...And this is where this post gets extremely tricky. I don't want to come across as selfish, self-pitying or bitter - I'm not - but there's something I want to say that might be challenging.
Life is fragile and this is something I'm confronted with everytime I have a bad asthma attack. I am almost always faced with the very real possibility of my death, and however many times this happens I never get used to it. It's been previously said to me by friends that I've got through the attacks before so I'll get through again, but this isn't necessarily the case and it actually makes me feel pretty isolated, because it's a denial of the reality of the situation. It denies my experience. It denies the truth. It negates my fears. I know it's a defence mechanism for them so that they don't have to think about mortality - mine or their own - but it's unhelpful. The fact is that each time I go into crisis I am fighting for my life, and the fact is that I've already out-lived my life expectancy.
Asthma attacks are not only frightening, but also extremely lonely experiences. When I'm in the midst of a crisis I can't breathe enough to speak. I can't tell anyone how scared I am. I can't ask for anything I might want. There may be plenty of physical contact but it's from professional carers and almost exclusively involves the touch of a stethoscope, the prod of a finger, the jab of a needle, invasive and painful blood tests. Of course I appreciate that this is all absolutely necessary in the attempt to keep me alive, but it's all so impersonal and clinical ... and lonely. What I crave for at these times is not only for my life to be saved, but also the gentle touch of a friend; the company of somebody who cares about me for me; someone to hold my hand; or just have someone be with me, sit with me, help me through by being there with me. I truly appreciate how difficult it must be to watch someone you care about go through the experience of a severe asthma attack, but I don't believe it's actually as difficult as going through it. I also appreciate how difficult it is to be made to confront the reality of death and to consider your own mortality, but again, I don't believe that's as difficult as having a head-to-head with death. Now I'm not saying that I want crowds of people or a bedside vigil when I'm in crisis, but the company of a friend and that possibility of caring, non-clinical touch would sometimes be so very much apreciated. Yes, this has happened sometimes, and W in particular has been amazingly wonderful in this and many, many other respects, but usually people stay away until I'm well on the mend ... perhaps easier to face ... guaranteed to stay alive in the immediate moment. Of course these visits are extremely welcome and very important to me as well, but in a different way.
I entirely understand that people have busy lives and that they need to get on with them. I don't want to be the centre of attention. I don't want to appear to be ungrateful for all that my friends do for me and the time they give me when they do visit ... it's just ... Well, I need people when I'm desperately ill, when I'm scared, when I'm trapped in the isolation of my head because I can't tell anyone my fears or my needs because I don't have the breath. I need people to sit with me and just hold my hand when I'm in that post-attack big sleep. I may only be intermittently aware of their presence, but the fact that someone cares about me and is prepared to sit and be with me during those times fills me with hope, appreciation, love, and thanks. I know that it's boring sitting with someone who's asleep. I know that it's still difficult witnessing the aftermath of the struggle for survival, but it's through that struggle and in the aftermath of it that I most need love and support...
... I don't want to die alone or lonely. Would you?
********************
This has been very difficult to write and I've been very unsure about posting it. I don't want my friends to feel unappreciated or got at. I just want to be honest, tell it how it is and maybe make all of my readers consider what they can do to help someone in the moments of life and death. Even if you feel that what you are doing is nothing, or that there is nothing that you can do, the fact of being there can be the most valuable thing you can do or give.
26 comments:
Hey there, Fristly Im glad your out of hospital now. I can relate to how you feel and how lonely an asthma attack can be. And in the after math all you want is people around you. It is a very lonley place hospital. I never want to ask friends to come and visit but sometimes all I want is them jsut to come without ebing asked as i feel it is a imposition.
Asthma is so ahrd as no one knows what it is liek to ahve an attack until you ahve one. The fear that goes through you is un describable.
People often say your friends will be there and they say we will come in btu often they dont. i think aprt of it is a fear from them. I think it scares people to see someone to struggle breathing and it is never easy, I know I ahve had friends who have said we didnt want to come in incase we tired you out or you were too ill. But often no matter how ill I am all I want is company and poeple talking. Even if i cant talk its nice having people about.
sorry Im not sure if this has been very constructive. Im thinking of you.
Take care
OLive
I've wondered if you'd want me to come visit when you are still at death's door. For whatever reason I didn't want to ask. Now I have the answer.
I can't promise anything (especially under current circumstances), but I'll try and be there for you if I can.
--
You don't come across as selfish, self-pitying or bitter. You come across as very tentative in asking for something you have the ultimate right to ask for. People may also have the right to say no on any given day, but you have the absolute right to ask that SOMEONE does this for you. It says a lot about you that you don't sound in the least little bit demanding.
I'm sorry I don't do more for you. Don't say I don't need to be or anything; I will still be sorry that I've let my life get busy enough that I didn't visit you at all this time.
I'll see you soon though. Promise.
"Someone to watch over me ..." It's what we're all looking for, Honey. Just because you're ill, it doesn't give you any special rights - life ain't supposed to be fair. It's not a fairytale and there are no happy-ever-afters in the real world.
Anon - have you really got nothing more important to do?
EVERYONE is entitled to ask their friends to be there in a moment of crisis. The friends have the right to say no (and I take it you're not a good friend of Becky, thank goodness. At least she's not wasting her breath asking you for help).
For goodness sake. If anyone knows that life isn't fair it's Becky. And what the hell do you think she's asking for that is so unreasonable? NOTHING in my eyes.
Anonymous,
How dare you make such comments, you don't even have the guts to give your name.
Becky is one of the most amazing people you will ever meet and judging by your attitude a far better friend than you would ever be.
I am hoping that you are not one of Beckys friends as she deserves better friend than you.
If you do not know Becky then do not judge on what you do not know about.
People like you make me so angry.
It must be extremely frightening to be in an asthma attack and unable to communicate your fears and putting them here has made your friends and family aware which in turn should ease some of your worries...
Anonymous, (and how intersting it is that you can only bring yourself to make such comments anonymously) you are so far off the mark that I'm not even sure what you've done with it - erased it completely, I think. First of all, I'm not asking for "Someone to watch over me..." - I have that already in the form of God, who does a brilliant job of it. What I am asking is for someone to *be* with me in the most frightening and loneliest of times. The process of dying is horrendous, but I guess it's something that you haven't experienced yet so can't relate to. I'm pleased for your sake that you haven't been through that yet, but astounded by your inability to comprehend the fear in the process of dying.
So onto my wanting special dispensation because I'm ill, and your idea that you think life should be fair. No, life isn't fair, but I never expect it to be. Life is what God wants it to be for us, and although we don't always like what He has planned for us or doles out to us, we have to accept that whatever He gives us is what's meant to be. I don't ask for any dispensation in that, nor do I want dispensation from God's plans for me, whatever they might be. No, what I want is friendship, regardless of illness, but also during illness. I ask for the gentle touch of someone who cares about me, and to have that touch when I'm at my most scared and in the darkest of times. Have you never been afraid? Have you never wanted to have someone with you when you've been afraid? Have you never wanted to have the company of a friend in your darkest or dark moments?
As for there being no fairytale endings, well that depends on how you look at it and what your beliefs are. It is true that everybody dies, yes, but the happy ever after bit does happen in the form of heaven. However, just because it all ends with heaven doesn't mean that the process of getting there is pleasant, nor that we shouldn't be afraid during that process.
Finally, I thank God everyday for my friends, for all that they do for me, for all that they give me, and for all the time they spend with me. I thank God too that they have more compassion and understanding than you clearly do. I pity you for your lack of understanding and comprehension and I fear for your friends who most likely will never get adequate support from you in their greatest time of need.
So after my response to Anonymous I move onto the rest of you. Thank you. As I said at the end of the post, it was very difficult to write and I contemplated long and hard about whether or not to post it as it is such a sensitive and potentially challenging subject.
Olive, I know that you know what the experience of a severe asthma attack is like, the fear that goes with it, and the loneliness of the moment and the prolonged hospital admission. When reading your comment I thought, 'yes, she gets it!' I don't want people to have to be told to visit me - I want them to come because they want to come, rather than out of duty. I'm sure you're right too about the fear aspect for friends, and I completely understand that. I also understand people being unsure about whether or not I'm up to having visitors, but as you say (and as I said in my post), sometimes all you want is the company. Sometimes I don't even want people to talk around me, but to have someone sit with me and be with me makes all the difference.
Wanda and B, thank you for your support and response to Anon's comments. It means a lot, especially from people who I know are my friends :o) I considered 'moderating' Anon's comment, but ultimately decided that I wouldn't delete it, because if I'm going to put my thoughts out there into the ether then people have the right to respond, even if it's in a very misunderstood and troll-like manner. However, I will come back to them and try to put them right, try to instill some understanding, reiterate my point ... and hopefully with some grace.
B, thank you for your reassurance that I don't come across as self-pitying, selfish or bitter. It is something that I worried about with this post, as you know because I said as much. Of course you're right that people have the right to say no on any given day, and I respect that. I suppose that's something I didn't say in the post, even though it's something I thought about and believe, so thank you for reminding me that it should've been there. Of course people have the right not to come at those times that are hardest ... but I also have the right to ask for them to be there if they can be. I suppose, too, that it's difficult for people to ask what I need at what times, as you highlighted, but then it's also difficult for me to say what I need and when.
Sage, thank you for your comment and gentle understanding. I hope you're right that putting my experiences and fears in writing here does ease my worries. I think it will, but it's difficult. I was very unsure if this was the right place to say these things, but also didn't think I could gather up all my friends and family and say, 'Now listen up, there's something I want to say and it's challenging, but here are my needs.' And anyway, I thought that maybe I'm not alone in how I feel about this kind of thing in this situation, and that maybe others would be able to relate to it. It might also make others who read my blog think about what they can offer as friends when they feel as though they can't do anything or that what they do do is useless. The point is that the simplest of things, which can sometimes be the hardest of things, can be the most important and valued things.
Becky.
The person that posts as anon is gutless and has no understanding of what it is like to live with and deal with a life threatening situation. I know a few people who have had unproductiove and basically darn right rude and mean comments from an anon poster. I think they are out to create trouble but it doesn't make it any easier to read.
Take care and yes i do get. if i wasn't so far away i would come and sit with you.
Take care
x
This makes sense to me Becky! Sometimes having that friendly presence can make the difference between having no energy to fight back and having just a little bit more.
When I am in a pain crisis, laying on the bed while my body jerks and pain just shoots everywhere, having someone who cares about me nearby gives me a reason to fight the pain instead of just give up. Having that person talk to me, just giving me their voice to focus on, gives me energy with which to once more get on top of the pain by giving me something to force myself to focus on that is not the pain wracking my body.
It makes a major difference.
Like I said - I've been too scared (daft I know but true) to ask whether you want people so early on in your hospital stay. I know now, so I can do my best to get in to visit you next time.
I don't know how you can answer such cowardly people so honestly and gracefully. I am in awe. You are a fabulous person.
Hello
Interesting post. I'm not offended in any way. I always figured you wouldn't want visitors when you were really ill, on account of them being tiring. I shall now feel free to annoy you when ever you have an attack and I'm in Newcastle.
Yes, let's all enter the fairytale world. I myself know death. I face it every day, as do my two daughters. I have terminal cancer. I know that they will have no mother at their next birthday parties. Then I saw through a glass darkly; now face to face. It gives me the freedom to speak truthfully and the courage to accept blind attacks. I see how you manipulate the feelings of your friends, Becky. You use your times of illness to gather them close to you and bind them to you with their sympathies. If you truly seek freedom, you must be prepared to stand alone.
Anonymous,
While I feel deeply sorry for your situation but there is no excuse for such dreadful comments.
I am the person she refers to as W in her posts and know Becky well, you clearly don't because if you did you would know that Becky is the complete opposite to the way you describe and it hurts me deeply that you choose to form such an opinion on Becky when you don't even know her.
"I see how you manipulate the feelings of your friends, Becky. You use your times of illness to gather them close to you and bind them to you with their sympathies. If you truly seek freedom, you must be prepared to stand alone."
This aspect of it I find particularly upsetting because Becky most certainly does not manipulate the feelings of others nor does she seek sympathy from anyone. Nor is her request for friendship when so critically ill an unreasonable one and no one she be expected to stand alone when so ill.
I only hope you will find the love, grace and peace that Christ offers and what Becky radiates. She is one of the most selfless and caring people I have ever met.
Anon, I'm sorry to hear about your situation, and that of your children. You are clearly very angry with your lot, which is understandable, particularly if you don't have a faith (of course I don't know this of you, but it's an impression I get). However, I'm not entirely sure why you're so angry with me, or why you suggest that the way you deal with your situation gives you more 'freedom to speak truthfully and the courage to accept blind attacks.' Why should the bitterness you appear to harbour about your situation make you any more courageous or able to speak truthfully than anyone else who has a terminal or life-threatening illness? The impression I get is that your anger is actually limiting the life that you have left, and you seem fixated on this 'fairytale world' that you've mentioned in both your comments now. I don't believe that I live in a fairytale world ... in fact I know that I don't. The world that I live in is a very real world with the harsh realities of life and death being thrown in my face everyday. Yes, I have a strong Christian faith, but that is truth, not fairytale. God and my faith give me strength and support, they give me a wider view of life, death, and what is beyond. I make no apologies for being a Christian or for talking openly about my faith here, or for how it directs aspects of my life, even if that doesn't fit into your own belief system and you find it hard to accept that someone with a life-threatening disease can find solace in God.
You may think that we are different because your cancer is terminal, where as my asthma is merely potentially fatal. We're not that different - we both have to face our mortality ... it's just that perhaps you have more idea of when you will die. There's little difference at all really between a terminal illness and a fatal illness.
I have to say that I hugely resent your comment that I manipulate my friends by gathering them around me during times of illness and binding them to me with their sympathies. ????!!!! This is something that I most certainly do *not* do. I do not manipulate friends or anyone else for that matter. Asking for friendship and company in times of need is not manipulative, it is a normal, human need. Why else do you think isolation is used as a form of punishment and torture? It is human nature for people to need the company of others, particularly in times of fear and stress. I completely disagree with you that freedom is through isolation, and I feel sorry that you are clearly trying to live your life in that way, especially when you have limited time left to spend with the people you care about. You seem to be pushing them away before you die so that they don't have to miss you when you've gone. That must be very lonely for you now. I don't want that isolation and loneliness, thanks very much. I want to live what life I have to the full when I can, while I can and with people who love and care about me. I will not accept, though, that this desire for friendship is in any way a manipulation of anyone.
Becky.
Wanda, thank you :o)
Wheezy tux, thanks again. It's great to know that you'd be there if you could, and you know, we'll have to meet sometime when I'm up north if you're for it, though let's hope it's not in a crisis situation for either of us :o)
Raven/Missy, thanks for your comment too. I'm glad that my post does seem to make sense, even if it's been greatly misunderstood by one person. It sounds as though you have a really rough time of it, especially with exhausting pain and body jerks. And yes, you're right, one of the things that the presence of friends does is give you strength to carry on the battle through the crisis - an external energy. I'm so glad you can relate to this. I've been starting to think that what I've said makes no sense and is unreasonable.
Sarah, as one of my friends, I'm so pleased that you aren't offended in any way by my blog post. I think most others have also assumed that I wouldn't want visitors when really ill because they can be tiring. Having hoards of people chattering away while I'm in the middle of the fight for life wouldn't be great, but the gentle, quiet company of a friend - someone to hold my hand and sit with me in the crisis - can ease the fear and give me a litle bit more energy to fight with. Thank you again for your reassurance that I haven't offended my friends, even if I appear to have made at least one stranger very angry.
B, there is no shame in being scared to face death, whether that be your own or someone else's. There's no shame either in being afraid to ask about when is the right or wrong time to visit someone in hopital. They're difficult things to talk about, think about, ask. Please don't berate yourself for having been afraid.
Becky.
Anon - I've visited Becky in hospital. She never asked; never even implied that she would like me to. I just did. I don't understand what your evidence is for thinking she manipulates her friends? Because this blog is only a part of her life; you can only see what she chooses to share. And obviously you choose to see her negatively.
It's a horrible, horrible situation you are in; one noone should have to face. I am so sorry for that. But I don't see why coming here and attacking Becky is somehow so important to you.
Why is it so wrong for Becky to ask for people to be there for her? I would be upset to somehow find out that she had wanted this and never asked.
Becky I have to confess that the reason I have never visited you when I've known you were in hospital is fear. I've always been afraid that my visit would be intrusive, and that if I visited you might feel forced to be sociable. As B says,you don't come across as self-pitying.You certainly don't come across as manipulative. I know how strong your faith is, and I know that you,more than anyone,feel secure in the knowledge that God is watching over you. One thing that does come across though is that you are confident that you have good, true friends. Only when you are secure in your friendships can you post a message admitting that you need these friends far more than they realise and telling them when it is that you need them most. Surely true friendship is being able to ask for support and offer support without fear of causing offense. Thank you for having the courage to tell us what you need. I now know to visit in the future. As for anon - my heart goes out to her. She does sound angry and bitter - perhaps her friends have let her down. Now you have told us how you feel you can be sure that your friends will do their best to be there whenever you need them - because they love you and because they want to.
Becky, I have not much to say really, just wanted to let you know that I'm also getting "anon" comments from somebody under the same guise that they need to "correct" what I'm putting out there in my blog, ignore them, and remember that our friends know us best, not somebody who has never spoken to, or met us.
I do understand how you've been feeling regarding visits, I hate that I have to go through the inital attack alone, once I'm at the hospital because B (my B, not yours!) has Darla and is unable to just drop everything and Darla doesn't do well when I'm sick and sturggling, I want someone there, but I can't ask her to just drop what she's doing and be there, same with my other friends who are local...I think you're very brave for having put this out there, and do not come across as selfish or anything else, just someone who faces their own mortality more often than others and would like to be able to grab an outstretched hand when it gets too much..
Hope that makes sense, I'm not well today and things are all a muddle
Becky, I can only say you are so right. Having a asthma attack is both frightening and lonely and hardship for the body. One is exhausted in both body and soul after a asthma attack, and due to the body work so hard to manage to get air through the clogged up airways in the lungs, one also sometimes have muscle pain after. I remember once my whole torso was in pain aften the violent coughing.
One is lonely always when it happens. I am too. Scared and lonely. And totally in the doctors mercy. Sometimes it would be nice to get a hug. But when I get really bad in asthma, I am always lonely. I haven't been in the situation to almost die yet, but it is a lonely thing just as well. I manage by staying away from what make me ill an medicate all I can, but avoiding irritants can be lonely too. It means avoiding many people, and their homes and crowds, and social events due to fragrance and smoke. One can medicate but it does not help against everything. On every site you can read that asthmatics can today live a normal life with medicine. For some it is true, for some it is not true. I only have a healthy life when I medicate AND stay away from polluted air with chemicals, and hereunder perfume, tobacco, incense, airfresheners, fragranced products, scent marketing, aso. I absolutely understand you. Thanks for putting it to printed words. Bless you.
Anonemous: I do not find words for how unsensitive you are. First when I read your initial comment one single frase came to my mind in a way of language I never even speak.
"- What a selfish fuck!"
(Appologize everyone for the rude language)
Then I read on and see that you self-rightous it with you have termianal cancer and you think she is only manipulating her friends...
For one,
Your bad situation do not make some elses situation less important. Having a asthma attack IS SCARY. I sounds like you have never had a real bad one yourself.
And rest,
Since you have a bad situation and think you might not survive it, you should have more understanding and love to other poeople and their pain than to make your poo in their corner of the world. It is rude, selfish, uncaring and not a way to behave to other people regardless. You should rather use your situation to make you a better person than a worse. Not that I have ever known you, but sadly from the sound of it I am probably better off without.
I do not know Becky, but I support her in telling her story. I think she is brave who dare to tell her soul to others. I accidently stumbled over her page and I am moved by her honesty and truthful way to tell how it really feels. And I do agree with Becky in all aspects of her blogentry Sensitive and also her comments to the same.
When one have a asthma attack, one feel scared, helpless, hurting, the lungs taking over your situation and that is lungs not working right. That is lungs who close up, and start to strangle you from within. She is all in her right to feel the way she does about it.
I am chocked over your comment. If you are bitter, do not lay it on others. Seek their comfort instead. Being bitchy does not help anyone, and it do not improve neither yours or anyone elses situation, and surtainly not Becky's.
She tells h er need of a hug, a company there and then when she is scared and lonely. That is not manipulating, that is speaking out about needs. Need I know personally is there, and need I have also never have gotten filled when I have had a asthma attack, feeling lonely, sick and scared.
Maybe you should seek friends with her, instead of being bitchy. It could be a comfort for you. She probably have a great life knowledge and a big heart and soul. Most people with struggles in their life learn to value life and what is in it, before material standards and other superficial content, it makes them grow to better persons.
Have a nice day, and I hope you and your kids are doing fine, as fine as possible spite the situation.
Maybe you could learn from these people.
Generosity
I have been compelled to write similar recently as the DWP GOVERNMENT AND ESA / ATOS Refuse to believe i have this exact same life threatening condition .... what you have said is so true and i always feel exactly the same , i do have a support network of help though and 4 amazing children and a fab boyfriend too but they are the only ones that bring me back when i can feel myself slipping away ... i have been to itu many times tubed and vented , high care wards a/e and had many many ambulances out yet despite medical evidence to the contary i still have to prove how ill i am to the judgemental out there , this in no way helps my already low mood but there you go ... if i didnt have my children i would have given up a very long time ago ....
Hi, I came across this googling "brittle asthma" to try to explain my condition to some more-distant family members.I cried reading what you wrote. Thank you for putting it into words.
It is so very lonely to not be able to breathe, or speak, or know what to do, and wonder if you are going to die now. It's like you aren't a part of the world anymore. I have been through it so many times; and it's sometimes hard to explain to others after a few of these events why it is I'm not in the best mood, or how heartbreaking it is to go through.
The one thing that helps me is that even though I can't talk to anyone else, I can talk to Jesus; and sometimes He talks back. He's the only one that can be with us in the middle of that.
That's not to say I'm not traumatized, and maybe if I was a better Christian I wouldn't be - but, well, it's pretty rough going through what we go through!
Anon, thank you for your message, and I'm sorry to read that you too have this horrible disease. I hope that my blog at least helps you to know that you're not alone. One thing that really struck me in your comment was your self deprecation as not being a 'good enough' Christian. Faith and being a Christian has nothing to do with trauma. Anyone can be traumatised by the kinds of things that you and I go through, and it's something I often find myself talking about with the hospital chaplain. In fact, last time I was in hospital the chaplain (N) rightly said that the trauma almost increases each time because it adds to all the previous traumas/attacks. Being a Christian doesn't mean that we're not allowed to be frightened; it just means that God is there with us in our fears.
Take care, and hopefully see you around here again.
Becky x
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