Tuesday, October 01, 2019

So you want to say "Yes to the Dress!"

Unlike most brides who begin planning a wedding, dress shopping was probably what I was least looking forward to. I spent more time scouring photos of styles that might actually work for my body (3’ 9”, a central line I would have to creatively tuck into whatever neckline I chose…) than those I actually liked.  My biggest fear was that I would have my family fly in, we would devote a day to shopping and all leave defeated and disappointed. Well, i am here to tell you that is NOT what happened, and dress shopping was easily one of my favorite memories of the entire wedding planning process!  I thought I would pull together some of my Dos and Don’ts so that all my tiny brides, or differently shaped brides can have a positive experience on your big day (or maybe just make it suck a little less!)

DO your research! A few places I found on Yelp were NOT wheelchair accessible. Regardless of the fact that myself and some of my wedding party required accessibility, I struggle to give my business to places that are accessible to all. I had a list of places I wanted to go when the day came. Come to find out, we only needed one! We went to Luv Bridal in Denver, and they were fantastic from beginning to end. You can read my full review here.

DON’T bring a ton of people. No really. I invited my mom, my sister (Maid of Honor) and one of my bridesmaids who was local and it was perfect!. I did not ask people to fly in, or invite the entire bridal party. Let me let you in on one of the biggest wedding planning secrets you’ll need.  When you invite people… you also invite their opinions.  This place happened to have a limit of how many people could join you, but I just advise bringing people who know YOU and that YOU want to share the moment with. If that’s everyone, great, but you can also meet up with your crew for bottomless brunch after and let them be surprised just like everyone else!

DO advocate. Ugh. So annoying right? I’m the bride, everyone should KNOW what I need!  When you have a disability, you are no stranger to advocacy. Well guess what? You don’t get to put that away when you’re planning a wedding. I took a few minutes to call the bridal salon I had an appointment with and explain that I was not of average height, and what they were working with.  I did NOT do this to ask permission to shop there, or create any sort of pity party.  I wanted them to be aware so they could make informed choices when choosing dresses and make the most of my time AND theirs! They were so wonderful, and acted like this was business as usual for them!

DON’T pop bottles.  I know… I know…. how can I possibly be giving this advice?  I imagined my dress shopping experience to be welcomed with glasses of champagne because, duh… wedding. But it was BYOB, and we didn’t, and I am GLAD! Have you ever decided to have just “a couple glasses of wine” and ordered some weird stuff from Amazon? You want to be in your BEST state of mind. Also, for my ladies with disabilities, standing on that round circle in dresses that don’t fit, you don’t need anything else impairing your balance! Trust me, there will be PLENTY of champs in your future!

DO stick to your budget!
I was terrified to buy a dress.  I know people spend four times our wedding budget on dresses and I was afraid to even try one on!  I was transparent about our budget from the beginning and guess what? My dress was UNDER our budget! It all worked out.  And if it hadn’t? I probably would have kept looking. I know this is a big day folks, but my wedding motto was also “it’s ONE DAY!” You have to pay rent after the wedding! Stick to your guns! I also shopped around for alterations and found an amazing deal going through a local seamstress vs. what the salon wanted to charge me!  Yelp is your friend!

DON’T limit yourself to your comfort zone. I went in thinking I knew exactly what I wanted based on what had always worked for me, and what wouldn’t work, but guess what? I tried on a mermaid fit, and guess what? It looked amazing!! It wasn’t what I wanted for the day, but I was shocked to see that something I never thought would work for me kind of did!  

DO be HONEST.  This is your day and your body, and your emotions.  I told my consultant at the very beginning that I was feeling nervous, and dress shopping was not always a positive experience for me. I was NOT looking forward to this day. Because of this, she was always checking in and making sure I was having a good time. If there is a dress you don’t love, SAY IT! You’re the customer!  What don’t you like about it? Be specific, so your team can help find what you love!

DO try a veil. I was CONVINCED I was not going to have a veil, but you see people on these wedding shows put on a veil, and get “all jacked up” and then everyone cries? THAT IS REAL! My consultant found me a veil, and I put it on, and shoot! I was a bride. I definitely took it off for the reception, but it added that touch of glamour I just never imagined.  Even if you just try one one….trust me, your mom wants you to. 

DO let your consultant do their job. Seriously.  It’s great to have ideas and Pinterest photos, but this girl knew what she was doing.  My dress was the last dress she pulled and when I came out of the dressing room, the whole salon gasped and went “THAT ONE.” Now here’s the thing, when I found the stock photo of my dress on the model, I NEVER would have even pinned it. It was nothing like what I had on my “Let’s Get Married” wedding board, but it fit me like a dream. Not only did it fit me, but I could move in it! I could go to the bathroom by myself, and DANCE! It was MY DRESS. 

DO enjoy every moment!  After my day with my “Bride Tribe” I went back to pay off my dress, and pick up my accessories, and I went by myself.  My consultant brought me different tiaras and took photos, and that was when I felt it. My mom cried as soon as I put on the first dress I tried, but I’m a tougher crowd.  Here I was, buying a wedding dress. This was happening!  It my first “bridal” moment.” And I just let myself have it. 

Of course everyone’s day will be different, and it may not be that simple. Maybe you do want to go more than one place (frankly I was sad we only had to go to one store because it was so much fun) but just remember, at the end of the day, whether it’s mermaid, or a ballgown, or a pantsuit whatever make YOU feel beautiful on your big day will be the right choice! 

Sunday, January 27, 2019

The Art of Eligibility

This post is a bit of a throwback, but it feels relevant with some of the work I'm involved in right now.  Before I moved to Boston, I lived on my own for a bit (with a roommate), and during that time, I went through my first "eligibility assessment," to continue to receive Medicaid services, and the minimal nursing help I had with my medical tasks.

It was an odd, exhausting process, and it led me to write this.  I realized it never was published anywhere, but my mom blogger friend posted it in her blog.

Recently, I've been supporting in some state level efforts to actually make this process more person centered, so while it has taken some time, I like to think perhaps we are getting there.  I have shared this with many of my co-workers as a way to show them the other side of the assessment, that it is emotional, taxing, and more than just a tool. It's a lot of mixed feelings sometimes, bringing so many perspectives to the table, whether I choose to or not.

“Are you able to get on and off the toilet by yourself? Any trouble urinating, or with your bowels? Do you wear pads or anything, or just for your menses?”

These are just some of the invasive questions that pop up during an “eligibility assessment” while trying to get healthcare services as a young adult with “special healthcare needs.”

On a typical morning, I wake up, head into the kitchen where I hit the buttons on my Keurig one cup coffee brewer with my eyes half open and settle in front of my Macbook to pour over emails and celebrity gossip until I can see straight. Usually this is followed by a shower, and all together an hour or so of blow drying, hair straightening, eye lining, lip-glossing, and perfume spritzing. But not today. Today I’m playing a part. Sort of.

In my life, my illness is not at the forefront. My LIFE is. I power on day-to-day, working to change the healthcare system for others in similar situations. I network, I spend time with my family, I get coffee with my friends, I rot my brain with reality TV, I do things every other 25 year old does. Then at the end of the day before heading to bed, I happen to get hooked up to an IV for 12 hours when I sleep. No big deal. Another day in the life.

But when it comes time to prove eligibility it’s ABOUT being sick- not able to be independent or successful. It’s not about proving how hard you have worked to achieve a level of good health and independence. It’s playing a game, to see if you “win” the services you need to ultimately be independent… and alive.

My phone rings, and the “assessor” tells me she has found my apartment. When I hang up, I throw my coffee mug in the sink, and stash my pink jewel encrusted iPhone under the pillow on the couch. As someone who meets the “income requirements,” I certainly shouldn’t have things like an iPhone. Ditto for my Macbook, which I quickly put to sleep and close off to the side so it won’t draw attention.

Today there is no eyeliner, no mascara, and no lip gloss. I haven’t showered, my hair surely is not perfected, and I’m wearing the same tank top and shorts I slept in.

I open the door for her, and my first thought is offering her something to drink (as any good hostess would) but I hesitate. Is that the right move in “the game?” If I can get her a glass of iced tea, then surely I can get some for myself… which means I can probably cook my own meals… which would probably deduct points in however the scoring of this sick game works. I don’t offer her anything.

We sit down at the kitchen table, and I wait for her to initiate conversation. I direct her to a plug so she can plug in her laptop where she will undoubtedly be recording all of my answers. I feel like I’m on a very unrewarding game show. I sit quietly, secretly hoping that some of yesterday’s mascara has successfully created dark circles under my eyes to make me look more like someone with “a condition.”

Finally we start talking. I keep my answers short and simple, only emphasizing the negative- like how hard it is for me to go up and down stairs, that of course I am able to shower by myself, but not forgetting to mention the complex dressing change that must be done after.

I know the script by now, and after awhile I just start to go with the flow, and even make light of it, in my own head, thinking of how I could joke that the only assistance I need while grooming is the occasional wax or highlights I just can’t seem to perfect myself.

I continue to choose my words carefully however, and avoid sounding too articulate.
“Do you have all your own teeth? Are you missing any?”
I raise an eyebrow, and answer “Yes. No….”

“That’s wonderful!” She says, as if having all of one’s teeth is an oddity, but considering the region, and that the assessment is done by “elderly services,” I suppose maybe it is.

I start to follow it up with “Actually, I just whitened them last night, and they are fabulously straight since I just got my braces off in November…. Which I paid for myself, and are completely paid off!” They absolutely do not want to hear that. I actually bite my lip so she can’t see how good they look.

“Have you had to see a foot doctor at all? Can I look at your feet?”

“Um… no, and sure.” I swiftly cross my ankles, hiding the one foot that is emblazoned with a tattoo, and point my toe of the other foot at her. My self applied turquoise nail polish glitters.

“Oh, you have little nail polish on it, and your hands too!” I immediately regret the touch up I did the night before, then get over it. It’s exhausting trying not to be yourself. Can’t catch it all.

The questions continue, and she begins explaining to me that my current insurance company cannot be billed retroactively, and I will have to fill out yet another application and apply for another program to prove I’m eligible for services I have already been receiving.

My brain starts buzzing, and the words on the application become a blur. “Wait… what?” I ask, striving for clarification.
“Do you want the number for the Department of Health & Human Services? I have the number for all of them!” She offers, as though telling me I just won the Powerball so none of this even matters.

“I have all the numbers.” I shrug. “I just am trying to understand what I need to do.”

We spend about twenty more minutes of me trying to clarify what I am asking, and her trying to answer. She then promises me she will relay the information to all the parties who need to be notified since once again, I’m not even sure I get it, but in a last ditch effort to not spend my entire day unshowered, sitting with this stranger in my house, I tell her I do.

Finally she prints another sheet of paper and with her arms raised says “Well! Of course you qualify for a nursing home level of care! But I know you choose home! Home home home!”

I cock my head to the side wondering if she really just said that sentence as if it were some deranged cheer they learn in “eligibility assessing school.” I try to keep my jaw from visibly dropping as I sign my name on a line under a checked box that said “I understand my options within this program and choose to stay in my own home to receive care.”

“Yea. I do.“ I said bluntly. It had been two hours and my act of playing nice was wearing off. Playing sick and tired I could do (since the tired part was not acting), but pretending this whole process isn’t the most unhinged, psychologically damaging thing I’ve ever seen…gets old. “And we’ve worked HARD for the past 25 years to see that this is the way it could be.”

She drops the cheerleader act and gathers her things, and wheels her laptop-carrying suitcase to her car. “I hope everything works out for you. Good luck.”

“Thanks,” I replied. “Have a good day.” And I meant it. We were both back to just being human again. And I could take a shower.

I close the door, and shake my head. Of course I choose home. I choose independence, grad school, work, and success… I choose having a LIFE. And I can only hope that some day, that is what the system is based on, being rewarded for being healthy and successful, instead of deprived of services that make it possible. 

Maybe someday.