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.
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 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.
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.
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.
ReplyDeleteObviously, while OIT may provide valuable education, it's staff is populated with the handicapped- the mental kind, which is absolutely the worst variety.
ReplyDeleteThank 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.
ReplyDeleteWe 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.
Thank you! I started laughing when I saw this. You're so right, especially about those men...
ReplyDeleteI 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/
ReplyDeletePS. Next time slide down the rail :)
ReplyDeleteThanks 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.
ReplyDeleteThat would have been a sight for everyone to see! :-)
ReplyDeleteHi Emily,
ReplyDeleteSo 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
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!
ReplyDeleteHi Emily,
ReplyDeleteThat 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
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.
ReplyDeleteThe 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.
@ Roy making fun of the mentally handicap is ride and insensitive. And that is what those men were just rude and insensitive nothing more.
ReplyDeleteHi Emily,
ReplyDeleteI 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.
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
ReplyDeleteEmily, 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.
ReplyDeleteHi, 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
ReplyDeletehttp://cloakeynotes.wordpress.com/2011/08/08/dear-ups-lady/. God bless you, new friend!
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.
ReplyDeleteI 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!"
ReplyDeleteThanks, 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!
ReplyDeleteI 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.
ReplyDeleteEmily, 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?
ReplyDeleteAnd 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.
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!
ReplyDeleteThat 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.
ReplyDeleteI 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?
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.
ReplyDeleteI 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.