Dear Humans of Facebook

Dear Humans of Facebook.

Tonight, I noticed that my blog from last week had spiked in Facebook likes. I decided to try and find out why, so I could thank whoever had shared it.

I found the post on a Facebook page with almost 300k likes. It’s an American page and is not a charity or organisation I’ve come across before other than briefly on Twitter, but they clearly do some great work.

They’d posted it as a recommended read, and initially when I saw it, I was delighted! There are over 1200 likes and over 250 shares. I then began to read the comments, of which there were about 40. There are some people who were clearly hurt by my blog, or by life, who were angry with me, or cancer, or life (or all three) and they responded by writing their feelings (which they’re completely entitled to do) on this post.

I’m going to be honest, some of those comments really hurt me. They made me cry. They made me question myself and my writing.

Since then, I’ve had a wonderful army of friends and family message me. Some of them have responded to some of these comments, most of them have just made me laugh and cheered me up. I’ve also reasoned with the ratio of negative to positive responses. I’m fine now and I guess whenever you post things on the internet, you open yourself to criticism, but I’d like to take the time to respond to some of the sentiments expressed, because I will feel more at peace with myself once I’ve done that.

To the people telling me I’m selfish

I can totally see where you’re coming from and this is something I worry about every day. Am I being selfish? Should I give up everything I’m doing and go to stay with Mum? Should I leave uni, quit my jobs and just go home?

That was my first instinct, yes, but I’ve spoken about it with my family and we don’t believe it’s the right thing to do. We need normality. We don’t know how long Mum has left and when she was first re-diagnosed it could well have been years. I can’t spend years by her side – firstly, we’d kill each other, secondly, what good would that possibly do?! Mum is completely on board with this, one of the first things she said upon waking from the coma she was in was to tell my brother and I to go back to uni. Heck, she carried on working herself until she was in a coma. Furthermore, how are we supposed to afford to live without working? I think we’d struggle.

With regards to my writing about how I can’t plan or I can’t do certain things I might want to do, I’m not writing this to complain. I don’t feel a sense of injustice about it at all and I’m in no way angry or resentful of my Mum for being the reason I can’t do these things, I’m simply trying to explain to those who’ve not been in this situation how it impacts each area of my life.

To the people telling me I’m whining

You will find I don’t do whining. I do getting on with life. Some people actively try and get me to talk about things related to Mum and I actively don’t, unless it involves sorting something out or trying to understand something, because I’m a very solution-focused person and I don’t see the point in whinging or whining. I blog because it’s a lonely situation to be in and others are in that lonely situation to, and I have had messages from people thanking me for helping them feel less alone. I blog because there is so little out there for young adults who have parents with a terminal diagnosis, and I want to use my voice to change that. I blog because I find it cathartic.

To the person who told me I can’t spell

I’m English. We use ‘s’ rather than ‘z’ when writing the word organise. I’m sorry if that offends you too much to read my blog.

To everyone who referred to me as a caregiver

Yes, I am classed as a ‘Young Adult Carer’ according to the local carers charity, something which I’m still coming to terms with. But please remember that first and foremost, I am a daughter of an amazing woman who is dying in front of my eyes due to a really crappy disease. I am hurting, I am coping, I am trying to come to terms with things.

To everyone who told me I’m not dying

Firstly, you know nothing about my life so you don’t actually know that. That aside, I’m not dying, but my Mum is. Someone who I’ve known all my life. I’d argue that a part of me is dying because she’s been such a huge influence on me and yes, some of her will live on through me, but equally some of me will almost go with her.

To the people who told me to ‘get my priorities straight’

Mum is my #1 priority. Everything in my life is organised around that. Next week I’m working on a residential – but the staff are aware of my situation and there is a backup staff member in case I have to go home. My supervisor at uni is aware of my situation and when necessary I go home rather than staying at uni. I have missed lectures and I have had to use mitigating circumstances. I’ve had to move an exam to summer, and therefore revise all summer, because I missed some of uni to stay with Mum. I have lost touch with friends because I’ve been home rather than going out and socialising on weekends. I’ve missed their birthdays, their concerts, their celebrations and it’s amazing any of them have stuck by me to be honest! My Mum is my priority but I also have a life to live.

To the person who said they hope my Mum uses her strength to smother me while I sleep

Did you actually read what you wrote? (Also I sleep upstairs when at home and Mum can’t currently use the stairs so hopefully I’m safe for now!)

To the people who said I see my Mum’s illness as a nuisance

Yup, that’s cancer for you! It is a damn inconvenience and a pain the backside for all involved.

To the people who said I need a reality check

Every single time I see my Mum disappearing into her armchair, every time I see her knitting baby cardigans for the grandchildren she’ll never meet, every time I see the ice cream tub of medication in the bathroom, the hospital bed in the lounge, the ‘get well soon’ cards all around the house… I get a reality check. I have seen my Mum almost die and come back to life. I have fed her when she couldn’t move her arms, wiped her face when she could hardly speak, talked with her when she was seeing a dinosaur on the wall. I’ve had a lot of reality.

To the people who said ‘I’m making it all about me’

I’m writing from my point of view. I can’t write from my Mum’s point for view (or my Dad’s or my brothers). I write personally from the heart about how I’m experiencing the ups and downs of this situation. Please refer to the response about whining for why I write this blog.

To those who say they hope Mum never reads my blog

She reads whatever I post. We chat about it, we chat about a lot of things as a family. When I’m unsure about something I ask her before posting it, and I asked her before starting this blog.

To those who ask me to think how my Mum is feeling…

…having brought me up for years

My Mum is proud of me. My Mum is incredible and I hope that some of that is reflected within myself. My Mum loves spending time with me and I love spending time with her. I help around the house as much as a possibly can when I’m home (and frequently do things when I’m not, whether it be supporting other members of my family or buying suncream).

…when she doesn’t have long left

My Mum has a strong Christian faith and is incredibly peaceful. I admire her faith and her strength so much, I think it’s amazing.

Finally, to everyone who asked what it’s like being me (normally in a slightly less polite way!)

It’s damn hard a lot of the time, but also wonderfully brilliant at times because I have a loving, caring, family and some wonderful friends. I am so grateful to have so many people around me who care for me so deeply, and I never take that for granted. I am lucky that I have had time with my Mum to learn more about her, to develop our relationship, to ask her questions. Yes, I struggle and I suffer. I frequently wake through the night with thoughts, worries and flashbacks. I cry often. I get stressed. I don’t want to do into things any further then that because I select what I choose to publish online. I can assure you, though, that I am both deeply hurting, and deeply grateful for the situation I’m currently in.

I’m sorry this is so long, but I wanted to address as many points as possible. Thank you to anyone and everyone who has read it through. Thank you to all those who’ve sent me such lovely and heart-warming messages and comments. Thank you to everyone who continues to support me and thank you to everybody who has shared my writing.

4 thoughts on “Dear Humans of Facebook

  1. You are very honest and brave to share your feelings both with those that know you and those who will never meet you or understand what you are feeling. Those quick to judge are not the audience you are sharing your thoughts with. The blog helps you but also I am sure many other people battling the same emotions. You are such a caring person and champion so many good causes and I hope you take great comfort from the love and support of your true friends as well as your family and at the end of the day they are the ones that count. You are amazing, brilliant, fragile and beautiful. Jxxx

  2. Fully expect negative comments on FB and Twitter – try not to let them get you down. It’s the nature of the beast. People say horrible things they’d never dream of saying to someone face.

    The comments you have noted here are one of the reasons people don’t talk about death honestly. People are so easy to judge. I remember a huge part of dealing with my own Mums death was working out what I was allowed and not allowed to say about it! That isnt good for anyone’s mental wellbeing and I really admire your courage in publishing honest thoughts. When faced with such awful realities we think a wide range of things, some of them might be considered selfish (and some just bizarre!) but we cannot deny the way we feel. These thoughts and ideas are part of a process of coming to terms with it. Besides I didn’t regard it as being selfish or whining – just highlighting aspects of dealing with cancer that others might not have considered or are going through aswell.

    Chin up! Keep writing! x

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