Skip to main content

I just got back from the hospital visiting my 93yr old brother-in-law. He is not doing so well and the prognosis is not bright.

But that is not the subject...he has lived a good long life and he is ready if this is his time.

Most of the family came and went, wrung their hands and milled around. No one did anything.

But we are special. We know what it is like in that hospital bed, how it feels to be weak as a kitten, a victim of our bodies or our pain...how even the littlest things help us feel better, brighten up and feel less yucky.

I made soup. A good, thick vegetable soup that was tasty and soft mushy meatballs that are easy to chew and swallow. 

He ate with pleasure, drank some water (I refilled the sippy cup because he cannot lift the big water bottle...no wonder he wasn't drinking!)...He even sat up and asked for an expresso.

Then I massaged his hands and feet...he is getting scars on his heels from being in bed for so long and all of the I.V.s are making his hands stiff and sore.

He relaxed and breathed easier...got some color back in his legs...wiggled his toes too and smiled. 

I would not know what to do or what needs to be done (bring my own napkins, cutlery and plates...) if I had not been in the hospital so often...I would not know what to do or even how to do it.

But there were wonderful people who came to see me, care for me, massage my feet so that I wouldn't get bedsores and calluses, powder and perfume me when I was feeling my crappiest...they gave me the greatest gifts that anyone has ever given me...hope and peace and comfort.

So I pay it forward. Because I know, I've been there. That is what makes all of us special...we know, we've been there and we can help others.

Sharon

 

Original Post

Replies sorted oldest to newest

Thanks Maddie,

As we get older (and more medical time and experience) we become more attuned to other people's pain.

I teach. I am a teacher. I see my kids and know when something is off, when they ask for too many bathroom breaks (not just to check their phones) and when they just look wrong. 

I talk about it in class, I ask them how they are feeling discretely, ask if they need help, if there is something that I can do...I know what it feels like to feel isolated and lost in a disease that has no face and that you dare not mention to your classmates...So I listen and watch.

I also talk very openly about desperation, depression and suicide. 

I wear a Red Nose in class that starts the conversation going. 

While teaching in Belgium last month, I saw some students had set up a table that sold fresh waffles and these red noses...I asked about it and they explained that is was a program in schools to get kids more aware and talking about the dangers of depression and suicide among students...so I bought one.

I put it on in each class, at the break, and get a conversation started. We share feelings and stories...some kids cry (then come to talk with me later) and some hide their faces behind their hair...others couldn't care less...they surf and text and ignore the subject...but if I can touch just one kid, let them feel less alone, feel like they can talk to someone who will not judge them then I have done my job well...I am privileged, I teach 750 kids per year...and I have a responsibility.

I talk to them about U.C and Crohns. I talk about IBS and hidden disease. I let them know that they are not alone and that there are places that they can go, that they need to get checked...before we had a school cafeteria, the kids would eat in the classroom and I would check-out their lunches...What they ate and how they ate...mostly incredibly well but some, no so well...and I would teach them about nutrition and balanced diets. 

We are sensitive to these things and if and when we can, we need to teach or help.

Just my opinion. 

Sharon

Thank you so much. When I was in high school, many years ago, I frequently would go to the school nurse complaining of abdominal cramps and headaches. Her response was to tell my mother I was seeking attention and might have a case of hypochondria. I did not know this of coarse until I was about twenty and had been diagnosed with ulcerative colitis and had already went through my first near death experience when I nearly bled to death because of the profuse bleeding in my colon. One day my mother and I ran into this nurse while we were out. I was surprised by my quiet gentle mother’s response toward her. With a raised and angry voice my mother said to her, do you remember my daughter, the student that came to you with abdominal cramps all the time, the hypochondriac? The women looked at me and said, oh yes, how have you been, in a sheepish tone. Before I could say anything my mother speaks up and says, she hasn’t been doing well at all as a matter of fact! She went on to tell her how her daughter spends weeks at a time in the hospital and has almost died from ulcerative colitis. Then she added, maybe if her disease had been diagnosed sooner she wouldn’t be sick. Then my mother took my arm and walked away without waiting for a response from her. That’s when my mother told me what that nurse had told her back when I was in school. My mother told me it had made her really angry at the time because she knew I didn’t feel well but didn’t know why. She had taken me to see a doctor but back then doctors were so quick to pass abdominal pain in females as hysterical pain. One doctor actually told my mother I was just high strung and just needed to calm down. Sad to say even today to many doctors do not take women’s complaints seriously if the problem is below the waist. I wish there had been a teacher like you in my school.

Robin

Thanks Robin, 

That is what makes us special, we are more attuned to the suffering of others, we have lived through it and survived, we have also gone through hell and back so we know intimately how lost kids can be when no one is listening...

I was the same kid as you, constantly running to the bathroom, doubled over in cramps, crawling to the bathroom in the middle of the night, moaning in pain with no one to listen or help. 

They said that is was psychosomatic, that I was an attention-seeker, that I was making it up (bleeding from the rectum?), they hospitalized me 6xs with such severe bleeding that I needed to be transfused. 

Yet, no one took it seriously. 

I made feeble attempts to tell them but I was mocked by everyone. Ignored, told to buck-up and take it. 

I was a lock-in for years, starving myself to be able to go to school or I would not survive classes (I still do it today or I will not survive the 1.5hr subway trip to school each way).

So, I put myself out there and tell the kids that nothing is more painful than a painful secret. That the enemy of depression is compassion and shared fears.

I tell them to talk...to anyone, a friend, a doctor, a family member but to not suffer in silence.

I told the story of the red nose to a friend, at dinner, and she and her husband broke down...Their daughter's best friend's boyfriend had just committed suicide the previous week...hung himself. 

Her daughter was at a loss to understand, the parents too. He was 21. NO one saw a thing, no one expected it. He was so joyful and friendly. So full of life...until he wasn't. 

So please talk to your kids, sit them down, make them bring home their friends for dinner (not as the main course!) and talk.

Sharon

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×