act of documenting our lives in digital form.
I was scrolling through twitter and happened upon a profile of someone I know to be dead and when I clicked on it something hit me. There was no indication at all that they were gone from their profile. They hadn't tweeted in a while but that doesn't usually make people think someone is dead, they would probably just think they left twitter or grew bored of it. None of their tweets gave any indication of what happened, although again it's not often that people know in advance when or where they will die, and with passwords etc being what they are - known only to you - that makes it very hard for someone else to leave a tweet to let people know.
It struck me that what I was looking at, in the form of the twitter profile of a dead man, is an echo. Everything he tweeted, there for others to read including myself, upon viewing is an echo of what he said and what he did, to be heard again and seen again each time you view it. It also struck me that his tweets give no sign of what was to come, which isn't surprising because no-one could have predicted what would happen, and if they could they likely would have prevented it. No, what struck me was the oblivious nature of it, right up until the moment it happened they lived their life with no idea what was coming.
Reading through their tweets, seeing their videos, and everything they shared from other sites, I realized that we don't share that much about our actual lives. Even when we post an endless stream of content it's hard to find anything specific about our actual lives when you strip everything away and leave only that of substance. I know a lot has been said about data harvesting and data mining, and the profiles advertising companies create around us but really all that can tell you is a set of characteristics the person is likely to identify with, and their possible interests. It doesn't tell you anything about the actual person behind it all.
You'll never ask a question they weren't already asked and get an answer. You'll only find the information they chose to share, unless you get to know the people that actually knew them. That poses another problem, the depth of connections on social media are often quite shallow and superficial. We can have thousands of friends or followers on these platforms, but how many of those people actually know us, rather than knowing of us? There is a distinction to be made there, knowing someone exists, and actually knowing that person, are two very different things. How much do you actually know about the people you interact with?
I'm taking a break
I would usually write several posts for this blog at a time, save each one, read it again at a later date and if I like it then schedule it to be posted. I tend to do this in bursts where I write about 6 or 7 posts at a time. Over time this amounts to a buffer of content that will be published, which frees up my time so I don't have to come back at a set time to write posts. It also means that I can harness my creativity when it flows and write what comes to mind, allowing me to create content that doesn't feel like it was rushed through just to be ready for a set date or that I wrote about anything at all just to have something to post.
That is how this usually goes but lately a few things have made this complicated. First and foremost is my personal health. For the past 9 weeks I have been sick. You wouldn't think it to look at the posting schedule here, but some people may have noticed I have been a little quieter than usual on twitter and whatsapp. The truth is I have been exhausted. I had hoped it would pass and I would get back to full speed but the opposite has happened and I've been slowing down even more. My buffered content is all published now and I've had to make a decision about what to do next.
I won't be updating this blog for a while. I can't say for how long because I honestly don't know. I toyed with writing a post that would go through everything I have been through the past 9 weeks in detail but it reveals more about my personal life than I want to at this point so this is the abridged version.
I first felt sick 9 weeks ago, which I thought would pass. It didn't, and after 3 weeks I made an appointment to see Dr #1. He didn't know what it was but did a few tests and an examination. A week later I got the results of those tests with Dr #2, and still no wiser. I was advised to rest and still not prescribed anything for the pains I was having and the difficulty breathing that had developed. 5 weeks in and I see Dr #3, who decides to do more tests, and another examination. Another week later I get results and still none the wiser.
Week 7 and I see Dr #4. At this point I've been tested for about 12 different things, I've had an ECG, blood tests, urine samples, oxygen tests, and I've had every orifice prodded and poked and still nothing. I'm told my liver is fine, my heart is fine, my lungs are fine, I dont have diabetes, I don't have a thyroid, I don't have rheumatoid arthritis, my blood tests are unusual but nothig beyond flu-like, and still no prescriptions and no treatments. After insisting there's definitely something wrong with my lungs I get sent for an X-Ray of my chest. Week 8 and I see Dr #4 for the results of my chest X-Ray and indeed they have found something. After 8 weeks they finally think they have an idea of what it is, and it's a condition called Sarcoidosis.
Basically there's no known cause of Sarcoidosis but it is suspected to be caused by trigger infections, which would match up with the initial symptoms I had that were similar to food poisoning. I was infected with something, no idea what that was, no idea if it's still in my body - but from the inflamation markers in my blood tests it would appear it's still there but weakening. Whatever it is comes back in waves so there's been a few times it's as if it's gone, and then came back.
Either way that's not the main concern. The main concern is what followed. When the body detected that infection it began fighting it off, except it never stopped. The immune response persists, to the point where the immune system begins to attack the body itself, in my case it's affecting my lungs and my joints primarily.
It's been 9 weeks now, and during that time a wide range of symptoms have come and gone, some returned in waves and left again. Those include, headache, cough, fever, sweats, nausea, diarrhoea, neuralgia, constipation, dizziness, shortness of breath, exhaustion, insomnia, fatigue, black vomit, difficulty moving, joint pains, muscle aches, and rapid weight loss.
The symptoms that have persisted the most throughout this whole experience are the joint pains, muscle aches, difficulty moving, and shortness of breath.
After 9 weeks I finally have a prescription to take care of the aches and pains at the very least but the other symptoms come and go and the shortness of breath is the most irritating, but I have no treatment options for that rght now. My brain is fried, from the lack of sleep, the fatigue, the tablets, and the point of outright exhaustion which I reach before being able to achieve something that even remotely resembles sleep. I don't feel like myself at the moment for many reasons, and I certainly don't feel creative. I can't do much at the moment and that's frustrating. I get out of breath whenever I attempt even simple physical activities and I get out of breath at random times sitting doing nothing. I get moments I feel like I'm being choked and I have to cough but nothing moves when I do. At its worst it can be hard to have a simple conversation with someone without getting breathless which just feels incredulous.
At the same time I do recognise I need rest. I've had to give up a lot of commitments and I've reached a point now where I feel drained pretty much all the time.
In terms of how long this is going to last, I have no idea. I'm waiting to see a consultant for more scans and tests. I believe the next one is a PET scan to see if there are granulomas in my lungs or if my breathing problems are related to swollen glands. I also need more tests before a diagnosis of Sarcoidosis can actually be given, there's still a chance it's not that, at which point I'll be left clueless as to what it could be yet again.
I'm tired. Mentally, physically, and emotionally, I am so tired.
That is how this usually goes but lately a few things have made this complicated. First and foremost is my personal health. For the past 9 weeks I have been sick. You wouldn't think it to look at the posting schedule here, but some people may have noticed I have been a little quieter than usual on twitter and whatsapp. The truth is I have been exhausted. I had hoped it would pass and I would get back to full speed but the opposite has happened and I've been slowing down even more. My buffered content is all published now and I've had to make a decision about what to do next.
I won't be updating this blog for a while. I can't say for how long because I honestly don't know. I toyed with writing a post that would go through everything I have been through the past 9 weeks in detail but it reveals more about my personal life than I want to at this point so this is the abridged version.
I first felt sick 9 weeks ago, which I thought would pass. It didn't, and after 3 weeks I made an appointment to see Dr #1. He didn't know what it was but did a few tests and an examination. A week later I got the results of those tests with Dr #2, and still no wiser. I was advised to rest and still not prescribed anything for the pains I was having and the difficulty breathing that had developed. 5 weeks in and I see Dr #3, who decides to do more tests, and another examination. Another week later I get results and still none the wiser.
Week 7 and I see Dr #4. At this point I've been tested for about 12 different things, I've had an ECG, blood tests, urine samples, oxygen tests, and I've had every orifice prodded and poked and still nothing. I'm told my liver is fine, my heart is fine, my lungs are fine, I dont have diabetes, I don't have a thyroid, I don't have rheumatoid arthritis, my blood tests are unusual but nothig beyond flu-like, and still no prescriptions and no treatments. After insisting there's definitely something wrong with my lungs I get sent for an X-Ray of my chest. Week 8 and I see Dr #4 for the results of my chest X-Ray and indeed they have found something. After 8 weeks they finally think they have an idea of what it is, and it's a condition called Sarcoidosis.
Basically there's no known cause of Sarcoidosis but it is suspected to be caused by trigger infections, which would match up with the initial symptoms I had that were similar to food poisoning. I was infected with something, no idea what that was, no idea if it's still in my body - but from the inflamation markers in my blood tests it would appear it's still there but weakening. Whatever it is comes back in waves so there's been a few times it's as if it's gone, and then came back.
Either way that's not the main concern. The main concern is what followed. When the body detected that infection it began fighting it off, except it never stopped. The immune response persists, to the point where the immune system begins to attack the body itself, in my case it's affecting my lungs and my joints primarily.
It's been 9 weeks now, and during that time a wide range of symptoms have come and gone, some returned in waves and left again. Those include, headache, cough, fever, sweats, nausea, diarrhoea, neuralgia, constipation, dizziness, shortness of breath, exhaustion, insomnia, fatigue, black vomit, difficulty moving, joint pains, muscle aches, and rapid weight loss.
The symptoms that have persisted the most throughout this whole experience are the joint pains, muscle aches, difficulty moving, and shortness of breath.
After 9 weeks I finally have a prescription to take care of the aches and pains at the very least but the other symptoms come and go and the shortness of breath is the most irritating, but I have no treatment options for that rght now. My brain is fried, from the lack of sleep, the fatigue, the tablets, and the point of outright exhaustion which I reach before being able to achieve something that even remotely resembles sleep. I don't feel like myself at the moment for many reasons, and I certainly don't feel creative. I can't do much at the moment and that's frustrating. I get out of breath whenever I attempt even simple physical activities and I get out of breath at random times sitting doing nothing. I get moments I feel like I'm being choked and I have to cough but nothing moves when I do. At its worst it can be hard to have a simple conversation with someone without getting breathless which just feels incredulous.
At the same time I do recognise I need rest. I've had to give up a lot of commitments and I've reached a point now where I feel drained pretty much all the time.
In terms of how long this is going to last, I have no idea. I'm waiting to see a consultant for more scans and tests. I believe the next one is a PET scan to see if there are granulomas in my lungs or if my breathing problems are related to swollen glands. I also need more tests before a diagnosis of Sarcoidosis can actually be given, there's still a chance it's not that, at which point I'll be left clueless as to what it could be yet again.
I'm tired. Mentally, physically, and emotionally, I am so tired.
Expectations
In life there are many expectations of us that we encounter. Perhaps the first place we encounter these expectations when younger is through our friends and family. Our friends have expectations of what we should do and say and we call that peer pressure. Our families have expectations of us that we experience as we grow and we tend to refer to that as they way in which people were raised. As we grow older our exposure to the establishment and to various institutions increases and we become more aware of the expectations that society as a whole place upon us.
If you are an LGBT person I would argue that your exposure to society's expectations happens at a much younger age than that of our straight friends. Whilst straight people for instance will grow up in a society where their sexuality is considered the default, it is much more likely that the majority of straight people will have their first kiss, first crush, first boyfriend or girlfriend etc long before their family and society expects it of them. For LGBT people in contrast you are much more likely to be exposed to the reality that other people will react negatively to your first experiences of these events, again primarily through peer pressure at first and then through society's expectations as a whole later in life. There are two main paths this can take unless you find a supportive atmosphere where there is no issue with your sexuality. Those two paths are either to be led into experiencing these events under a veil of secrecy which inherently breeds a feeling of shame which arguably may cause problems later in life in terms of mental health and well being. The other path is to experience these events in the open in an act of rebellion and defiance which in itself can also cause negative effects when you are entrenched in the idea that love is an act of rebellion.
Through it all one question underpins everything we experience and it is quite simply "Why?" - three little letters that throw open a debate that spans generations, borders, culture, race, religion, politics... the list goes on. Ultimately you can boil this down to one simple answer to that question however and that is "Because we believe we should." - whatever the answer that you would pose to the question of why, it is a distraction. It is not an answer in and of itself to the question. Any other answer than this is simply to explain who, what, where, and when, we came to believe that we should. The answer ultimately is simply that we believe we should. Whatever answer you gave is the answer you gave because it is what you believe that answer is, when in reality, the answer you give is your perception of society and what you believe it expects of you.
I know you may argue with me on this but allow me to defend my reasoning for saying this. The main reason I say this is the reason above all else is one simple fact. Society does not exist. Now I know many will argue with me on that and point to various things but I would ask in return to show me society itself. Not something that came about as a result of the perception of society, like religion or politics or government etc, but society itself. "Society" is an abstract concept. It is in reality a term we use to refer to a collection of ideas and what we choose to include in that collection comes down to our collective psyche and what we perceive together - and politics and religion in particular highlight the fact that we don't have to agree on those for them to be included. I would even go so far as to say we are much more likely to include the things we don't agree with in the definition of society than the things we do agree with. Therein lies the problem with using society as a means for progress - it is heavily skewed towards controversy and contempt.
Think about the word society and what you associate with it. Of all the things that come to mind, how many are positive and how many are negative. Do you believe society is fluid or is it something that is fixed? Is it the way the world is in reality, or is it the way the world is expected to be? Ultimately the question you should dwell on most is that of the expectations of others, just as we have discussed the expectations of society, the same question of the expectations others have for us and all that it entails applies - "Why?"
If you are an LGBT person I would argue that your exposure to society's expectations happens at a much younger age than that of our straight friends. Whilst straight people for instance will grow up in a society where their sexuality is considered the default, it is much more likely that the majority of straight people will have their first kiss, first crush, first boyfriend or girlfriend etc long before their family and society expects it of them. For LGBT people in contrast you are much more likely to be exposed to the reality that other people will react negatively to your first experiences of these events, again primarily through peer pressure at first and then through society's expectations as a whole later in life. There are two main paths this can take unless you find a supportive atmosphere where there is no issue with your sexuality. Those two paths are either to be led into experiencing these events under a veil of secrecy which inherently breeds a feeling of shame which arguably may cause problems later in life in terms of mental health and well being. The other path is to experience these events in the open in an act of rebellion and defiance which in itself can also cause negative effects when you are entrenched in the idea that love is an act of rebellion.
Through it all one question underpins everything we experience and it is quite simply "Why?" - three little letters that throw open a debate that spans generations, borders, culture, race, religion, politics... the list goes on. Ultimately you can boil this down to one simple answer to that question however and that is "Because we believe we should." - whatever the answer that you would pose to the question of why, it is a distraction. It is not an answer in and of itself to the question. Any other answer than this is simply to explain who, what, where, and when, we came to believe that we should. The answer ultimately is simply that we believe we should. Whatever answer you gave is the answer you gave because it is what you believe that answer is, when in reality, the answer you give is your perception of society and what you believe it expects of you.
I know you may argue with me on this but allow me to defend my reasoning for saying this. The main reason I say this is the reason above all else is one simple fact. Society does not exist. Now I know many will argue with me on that and point to various things but I would ask in return to show me society itself. Not something that came about as a result of the perception of society, like religion or politics or government etc, but society itself. "Society" is an abstract concept. It is in reality a term we use to refer to a collection of ideas and what we choose to include in that collection comes down to our collective psyche and what we perceive together - and politics and religion in particular highlight the fact that we don't have to agree on those for them to be included. I would even go so far as to say we are much more likely to include the things we don't agree with in the definition of society than the things we do agree with. Therein lies the problem with using society as a means for progress - it is heavily skewed towards controversy and contempt.
Think about the word society and what you associate with it. Of all the things that come to mind, how many are positive and how many are negative. Do you believe society is fluid or is it something that is fixed? Is it the way the world is in reality, or is it the way the world is expected to be? Ultimately the question you should dwell on most is that of the expectations of others, just as we have discussed the expectations of society, the same question of the expectations others have for us and all that it entails applies - "Why?"
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