Notes from a circus freak.

Suzybelle

I've come to accept that I'm a freak.  People stare, and I can see the curiosity flit across their faces.  "Why is she wearing that on her arm?  Does she think that's cute?  Doesn't she know it's weird?"  It used to hurt; now I accept.  I'm resigned to the fact that I'm different.  Cancer and lymphedema have marked me in a big way.  Instead of a scarlet A, I have a flat, concave chest and a fat, swelled up arm and side.  I really wouldn't mind if I could swap and have a fat, swelled up chest, and a flat arm.  But I'm dealing with what I've been dealt.

And even though it still stings my soul a bit, I'm getting okay with it.  I'm alive.  I feel good, and I'm happy with myself and the choices (most of which sucked) that I've had to make on this bizarre, jacked-up cancer ride. 

At 42 years old, I'm finally learning that beauty is not skin deep.  Good hair is great, but it's not that big of a deal.  I would love to look normal and conventionally pretty, but I don't.  I look like me.  And when I look in the mirror, I can smile at myself, freaky arm, freaky concave chest and all that they represent.

Rock on, freaky girl.  And rock on, my freaky sisters.  I think you guys are pretty darn awesome.

Hugs and kisses,

Suzanne

Binney4

Suzanne, your "Rock on, freaky girl" line reminded me of the rhythm of Simon and Garfunkel from a long time ago. "Sail on, Silver Girl, sail on by," from their Bridge over Troubled Waters.

Rock on Freaky Girl,
Rock on by
Your time has come to shine
All your dreams are on their way

See how they shine
If you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind.

Thanks for the kindness of easing our minds. We need to be reminded often that circus freaks are people too, with all the dreams that involves. Sometimes -- for a minute or an hour or a whole morning -- we even forget about our swelling for awhile, and life is blissfully "normal" for that bit of time. May it happen often for all of us!

Gentle hugs,
Biney

Suzybelle

Binney, love your new song!!! 

I was feeling very zen-like about the whole LE thing.  It doesn't happen often.  But I do so love those moments when I forget and think I'm normal...

Leah_S

Suzybelle, you are normal.

Let me repeat that.

You. are. normal.

We notice the stuff that goes on with us far more than other people. I've noticed that most people seem to think I'm dealing with carpal tunnel syndrome when they see the gauntlet. And you know what? I bet most people don't notice when women who've had BMX don't wear forms. Sure we have scars and other (to us) weird stuff happening but lots of people have all kiindsof stuff going on and we don't notice.

Which, of course, does not excuse the rude remarks strangers sometimes make, but people who are that rude would find something else to be rude about if we didn't have noticeable issues.

All the best.

Leah

Suzybelle

Leah, thanks for the sweet note.  I am actually not normal, (even before LE - I have always been a nut!  )but what I'm discovering is there really is no normal.

But yeah, people do notice my sleeves, although it's much better in the wintertime, and people (especially men) do notice that I don't have breasts.  It's no big deal.   I could wear foobies, but the bras hurt my LE side, so I don't.  Most women never notice a thing.  And my husband thinks I am wonderful regardless, so I do what I want.

I really don't mind being abnormal.  Because pretty much everybody is, but we can't see their abnormality.  I would rather deal with LE than say, kleptomania or narcolepsy...it's all relative.

But thank you for the positive reinforcement!  I am going home and telling my husband that I am in fact, normal.  He will deny this.  And he will probably point out to my latest pair of red rose emblazoned cowboy boots as proof.  I look like Porter Wagoner when I wear them - they are AWESOME. 

BoobsinaBox

Binney, love what you did with one of my favorite songs!

Suzybelle,

I'm not normal either, and I appreciate all that makes you not normal!  I have been one of the lucky LE sisters, very rarely having to wear my sleeves and gloves...until a week ago.   Thank goodness I had just ordered my Isotoner fingertip-less gloves.  My expensive Jobst gloves never fit well, and one now has a hole in it.  So they came just in time for me to wear them to my first social function last Friday night.  Since our move, we've begun dancing twice a week with new friends, and taking lessons once a week.  Anyhow, we sit at a table with two other couples, one of whom knew about my cancer and LE.  I had worn long sleeves which mostly covered things, but as we sat at the table, my sleeves fell back to reveal the gloves.  The other woman asked me about the gloves.  (I had practiced saying, "It's medical, not a fashion statement," which I hoped would be enough to stop any conversation, but so much for practice.)  I used my line, then went on to say I have swelling as a result of breast cancer.  She responded, "I had breast cancer, too.  Mastectomy." To which I responded, Bilateral mastectomy."  And that was the end of it.  Not embarrassing.  And now I know I have a bc sister just down the street from me!  And two more people know I had bc.  

So, yes, people do notice sleeves and flatness.  I've been wearing foobs again for a few months, and I am a little more relaxed about my appearance, but I know I'd be used to flat again in a heartbeat.  You are so right.  Everyone has something that is not "usual" about him or her.  It's just that some of us have more noticeable differences.  What is most different and noticeable about you, however, is that magnificent sense of humor that just won't quit!  Thanks so much for this post and for all your participation in this board.  You make it so much more bearable, sometimes even enjoyable!

Dawn 

Anonymous

Suzybelle, you made me smile.  Not by your original post but ongoing posts.  I don't have lymphedema but the topic caught my eye.  You may feel your arm and chest qualifies you to be a freak but that is all.  You, yourself, are not.  Reading here I can see you are witty and fun-loving and you obviously have a DH that adores you.

The closest I can come to relating to your sentiments is my DS who has cerebral palsy from birth.  Everything about him "appears" normal to others until he gets up and walks.  He is 27 and for his entire life has had to deal with the stares and even discrimiation from hiring managers.  Unfortunately society judges by the outside but being a victim of BC I think many of us here have learned differently.

HUGS.

Suzybelle

Dawn, thank you - you are such a sweetpea.  I actually got stopped by some construction workers in the facility where I work:  They had been watching me go in and out of the building for weeks, and each day I wear a different patterened compression sleeve, right?  One of them finally asks me one day (After weeks of intense staring at my sleeves), "Is that a tattoo?" 

Yeah, Einstein, I get it re-inked every night.  That's why it's a different pattern every day.  I just said, "No, it's a compression sleeve."

See, I could be stupid AND have LE. 

Patoo, thanks - you are so right - I think the BC/LE does make us more aware of those who are struggling; with life, with LE, with BC, with emotional stuff, disabilities.  I guess your son (and you) could write a book. 

I hate cancer and I hate LE, but I am grateful that I have learned to be gentler with others and myself because of them.

And I now have a smoking-hot collection of cowboy boots. 

BoobsinaBox

Suzybelle, that is hilarious!!!  If I have to wear these things all the time, I'll be shopping for something more fun-looking than this awful beige!

 Dawn

Anonymous

Suzy, your contemplations are wonderful and full of optimism yet address the reality of what has happened to our bodies and what it's like to adjust to the changes. You're right, it could be worse - we could be stupid and have LE. LOL! Thanks to your post, I'll be singing Super Freak for the rest of the day! :-)

Suzybelle

SNORT, Tina - I loved the movie "Little Miss Sunshine".  Now I will be singing SuperFreak for the rest of the day.

Anonymous

You came to rant but this has turned into a thread to encourage.  We can say having a sense of humor is an SE of BC.  Now I want to see a picture of the red cowboy boots!

Suzybelle

They are actually tan with red embroidered roses all over them - they are so gorgeous!!!  But I am horrible at posting photos.  Sorry. 

kira66715

Suzy, you bring joy and humor into so many lives. I was snorting over the "yeh Einstein, I get it re-inked every night."

You have a gift--of tremendous insight coupled with hilarious humor--and of easing us into realizations that are bittersweet but cushioned by your honesty and kindness.

You are a gift, IMO.

The David Sedaris of these boards. But ten times funnier.

Kira

Suzybelle

Kira, I'm blushing.   Thanks for the kind words!  You know I adore David Sedaris and am crazy about his insane sister Amy.  I have her hospitality book and it keeps me in stitches.  During my bc diagnosis and surgery I read it constantly...she is totally bent, but awesome.

Nordy

I love the "yeah Einstein... " line too! Don't you wish you could have just said that and let it fly???!!! LOL

And you know what - being a little "bent" is not such a bad thing! I always think my personality is a little off kilter too! It is just finding the right blend of friends that love you for who you are!

Anonymous

One of the first things I tell a new acquaintance is that there is not a serious bone in my body.  And it's true because there is absolutely nothing that happens today that I will give a drat about in 10 years.  Tomorrow will take care of itself.  Drives my boss crazy sometimes.  It's a job (that I love) and it pays the bills, but if a system goes down the world will not end while we wait to get it back up.  A customer has to wait 10 extra minutes to get an answer, and, your problem with that is...  Yeah, drives him batty but, 'Oh Well'!