Really Bad Experiences Yesterday

[tiredofdoctors]

Boy, did everything hit home yesterday. My husband dropped me off at the Mall during his lunch hour so that I could shop for my dad's birthday present. Since I can no longer drive, we keep thinking of ways (without using public transportation -- it's not great here) for me to keep some semblance of independence. At any rate, I was at a register checking out, and having some trouble getting my wallet out of my bag on the back of my chair. A man had come up after me to return some items, and the whole time I was checking out, he was making "heavy sigh" noises, shifting weight dramatically back and forth (WAY in my personal space -- even in a wheelchair). This went on until a sales clerk came up and said "Sir, may I help you?" He looked at me and said "Yes, I have been waiting FOREVER." It was humiliating. Customers were looking at me like after he looked down. I didn't know what to do, so I turned around to him and said "Sir, I'm sorry that it takes me longer to get things because I'm in this chair. Believe me, it wasn't my choice, and if I could choose, I would be walking again." I then finished my transaction, and wheeled out of the store, sobbing. Evidently, he was pretty bad, because a man followed me out of the store, telling me what jerk that man was and to not listen to him. Still, it was the first overt experience I've had like that. I've only been in the chair since May, and people have jumped in front of me in line and things like that, but no one has ever BLAMED me because I was in my chair.

To make matters worse, I then went to my parents for dinner & birthday last night. My mom & dad are the best with regard to my new gluten-free diet and are SOOOO supportive. My mom asked "can you have meat tenderizer on your steak?" I told her I didn't think so, did she just keep one out for me? She said, "No! I didn't put it on any of them -- your steak would be grilled at the same time as the others and could get gluten on it!" There's a salad that my dad loves, but you put the dressing on it before serving it. She just left all the ingredients out in separate bowls and put the dressing out for those who wanted it. I brought my gluten-free dressing and life was good. She also had me bring my gluten-free brownie mix to her house and make brownies for me (my dad's sister was making his cake), and was really happy that I could have them. (She would have made them herself, but she has lung CA with mets, and she just had her last chemo treatment -- on top of it, after her first treatment, she got really dizzy and fell 2x, breaking her ankle and shin in 4 places -- had to have lots of surgery on it).

At any rate, my mom and I had been really quiet about the changes in the food and me having different dressing, brownies, etc. Then my aunt, who loves to complain, starts saying, "Why can't we have tenderizer on our steak? (evidently she was listening more than we thought?) Why isn't the salad put together? Why does SHE have to have HER brownies rather than cake -- my grandmother and otheraunt chimed in, and it was like my mother was sitting under a light being interrogated. Then, they started saying "I thought Celiac Disease was in your stomach" Finally, my mom just said "She doesn't have Celiac Disease -- but the gluten in food is destroying her brain and her retinas and we're doing what we can to stop it." Then they said -- she just can't have wheat -- that's it? My dad let them have it.

It felt really good to have such support from my parents, and to have them take up for me so vehemently. It just felt like I was the family freak. To have that happen on top of the shopping experience has me feeling like crawling under a rock.

Please tell me that it gets easier to take. I feel pretty horrible right now, and I am so sad.

[floridanative]

Oh my heart goes out to you. It is just awful that there are some jerks like the one your encoutered at the store in this world. But I really think that most people are good and decent. It's just that the few horrid ones are so hard to take. Feel sorry for him - he's the loser who has no sense of compassion. He is probably a miserable person and very unhappy and his way of sharing that is to try and make others feel his pain by being so nasty.

About your family, I so understand how wonderful it is that your immediate family is so supportive. However I would say that Celiac seems to be foreign to most people and what people don't know scares them. That is why they poo-poo the idea that gluten can be that bad for anyone. They don't want to feel like they could ever have it themselves. This explains your other family members' ridiculous comments. They are ignorant and that's that. You may have to educate them and if they still don't get it, you might consider spending less time with them.

I myself don't know if I have celiac disease or not. My colonoscopy came out fine yesterday and next is my biopsy. But my family (thank goodness in another state) thinks it's hard to feed me and my hubby since we don't eat red meat. Can you imagine what they'll do if I say I can't have gluten?!! That'll be fun....NOT!

Take care and keep your chin up! And ignore the rude idiots of this world. They are not worth your time indeed.

Tiffany M.

[nettiebeads]

There's an old saying that you can chose your friends but you can't chose your family. I'm glad your immediate family is supporting you and your husband is very understanding. You have to focus on the positive. Yes, you have and will continue to experience jerks in public (they're everywhere!) Be proud of the fact that you spoke up for yourself! You have a right to be out shopping and pay taxes on retail items that help support that jerk's lifestyle (police, infrastructure, etc). And focus on the nice person who tried to make you feel better. And the longer you are gluten-free, the less emotional you'll be. I don't mean that you shouldn't be emotional, but that they won't get the better of you.

I'm sorry your aunt put such a damper on the gathering. My mother always has a way of saying things at gatherings that just make me want to disappear! And I'm 46 and I still feel that way! She's 84 this month and I know she won't change.

Maybe you can ask your aunt why she doesn't want you to be healthy? And a little inconvenience on her part where your health is concerned shouldn't be too much of a burden. And I'm sorry she couldn't mix her salad for herself. Must suck to be so helpless.

You are getting used to this diet so as time goes by things will get easier for you and your family. BTW, my husband uses a couple of marinades on the steaks so they come out real tender. But he's an ex-chef and only uses strip steaks which are naturally very tender.

Come here to vent anytime, and I hope today is a much better day for you!!

[debbiewil]

Ignore that idiot in the store. Just pity his poor family.

And there's some really great, easy meat marinades. Red wine or vinegar or lemon juice, whichever you prefer, olive oil, and seasonings - just salt and pepper will work, or add onion, garlic, whatever you want that's gluten free. Minimal time and effort - great steaks.

Debbie

[frenchiemama]

Wow, that guy at the store was a JERK. I hope he remembers how he behaved when a time comes that he needs a little patience and understanding from others.

As for you relatives, they were acting like jerks too. Just count your blessings that your parents stuck up for you. The others can either just learn to live with it or eat on their own, no one ever died from having to put together their own salad.

[happygirl]

Ditto to all that the others have said. I certainly hope that your weekend is brighter for you.

[tiredofdoctors]

Thank you guys so much. You made me feel so much better. I think that, even at 43, having my aunts complain and question so skeptically put me right back to about age 8 or 9. I know that I'm lucky that my parents are so dedicated to ensuring that I'm gluten-free. They have researched my condition, celiac, gluten-free dieting (they even made sure the pans hadn't had gluten-containing foods in them). I think it made my relatives think they were zealots. They're not, really, they're just really concerned about my health.

As for the guy, I think you're right on the money. Can you imagine being his family? I didn't think about that. When I became a PT, I bought a framed "successories" print about the essence of compassion . . . it said something to the effect of (my daughter took it to college with her so I don't have it handy!) be kind to the downtrodden, tolerant of the weak and sick, because at one time in your life you will have been all of these. Unbelievably -- I hope that, when the time comes that things aren't going well for him, no one treats him the way he treated me. I don't know WHY, but I just don't think anyone should be treated badly -- especially when they're down. I would like to think he thought about it last night when he went home. Maybe he did. Or maybe, when he is down, someone will help him and then he will think of it.

On a much funnier note -- the gluten-free brownies I made were great! It was a mix, and the first ingredient listed was Garfava flour -- along with a lot of other "bean" flours! My 10 year old nephew LOVED them! (My sister has taught her kids well --they're just as supportive) -- I laughed with my dad, though -- as many as he ate, he was probably up all night with gas!!!!! My dad thought it was hysterically funny!

Thanks again for the support . . . . Lynne

[judy05]

Boy, did everything hit home yesterday.  My husband dropped me off at the Mall during his lunch hour so that I could shop for my dad's birthday present.  Since I can no longer drive, we keep thinking of ways (without using public transportation -- it's not great here) for me to keep some semblance of independence.  At any rate, I was at a register checking out, and having some trouble getting my wallet out of my bag on the back of my chair.  A man had come up after me to return some items, and the whole time I was checking out, he was making "heavy sigh" noises, shifting weight dramatically back and forth (WAY in my personal space -- even in a wheelchair).  This went on until a sales clerk came up and said "Sir, may I help you?"  He looked at me and said "Yes, I have been waiting FOREVER."  It was humiliating.  Customers were looking at me like after he looked down.  I didn't know what to do, so I turned around to him and said  "Sir, I'm sorry that it takes me longer to get things because I'm in this chair.  Believe me, it wasn't my choice, and if I could choose, I would be walking again."  I then finished my transaction, and wheeled out of the store, sobbing.  Evidently, he was pretty bad, because a man followed me out of the store, telling me what jerk that man was and to not listen to him.  Still, it was the first overt experience I've had like that.  I've only been in the chair since May, and people have jumped in front of me in line and things like that, but no one has ever BLAMED me because I was in my chair.

To make matters worse, I then went to my parents for dinner & birthday last night.  My mom & dad are the best with regard to my new gluten-free diet and are SOOOO supportive.  My mom asked "can you have meat tenderizer on your steak?"  I told her I didn't think so, did she just keep one out for me?  She said, "No!  I didn't put it on any of them -- your steak would be grilled at the same time as the others and could get gluten on it!"  There's a salad that my dad loves, but you put the dressing on it before serving it.  She just left all the ingredients out in separate bowls and put the dressing out for those who wanted it.  I brought my gluten-free dressing and life was good.  She also had me bring my gluten-free brownie mix to her house and make brownies for me (my dad's sister was making his cake), and was really happy that I could have them.  (She would have made them herself, but she has lung CA with mets, and she just had her last chemo treatment -- on top of it, after her first treatment, she got really dizzy and fell 2x, breaking her ankle and shin in 4 places -- had to have lots of surgery on it). 

At any rate, my mom and I had been really quiet about the changes in the food and me having different dressing, brownies, etc.  Then my aunt, who loves to complain, starts saying, "Why can't we have tenderizer on our steak?  (evidently she was listening more than we thought?)  Why isn't the salad put together?  Why does SHE have to have HER brownies rather than cake -- my grandmother and otheraunt chimed in, and it was like my mother was sitting under a light being interrogated.  Then, they started saying "I thought Celiac Disease was in your stomach"  Finally, my mom just said "She doesn't have Celiac Disease -- but the gluten in food is destroying her brain and her retinas and we're doing what we can to stop it."  Then they said -- she just can't have wheat -- that's it?  My dad let them have it. 

It felt really good to have such support from my parents, and to have them take up for me so vehemently.  It just felt like I was the family freak.  To have that happen on top of the shopping experience has me feeling like crawling under a rock.

Please tell me that it gets easier to take.  I feel pretty horrible right now, and I am so sad.

<{POST_SNAPBACK}>

This has nothing to do with celiac disease but I was behind a "jerk" in the supermarket. He was only buying one item -ice cream. The clerk apparently rang the wrong price on the cash register and he went ballistic! He picked up a shopping cart and broke all of the windows. All the customers ran for cover and someone called 911. It took about 10 minutes for the police to come, I have never been so scared. I hid myself under the apples. Don't let this idiot upset you, there will always be "jerks " out there. My niece has cerebral palsy and she has a service dog who helps her. He can get her wallet out for her, helps her put on her coat, brings her shoes, he is such a love but all business when he is wearing his halter. Perhaps this could help you, it has made such a difference in Heather's life.God Bless!

[Claire]

If it helps, I am all but crying with you! Crying helps but none of us can stay crying. We are defeated if we do. You have enough problem - don't let some sad excuse for a human rob you of even a few minutes of your day. Here is a thought - save what you have written here and write your feelings as you go along this road. At some point put these thoughts together, edit it well and try to market it - or offer to present \ to students in the health care professions. This would be rewarding for you and help so many people who would benefit from your experience - not just this one but the entire experience of disability.

I will always remember that as an adult student (I went to college after my last child went to school) I learned my most valuable lessons about the experience of mental illness from a

former mental patient who shared her pain, frustrations and fears - what no text book could have ever taught. I had so much more to offer the mental patients that I worked with because of her. It isn't just the public that needs this insight - it is sorely needed by all those who provide care to the physically or mentally ill ort he disabled. Don't let your loss, your hurt be wasted.

Did you ever see 'Destiny's Child' - a made for TV movie with Marlo Thomas? A marvelous story based on the life of the mental patient I just mentioned. I personally witnessed a great deal of the real woman's incredible story. Today she is a key figure in the Massachusetts Dept. of Public Health.

Smile now. It can only make you feel better. - and look better too! Claire

[tiredofdoctors]

It's funny that you mentioned that -- I have kept in touch with one of my former professors that became my friend (I went to college at 31) -- she wants me to lecture on the exact things that you were talking about. She said that there isn't a book out there that can impact students the way that listening to what someone who is in their profession has experienced. I think you guys are right. She has had me keep a journal to document all this, and to show the frustration that patients deal with daily -- and to make future healthcare professionals realize that patients come to them not only for physical treatment, but for affirmation, for answers and for someone to be a sounding board. I am an educated healthcare provider who is being treated as though I'm an idiot. My friend says that students need to hear how physicians will talk to their patients. I have actually had to say to a doctor -- "Well, I could be wrong, but I took both my pathology and physiology courses at the UL med school with the med students. What Dr. ( ) instructed us was that ( ). Then the doctor had to somehow back out of his/her statement, realizing that BS'ing wasn't going to work in that case. (Especially when they had learned under the professor I listed).

After the terrible experience yesterday, though, I was reminded that there are Angels everywhere. I needed a tissue, so I wheeled into the Aveda store. I had my head down and asked one of the sales clerks if I could have a tissue. She said absolutely, and handed me a few. About 30 seconds later, the kindest young guy who worked there came up to me -- asked me if I was Okay, what could he do . . . I told him I was fine -- he said "Well, you look beautiful, but you don't look like you're fine right now -- how about a hand massage?" He was amazing. He got me a cup of peppermint tea (made sure it was gluten-free!) and just started talking. It was obvious that he was out of the closet -- his make-up was subtle but stunning --and he was talking about the ignorance and ferocity that some people possess. He couldn't have been over 23 or 24, but he was wise beyond his years. Listening to him, I could hear he had probably had the emotional equivalent of my experience over and over and over . . . I stopped by the card store just to get a thank you card. I wrote that people like him just make the world a better place, and told him that he probably couldn't know how much I appreciated how much he helped me. Somehow, there is always something really good that is revealed through something really bad.

Idiots are everywhere -- but so are some really fantastic people. You guys are all examples of that, as well. Thank you.