Alone in a crowd

[tabney]

I need all of you. I feel very alone. I have reached out to so many of my friends and received very little response. My family is concerned but they don't call me to see how I am doing. They call each other. I post things to cheer people up but, truth be told, it is really to cheer myself up. It is sad to me to know that in a time of true need, most of my friends are no where to be found. I can no longer ignore what is inside of my heart. I feel very alone...even in a crowd!

 

[CindyM]

Toni- it is sad to feel this way. We all do from time to time, I suspect. Hoepfully it will pass soon. If you feel this way very often, or for longer than a day or so, you might consider telling your doctor. He can prescribe something to lighten your mood.

Keep in mind you have a lot going on right now and it is easy to feel alone and vulnerable. Are you eating right and getting lots of rest? You need to take extra care of yourself during these stressful times.

Why not go out and do something just for you today? Get your nails done, buy that book or CD you've been meaning to, anything that will help you remind yourself that you are a lovely and lovable person.

Maybe you could call one of those friends or family members to go along. You deserve support even if you have to ask for it! Write back and tell us how it went! Cindy

 

[vmd]

Toni:

Like you, I feel different from others around me. They are not dealing with a life-threatening illness and perhaps do not know what to say or how to comfort someone who is. On the other hand, the fact that they are there to listen may be enough.

 

[Mike27]

I think that some don't phone because they don't know what to say. I haven't heard from MANY of the people that I used to, I put it down to that reason.

You're apart of whole community here, though!:-D
If you just wanna chitchat...

I see in your profile that you're a movie buff. What kind? I like pretty much anything short of looonnngg dry documentaries.

Cheers!

 

[lunarruna]

ALS definitely scares the shit out of people---they react in weird ways for sure. Many just feel they dont know what to say and that it is just too awful--they cut off......well, in the meantime the PALS are living it out and so often have that isolated feeling. we've seen it all....early on at my husband's family gatherings no one would mention a THING about the ALS..it was the big elephant in the room. After the gathering he would be so down. The thing that really bugs me is the other type of people that visit and COMPLAIN about all the woes they have...."Oh I cant retire for 15 years.." Oh I hate my job, blah blah"...meanwhile Shannon is sitting there thinking he wishes he could hold his head , or swallow maybe. ARGGHHHH...
anyway....
Movies are great...we get Netflix and that sworks out great because Shannon can shop in there and pickout flicks.
Latest best pick: The World's Fastest Indian...Anthony Hopkins, based on a true story about an older guy setting the landspeed record on an Indian motorcycle.
Plus we go through the HBO series...Deadwood was really good...now we moving in to season 2 of The Wire. Can get these through Netflix too.
Netflix is a great gift for PALS! Ask for it!
Later, Beth and Shannon (tonight we are watching "Heat" with DeNiro and Pacino)

 

[Frizzel]

Thank you for sharing your alone side, too Toni.

I felt sad when I heard you say you felt alone in a crowd. I was also relieved because you took the time to say how you REALLY felt. Because I no longer drive and we live in the country I can also feel alone.

So, I invite people over for an hour or two just to watch a TV show, movie or play board games. I'm a person who would have gone anywhere any time and now I can't get anywhere without someone coming to pick me and my chair up.

I'm learning to bring my chair which helps people feel more comfortable since I can move faster. I guess I'm having to teach others that I'm still who I always have been, we just need to change the 'play' field so we can still get together, only in different ways.

Let people care Toni....and we do....Frizzel

 

[tabney]

thanks

Thanks to all of you for replying. However, I am saddened to know that all of you have dealt with isolation from friends. I am sad because we all need our friends. I don't want to talk about my illness with my friends. I want to go out to dinner, laugh, talk about silly issues, live. I don't know.....I just miss them. Toni

 

[CindyM]

Toni-we have to set the tone, I think. People take their cues from us. People fear a dibilitating disease and cope with it in a variety of ways. Some will distance themselves and others will "hover" but if you act natural they'll adjust, don't you think? Cindy

 

[alspatient]

coping up with loneliness.

Hi Tabney,
I felt misrable when the circle of friends started shrinking for me. So I started making new friends beyond the real world. One reason why I stayed away from this forum was that I was scared to be told about the problems that PALS face. THen it dawned on me that it is escapism. I signed as a member today though I knew what I have seven years back.
Now I realise the importance of visiting sick people. If I could get well again I would do a lot of comforting people like me. But that will not happen. So I look at the successful career I had and recall the number of people I helped. They don't exist for me at my need of hour. They will not even send me the courtesy of sending me a mail on my birthday.
But there are people who look at me and have shed ters and cruied or gone away and cried to my wife. Grown up men have cried looking at me. They make up for all the neglect I get. There is some goodness left in men. learn to scale down your expectations from others. Expect nothing and then treat what you get as a bonus.

 

[Frizzel]

ALS patient

Whew! That was a powerful e-mail you just shared with us! Thank you for joining with the strength of this forum.

 

[Omar]

Hey Toni, hey guys

Yes indeed we are alone in the crowd, sometimes I even feel that I am more close to the pets I am living with than to people. I have been depressed toni for a long time and was spending my time in my room, now I am taking cypralex and xanax and I am pretty much happy and optimist, I am even going out, but still it hurts when deep inside i know that I can't date anymore but still we can enjoy lots of other stuff in life. Like sitting in the sun wow I love it,
and ofcourse visiting this forum where I feel again alive in a crowd.

Omar

 

[liz]

Omar -

Who said you can't date anymore? There's folks here that have gotten married after their diagnosis. Don't count yourself out yet.

Liz

 

[vmd]

Dating and marriage after a diagnosis? Wow! Yes, hope is a very powerful weapon against this disease.

 

[Paty]

Hi Tony

I know how you feel, although I am not the PAL but the CAL to my husband I too feel isolated, his so called "FRIENDS" only two that live away have come to visit (they are childhood friends) one from their 5th. yr. the other High School friends.

Even his sister's wouldn't visit, only his older half-brother, his mother and of course our children and grand-son when they are off work.

I WANT TO LET YOU KNOW THAT WE ARE ALL HERE FOR YOU, TO HEAR WHATEVER YOU ARE FEELING, AND DO AS OUR FRIENDS TELL YOU, GO OUT DO THINGS FOR YOURSELF.

HERE'S MY E.MAIL WHENEVER YOU FEEL LIKE WRITING ME: [email protected]

BY THE WAY THE BROWNIES CAME OUT SCRUMPTIOUS GOOD, POOR LITTLE FAT DUDE HE ENDED IN MY OVEN.

WITH LOVE

PATY
HUSBAND'S CAREGIVER DX10/17/05
BAJA CALIFORNIA, MEXICO

 

[liz]

Omar, vmd -

Don't rule out having kids either. I know it's hard to think about the future when you have this disease, but try not to limit yourselves. PALS have done it before and will do it again. Now get out there and breed, you crazy kids!

Liz

(PS - did I really say that?)