Overcoming humiliation

[johnnyliverpool1]

sunewun, you looks like a little darlin to me.....which reminds me i got an appointment with me optician this afternoon..............kidding..only kidding , honest.....johnny

 

[Bad Balance]

People tend to diminish or trivialize disabilities, I think. I have had several ask me how the leg is healing. If I know them well I usually tell them that I have ALS. Yes I know what you mean about the humiliation...hard when you were active.

It passes. I have learned to make it about what I still can do.

- Jerry

 

[old dog]

We all need to take a lesson from Johnny - maintain a sense of humor no matter how bleak things may seem.

It seems like yesterday that I was a young senior citizen with very few limitations. I was limping at times and my speech was slurred at times; I thought these things were just part of the aging process and was not really concerned. In three years, I've lost the ability to walk without a walker and, most troublesome of all, cannot speak. Some family members can understand me through a combination of lip reading and hand signals. I am lucky to still be able to eat normally.

It's tough to go from being a moderately attractive and active person to an old crone in such a short time.

The thing I find most aggravating is excessive sympathy. The nurse at my doctor's office pats me on the shoulder and refers to me as "little princess." Even though she's a very nice and capable person, I want to bite her! I want to scream that I'm the same person I always was--just have a little trouble doing things that are normal for others. People who don't know me also assume I'm mentally impaired because I can't speak.

In the past, I was a caretaker for both my father and my significant other. Both were wheelchair users. Neither gave a hoot what people thought. When I get depressed, I think of how they persevered. When someone gave him a look of pity, my S.O. would mutter, "To Hell with them if they can't take a joke."

 

[KissJ]

I'm a special education teacher. My husband has ALS and unable to walk anymore. He uses a powerchair, 24/7. People can be so rude, inconsiderate, and thoughtless. I stare back! Ha, or give a quick "teacher look"...like "don't do that!" I can't help myself! I have seen this my entire life and my thoughts on your post.... Those people just aren't worth even considering more than a few seconds! Let it go, move on, and know people with goodness, kindness, and thoughtfulness are also out there and they are the ones that matter!

 

[golf4kev]

DBow,
Reading your post was like reading my bio.
Everything you said was exactly how it was for me.
I am a little younger but our experiences are the same.
I have learned that you really find out who your friends are when something like this happens.
Keep on fighting and don't forget to enjoy things.

 

[jl73]

I saw somebody with a sign on a walker that said "made you look" but def not meant to be put on a walker, so it was funny.
It really took the edge off.
Michael j Fox said he always tells jokes and after that people really quickly treat him like everyone else again.
I think people get uncomfortable around disabled because they think a) you are miserable and in pain and they start to feel bad themselves or b) (mostly young people who've never had a health prob) are scared to even consider it could happen to them and so do the invisible pretend thing.

 

[momap53]

Jl73, you've made a good point. I often think that fear plays a big part in their reaction.

 

[Arone]

In an ethic point of view, i guess people neeed to be more caring and supportive for ill and disabled persons. As they are people who really need special attentions and care to be provided. Rather than ignoring them.

 

[Moonwolfy]

I felt extremely self conscious when I first became disabled a bit over two years ago. I was 33 at the time and loss my ability to walk normal within a week and been using a walker since. I also lost my speech entirely within two months of my onset. I only got a diagnosis of PLS a couple months ago and been trying meds which helped me speak for a bit but I think the meds stopped working at the current dose and I can't stand another increase as I'm sleeping my life away from side effects. I use a iPad with a speech app to communicate for past two years. Since I'm so young strangers look at me with pity in their eyes often which I hate. I remain as independent as possible and refuse help to my car to load my groceries despite checkers often repeating several times that it looks like I need help which is annoying since they see me weekly and know I always tell them I like to do it myself and will tell them if I need help one day. I feel like I have little control over my life and being as independent as possible keeps me going both mentally and physically. Often people think i was born this way and think im developmentally disabled. Whats worse is when i use my ipad to explain to them and they disregard and think im deaf and shout at me..which i really dont get people who think shouting at someone they think is deaf would even help. My personal favorite though was when a nurse at the ER one time told the doctor i was a mute and could not communicate right in front of me. I was beyond angry. I started yelling using my iPad that if I was capable of speaking I would and that the term mute is a old and offensive term in my opinion. The doctor laughed and said well it looks like you can communicate just fine and commended me on figuring out how to adapt technology for my communication needs. I'm still able to drive which is great. My wife is legally blind..she can see a bit but cant drive..and so I drive her around and we get a kick out of people scratching their heads when she wheels me up in my wheelchair on bad days to the drivers side. When we meet people for the first time we always joke that together we make one complete person..I'm her eyes and she's my voice..ha ha.

 

[vickim]

You have a great attitude. It sounds like you two make a great team. Keep up with the humorous and postive way you are living your life. Hugs.

 

[Nighthawk]

I do not feel humiliated for being struck by ALS.
Diseases are as old as the human race itself.

It does make feel bad however, is that everything on this world, is tailored for the so called "healthy normal people".

Houses, for example are built with so called "normal people" in mind. If you become disabled, a lot of modifications have to be done to the house to make it adequate for people with disabilities.

We used to live in one story house when I hadn't yet been struck by ALS.
But then, we decided to move into a three stories home (if we include the basement) and...short after that, I developed ALS. Now, I have to struggle to go up the stairs (16 steps, built for "normal people") from the living room to my bedroom which is upstairs. If I want to make it easy for me, without risks of falling down the stairs, then I would have to move downstairs to the first floor...but, there is no bathroom with a shower there for me to take a bath. So, to take a bath, I would have to go upstairs to the bathroom with a shower which, defeats the purpose of safety that is why I would be moving downstairs. Because that home wasn't built with PALS or handicapped person in mind but...for so called "normal people".

A "normal" person wouldn't have any problems bathing regardless which floor he/she lives in. But, for me, a PALS, it's just a nightmare.

Another thing is when you are about to board a plane at the airport, and you are walking slowly with your rolling walker, "normal" people behind you in the line, grown increasingly impatient because they cannot understand why someone like you just "grow wings" and fly so they don't have to wait in the line, behind you, several minutes while you struggle to take one step at a time.

So, I'm not really humiliated but, it's frustrating that so called "normal" people are so selfish and do not want to share the world with other people who became handicapped not because they chose it but because it happened and nothing could be done to prevent it.


NH

 

[notme]

Nighthawk, you're soooo right! Perhaps I'm a bit different. I started using a cane when I was in my 30's because my spine was so bad, I was at a huge risk of falls. People always looked, but rarely commented.

Then, in my 40s it progressed to a walker because my hands were getting hurt by the cane handle.

After the blood clots and stroke ,it was a walker permanently. When bad lungs were joined by weakened peripheral breathing muscles--O2 tanks were added to the mix.

Of course, I have a handicapped car tags. 90% of the time, I see young people hop out of the cars in the handicapped spots and I just want to scream. My daughter yells at me when I say something snide, but I can't help it.

Other places have one handicapped spot--as FAR AWAY from the door as possible. THose really tick me off. NOt everyone that uses those tags has wheelchair...some like me use a walker and need 'close' not a 'ramp'. Build the darn ramp near the doors so I don't exhaust myself walking to the store.

I flat out ignore strange looks. But I also gladly take the help taking the groceries to the car. I need that energy that lifting bags would take just to be mobile (and can't lift them anyway anymore) so I guess I don't understand why it would upset someone to be offered help with bags.

Houses are definitely made for 'normal'. My halls are too narrow for a scooter. My bathroom is tiny and getting in a tub (I miss long soaks) is impossible. I have to sit on the edge to get in to take a shower. Daily showers dont' happen--it takes more energy than I have to spare. Washing my hair is a nightmare--it's very long. (I refuse to have my daughter help me bathe)

But Nighthawk, can you put in a sliding seat for the tub so you can shower downstairs? Use a shower chair and a transfer board if you need to. Those stairs are going to get dangerous and if you can move downstairs please consider doing so!

I'm lucky in that I do have mobile home and can move into the living room if it becomes necessary. We don't have a life--neither my daughter or I socialize. None of neighbors even knows us.

The hazard at my place is the curve to get to the hall and to the bathroom. It's narrow and no room for anything in the bathroom--my arms are too weak for rails to be of much use anymore.

I do get embarrassed by the fact that some days I just can't manage it--and have to use the bedside commode in my room.

And I'm in much better shape than half the people here--I honestly don't know how you guys cope. I really don't. You all have a much more positive mental outlook than I do.

 

[Nighthawk]

But Nighthawk, can you put in a sliding seat for the tub so you can shower downstairs? Use a shower chair and a transfer board if you need to. Those stairs are going to get dangerous and if you can move downstairs please consider doing so!

"Notme",

Thanks very, very much for this suggestion, I will definitely take it into account.
My family don't want to see me going upstairs from the first floor anymore so I have to plan on moving downstairs the sooner the better. At least they won't have to take the bed downstairs since our local Chapter of ALS Assoc. brought up a positions bed (like those at hospitals) from their "Loaner Closet" two months ago and placed it downstairs for an eventual move of mine. The stairs is a 16 steps stair which takes me around 5-7 min. to climb very slowly to avoid falls. Furthermore, it only has handrails on just ONE SIDE, which makes it very dangerous for me to go up those stairs.

Going down those stairs is not as difficult or dangerous as going up, because by going down,
I use the force of gravity that pulls me down but, going up is another story as I have to overcome gravity which is more difficult with muscle weakness and atrophy.

I usually grab the handrail with my left hand since the handrail is on the left (the weak and atrophied hand is the left one) and, try to lean on the opposite wall with my right hand (still relatively "strong", but..."strong", when I compare it to the left hand, of course) and, the rolling walker is placed beforehand by my family right at the top of the stairs so when I'm done climbing stairs, I grab it and go either to my bedroom or the bathroom if I need to.

It's a shame they don't build bathrooms with showers on the first floor in these houses. The bathroom on first floor only has a toilet and a sink, not shower because is "half bathroom".

Again, thanks for your suggestion, and take care.

 

[momap53]

Better to use assistive devices than have to have help getting up from a fall or far worse to have to make a call to 911.

Eating out for me is changing yet again. In the past, my girls have had to cut every thing for me, now they have to assist with feeding me. T Rex arms just can't close the distance between plate and mouth.

 

[Nighthawk]

I know what you mean. Thanks for your kind suggestions.

That's why I will start moving downstairs to the first floor as soon as I can.

I have even had panic attacks when going up the stairs (cold and sweaty feet and sweaty hands as well as shaking) and that happens when I'm reaching the last step because I just...imagine myself falling down these stairs, and just that, triggers feelings of intense fear that paralyze me and I cannot keep climbing for a few seconds until I overcome that fear.

Nobody in my family has the strength to lift me off the floor if I fall (6'1" tall guy who weights 182 lbs.). That's why we requested our ALS Assoc. to get us a LIFT from their "Loaner Closet", to make it easy for them to lift me if I fall. It will be placed and left on the first floor in the wake of my move downstairs.


NH