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.
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.
I hope you’ll remain