There is NO awareness after all

[Nighthawk]

Yesterday afternoon, I was sitting on my wheelchair next to a bench, in one of the aisles of the nearby shopping mall while my sister was in a store buying a gift for our mother for Mother's Day.
I had my iPad on my lap reading an e-Book on the iBook app.

Then, this middle aged man sits next to me on the bench and, starts a conversation. I respond to him by using the iPad with the "Speak It!" app.

In the course of our conversation, I mentioned him that I used to drive. He then looked at me seated on my wheelchair and said, "If you don't mind my asking, were you involved in a car accident?" I said, "No I wasn't, I have a disease." With obvious relief and without skipping a beat, he said, "I am so glad you weren't in an car accident."




I wanted to tell him (but I didn't), that actually a car accident would have been a blessing.
People have no idea what this disease does. They are too busy worried about their mundane lives that they usually overlook what ALS is or what it does.



NH

 

[vickim]

Hi NH

He was probably too embarrassed to ask. And didn't know what else to say. I get that all the time. When I run into friends I haven't seen in a while or strangers too they say "OMG What did you do to yourself?" Some I don't want to tell them and I say I am getting old, others I tell them I have a muscle disease. I don't want to explain and most times they really don't want to know and can't get away fast enough.

I say their loss. Phooey on them. That's why we are all here. We all know whats happening to each other and can relate and offer support the best way we can. I agree the world needs to understand these diseases and the toll they take and work harder to find a cure. But like the ostrich they stick they heads in the sand and pray its never them or ones they love.

 

[Cricket]

I hear ya...

I remember entering a building somewhere with one of my little ones one my knees. A bunch of kids were sitting at the entrance. One called out: "what happened to you?". They were giggling, some were pushing each other around. I wasn't sure what I was supposed to do so I wheeled over. I explained what ALS was. We ended up having a really good honest conversation. Then, I made sure to tell them to always remember their good manners and to open the door

 

[Nighthawk]

@Vickim:

You possibly might be right and he might have been embarrassed to ask me what kind of disease could've left me voiceless and crippled in a wheelchair. It could've been less embarrassing for him to think and say that a car accident could've caused all this upon myself and not just a disease. Although, if he would've asked me, I would've explained him what ALS is, and probably he would have become aware of what this disease is and what it does to people.

Who knows?


@Cricket:

Glad you turned a negative and indifferent attitude into a positive one and now, those kids know what ALS is and also learnt some manners. :smile:


NH

 

[hjlindley]

I have a sticker on my power chair That says ALS fighter. It is definitely a conversation starter

 

[olly]

I too have had the "what you done" "what happened " comments.
Also get "you look well" comments also.....i say it effects my muscles not the way i look....even people diagnosed with terminal cancer can look well.
They should see me on a bad day with no make up on lol.
........all new meaning to "ignorance is bliss"

 

[Ms. Pie]

I usually just say I have ALS. It answers most of their questions.

 

[Nighthawk]

I usually just say I have ALS. It answers most of their questions.

I know what you mean, dear Ms. Pie.
Although, when I have mentioned the A.L.S. acronyms to someone who has no clue of what ALS stands for or what it is, they think I might be referring to some kind of Government agency dedicated to build roads or something else. :shock:


NH

 

[olly]

I think people are not aware of the meaning of als but understand more the term of motor neuron desease.......here in the uk its called mnd not als.

 

[His Joy]

I understand your frustration! I grew up with a mother who was totally paralyzed from the shoulders down from polio. This was over 60 years ago. At that time, anyone in a wheel chair was seen as almost contagious! Other parents would pull their children away, perhaps out of fear of bothering her, and sometimes fear they might "catch" something. Fortunately, she had a beautiful smile that would usually ease the situation. Most never asked what had happened.

She was the first one I thought of when I was diagnosed in March of this year with ALS. My facial expressions, speech and walking are the most obvious indications something has happened. I jokingly say it's like being drunk! I have had a number of incidents similar to those mentioned and find it hard to be as pleasant as mother was. Not knowing what to say a lot of the time. Most people can be very pleasant. Others react out of ignorance and embarrassment. "Until you've walked in their shoes........" They have no awareness and react in numerous ways!

May we find the right words when confronted.

 

[chrisroski]

Yes it does amaze me that people do not know what ALS is, however, I honestly never heardmodmit until my boyfriends brother in law was diagnosed with it. I find people tend to know it better as Lou Gehrig's disease. I think this is why this disease is not small we say taken seriously. Everytime I see something on tv for a walk for breast cancer, or diabetes, or,prostrate cancer, I want to scream. Not they aren't serious diseases, but they have chemo @ radiation and people are going i to remission everyday or even cancer free for years. ALS has nothing but Rilutek, which doesn't do all that much. I did walk last Nov at the ball park here in Philly and not one news station was there, mad me very angry. I'm trying to see if we can change that this year. This disease needs more media attention so people can see and hear what it is like to live with this disease.

 

[pearshoot]

thats why every pals must be vocal. theres too many hiding their disease. please start speaking out. if you show signs and asked tell them what it is, no cure, life expectancy so they understand the urgency of finding a cure and know about fund raising

 

[mbmurray]

Yesterday afternoon, I was sitting on my wheelchair next to a bench, in one of the aisles of the nearby shopping mall while my sister was in a store buying a gift for our mother for Mother's Day.
I had my iPad on my lap reading an e-Book on the iBook app.

You at Arundel Mills Mall? Reason I ask is I see you live in AA Co and I used to live in Crofton before moving to NOVA

 

[Nighthawk]

You at Arundel Mills Mall? Reason I ask is I see you live in AA Co and I used to live in Crofton before moving to NOVA

Hey,

Not exactly. Although, I know where Arundel Mills Mall is, I've been there before.

I was at Westfield Shopping Mall in Annapolis when I met that person on an aisle and the conversation I was referring to on my original post took place.
You familiar with this shopping mall?


NH

 

[mbmurray]

yep, been there many times. It is right near the Pat Sajak wing of the Anne Arundel Medical center, always got a kick out of that LOL