Exposing my condition to the public

[Music67]

Someone here mentioned getting tired of the old dry "Have a nice day-type" salutations that seem to emphasize people's disconnect with what is going on in our lives - which I agree with. So. . . I went to a Subway sandwich shop last night (I could have been at any fast food-type establishment) and for the 1st time when the preparer asked me how my day had gone I decided to actually tell him what I am going through. I asked him if he was aware of the ice bucket challenges going on and he replied he was well aware of them at which time he asked me if I had participated in one. I simply answered "No, I have the actual disease that is being recognized by the challenges." You should have seen the look on this guy's face change to one of somewhere between horror and solemnity. However, when I was all done with my order he did still say "Have a good evening". Hopefully he meant well.

 

[bigmark1954]

I have had the same reaction from people. I have selectively told a few people that I deal with in public, their reactions are much like the experience you had Music.
I try not to tell people I run into that know me, unless they ask about my voice or something......I have to be real careful to keep it brief because if it is someone I know and they show compassion I get emotional quick.

 

[nebrhahe53]

One of my good friends (I dont have many) came by from out of town to visit me. He knew what I had and we discussed death openly. I think he knew this was the last time he'd probably see me and he actually broke down crying when we hugged goodbye. I was conforting him. Never thought that would happen!

 

[bigmark1954]

One of my good friends (I dont have many) came by from out of town to visit me. He knew what I had and we discussed death openly. I think he knew this was the last time he'd probably see me and he actually broke down crying when we hugged goodbye. I was conforting him. Never thought that would happen!

I have let most of my friends go, don't answer my cell if it rings, sometimes won't even answer the door. During the first 3-4 months after my diagnosis, I didn't even leave my house except for pharmacy runs or post office, and doc appointments. Those were dark and emotional days.
I only have one friend left now, he would do anything for me if I asked. We ride motorcycles., and go to movies, or to lunch every couple of weeks. He always asks me if I need any help, like yard work etc. I am to proud to ask for help, even if I did need it.
This death sentence involves a lot of isolation for me.

 

[dalvin]

I don't worry too much about what others think. If I want to go someplace, I go. If people ask, I tell them but otherwise I keep it to myself. The few friends I have, have taken it well although I'm sure some really don't understand what ALS is or what it does

 

[cheerleader]

Big Mark, just a thought but have you considered that you are giving a gift to others when you let them help you? I personally have found when I help others, it enriches my life. So you may be giving you friend a gift by giving him the privilege of helping . With your sense of humor, Please consider getting that cell phone back in action and rejoining your friendship group and sharing this humor. Glad your cycling still brings you joy!

 

[MaxEidswick]

>This death sentence involves a lot of isolation for me.

open up. tell everyone. if someone offers to help let them. that's the best we can do for them.

and tell them dying is a pain but mostly painless

 

[krnNdug]

I was going to keep it to family and close friends but prayed about it and posted it on that infernal Facebook. I have seen so much love and support it amazes me. Now I am busier than a one legged paper hanger with lunches and coffees and the local ALS walk. I can't believe it but I have over 100 people walking with me. I don't know around half of them. They have said they are amazed at my positive attitude and want to learn more.

Because of all this I am glad I "went public". People I don't know have donated a lot of money. People are helping around the house and I have been nominated to the local university's architecture department for a possible complete remodel of our bathroom. None of this would have happened if I was silent. I am blessed, but this is what works for me.

 

[Atsugi]

We were open, first to parents and then family, finally to everybody.
We were naturally not social people but then my daughter took up a collection for ALSA and a dozen people joined us for an ALS Walk, complete with Krissy's Kruisers T-shirts. Suddenly we weren't isolated at all. The neighbors helped out, and the kids' sports teams made a couple dinners. Family came to visit.

I suggest letting people help out. I think even if you're not the social type, it's sometimes useful to have one or two others to help out once in a while.

 

[Mediasmart]

I was initially pretty guarded as to who I let know partly out of false pride that I am infallible and mostly because I hate pity with a passion. I've evolved to the point of not caring who knows and whatnot but am very careful about in what context...I.e. it is humiliating for me to be helped to do something just because I have ALS but am still capable of doing the task or chore. I'm pretty stupid too.

 

[gooseberry]

My husband doesnt want anyone to see him as he physically changes. But as my son told him, dad most of these people.dont know you and those that do love you. He was making an argument for my husband to leave the house at the time. I accept help for things like mowing, staying with my son, driving my husband to appointments so I take less time from work. He doesnt always like it but it greatly reduces the stress for me and our family. As one person trying to be the breadwinner, caregiver, and support system, I ask you to think about accepting help for your CALS sanity. I was being stretched very thin.

 

[Santa joe]

I found with Joe, the emotional toll with ALS was just as bad as the physical toll. In the beginning - he would cry when I cut the grass because he could no longer do it. Just little things. Accepting help was very hard as he was always the one helping others. We did not keep ALS a secret but as he progressed he no longer wanted to go anywhere or do anything. Towards the end, he didn't want company to see him the way he was. Be open and accept any help that is offered.

Debbie

 

[gooseberry]

Debbie, My husband doesnt want the help. He figures I will find a way to make it happen. I will but sleeping 4 hrs a night, trying to work full time, and handle a. kid with extra needs was reaching a critical point. It took my son explaining this to him. That is why he is willing to use a wheelchair at times or go out to a movie. It was impacting our son in ways my pals didnt want..me being strung out was okay but not our son. Lol.

 

[nebrhahe53]

yes i'm coming to the same conclusion-at first I was upset because I couldnt do things I once did like the lawn or mechanical chores=now I let people know.
One example that actually embarrassed me was when we went to a furniture store to get a special recliner that can stand you up. When the salesman found out I had ALS they gave us an extra $50 off.

 

[Schmidhogan]

I have been inundated with sympathy gifts since I was diagnosed. I know my friends mean well but I feel some level of humiliation at being singled out just because I'm dying. Pride I guess. Friends are always wanting to drop by to see me. In the extreme a good buddy hosted a birthday party for me with 20 of our closest friends. He means well but doesn't understand how stressful it can be for me to last 3 hours at such a party making banter about topics that no longer interest me. Everyone brought presents too. Give me a break. I think my caregiver wife can also be overwhelmed by all the well wishes.
There's a part of me that just wants to be left alone. I never answer the phone or initiate social interactions. But I try to be a good sport. I know where my friends are coming from and probably would act the same way if I were in their place. Don't want to be remembered as a grumpy old man when I'm gone.