I hope you are well

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nebrhahe53

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>I truly believe most people mean well but are clueless. I just messaged an acquaintance explaining I was going to be doing a mutual project a little differently because now I have beginning ALS. She sent me a lovely reply. Of course that's fine do it however you want. And closes with " I hope you are well"!? Yes I am fine except for this pesky terminal illness!

Nikki I saw you posted this in an older thread. I got a letter like that from the neurologist who diagnosed me-said the exact same thing at the end...hope you are well. That's funny isnt it?
I also cant shop at Walgrens anymore-apparently the clerks are all told to say "be well" as you are leaving.
Really feel like turning around and saying I'm dying! I know they mean well but...
 
Neil, I've gotten similar statements in cards from friends, the one that told the most about their knowledge of ALS was, 'Get well soon'. I know they mean well but sometimes you have to wish people would try to learn a little bit about what your going through before they write such statements.
 
Drives me crazy and I'm not even the one that's sick! Why don't they Google it? That's what I did..would do. The other day a woman at work who I barely knew asked me how my hubby was doing. I snapped "oh great except for the dying thing.." :/
 
And friend of mine lost his 21year old son several years ago. Having been through this experience he doesn't ask how are you doing. He asks how's today. With a terminal disease. All you have is today, some are better than others.
Vincent
 
It's difficult to know how to respond to well meaning but ignorant folks. To this day I struggle with "How's your wife?" It's not polite of me to shock their system with "She's dead" so I've learned to say "Unfortunately, she passed a few years ago, but thank you."

My mother-in-law is suffering from dementia and is dying. But I always wish her "the best of health." I wish I knew a better way to word my sentiments.

Perhaps PALS should get a pass on politeness. Many are understandably most depressed and as irritable as I was when I was a CALS.

But if you can suffer the ignorant ones, more power to you.
 
Shows you what we are up against.
No Michael J Fox
Most people have no clue regarding ALS....Lou Gehrig's disease doesn't ring a bell either
 
I was out shopping the other day and bumped into someone I hadn't seen for a long time. She caught me completely off guard, I wasn't prepared to answer questions about my husband (I was just intent on buying something that he can manage to eat - not an easy task these days). To make matters worse my 16 year old daughter was with me so I didn't want to say anything to upset her. My knee-jerk reaction to her smiling "How is your husband" question was to say "He's not well but he's going to be okay." Then I realised what I had said and said "no well actually he's not but.." I was so completely tongue tied it was ridiculous. I eventually just said goodbye and walked off leaving her in confusion. I felt so stupid but on the other hand what am I supposed to say? If I tell the truth about the situation it horrifies people and undermines my husband's dignity. If I don't tell the truth I feel so completely isolated because no one knows what I am going through. My answer is just to avoid people completely. I know it's not healthy, but it just seems easier right now.
 
I just resigned from my teaching position at a local college, explaining I had ALS. My department chair wrote me to say that she hoped I improved and welcomed me back into the department when I was better. Incredible.
 
yup, they abound in every country around the world. I try, honest I do try, but well sometimes it just felt like if there was anyone that I could snap at it would be the ignorant 'hope he is well now' folk ... mostly though I manage to hold my tongue, only because I feel like I end up looking the odd one having said something as gorgeous as 'except for the dying thing.

The other one I hated was - oh but he "looks" so well ... *sigh* yeah pity they didn't see what it took to get him ready for visitors and 'looking' so well ...

One day Chris was in the post office, standing in line. A man comes in behind him - oh hi, how have you been, I heard you weren't well and sold the cafe? C (Chris) I can't talk. M (man) What? (Chris had very poor speech by then). C - I can't talk. M - what? C - I can't talk. M - what? C - rising agitation - I can't talk! M - oh you can't talk? why not? C - I've got MND M - what? repeat couple of times, finally M - Oh, that's no good at all! So what have you been up to? C - I CAN'T TALK! M - what?
Yep, honestly, it was that bad ... I think we breed a special kind of moron in Australian rural towns.

Still, one of the worst I think was when Chris was still mobile and would go to town each week to do the grocery shopping. Because he had run cafe's for many years, he was very well known. Being bulbar onset, his speech by now was very hard to understand. He would be in a shopping centre and someone would corner him - oh no, you sold the cafe, why? He would tell them what he had, and with his poor speech the person would start to wail. (he was at least as well known for his ability to talk anyone under the table as he was for his home cooked food) This would make everyone look at them, and guess what more people knew him and would come over so worried, why was someone wailing, and then join them as they found out what was going on. One day he had 8 ladies crying all around him. He had EL, so he stood there laughing, whilst they cried, even though he was highly distressed. I've often wondered what those women thought as no way could he explain EL to any of them, he had enough trouble saying MND. He became very unwilling to leave the house ...
 
I just resigned from my teaching position at a local college, explaining I had ALS. My department chair wrote me to say that she hoped I improved and welcomed me back into the department when I was better. Incredible.

That really is incredible, guess you have your own special kinds of morons too
 
Yea, we got a bunch of morons here. Yesterday a couple friends from church stopped by to visit. In the course of our talking, they were surprised to find out that if my diaphragm doesn't give out before then, I'll end up totally paralyzed. It was like they had no idea that ALS is fatal. They've only had several months to get used to the idea
 
yup Dalvin
I could explain - he has been diagnosed with an incurable, terminal disease that will waste him away. Still next time you see them - oh and how is Chris now? Um, worse than last time, he has an incurable, progressively debilitating terminal disease. Oh yes I know, you said that but is he doing ok ...

count to 10 and remember they aren't worth the effort ...

obviously Dalvin months aren't enough for special morons ;)
 
Vincent I have a friend who says something similar. "I hope today is a good day" which is probably the best comment people can make in any situation of terminal illness.
People do mean well but many don't have a clue.
Mike I was on the receiving end of asking after a spouse and getting the answer "he is dead". Your reply is much gentler
 
My wife's x and I had a short talk a while back. The subject was his kids/my step kids. I've raised them, put them through school, was the dutiful step father. There are some provisions in SS that permit some eventual benefits to them but only if we get the story straight. I told him I was 18 months in to this disease (at least), so we need to get cracking. He agreed. He told me he has a 10% chance of prostate cancern "so he knows just how I feel".
 
Just had a head hunter call me today-how are you? I have ALS. What? Lou Gehrigs disease. Hope you feel better soon. Its terminal. Oh...
 
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