Is it dead? Or not?

Most of us have some idea about what life is and what, or when, death is although the latter is a concept that has changed over time with scientific development.

In terms of life, a lot of high school textbooks go with movement, respiration, sensitivity, growth, reproduction, excretion and nutrition.  There are always exceptions, possibly designed just to annoy those high school teachers… But it works as a basic idea.  Apparently, NASA’s definition is that ‘Life is something that undergoes Darwinian evolution’ (Dr Louisa Preston quoted in Death on Earth).

Defining death intuitively feels like it should be straightforward… In the past, your heart stopping would be the end of your life but today we have CPR and technology that brings the possibility of being revived.  If your body cannot function for itself, you may be considered dead, or you may be considered brain dead and be reliant on machines to keep your body alive.  Where is the defining line in these cases?

Jules Howard adds further complicating examples…

“Consider those creatures that undergo cryptobiosis, able to survive for long periods as lifeless shells or hardy eggs.  Consider, for instance, the tiny sexless metazoans that live in birdbaths (among other places), the bdelloid rotifers, which expel all water from their bodies and form a hard stone-like ball when their puddles dry up… They can last for seven years in this dehydrated state.  They undergo no growth or metabolism, nothing life that, in all that time.  They are surely not alive in this state… but they are surely not dead either.  They might revive.  And then there are the sea monkeys (brine shrimps), which can undergo cryptobiosis like bdelloid rotifers but for far longer, perhaps for centuries in some cases. Not all of these dehydrated life forms will find water.  Many of them may blow away or be buried in places without water, and many will break down over years or decades, eroded by the elements.”

With these cases, when did the organism finally die?  Wood frogs are another weird case, seeming to die and be revived each winter:

“Wood frogs stop breathing and their hearts stop beating entirely for days to weeks at a time. In fact, during its period of frozen winter hibernation, the frogs’ physical processes—from metabolic activity to waste production—grind to a near halt.”
National Geographic

To throw another spanner in the works, let’s have a look at a case involving a zombie caterpillar…

Trees have developed tactics to win the war against pests, and some can influence parasites into attacking caterpillars.  The tree influences the rate that caterpillars are infected by baculovirus.  Once infected, the baculovirus enters the caterpillars gut and multiplies before overwhelming the entire body.  The caterpillar swells because of this internal flood of the virus.  The virus then manipulates the caterpillars behave, in a way that zombie writers would be proud of.  The growth cycle of the caterpillar is halted and the caterpillars mind is essentially taken over.  Instead of carrying out normal caterpillar behaviour, they seek out light, struggling up the treat and eventually burst.  This is great for the baculovirus as it creates a virus shower that covers the tree, the leaves and all the other caterpillars who live there… Baculovirus 1 – Caterpillar 0.

Does the caterpillar die when it explodes?  Or does it die when it’s mind is taken over by the virus?  Or when it gets infected?

If we return to the school definition, the caterpillar is moving, respiring but is no longer growing or reproducing and I would have questions about whether it is sensitive any more…

Given that there are over 100,000 species of parasitic wasps, compare that to the less than 10,000 species of mammals, the case of the zombie caterpillar becomes important to our question about when is death.  And spoiler alert, I probably won’t be answering that question…

Aside: If you want to explore a related question, why death is, then I recommend Death on Earth.

It seems like viruses may well be making zombies out of all of us.  Apparently if you are infected with the flu, but aren’t showing any symptoms, you are more likely to engage in social activities and hence spread the virus.  The rabies virus changes personality and causes aggression which again helps it move hosts.

Toxoplasma is something that cat owners may be familiar with, at least on an intimate level, possibly unawares.  It loves cats because the only place they can have sex is inside the cats digestive system.  This means they have to get from current host to cat, and they do this by manipulation.  If they’re in a mouse or a rat, for example, they control the host’s behaviour and turn animals which are fearful of cats into animals that seek out cats.  They travel further, explore more and have less anxiety about unknown or dangerous situations. Ultimately, toxoplasma is hoping the host will get eaten by a cat, turning the host suicidal.

“Animals, on the whole, don’t kill themselves unless their parasites want them to.”
– Howard

Just for fun, let’s have a look at some of the other zombies that are currently making our planet their home…

There is a type of parasitic barnacle that sets up home in a crabs reproductive system, cutting off all chance of the crab reproducing.  The barnacle has such power over the host that it can cause a male crab, who doesn’t normally take care of eggs, to care for the barnacle as if it was a brood of eggs.

Ants and caterpillars can get taken over by fungi, essentially becoming a fertilizing, transport vessel.

And for one final example, there are cicadas who end up pumped full of hallucinogenic drugs and have to face the horror of their abdomens falling off…  Despite this, males then become hyperactive and hypersexual.  Personally, sex is the last thing that would be on my mind if half my body had fallen off…

I’d love to know your thoughts about the when is death question.  Until I started looking into zombie creatures, I’d not really thought much about it.

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Being disabled in hospital

Intuitively, you’d think hospitals would be set up for people with disabilities, long term health issues and wheelchair users. However…

When I stayed in hospital I found my preexisting and unrelated disability was treated badly. This included:

  • Not being able to go in ambulance in wheelchair – I had to transfer out of my electric wheelchair, into the ambulance wheelchair and then I could get put in the ambulance. This means when you arrive, you are reliant on hospital wheelchairs and people to push you. Both are in short supply. I got my manual wheelchair brought into hospital so had a bit more comfort and didn’t have to rely on hospital wheelchairs being available. Unfortunately it was really hard for me to get my electric chair so I couldn’t leave my bed without someone to push me.
  • This was made worse because nurses and healthcare assistants kept telling me to get off the ward and have a change of scenery. I understand the value of leaving the ward but the main friend I had visiting had hurt her back so couldn’t push me. When I explained this I was made to feel like a bad patient and there was a very clear implication that I didn’t want to get better or get out of hospital.
  • Related to this, I kept being ‘encouraged’ to walk further and for longer than I can and then all but being told off when I couldn’t.
  • I tried to ask for help getting out if bed and was told no because the healthcare assistant saw me walking on another day. My condition fluctuates and my issue wasn’t walking but getting out of bed because I had lost any core strength I had.
  • There was no help with personal care which would have been fine except my carers weren’t allowed onto the ward outside visiting hours. As a result I went days with my face not washed, my hair not brushed and my clothes not changed. It also meant I had to ask hospital staff to grab me things, to open bottles and to pour me a drink.  Some staff were fine with this, others less so but either way they had more important jobs to be doing.
  • There were no shower facilities for wheelchair users and I ended up using the one changing places toilet in the hospital to shower. This involved the cleaner repeatedly hammering on the door. I assumed it was someone needing to use the disabled toilet and rushed and kept shouting that I was only going to be a few more minutes. Finding out it was the cleaner really hacked me off…
  • Once I was able to get out of bed myself, it was in theory easier to go to the toilet.  Except because of my disability, I couldn’t physically lock the door…
  • Any preexisting health issues were ignored and I was denied morphine flat out on one occasion.  I was told because I was being discharged the next day I couldn’t have any because they don’t release people with morphine.  Even though it was unrelated to why I was in hospital and even though I have morphine at home.  I was given paracetamol and left to suffer.
  • There was a dramatic lack of understanding about my condition which would be fine and I’m happy to explain it.  However, what I don’t like is people who pretend to know about it.  There was a nurse who said she knew all about ED (which to me means erectile dysfunction or emergency department – I have Ehlers Danlos Syndrome…) and then was shocked when she discovered I was hypermobile…  There was a doctor who acted like he knew all about EDS and then couldn’t understand why I have morphine on prescription…If you don’t know, ask or at least google!
  • There was also an assumption that the staff knew best even when it came to issues like how to help me out of bed – if you hold my hands and pull, my wrists may well dislocate…
  • There were also environmental issues that would have bothered me even if I didn’t have a disability but possibly affected me more so…
    • I was suffering from migraines and these were exacerbated by harsh lighting and I would ask to have my curtains left shut to block some of it out.  These were repeatedly opened and I couldn’t get up to shut them.
    • Lights are routinely turned on at night which I understand but sleep is good for healing!
    • Being woken up at numerous points in the night to have blood pressure taken etc even once we’d reached a stage where I could have been sent home if my home care was in place.
    • Incredibly strong air freshener

I haven’t even talked about needing specific mattresses or other equipment such as a hoist or a feeding pump.  For another person’s experience, check out Emma’s blog – and look at other posts too whilst you’re there!

I’d like to end by saying that there were some amazing members of staff who were working with a lack of time and a lack of equipment and providing exceptional care despite that. There were a couple of people on my ward who I looked forward to seeing and would feel relief when I knew they were coming on shift.

The pros and cons of being my carer

Recently I was thinking about the role of my carers and the pros and cons of their jobs and having spoken with them, the pros and cons weren’t necessarily the obvious ones.

There are some very obvious pros, for example going to the theatre with me, going on days out, going on holiday…  All of these things are something I need assistance with and therefore a carer gets paid to go with me.  When we aren’t out and about, we’re normally at home watching netflix or youtube and I choose what to watch based on who’s on shift with me.  I’m great friends with my care team and that has to be a pro… at least I hope so!

When it comes to the cons, you might expect somebody to say emptying the commode, showering me or washing my period pants.  You might think it’s hard having someone ask you to do something every few minutes or having to anticipate someone’s needs.  To be a third wheel at times or having to go to things and places that you don’t want to.

But the reality is, having spoken to my carers, the things that they see as cons are dealing with spiders and coping with my nightmare neighbours.  Starting work at 8.30 was also mentioned with the caveat that this would also be the case for most jobs so isn’t care specific!  This morning I did not want to wake up, but I have to get up by a certain point to have my medication, and my carer hated having to interrupt my dreams.  In a similar vein, it’s hard for them to see me anguish over asking for help on bad days for things I can cope with on better days, and watching me suffer with pain when there’s nothing else that can be done. 

Essentially, the harder bits of my care are because my team are empathetic, kind and caring people who find it hard to see another person suffering.  

Of course, this isn’t the reality for many carers who are overworked, underpaid and expected to see numerous clients in one day.  I am lucky in that I have a small care team who work with one or two clients and so we are able to build that relationship which is important.

The last two years

Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.

In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.

This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.

Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.

I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…

Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…

Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.

One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.

I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.

Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.

Laughing at my nightmare

I have recently discovered Shane Burcaw and his wonderful sense of humour.  Quoting from his blog, I will let him introduce himself:

“I’m Shane Burcaw. I’m 26 years old, and I have a disease called Spinal Muscular Atrophy. I have been in a wheelchair since I was two. I love to laugh, and my life is pretty funny. Allow me to share…”

And if you want to take him up on his offer to share, you have a few options.  There are his books, which I read incredibly quickly, shared bits of out loud and on instagram, and have recommended to many people already.  There is his blog of course and the YouTube channel that he shares with his fiancee Hannah.

book1

And if you find him as funny and entertaining as I do, consider donating to his charity which raises money for other people with Muscular Dystrophy and helps them live their best lives.

book2

One thing from Shane’s blog that I love is the ‘What Made Me Smile’ posts and in the spirit of that, here are the things that have made me smile this week:

  • seeing the sparrows that visit my feeder get ready for winter with their fluffy feathers
  • thai food with a couple of awesome people
  • finding solutions to a couple of disability related problems, i do love a good problem solving moment
  • teaching a friend to knit
  • watching a carer read Shane’s first book and seeing her smile and laugh. NB I am not creepily staring at her as she reads!
  • getting my copy of Inside History which focuses on medicine and surgery for issue 1!

What my wheelchair vehicle means to me

I do have more posts about animals and death in the planning stages but my week away took a lot more out of me than expected so they are at the coming soon point…!

My week away brings me to the subject of this blog post, what my wheelchair vehicle (WAV) means to me, because without it the holiday would have been very different.

car

I’ve had my WAV for nearly two months now.  It’s a Peugeot Rifter and both my electric and manual wheelchair fit in it which is a huge difference to only being able to take a manual chair in the boot of a car. The latter means that I have to be pushed by a carer. So what has my wonderful WAV let me do?

I went to Beverley to see the Wildlife Photographer of the Year exhibition.  Being in my electric chair meant I could move through at my pace without having to tell someone and I could see the pictures better as my electric chair is higher up.

We drove over to Hebden Bridge to see a friend of mine.  We went to Osmotherley to walk around Cod Beck Reservoir.  It was much more comfortable and less painful being in my electric wheelchair and it meant that my carer could walk along beside me which makes it much easier to talk to her!

DSC_0140

We went to Scarborough and because I was able to take my electric wheelchair, I was able to spend time someone without my carer being the third wheel.  Whilst I love my carers and they are great, I don’t always want them literally looking over my shoulder as they push me.

Of course the biggest thing that my WAV has made possible was my holiday.  We were able to drive down south, meet my lovely friend and do little day trips.  Again, being in my electric wheelchair makes a huge difference to my experience.  I am much more comfortable, less battered and bruised, am able to talk to my carer and can move around on my own. I no longer have to try and guide a carer into the position for me to take a photo – left a bit, right a bit, no back a bit… And my electric wheelchair is a little higher so when we go places like the zoo, I can see over the railings more easily.

me

Without my electric wheelchair, we couldn’t have gone to most of the places we visited because for some reason all the paths were gravel which is incredibly hard to push a manual wheelchair through.  As it was, I did get stuck a couple of times with my wheels skidding.  In my manual chair, not only is it a nightmare for the carer doing the pushing, it’s painful for me and it undermines a lot of the enjoyment of the trip.

I am loving the freedom that my WAV is giving me and the ability to use my electric wheelchair wherever we go.  I am very aware that the benefits system has many faults but I am so grateful that I’ve been able to use mine with the motability scheme to get my WAV.

Bring on more trips and days out!

The lifelike dead

When looking at pet obituaries and pet cemeteries, we see the practices of mourning human death transferred to animals, especially pets.  This can be seen as extending personhood to what may in other circumstances be deemed a possession.  Taking this the other way, we also see death practices which solidify the idea of pet as possession, for example taxidermy.  It would not even be considered appropriate in the western world (is there anywhere it would be? Hit me up, I’m intrigued!) to taxidermy a human loved one.

Taxidermy of pets likely originates from the Victorians when taxidermy more broadly was popular.  Stuffed animals were found in homes, hunting lodges and museums and to some extent were considered educational.  Taxidermy of pets turns a once living creature that was loved into an object, and often the people wanting to memorialise their pet would be the same people who’d argue that the pet had some degree of personhood.

“It is hard to imagine that the bereaved owners who arrange for their pets to be preserved in this way act from anything other than grief for and love of the animal they have lost; it can be equally hard to contemplate the finished product without discomfort.”
– How We Mourn Our Dead Pets

Taxidermy has historically been used for museum specimens – as a representative of an entire species – or as a way of marking human prowess when it comes to hunting.  In neither case is the life of the individual celebrated by the act of taxidermy and in both cases, a statement is made about man’s dominion over nature.  In hunting this is clear but in museum specimens, it is about the scientific knowledge that we gain and thus by gaining this we label ourselves above other species.

However, modern taxidermy is bucking the trend a bit and is more about the individual animal, or at least can be, especially when we’re looking at pet taxidermy.  Some taxidermists won’t take pets because they are challenging – customers are hoping for a simulacrum of their loved once and putting the appearance of life into a lifeless body is a big ask.

“Instead of representing humans dominating animals, performances of modern taxidermy show humans with animals, engaged in the taxidermic process as a way to work through and even critique several of the paradigms through which humans typically engage with animals.  Rather than forget or efface the lives of animals, then, modern taxidermy can facilitate the work of memory by emphasising an animal’s death and the particularity of the animal who died.”
Mourning Animals: Rituals and Practices Surrounding Animal Death, edited by Margo de Mello

Modern technology can take taxidermy and raise it, with the process of freeze drying which alleges to give a lifelike experience in a way that taxidermy cannot.  In the process of freeze drying, organs and eyes are removed, the corpse is posed and then freeze dried… And then you get to own your beloved forever!  And own it is, this is not a relationship any more, you cannot argue that it is anything further than ownership.  Your pet becomes your possession.  It is without doubt now an object.  I do wonder what happens when you run out of space for the freeze dried fido, or you pass on and your children decide to get rid of it…

There is another option if you aren’t ready to let go of your beloved pet and that is cloning.  It’s incredibly expensive, exploits grieve and won’t even ensure your “new” pet has the same personality as the one that’s died, or even the same markings.  It is also a cruel practice as the clone has to be incubated within a living animal and it reinforces the idea of pets as property.  When your tv breaks, you buy a new one.  When your dog dies, you get a clone.

“Bioethicist Jessica Pierce articulates the problem with seeing dogs as mere objects in her New York Times op-ed and notes that dog cloning “reinforces the status of dogs as things to buy and collect, and as sentimental tokens…  Dogs are valued for our feelings toward them, rather than for who they are as individuals.”
Jessica Baron

Whilst I understand the temptation to hold onto your pet for that bit longer, some of these options do make me wonder if they are a way to avoid facing the death.

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