A confession of sorts About This Page:

[Mary Ellen]

Hi everyone. I've been coming to this part of the board everyday to read and have wanted to post for a long time, but have been to nervous. Well here goes.

A few years ago I started having major health problems with no diagnosis forthcoming. Things got bad for me in 2000 when my face started swelling and I had a mouth full of "toothaches", earaches, felt weak, dizzy, strange sensations in my legs arms and tongue, always tired and was having serious memory loss and confusion. On Christmas Eve the doctor called and said I had a mild form of Arnold Chiari. Since then my life has changed drastically. Appearance wise and life style wise. I used to work as a legal secretary and was one of the best real estate closers in my area. Needless to say that went out the door because of the memory loss and confusion. I've had to quit my job, for that reason and I am in pain everyday. I know this is a Disney forum and believe it or not I do have a Disney question, but I thought maybe you guys could also give me some advice. I'm having a hard time adjusting to this "new" life of mine and I feel like a failure. I feel like I've let my husband and daughter down big time. I no longer contribute to the household monetarily, there are some days I don't do anything because I am too tired. The fluid in my head and face cause paid daily, and now my hands and legs are also swollen. Arnold Chiari is a neurological disorder you are born with. My brain stem goes into my spinal cord and therefore the spinal fluid backs up into my head. It never affected me until I was rearended by a car in 1996 and that started this whole ordeal.

Can anyone give me any ideas how to accept a disability? I do not to be little anyone, but for me I used to me a smart energetic hard working person and now a feel useless. I hate the thought of people who do not know me looking and thinking "boy she sure let herself go", believe it or not relatives are the worse.

I'm sorry for this ramble, I just don't know anyone who understands. My husband and daughter say they do, but...

Oh, the Disney question - last year when we went I stayed at the Resort because when we got the wheelchair I would get the "looks" and I couldn't deal with it. If a person doesn't know me, they can't tell by looking at me that something is wrong. We leave next month for the World and was wondering how to deal with "looks" and still have a great vacation. My daughter leaves for college in August and I want one more good vacation with her before she starts her "life".

Again, I know I probably should't have said all this here, but it couldn't hurt, right? [img]images/icons/blush.gif[/img]

[Fairy Nuff]

First of all, big hug to you Mary Ellen,, have more to type,, but wanted to make sure you got this hug before you were gone,,,

Fairy nuff

[Fairy Nuff]

The only people who are important are your husband and daughter. They don't feel you have let them down, they must feel so sad that they can't take your pain away. IF you have relatives who are so insensitive to actually entertain the thought that you have 'let yourself go' on account of your being ill,, then they are not worth your having a thought about them. The same goes for any one rude enough to give you the 'look' if you require the use of a wheelchair or any other type of assistance. People can be very cruel, and I wish I could spare you any of the hurt that I know you must feel when you feel people are not understanding your condition. But remember, they don't know what is going on in your life. They should not judge without first thinking about all the health conditions which can sap the energy and good health that they enjoy, but sadly people just don't always use generousity in their thoughts.

I have never heard of this condition, but it sounds like it has caused you alot of emotional as well as physical pain. You probably have already done this, but I would certainly think about joining a support group, or even start one if you cant' find one. I bet your Doctor could assist in this. You have been very active up til this hit, and are missing the feeling of contributing in some way,, but you forgot that you are the reason your daughter has excelled in school as she has. It's been your support, and encouragement that has made her the confident and strong young lady she is.

Lastly,, you are fully entitled to have moments where you feel overwhelmed by your health condition. You do not have to put on the brave face 24/7. Allow yourself to adjust without being hard on yourself if you get sad at times. It's bound to happen. Always remember that there are always people who care about you and love you.

I hope you and the family have a fantastic trip, and maybe I will get to run into you at some point [img]images/icons/smile.gif[/img]

Fairy Nuff

[Laughaholic]

Mary,

Big Passporter Guide hug!!
~*~**~*~*~**~*~

Never think you are useless..when you aren't. I know you're going through a rough time right now, when everything seems like it crashed.

Well..here's my advice. I can't take the stares people give my brother. So I imagine it's much worse when the stares are at you.

There are several ways to defeat those people. You can blankly stare right back. You can say something like,'Did you run out of film?'. Or you can say.'I have ..... Don't know what it is? Look it up!'. You really shouldn't be really rude, after all..some people are just like that, you can't change a person in one day.

I hope I've helped. Thanks for posting in our forum!

Kristin

[A. Monster]

I just wanted to send you a hug. It sounds like you've got so much to deal with that you deserve this vacation and you deserve to enjoy it. I know it's easier said than done, but don't worry if people stare. That's their problem. It's not their business why you're in a wheelchair; people should be mature enough to realize that not every physical problem is visible. I'm just always so surprised about how hurtful people can be, not just those who don't know us, but especially those closest to us.

Try to remember that your value isn't based on how much money you can earn, what you look like, nor how much you can do for people but who you are inside and how you treat those you love and everyone you meet.

{{{{hugs}}}}

[iloverags2]

Mary Ellen, big {{{HUGS}}} to you. As everyone here has already stated, what others will think can't be changed. Best to just concern yourself with only you and those important to you.

Please continue to visit us here at PassPorter. We're a friendly group, and the folks around here are incredibly supportive (and have some wonderful suggestions to boot)! Glad you decided to join us! [img]graemlins/wavin.gif[/img]

[Carrousel Lover]

Hi Mary Ellen,

Welcome and I am so happy that you also posted. Regarding WDW, we have many people in our family who have required wheelchairs for "hidden" ailments on our WDW trips. I know it must be incredibly difficult dealing with your own internal and external issues and then worrying about what others feel, think or the dreaded "look" they give but that is theirissue. My FIL was cardiac handicapped (they didn't know how he survived day to day with the damage) and he refused wheelchairs or electric carts because of what people would think and missed out on many things (including WDW)because there was no way he could function without one. My mother had a major MI with a stroke, acquired aphasia and had mobility issues.Like your daughter, my sister was entering college when this happened. To look at her sitting you couldn't really tell but she was also in a wheelchair for most of our WDW trip. This trip is one of our favorite memories and we discuss it often. My cousin has Friedreich's Disease - another rare one to suddenly present symptoms as an adult. I am always shocked at the comments he gets. He also has had a couple of great WDW trips this year. What I am trying to say is You, and your family are the important ones to consider. It is a special memory you are making and do not let anyone take it away from you. (I also sent you a PM)

For others - interesting site on ACM

[ 06-20-2003, 03:11 PM: Message edited by: Carrousel Lover ]

[HiddenMickey]

I wish I could offer you something other than a cyber-hug. {{{{hug}}}}

Have you thought about seeking some counseling? From what you write, I think you might also be showing some signs of depression (which can be controlled with medication if necessary).

Best wishes to you as you work through these hard times. -HiddenMickey

[LilMarcieMouse]

Mary Ellen A big Hello to you and More {{{{{HUGS}}}}. Would it help you to write down what you can do to contribute? Like Have a should for your DD when she needs it. You give all the love you have to both of them. I am a large Preson and when I get down I turn to my Passporter friends. Posting here has help me quit a bit. with my selfesteame. I do a daily Disny History post which relaxes me. I wish I knew what to say about the rude peole who steer. I have learned not to. unless I like what the preson is whereing. [img]images/icons/grin.gif[/img] Maybe if someone is stearing you could say Oh I got this at...What ever store.

Have a good time at WDW and forget about the world. [img]images/icons/grin.gif[/img]

[Tara O'Hara]

Mary Ellen, I have no idea what you are going through and I can't imagine how devastated you must be. You have tremendous courage. It sounds like you also have a loving and supportive family. I have nothing more to add to the wonderful posts above except to reiterate that this is a supportive, caring group of people if you ever need to vent. Have a magical vacation and try your best to just focus on having a fabulous time!! [img]images/icons/smile.gif[/img]

Sincerely, Tara

[Mary Ellen]

Thank you both.

Fairy Nuff, I read your post last night before going to bed and one thing you said sent bells ringing in my head, well actually a couple.

You have been very active up til this hit, and are missing the feeling of contributing in some way,,

<font size="2" face="Comic Sans MS, Arial">I realized as I thought about this that you were right on the mark. My life was taking care of my family and work and now that I see my family taking care of me I have felt like I let them down. More importantly though, you were right, my husband and daughter do not like to see me in paid, but they don't hold it against me, I hold it against myself.

Your post has given me a lot to think about (all good. Thank you so much and have a wonderful trip yourself. If you near the Beach Club one night give a ring.

[Teddysmom]

My favorite way to deal with the stares my son gets while we are in the World is to just stare directly back at the person. No mean face or anything just a direct stare. It generally does the trick.

[MagicLover]

Big {{{HUGS}}} to you Mary Ellen. Like others have said, the only ones that really matter are your family. Try your best to enjoy your trip, and maybe use some of the suggestions for the stares.

Prayers and pixie dust for a greater sense of peace in dealing with your current situation.

Sue

[Fairy Nuff]

Hugs Mary Ellen. I have been there, and done that,, I don't want you to punish yourself for something you can't controle. Things will get better, I promise. You will wake up one morning, and realize that you are the same person you were before you became ill.


hugs
Fairy Nuff

[Mypasttimes]

Mary Ellen, email me I worked with a girl that has actually had surgery for Chiari. I would be glad to try and hook you up with someone who can honestly say, been there, done that. Seh too was a vital contributing citizen..who's life was changed immensely, lucky you to have a husband an daughter. Disability in any form is difficult to accept, especially when it happens to adults who have lead "normal lives". For get the stares, the action taken to "affect" those people is not worth the inner turmoil you put yourself thru afer havind done it....Smile at them or nod and say "hello" are you ahving a good day. Ignorance is rampant..or how about a bumper sticker for your wheel chair or a hat that says" In spite of all my problems I'm having a magical time- how about you?----Take hold of each positive moment you have....you have enough to deal with physical pain- dont allow yourself to give complete strangers power over your mental health!!!Chin Up..Smile..they are invisible and have problems they dont even realize!!!So get out of the resort!!!get to a park... even if you feel like doing nothing...what better place to sit than on a bench surrounding World Showcase, or a rocking chair.I have personally Sat on all of them benches and rockers.....celebrate the fact that you are able to sit in that spot and soak in so much of WDW...dont think of it as things passing you by..To sit and study is a gift we give ourselves, in a place so full of stuff to do..places to go...and there is no better place in the "world" to take in the "details"....Okay...you ahve an assignment...go have fun...and come back and tell us all about it!! you deserve it... Sorry so long..but our life as we know it changed in 98...you just have to find a new way to "live". Sending you a virtual hug, and pixie dust for more highs than lows....
Till next I post
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