I wrote this post about a week before we left for our vacation. We are having a great time! (Sorry, no time to write about it now)
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Daria at Living with Cancer just posted about her first Public Wheelchair Ride. This post came "right on time" for me.
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We are all busy planning our upcoming family trip to Disney.
My friend, ABH, suggested that I use a wheelchair or electric buggy to get around the parks.
At first, I balked at the idea.
Eventually, I had to acknowlege that I cannot stand or walk for extended periods of time.
I get tired.
It would be a shame to leave the park(s) early, because I just could not stand or walk anymore.
So, I bit the bullet and borrowed a collapsible wheel chair from Yad Sarah. You can rent wheelchairs at the parks, but they cost $12 a day, plus you lose time every day, renting and returning the wheelchair. This way, I save time and money, and I can also use the wheelchair in the airports.
The question is: will I really use it?
I know I should.
But the thought is really hard for me -- not so much the thought of using it, but the thought of being looked at....
I don't want people feeling sorry for me or my family.
I also don't want people judging me.
Besides the no-hair-thing (which one might not notice, since I cover my hair for religious reasons), I look like a perfectly healthy, young (ok, middle aged) woman.
I don't want people looking at me and wondering "Why is she in a wheelchair, when she can walk just fine?"
I know that if I do not use it, I will just conk out after the first day, maybe even during the first day. I cannot be on my feet for long periods, either standing or walking.
But it is hard to make that step -- to enter the world of the "differently abled."
I like having the option to "pass" for normal.
Once I sit in that wheelchair, I am publicly acknowing my disability. I won't be able to ignore it.
Will my pride get in the way of my sechel (judgement)?
Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.
With love and optimism,
RivkA
Sunday, December 13, 2009
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15 comments:
Rivka, I know what you are going through concerning this decision - it was very hard for my father z"l(who had MS) to admit he had to use a wheelchair ... and it was very hard for us, his family, to see him like that and to cope with people staring at him/us.
Sending you all my love
Anima
You should use it. I know there is a lot of emotional baggage to using a wheelchair, but the onus is on the people who see you and judge you, not on you. You need it. It's like the person who by all outward appearances looks healthy but has a permit to park in the handicapped spaces. Why? Because of a heart condition that prevents the person from walking long distances. You and your family will enjoy the trip so much more if you are able to conserve your energy. The Disney parks are gigantic. Even for someone who is 100% healthy, it's exhausting to do all of that walking and standing.
I was in a parking garage elevator going up to the level my car was parked on. A couple in the elevator commented that someone took the elevator up one flight, instead of taking the stairs - probably because it was cold, they reasoned (I live in Michigan, and it's been pretty terrible here with temps in the teens and wind chills in the single digits). And I was more critical of the couple who commented, because they have no idea why the person chose to take the elevator for one flight up and it wasn't necessary for them to comment. And plenty of people think the way I do. The ones who don't, well, the only thing that comes to mind is a yiddish expression my grandparents and parents used to say that is not really appropriate for mixed company. Havei dan et col adam b'chaf z'chut.
People might stare, but the people that matter, your family, they will understand. And your memories of the great time you had on the trip will be so much stronger than the memories of being in a wheelchair for part of it.
use the wheelchair because you can and need to while remembering you don't need it ALL the time, Thank GD.
you are allowed to think of YOU for a change.
RivkA,
I have several recurring dreams. In one of them I am in a wheelchair. After a while, I do not want to 'decieve' people, so I get up. However, I DO know that at the beginning of the dream I am in a wheelchair because I NEED IT.
Just thought I'd share that.
Also, I feel that you are doing a great service to others - as someone who is standing 'on the other side' (so to speak) it helps me, personally, not judge people. I think that our [personal]world is so much richer and mature when we include as many friends in different situations - physical, emotional and spiritual - as possible.
Enjoy your vacation! You keep inspiring me!!
Love :-)
Chava
RivkA,
My daughter went to Disney for a bat mitzvah (don't ask) also when she was just finished with her chemo and radiation. She did not want to use the wheelchair, but also knew that if she didn't, she wouldn't be able to last the day. She went with the wheelchair and had a great time. So did her group. He friends took turns pushing her--and, as an added bonus, they did not wait in any lines at all because of Liat. When life gives you lemons you make lemonade! Hope you are having a wonderful time.
I read your blog but never commented before. I understand your dilemma and wanted to share my point of view from the other side. My mother in law has MS and refuses to use a wheelchair for exactly the same reasons. I have heard the reasons that you posted from her mouth over the years over and over. Those are very valid points and since B"H I can walk and I'm not in her shoes, I cannot refute them.
The other side is what she is missing becuase she refuses to acknowledge her dissability (and her disease. She cannot go on trips with the family, because she can barely walk. She refuses wheelchair accesible accomodations in hotels and in her own house. Therefore her personal hygiene suffers. Everyone in the family also suffers because we see struggling and not enjoying activities she would enjoy JUST TO KEEP A FANTASY; that she is healthy and can do everything that she used to do. The reality that that she suffers from a disease (that is very obvious) and she spends so much time and energy hiding it that she cannot enjoy herself and her family.
I know what I say is very strong, I just feel that I have experience with what you describe from the other side. Talk to your husband and kids about the wheelchair issue and your emototions around it, they know your condition and will understand. Don't mind the rest of the world. And, most important, enjoy the trip instead of worrying about starngers you, most likely, never see again.
Good luck
I can't comment on your discomfort, since I'm not the one in the wheelchair. But I can offer a little perspective about SEEING someone in a wheelchair in an amusement park. What goes through MY mind is either:
a) Nothing. I'm too busy doing what I have to do. The fact that a person in a wheelchair just rolled by makes no more of an impression than the group of teenagers who just walked by, or the cute kid who just walked by, or the maintanance person who just walked by. In other words: hardly any impression at all. People are mostly focused on themselves, not on you.
b) Envy that the group with that person can skip all the lines.
It has NEVER occurred to me to judge why the person is in a wheelchair. I once went to Disneyland and my otherwise-healthy friend was in a wheelchair because she'd sprained her ankle the day before at a wedding. Things happen.
What a tough decision...our thoughts are with you.
Was just thinking of you this morning. I hope you are having a great holiday. I forgot to check in a wish you and your family a Blessed Channukah. So here I am, late as usual:-)
Good luck and have fun at Disney....and Happy Channukah!
I just found your blog and I am touched and inspired....I am a mom with epilepsy only, so I do not face anywhere near the hurdles that you do. But IMHO, we Americans have electric wheelchairs at the Walmart and the Target.....I only cringe when I see someone who is clearly abusing them--like a stupid teenager riding in it for kicks.
I just have to say, okay, you're from New York and you live in Israel.....maybe you haven't noticed how, um, large the amrican population has gotten in the past couple of decades? (I'm not sure, when I say I am new to your blog, I mean I am REALLY new)....In any case, I would think that the people at Disney who need to worry about being stared at are the overweight americans who wear too-skimpy clothes. I should say, in full disclosure, with a small uncomfortable guffaw, that as a teenager, I was perhaps guilty of such offenses.....I have seen the few pictures that survive and thankfully I have since learned to be more modest. But really, it's Disney--it's probably gonna be more of a watch-fest for you than the other way around, no?
I guess what I am trying to get at is that you are on vacation.....my wish for you is that you are able to relax, enjoy yourself, and not worry about how you look....because you deserve it!!!
Have Fun!
Catherine
RivkA,
So I assume by now, you've had the experience of people ignoring you/assuming that you are mentally disabled because you are in a chair. That was the part that struck me the most, that not only would people talk to the people I was with ("Can she transfer to the ride?"), but my own friends and family would do things like park me in front of a wall and walk away. It really sensitized me to what people who have to use a wheelchair on a daily basis have to go through.
As far as people staring or judging you, I HOPE that someone makes a comment. When people give me dirty looks or comment about my using handicapped parking, I usually say, "I'm sorry, but do I know you? Are you familiar with my health history?" and then walk away. But you have SUCH a better answer: "I have terminal cancer." BOY would that shut people up! PROMISE me that you'll tell anyone who questions or doubts you -- it'll benefit people like me. :)
Have a great trip and call me when you get back.
RivkA I apologize. I realize after reading Karen's post that I should have said "I cringe inwardly when I see a stupid teenager riding in an electric wheelchair at Target for kicks." I would never comment or say anything because you do never know. But I really dislike when I see really egregious misuse, where you see a teenager or young person actually getting up and playing around loudly, running around the store and goofing around--not the people actually using them who are younger-looking....but I would never ever say anything, because a) I am just not that person and b) I have an 'invisible' condition and so can many many other people.
Karen--I cannot believe that anyone---ANYone---would have the nerve to comment on your own personal business. I should be shocked, but I guess I am not surprised, just more saddened than anything. But I like your retort....and I think I might try it and/or pass it along.
Best wishes,
Catherine
I've been reading these comments for a few days, and they contain a lot of wisdom.
What I would like to say is this: Do whatever you need to do, whatever will allow you to enjoy yourself the most. If anyone else has a problem with it, too bad for them. You concentrate on having a wonderful time.
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My mother has MS and went through the same issues as you're having now. My sister lives in Miami and my Mum didn't want people to think she was just lazy going to the shops or, like you, to Disney!
Simple solution - a handful of stickers made the wheelchair 'personalized'. People then automatically realized that she had been in the wheelchair long enough to make it her own - and hadn't just gotten it at the front desk on a whim.
Get a couple of Shalom stickers, or Nir Barkat for Mayor adhesives - if you really want to make it look old get some that say 'Ben-Gurion for Jerusalem'!><!
ENJOY YOUR HOLIDAY!!
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