Dying Man’s Daily Journal – You don’t have to be alone

I always encourage all to read all of the comments left by others here on the blog. So often within these comments wisdom far beyond any I could ever hope to provide. Often there we will also read the touching and heart breaking stories of those that so badly need the loving support I know from personal experience we can all provide here. Such in fact is a comment left several days ago by Ellie. At the time I just did physically not have the time to respond in the way I would like to. Yes, even I have busy days some times. First off, here is Ellie’s comment:

“Hi, Bill.  Thank you, thank you for this wonderful website.  You are a hero to me; I needed to find this page today.

We are almost in an identical situation.

My name is Ellie and a gal your age (small world).  I have had a rare type of autonomic nervous system failure.  I, like you, am dying of congestive heart failure, weekly hypertensive urgency events, inability to retain water (I have a central port where I get saline bi-weekly), continuous heart attacks from variant angina, etc.

May I ask you for some sage advice?

First off, I am blessed with a loving husband who is supportive.

After my parents (great caregivers) both died, many remaining family (in-laws and my relatives) and close friends pulled away as soon as my pcp told me to inform them I’m a goner. (Stupid me.)

My sister has a denial problem and tells people I’m not even sick (how weird is that?).  My in-laws are medical professionals and tell me “I don’t know what to say to you.”  Wow.

Response are: “I don’t know how to talk to you” “you lied: you said you were dying and 18 mos later you are still alive” “I’ll drop off some food (so I don’t have to talk)” “I’m spontaneous so if you aren’t up to the visit, then too bad” “can I help? – you tell them how they can help and then they DON’T do it!”

Every day I have many things I must do correctly or I will die.  It is that simple.  But I can’t explain this as they WILL NOT LISTEN if I discuss my illness.

So I try to make visits and calls about them. But these grown adults act embarrassed and anxious to get away from me.

What to do?

I’m a good listener, witty in conversation, well read, volunteer online, and do medical research for friends/family. I am friends with the 10 or so people in my state with my illness, thank God. But my friends since childhood are running away.

If I cannot add to others’ lives, what is the point of all this suffering?

Any brief thoughts on this, Bill?

It is an honor to have read your story.  I’ve found additional strength in your tale of bravery.  I hope today was a good one.

Thank you very much.

Warmest regard and respect, Ellie More”

Now back to me.

Hi Ellie. I thank you for sharing your story with us. When you describe your medical condition, I am amazed at all you are going through. We know heart failure is not a condition unto itself, that there is an underlying condition that brings it on. i am certainly not a doctor to be able to explain such things but what you are going through is different and many time worse than am I. If I don’t over do it I go through most days in relative comfort. Yes, I get chest pain but my nitro spray quickly takes care of that. Shortness of breath and constantly feeling tired, worn out are my big issues. When it comes to the fluids I tend to retain fluid and require what I am told are massive doses of medication to pass it. Many times I have said I am a lucky man and when I read your story, that fact is really brought to mind. My heart, what there is of it goes out to you.

Now when it comes to dealing with family and friends that is a hard one. This hits right to the core of why I started this blog way back when I did. To try and create a spot where those with a terminal illness and there families can come and receive loving support and comfort. At the same time possibly providing a venue where a greater understanding for both can be reached. People fear death to the point of being nervous to even think of it or talk about it. When it suddenly jumps up and “hits them in the face” when they are forced to deal with it, they just don’t know how to react. How should they react? I suppose in the best way they can based on their personal thoughts, feelings and fears.It is hard but by even doing their best it well may fall short of what we may hope for or even what they may be hoping for.

I read the comment left for you by our dear blogging friend Mel. I hope you have read her comment but if not, I am reposting it here. Please know you are welcome to return here as often as you like and know you will receive loving support. Here is Mel’s comment.

Submitted on 2012/02/11 at 4:43 am | In reply to Elegia More.

Oh Ellie–such a candid and honest, albeit difficult thing you shared here, with us.  I’m honoured that you felt you could.  And I hope you remain and find some support through the folks that grace this little haven that Bill’s dedicated to.  It’s a lonely thing, being diagnosed and being handed the raw truth about our mortality.

I know how difficult it was for me and how difficult it’s been for my sister who’s recently been diagnosed with oral cancer.  People had some very normal reactions–because they don’t know what to say, what to do and how to face the pending loss, they offer lip service….and some who really want to be present, just can’t seem to make themselves deliver.  It’s their way of dealing.  It’s not fun for them and it’s not fun for us.  We can tell them what we need or would like and they can yes yes us, but sometimes it’s just overpowering, I guess.  Fear does stupid things.  Denial is a weird system of coping–but it works for some.  And mortality is everyone’s companion, even though some want to pretend that doesn’t apply to them.

I try to accept that it’s just where people ARE in their own process and keep moving, embracing those who aren’t there–and I just keep moving. That’s the same thing I share with my sister.  It’s just where they are.  I don’t get to ‘move’ them any faster than they’re ready to BE moved.  And I pray for them and bless them….cuz really, I get the privilege of not being in their shoes.  I was there once.  Circumstances moved me from that place.  What I get from where I am today is an enriched piece that I can some day hope they’re able to find.  But I can’t make them be where they’re not.

I know it’s lonely and difficult and a hard place to be.  I’m so glad you’ve been able to continue to connect with people, no matter the medium.  And I’ll hope for you to stay connected with us, here. I say it loudly because I mean it…..NO ONE needs to do this alone.  You shouldn’t have to–and gosh……look at where you landed. Here! A place that invites you NOT to.

*huge hugs*

I hope you’ll remain

5 Responses to Dying Man’s Daily Journal – You don’t have to be alone

  1. bc says:

    I’ve long thought that when you’re seriously ill there are ways, especially at the beginning, when you have to be almost stronger than those about you. Poor Ellie. That’s grim and very sad. Their loss. I’ll say a prayer for you.

    All the best.


  2. Mel says:

    If I cannot add to others’ lives, what is the point of all this suffering?
    That’s such a familiar question–and one that I understand fully.

    I think you underestimate what you are bringing to others, Ellie. It’s a wild guess–but I remember someone looking at me and growling ‘you don’t have a CLUE all the lives you’re touching, do you?’. And the answer was ‘no’. I didn’t. I couldn’t see that I was adding anything BUT chaos and sadness.

    Too close to the forest to see the trees, I suppose. Too busy riding the storm to see the good coming from it in the lives of others. Too busy seeing how it was affecting me for the NOT fun–to see how it was stretching and changing and moving people around me.

    There are 10 that would be 9 if you didn’t show up to be there for the others, Ellie. There are people you’ve yet to get a chance to touch that’ll be cheated out of that. There are people being stretched and changed and moved that you don’t get to see.
    And there are countless others who have been gifted just by the words you shared here.

    I think we don’t get how huge that ‘ripple’ is. We tend to think in terms of the immediate–of who’s in front of us at that moment.
    I do.
    But truth is–you pushed ‘published’ and you thought it was a ‘done deal’.
    And look………see what you woulda missed, what others would have missed had you not bothered?

    JUST sayin’…..

    You add to lives in ways you couldn’t even imagine, Ellie.
    Every day.

  3. rangewriter says:

    Dealing with mortality. I think that’s what all of this comes down to. Until a diagnosis slaps us in the face, most of us simply want to forget about our mortality and when someone else falls seriously ill, their illness feels like a slap in our faces, too. I think sometimes, it may be harder for close family and friends to respond with compassion to a dying loved one than it is for strangers. I’m not sure why that is.

    And I wonder how much of that discomfort amongst our loved ones isn’t also a tiny bit of …., “Well, I have my problems to deal with, I can’t deal with so-and-so’s problems, too…..but oh…wait a minute…so-and-so’s problems are WORSE than my own, and so-and-so’s problems are never going to go away….oh, it is too much, I can’t think about it, but I should, Oh dear, I’m an awful person…oh I can’t think about it right now, I have to think about my own problems…..oh dear, I’m scared…oh dear can you imagine how scared so-and-so is? I have no right to be scared, but I am scared.” It’s almost like, in the face of death, onlookers feel guilty for their own, uninterrupted life.

    I think I’m not making sense. What I mean is, I think it is easier to reach out to someone we don’t know well than to someone we love. Think about how nurses, doctors, and hospice deal with strangers, yet often, I bet they have trouble dealing with their own loved ones in the same situation. ?

    I think you make perfect sense in what you write about how others face dealing with a loss, which really is so sad. Is there anything we can do to help change people’s attitude about this?

  4. Hilary says:

    Hi Bill .. I enjoy reading your blog and articles – I am healthy and my mother 91 has suffered major strokes .. she can’t eat or drink, but can/could communicate a great deal. We never really ever discussed her condition .. the stroke element induced heartache she found impossible to deal with .. ie not able to cry – she is very strong .. and on occasions had private talks with people. I have been lucky with vicars and I have a wonderful therapist, whom my mother treats as a 2nd daughter .. and gives her much much spiritual strength. My mother has great faith and has found her own way through …

    However – my real purpose in posting is the ability to cope with the people we visit – I worked out very early that I needed to be armed with articles, ideas etc that would interest my mother – I’d read to her … I wrote out to relatives and friends – hence the blog – but the letters would mainly (basic info on her state) include stimulating and interesting articles – then we’d be triggered by our discussions or letters we’d have back, or the Chaplain’s bookmarks with a quote on it … I’d be asked to find out who Alcuin of York was … (he was Charlemagne’s mentor) – fascinating information … history and my take on life came to the fore ..

    I’m now using this approach as a volunteer at the Nursing Centre where my mother is a resident … and it’s working there too … it cheers them up, gives them something to think about, I’m always sent away with questions to answer … and so it goes on …

    At times I just need to be with my mother .. sitting peacefully and reading – especially now …

    But Bill your blog has really opened my eyes to another aspect .. I’ve just written about it to a 95 year old ‘aunt’ who is very with it – and I’ll be interested to see what she has to say about it – sadly she’s too far away for me to visit … 5-6 hours …

    This is long – but I hope perhaps gives another take on things to talk about, or an approach to visiting …

    With thoughts for you all .. Hilary

  5. Cat says:

    Ellie, I am so sorry that you are receiving such a lack of support from your friends and family while you are dealing with such a difficult illness. I can only hope that they don’t mean to be cruel and don’t realize what they are doing and how hurtful it is to you.

    My guess is that, as rangewriter says above, they are scared and really are only thinking of themselves and their own fear and discomfort in confronting issues of mortality. I’ve always been shocked at the way some people respond when a person they are very close to becomes seriously ill. I think sometimes people truly don’t know what to do or say, and are so afraid they’ll do the wrong thing that they choose to do nothing at all. Others feel so awkward expressing sympathy or concern (and I can relate to this, because I have always felt extremely awkward both expressing and receiving sympathy — it’s not that I don’t FEEL it, but I just feel so uncomfortable EXPRESSING it) that they end up saying absolutely the wrong thing. Still others displace their anger about what is happening to you ONTO you, blaming you for being sick and making them sad or angry or uncomfortable.

    I wonder if it would be helpful for you to confront them directly and tell them, “I know that you don’t know how to treat me or what to say to me or how to act around me, but I need you to get over it. I am sick, but I am still me. I am still your sister/friend/daughter-in-law, and I need you to treat me with the same love and respect that you showed me before my illness. Act like yourself around me. Show me the same care that you would want to be shown if you were ill. There is no need to feel awkward around me. I am the same person I have always been; I just have this illness to deal with now. I’d like you to stand with me and support me as I face it.”

    I am very glad that you do have a supportive and loving husband standing with you, and that you have found a community of friends on this blog. I wish you peace and love, and I hope that your family and friends will come around and give you the support you need and deserve.

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