Thursday, August 16, 2012

Day 9 Blogging Olympics: Write a Marathon Epic Post

Well, as you as you all know, I’m working my way through the Blogging Olympics after the fact.  The topic for day 9 is to write an epic marathon post. To me this means either writing something really long (which I do but only on topics that I consider important) or that is really memorable or inspirational.

In the middle of this flare I’ve been going through, I ended up attending a wedding for my husbands niece. I keep going back and forth on whether I should share this experience that occurred at the wedding, because it is a little negative. However, it is a real experience that I think other people with Fibromyalgia and chronic “invisible” illnesses go through or have gone through.

Too be clear, the negativity is not about the wedding itself; it was lovely. My niece-in-law was beautiful and happy. The bride and groom are clearly in love, a bit young in my opinion, but they seem to have a good plan for their future together, so I can only be happy for them.

However, I had some experiences there that I haven’t had to deal with for quite some time and it hurt me, physically and mentally.  For me this was an epic, albeit negative experience, that I hope will help others and maybe will help make people think a little bit about how they treat other people.

As a little background, the wedding was held at Oregon Institute of Technology (great campus, great school, I graduated from there, so I love it) near the fountain.  I hadn’t been to the campus for many years. But when we arrived and started walking up to the College Union, I started panicking and getting downright scared.  

What was the reason for this sudden anxiety you may wonder? I realized that the wedding was setup down at the fountain area, which is a beautiful and perfect spot for a wedding. It is also down a long flight of stairs.

The Stairs to the Fountain  at OIT

I dressed up for the wedding, which I’m not able to do nearly as often as I’d like, so I wanted to get pictures of my daughters and I which my husband happily obliged with, but I was panicking and I snapped at him and then it was time. We had to go down the stairs.  

I knew I should have just said we have to go another way. I’ll walk around the other buildings on a flatter surface, but I cannot do the stairs. I should have said or done something. I should have spoken up right then, but I didn’t.


I’m stubborn and there were a lot of people around and I was being urged to take the stairs, so I did.  Halfway down the stairs tears were streaming down my face; the pain was so horrific.  I was already not doing well before I even got there, but I hit 10 on the scale of pain and beyond. I was still walking, but every step onto the next stair was so excruciating.  

I was trying so hard to hold back tears as my husband and daughters waited for me and I could see them starting to freak out. They could see something was really wrong (hard to miss with tears streaming down my face).  It took every ounce of strength that I had to not sit down halfway down the stairs and give up.  I considered just sitting down and sliding down the stairs kid style, but it was a wedding and I couldn’t do it.  I wasn’t sure I could make it down the stairs, but I did. I put on a brave face and wiped the tears. 

I sat down on the seats and really couldn’t move much at all, couldn’t focus, couldn’t really comprehend what people around me were saying, but I tried to be cordial to the family members and other people there. 
My Daughters and I Before the Wedding

Then another one of our relatives arrived who has Fibromyalgia started going down the stairs I saw her stop halfway down and I knew how bad it was. I found the strength to walk back over to the bottom of the stairs and wait for her. When she successfully completed the ordeal as well, I let her know I had just gone through it too and how glad I was to see her.  I think it helped both of us to know that we weren’t alone with the experience.

I also let her know, that my husband agreed to pick me up at the other end of the parking lot so I wouldn’t have to endure trying to go up the stairs to get to the reception, which was in the College Union. At the end of the wedding we were all invited to the reception in the College Union and told that there were elevators, which I already knew and was grateful for.

Our cousin joined me on this slightly longer, but far less painful walk at the end of the wedding around the campus so that we could avoid the stairs.  Still in pain, we were both really glad that we had a ride to the building instead of facing those nightmare stairs.

When we got to the College Union, we walked in. Feeling pretty exhausted and drained, we went to the elevator. Only to find that the ordeal was just getting started.  The elevator was not available due to “carpet cleaning.”  My cousin and I both looked at each other and started trying to gain the courage to try the stairs that we needed to go up there to get to the reception. 

I was unable to gain the courage to climb up the stairs; I sat at a table near the bottom of the stairs with my cousin and used every bit of my strength to keep from crying, trying to be positive.  

While sitting there someone else arrived in a wheelchair who was unable get up the stairs as well.  At this point, my husband went and explained the situation to the bride’s father (my husbands brother).  We sat down there for nearly twenty minutes just feeling left out and frustrated, but trying so hard to come up with a solution and not turn a beautiful wedding into a pity party.

When finally, a glimmer of relief came to us. My husband returned and let us know that his brother got them to let us use the elevator!  So we line up at the elevator, two of us with Fibromyalgia, another person in a wheelchair, an elderly person, my husband and his brother.

Then the person who was allowing us to use the elevator tells us that only the people who need it can use it. They looked right at me. Like I shouldn’t need it. Like there was something wrong with me and I was just lazy.  After all of the ordeal so far, I just felt ready to leave and if it hadn’t been for my husband and cousin saying that only the people who needed it were riding it and then supporting me being one of them did they stop talking like that.

But it was still on their faces and it hurt. Seriously, did they really think that I sat at the bottom of the stairs at a wedding reception for twenty minutes because I thought it would be fun?  Apparently, some words had been exchanged prior to this also with my husband about who could use it. Originally (if I understand correctly), they were only going to let the person in the wheelchair use the elevator, but they ended up letting us all use it.

But the treatment at that point was a final blow to what little emotional, mental, physical strength that I thought I had left.  Somehow, I managed to dig deep within myself and managed to stay for most of the big parts of the reception (first dances, cake cutting, eating, some pictures), but I finally reached the point about an hour or so in to the reception where I just couldn’t handle anything more, even the fun stuff. 

So we headed out, everyone was really understanding and just asked that we stay for a few pictures, which we did. I cannot even imagine what I looked like in those pictures at that point, completely frazzled, exhausted mentally and physically, excruciating pain, and seriously not sure how much longer I could even physically stand for the pictures, much less try to smile for them.

And that’s my “epic” post for the Blogging Olympics. I realize it may not be the most positive. I honestly tried to be positive and happy and brave through it all, but it hurt me in so many ways.  I think about that day and the first thing I think of is mind numbing pain and horrifying embarrassment from the looks on those faces of the young men working at Oregon Institute of Technology as I entered the elevator and they clearly felt I shouldn’t be allowed to use it. 


Then I am able to think about the stunning dress my niece wore, the flip flops the bridesmaids wore (seriously I should have worn them too, instead of heels), the lovely centerpieces, the pure love the two of them clearly have for one another, the toasts, watching the first dances, and the cutting of the cake (they did smash cake into each others’ faces, but they are young and it was fun-My husband knew ahead of time that I was not ok with that for our wedding, so he didn’t even try to smash cake in my face!). Oh yes, did I mention that I went through this wearing heels?  Actually, I took them off and went barefoot for quite awhile, but still.  Not my best choice.

I wish that the experience as whole for me could have been truly about the bride and the wedding, but instead, I ended up having a difficult time that is still coloring my thoughts and feelings for the wedding.  I want to be able to think only of the pleasant things in the wedding and not the stairs and the elevator and the words those men said and the looks on their faces.

It is my hope that by writing this and getting it off my chest will help me move past it.  It will probably always hurt, but I know in time it will fade and I will be able to remember the beautiful parts of the wedding or at least see them in pictures and be able to say I was there too!

Have any of you gone through an experience like this?  It would really help right now to hear that others have been through similar situations.

25 comments:

  1. HUGS!!!! I'm so sorry you had to go through this. I know I have had to many times. And, then I beat myself up. Today, I just have not had the strength to do anything, and I feel so guilty about it. But, I just could not today. My daughter got married in July at a college and the walks and stairs were awful Thankfully, a security guard in a golf cart was able to help me out a couple of times. But it was so hard. Thank you for writing this. It helps a little knowing we are not alone.

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  2. Roy A. Ackerman, PhD, EAAugust 16, 2012 at 1:33 PM

    Obviously, while OIT may provide valuable education, it's staff is populated with the handicapped- the mental kind, which is absolutely the worst variety.

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  3. Thank you for sharing your experience too. I have a tendency to beat myself up a bit too, but I try to switch modes as fast as I can back to trying to stay positive.


    We really need to listen to our bodies more and our minds less sometimes. If our bodies are trying to tell us to slow down, then we need to slow down. We all need to take days or sometimes weeks of taking it easy, so stop feeling guilty! I know it's much easier said than done.


    It really does help knowing that we are in this together.

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  4. Thank you! I started laughing when I saw this. You're so right, especially about those men...

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  5. I could really relate to your post and feel your frustration. I wrote a post on a similar subject a while back trying to bring attention to this issue. I was reminded this morning also when I was on a train for 30 minutes without a seat. I couldn't just say to someone, it hurts for me to stand for a long time in one place, who would believe me, I look healthy! http://www.gracefullynatural.com/2012/06/when-physical-pain-takes-over/

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  6. PS. Next time slide down the rail :)

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  7. Thanks for sharing the link on your post about being on the train without a seat. Reading it made me feel so much less alone in this. I'm hoping that sharing the experience will help others too. I wish there was a simple answer for helping people be aware that how a person looks does not indicate how they feel or the level of help they need.

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  8. That would have been a sight for everyone to see! :-)

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  9. Hi Emily,


    So sorry to hear about this unfortunate experience.


    My heart goes out to you, as I am sure this is a very tough thing to handle. I had a friend in high school with Fibromyalgia and so I understand the suffering.


    Best wishes to you!


    ~Christine

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  10. Thanks for your kindness. It is always wonderful to have supportive people around when dealing with Fibro. Your high school friend is lucky to have someone like you who cares enough to understand in their life!

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  11. Hi Emily,
    That would have been so tough. Someone I was very close to was ill for four years but because you couldn't see the issue people claimed it wasn't real.
    I'm so thrilled you are continuing with the Blogging Olympics! You go girl! I can't wait to read more.
    Take care,
    Caylie

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  12. Thanks Caylie. I'm working my way through the Blogging Olympics and am loving it! Just wish I'd finished on time so I could've connected with a few more people there. But the people I did meet have been wonderful.


    The person you were close to probably went through things like this too. I'm hoping that one day people will treat everyone with "invisible" illnesses better.

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  13. @ Roy making fun of the mentally handicap is ride and insensitive. And that is what those men were just rude and insensitive nothing more.

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  14. Hi Emily,
    I am sorry for your ordeal. It is very frustrating dealing with people that do not understand chronic illness. I have had fibromyalgia for over 20 years. I that time I have learned that if I don't feel up to something I honor my body and don't go. I know that a family wedding is something special but you didn't enjoy it anyway.

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  15. sounds like you had an ordeal - well done for writing about it, I'm sure it dies help get it off your chest, and anyone reading who also suffers will certainly relate. Remember the good bits (seems like you are already doing that!) Cheers, Gordon

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  16. Emily, there are so many ways folks misunderstand each other because of assumptions based on some surface cues (you're wearing heels and upright - why can't you take the stairs?) instead of getting to the source of the situation. Improved communication, compassion and understanding can cure so much in this world; your post, written as a result of severe pain and distress, is sure to help. Thanks so much for your willingness to share this.

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  17. Hi, Emily! I don't have fibromyalgia, but I know a lot of people who do have it, and I know how it is to be judged for something people think you have (when you don't). When strangers look at me, I know that they are automatically assuming that I have cerebral palsy. But I wasn't born this way. I had cancer, and then I came down with a viral infection that damaged my brain stem. No doctor has ever diagnosed me with cerebral palsy. EVER. Blogging is one way I vent my frustration of this. There was this one incident last summer around this time when I was going to get the mail with my walker. I got it into my bag and was turning around when I saw this UPS truck start to slow down as it approached. I froze in place, not knowing what was happening. And then the driver, a woman opened her mouth and started talking to me... "I know someone with cerebral palsy too. You're looking good!" I was utterly speechless. It was a blessing, I think, because otherwise I would have been screaming at her. I know it is not the same as anything you experience, but here is the link if you want to read that post
    http://cloakeynotes.wordpress.com/2011/08/08/dear-ups-lady/. God bless you, new friend!

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  18. Thanks Danielle. It actually is really similar, because you were being judged by how you look. I think most people really don't intend to upset or hurt others, but when people judge even to try to be positive, if the assumptions are wrong, then it still is frustrating.

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  19. I hope the post helps. I would love to live in a world where people simply accepted others without making assumptions and passing judgement. I know I didn't "look" like I needed the elevator, but the message I'd hope to get across is as old as time: "Don't judge a book by it's cover!"

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  20. Thanks, it really did help getting it out of my mind. Especially with so many wonderful and supportive people commenting and helping me put it in perspective!

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  21. I appreciate your understanding. I do yoga when I am able to and am careful to not overdue things most of the time. Some events are truly one in a lifetime and simply can't be missed. Thanks for the link to the facebook page.

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  22. Emily, I have a feeling they got to you more because you were in such pain and feeling terrible. It never fails to amaze me how insensitive humans can be to each other. Have you considered sharing your story with the University and asking them to have a training for their employees so this doesn't happen to someone else? And how stupid can they be to schedule carpet cleaning on the day of a wedding?

    And for goodness sakes, give up the heals and wear flats. I don't have any issues other than being overweight, but what a relief it is not to wear high heels.

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  23. Julia I think you are probably right, it probably bothered me so much more than usual because I wasn't doing well to start with.. I KNOW you are right about the heels. I just gave in to an impulse with the heels that I don't believe I'll do again! I think sharing this with the school is an excellent idea and one that would hopefully prevent it from happening again. Thank you!

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  24. That sucks, Emily. Sorry to hear it. I was in a wheelchair for several years and have fought with the pain of my disability for over 10. Honestly, when I'm having a bad day (which is thankfully rare now), I sometimes just throw on my walking boot. A physical sign, whether I actually need it or not) is great to help the questioning looks at bay (although it can invite some unwanted chatter about, "oh, what happened you poor thing?") if I'm going somewhere very public.

    I find that a bit of self-confidence and just saying, "I have a disability" helps tremendously, especially if someone tries to question my use of an elevator or something. Sometimes people want to ask about it, but usually I laugh and say something snarky like, "sure, I'll tell you all about my problems as soon as you tell me about the moles you've been worrying about" or something like that. People don't know what to say to that, haha. :-)

    As much as it is tiresome, I found planning ahead of time is the best thing you can do. Avoiding stairs, finding elevators, and figuring out how to get places is so bothersome, and it always takes much longer than the direct path. But it's worth it in saved pain, don't you think?

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  25. Thank you so much for taking the time to write such an insightful and helpful comment! I agree planning ahead is the smart thing to do and YES I will not wear heels again.


    I also think if I had been more on the ball I could've handled the elevator situation better too; simply sharing enough information to let them know how much I appreciate them letting me use it since I have Fibromyalgia and simply wasn't going to be able to take the stairs would have gone a long way to eliminating the situation.
    I can honestly say that I did learn from this experience.


    Post pics of the decorated shoes when you do them! I'd love to find a way to dress up my flats.

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