A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Sunday, 15 September 2013

I am

It's such a long time since I've blogged - too long.  Part of the reason is that when I was in hospital I didn't have my computer and found it such hard work typing out my posts with one finger on my phone.  I also had an awful lot going on, and needed a bit of space to deal with some of it ... not that I've really managed that.  However, I am now out of hospital after a five week admission and have been on holiday.

Very briefly, I had great holiday with a good balance of doing fun and interesting things and taking things gently.  I went first for three nights in Stratford-upon-Avon, then for a week in west Dorset, and finally for three nights in Derbyshire (actually it was Staffordshire, but close to the Derbyshire border and with a Derby post-code).  I'll post more about my holiday next time, but there's something else I want to talk about now.

So what I want to talk about is something that was said to me while I was in hospital.  It was said by someone who I had had some difficulties with for a few months, but whom I'd previously considered a friend, and it was said during my last hospital admission at the time when I was on the respiratory ward, but had slipped back, was having to fight hard, and was back on BiPAP.

The basic situation was that I went on to Facebook (via my phone) when I was on the respiratory ward after not having been on at all while I was in ITU and HDU.  I went in to a group of which I had been a part for a number of years and was asked by a couple of members how I was and what had happened.  I said a little of what had happened, how things had been, and that I was struggling again.  One member of the group then asked me more about what had happened so I expanded on what I had already said.  Another member of the group - the one with whom I'd had previous difficulties - suddenly exploded at me.  She said a lot of things, both in the group and in private messaging, but the most hateful and despicable thing was when she said, 'You're life is too different from mine or anyone's here to comprehend living.  You should stop trying to live.  Your existence is offensive.'  As admin of the group, she then expelled me.

I'm not repeating this here to vilify her or to gain sympathy, but rather to explore some of the issues it raises for me.

At the time this was said I had been off all antidepressants for a week.  They'd been suddenly stopped in ITU in case they had played a part in my low calcium levels and the terrible loss of muscle/neuro control.  This is not how antidepressants should be stopped in usual circumstances.  The combined consequence of this and my physical situation/illness was that I was extremely emotionally unstable and feeling very depressed.  I was also finding it unbelievably difficult to comprehend everything that had happened in the previous nine days.  I didn't think I could get through the second wave of physical fight that had hit me, and I was questioning whether or not I actually wanted to survive because to do so meant only to have to face the same situation again some time in the future.  With what was said, I was then hit with the thought that I had no right to live.  Someone I had previous trusted had declared my life unworthy, and I couldn't help but think that maybe they were right.  Maybe I shouldn't be alive.  Maybe she was right and my existence is offensive to those who live 'normal' lives.

Maybe all of us who struggle to stay alive actually have no right to life.  After all, in previous times there wouldn't have been the medical science to keep us alive.  Perhaps, according to the rules of natural selection, we should die out and let the healthy people get on with developing a super race.

I began to believe this.

I began to believe that I ought to give up trying to breathe, that I should take off the BiPAP and give in to the suffocation.

The doctors kept checking on, not knowing what had been said, what I was thinking, how I was feeling.  They kept looking worried, and the ITU Outreach team and anaesthetists kept coming to see me.  I kept doubting that I had a right to life.

But what about others I know, friends around the country with the same condition as me.  If I didn't have the right to life then neither did they ... but that's not what I believed for them.  Whether or not I should be alive, the life I have had has been made richer by my friends, including those who have regular severe asthma attacks and those with other life-threatening/life-limiting conditions.  They may not now be able to contribute to the country's economy - like myself - but they are still valid individuals, and they still positively contribute to the lives of others.  I don't often feel as though this is true for me, but I try to challenge it by looking at the evidence - the fact that I have friends.  They aren't my friends out of sympathy (that is not friendship), but I guess because I must give them something they value...

The question of the right to life goes on: where do you draw the line?  I mean, at what point is one's life considered unworthy?  Is it based on how much you cost the health service?  Or the amount of medication you need to take?  Or the number of days per year you are unable to work?  Is it based on how much of a challenge your illness/disability is to others?  If so, then who are those others - officials, medics, politicians, a public poll?  What about if you weren't born disabled/unworthy of life, but became so later on?  Should those people be 'involuntarily euthanased'?  If so, then when does that become murder?  Or does murder only apply to healthy, worthy people?

My life challenges me, so I'm not surprised that it challenges others too, but I didn't ever think that it would be considered offensive.  Obviously it does offend some ... well, it's certainly offensive to at least one.  What can I do?

For now I have made my decision: I will continue to offend that individual by continuing to exist.

I cannot apologise for my existence.  I cannot apologise for the way my ill-health challenges that individual and anyone else it has such an effect upon.  That challenge is their response, their feelings, and therefore their responsibility.  That's not to say that I'm not hurt by the belief that I have no right to life - I am, I'm deeply hurt, and I'm hurt by the timing of this being said to me - but I won't let the cruelty of one person kill me.  For now, even while I continue to have doubts about my worthiness, I will keep existing for those who outnumber that cruel individual - for my family and friends who, for whatever reason, want me to be alive.

13 comments:

Helen M said...

I've just been watching snippets of a documentary about Adolf Hitler. If we go down he route of validating people's existence based upon health, cost to society and ability to contribute (financially) then we would be in a very different world to the one in which (thankfully) we live thanks to many who fought and gave their lives for our freedom. xxx

Rainbowsparklie said...

Your existence is offensive??!?!?!?!
HTF can anyone utter those words to another?


Great blog as ever.

*r*a*i*n*b*o*w* *s*p*a*r*k*l*i*e*s*

musingsfromarandommind said...

Stupid, blinkered, bogotted people do unfortunately inhabit this world. Know that you have so many rooting for you - this person is not worth the space their words are printed on. Although thanks to you giving them that much they have received negative vibes a hundred-fold to your positive ones {{{hugs}}} Backy xx

Kate said...

I'm totally shocked by that comment. Honestly - it took my breath away.

My older daughter had a supposed friend turn nasty on her a few months ago. She showed me what this girl had written about her in an email and then said in total confusion, "Yeesh, what's her problem???"

vivinfrance said...

Exactly: what's HER problem? She must be very sick.

Of course you have a right to live, to cheer us up with your positivity,your sense of humour.
Love'n'hugs,
ViV

piratejenny said...

Of course, of course, of course you deserve to live! I used to follow the EA300 survivors student forum (being a survivor myself) and developed a tremendous respect not just for your strength in adversity, but also for your achievements in undergraduate and postgraduate studies. I regard myself as fortunate to have reached the age of 70 with no health problems. I can't imagine what it is like to be you, but I am inspired by your strength in adversity. I hope you continue to recover your strength, live, be happy, and write.

Jenny

piratejenny said...

Nobody has more right to live than you do, Becky. I first encountered you on the OU EA300 survivors forum and followed you to your blog. Your courage and strength are an inspiration. I hope your recovery continues and you go on living, writing, blogging and enriching life for everybody who reads you.

Anonymous said...

Some people are beyond nasty!! People like that are the offensive ones! Glad you have been able to have an enjoyable holiday. Personally, I think you're amazing how you cope with everything. Keep going hun. My own asthma has become severe recently and I've had several life threatening attacks. But reading blogs like yours help me keep going xx

Asthma and Allergies said...

Asthma and Allergies are different, though they may have related reactions and some of the body’s chemicals that are involved in allergies are also involved in asthma.
You may need medications to treat allergies or asthma, especially if your symptoms become severe at times. However, recognizing and avoiding the allergic substances that trigger your symptoms is the most important step you can take.

BeckyG said...

Thank you all so much for your comments of support. I have to say that while I said at the top of the post that I would not publish negative posts, there have been very few comments that I have not published as the overwhelming majority have been of support and encouragement. Thank you.

It would seem that at least two of the 'anonymous' (I use inverted commas because I was fairly sure I knew who they were) posters didn't like being called cowards so they revealed themselves to me, although in further aggressive posts that they knew wouldn't be published. I still consider them to be cowards as they used my comment moderation almost like email with no returning address and no means to discuss the things they said other than on my blog. I won't do that because that would give them a public voice which they aren't not worthy of, and my blog is not a trolls' playground.

Anyway, enough about them. They've had far too much attention already. So once again, thank you all so much for your support, encouragement, positivity, and love.

Becky

BeckyG said...

'Asthma and Allergies', thank you for your comment. I am aware that asthma and allergies are different, but my allergies (particularly the anaphylactic ones) usually trigger my asthma to varying degrees. I already take regular antihistamines and a nasal spray, and have two other antihistamines and my Epi-Pens prescribed for use when my allergies are very bad/in an anaphylactic reaction. Thank you, nonetheless, for your comment and information.

Becky

Janet Anne Bautista said...

Hi Becky,

I wanted to reach out because I'm doing research for a start-up that's creating a new network of asthma bloggers, with the goal of improving communications between the healthcare industry and patients on the web. To do this right, we want to get some real-world feedback and have put together a short questionnaire. Would you be open to helping out? It will take 8-10 minutes and can be either e-mail or phone, whichever is best for you.

Thanks,
Janet

BeckyG said...

Hello Janet, Yes, I would be very interested in being a part of this. I don't give out my email address online, but if you were to post another comment with your email address in it I would take your address from that and then not publish the comment so that it didn't go out in to the world (the joys of moderating all comments). Would that be okay? Becky.