An MS Epic Derby Journey

Multiple Sclerosis heads to a party

My boyfriend and I got invited to a Kentucky Derby party.  It sounded very exciting and fancy, but I was a bit perplexed.  What I knew about the Kentucky Derby is that it had something to do with a horse race and you were expected to wear a fancy hat, both of which I learned from Pretty Woman in the scene where Julia Roberts, in the brown polka dotted dress yells “woot, woot” and everyone in the audience laughs because that’s not very classy.

(Turns out, I didn’t even know that much. In preparing this blog I reviewed the movie and Vivian is actually at a polo match. Polo, Derby what’s the difference? But now you understand all the research I do for my blog.)

Anyway, a hat and new outfit were needed.  Guys have it so easy.  And I don’t mean the whole easy to pee outside thing.  Peter probably spent a total of 30 minutes on his outfit choice and 15 of those minutes included my help.

Not so much for me.

It took several stores, opinion polls on FB messenger, a visit to my friend’s ‘multiple appropriate dresses for multiple events’ closet, hours on Amazon, several visits to the UPS store to process Amazon returns and a dispute with a different retailer for a return they never processed, before I settled on what I felt was the perfect dress.

And it was a lovely dress.  You know, one of those dresses that make you feel pretty and light and happy even if it makes you look like you are one of the Kentucky Derby horses.

(Though I may not have looked quite as I felt, I’m officially admitting that with the dress/horse comment I may SOMETIMES exaggerate a bit in my blog.)

Official Derby Pinata

With a dress comes proper under things and now they make proper underthings that are supposed to smooth you out. But you have to make sure that those underthings go with the dress and so you have try the dress on over and over with each of those potential underthings.

And then there are shoes.

Will it be too cold for sandals or too warm for pumps?

Can my lousy balance handle a 2-inch kitten heel or a chunky low heel?

Do I dare try a 3-inch heel or even, shivers, a stiletto???

I would like to blame multiple sclerosis for the fact that I wouldn’t dare try on a stiletto, but the truth is, I’ve never worn a stiletto in my life.  Well, except for that one time my best friend and I were 11 and playing dress up and I sprained my ankle trying out her mother’s shoes.

Then there’s jewelry.

I have jewelry.

But what is appropriate Kentucky Derby jewelry?

I tried Googling it, but Google doesn’t have everything.  The jewelry images Google showed didn’t include the jewelry in my jewelry box.

Rude!

Lastly was the fun part-a hat.

Here Google was helpful.  Turns out, there’s no limit to the hats you can choose for a derby party.  And believe it or not, you can type Kentucky Derby hats into the Amazon search bar and a ton of affordable options will pop up.  Plus, you aren’t limited to hats.  Lots of derby appropriate headwear is available at Amazon. You can choose a funky head band or even, something called a fastener.

I ordered a cool feather fastener for only 12 bucks and was excited.  But it arrived with the feather and netting but no fastener.  I would have to fashion (pun intended) a fastener of my own and so I sent the feather/net thing back.

Eventually, I decided if I was going to this party I would go all in and ordered a big, funky, light blue hat.   It arrived a little crushed with it’s several bows flattened out.  I corrected this by putting empty toilet paper rolls in the bows and then spraying the heck out of the whole thing with hairspray.  And it worked!!!

Kind of like the tp roll look

Despite the crazy number of decisions that were involved in preparing for the party, it was kind of fun and by the time the party arrived, I was in a derby mood for sure! Even though it was a rainy day, the party was a blast.  The party hosts and attendees were lovely people and ranged in ages from a 2-year-old wearing a sun hat with mini plastic horses glued to it, to a classically aged lady with a wide brimmed straw hat sporting artificial roses.  Many connections and friendships were made.

The food was delicious derby fair including gastronomic greats like macaroni and cheese, pulled pork, the best potato salad I’ve ever had and a yummy vanilla cake with a strawberry layer.  Turns out, while some people like Chinese food or pizza, my cuisine of choice is derby. 

Who wore it best-Me?

It also turns out I’m NOT a hat person.  I put the hat on in the car so I could arrive at the gathering all gussied up, only to not be able to get out of the car because of the wide brim.

Who knew?

It was hard to stand near Peter without one hat bumping the other hat off kilter. Even though his was a basic fedora, I’m going to blame the fedora on this one.

All was a great time, and I’m going to cherish this event as a wonderful memory, even if MS showed up and brought some reality to my Southern Belle fantasy.

Or Bella?

First, the whole preparation part of what to wear on each different part of my body was made more difficult by my MS issues of not being able to decide anything, and not being able to walk gracefully in anything but properly fitted sneakers and jeans.

But the real MS problem came after we’d hung out for a bit.

Short, block heeled sandals were not the problem.

But standing was.

Nobody sits at a derby party.

At least not this one.

There were chairs but they sat empty.

With my MS, I walk better than I stand.  And so I did walk while I mingled and enjoyed getting to know new people.  After an hour or so, there weren’t any places left to walk and so I stood.  I stood with Peter, and we chatted and enjoyed ourselves.  But the slow fire began to burn inside my legs, and it wasn’t from new shoes.  No doubt about it, it was from multiple sclerosis.

Still, I managed to fake it for another hour and then I couldn’t any longer lest a leg give way and I make a fool of myself collapsing to the floor.  I was forced to sit.

And then I felt bad.

Did my new derby friends think I was anti-social?

Lazy?

Bored?

Aloof?

These are the MS nonperks of being a sitflower.  One doesn’t show up at a social event and announce, “hey everyone, happy to be here.  I have an invisible illness called MS and may wind up sitting a bit but please don’t take it personally.”

I think those at the party didn’t sit as there was too much too experience and too many people to get to know and who can blame them?  I wanted to keep joining the many different conversations as well.  But when I needed to sit, the invisible pain in my legs became visible by me being the only one sitting!

I felt off.  With no way to explain, and a freaking hat with a brim so large I couldn’t sit back in the chair either. I felt judged.  And not by any one of the nice people in attendance, but by my very own self.

Official derby pic

I completely understand this is a small issue in the grand scheme of an amazing time.  But for me, it brought up another aspect of living with an invisible illness in the social world.

I could spend weeks on making decisions relevant to the party and I could sleep well the night before and take my legal speed to have energy for the party.

I could even be relieved that though there was a lot of conversations and kids playing, the MS problem with discordant noise wasn’t rearing its ugly head that late afternoon.

But the pain of a nice long stand was, and what did it project about me to others who don’t really know me?

Peter was great and sat with me some of the time and stood near my chair the rest of it.  He gets it.

And while my new friends can’t get it since my multiple sclerosis is invisible and frankly, were likely too busy having fun to even notice my disconnect from the group, likely only I noticed it.  And thus, it was up to me to find a way to enjoy myself despite it.

And I did.

Not really Epicenter

Especially when the horse I picked out of a hat came in second place.  You go on with your big bad self, Epicenter!

But this is an MS blog and MS tried to get in the way of another great time so I thought I would share.

Plus, how else could I sneak in the picture of my canine friend Bella wearing my hat?  It took two doggy treats to get that pose!