Tuesday, December 31, 2019

Peace Out 2019... It sure has been...

How is tomorrow already 2020? Seriously, where did this year go?  It’s strange how time passes, and it felt boring and busy all at the same time.  One thing I will say about social media, is it’s a good way to archive and go back and say, “Wow, we did some cool stuff!” Of course 2018 was hard to beat, since it was the wedding!  It was the season finale everyone was waiting for. So what does that leave for 2019? It was a year of learning, finding out what we want, what we don’t want, and how to get there. What’s crazy is that by my standards, it was a pretty quiet year, but we did A LOT. Here are some of the highlights as we look forward to the new decade!

  1. We took a honeymoon!  We went back to our old stomping/wheeling grounds of Vegas, and spent some real time off together, remembering how to have fun, and why we fell in love in the first place. We even hired an amazing photographer to capture some fun shots from where it all began. 

    2. Business was booming! Seriously, I made more as a consultant than I have in my entire career. It’s funny, because every year I say to myself, it’s time to phase this out. I have a day job, I’m not a “youth” anymore, it’s time to give up this gig. Every time I say that, I get asked to do another contract, or keynote speech, and I do it, and remember how much I love it. With this, has come a lot of soul searching. I have started to learn my worth, and be more selective about how I spend my time. I am no longer in the stage where I need to “build my resume.” Things need to either fulfill me spiritually, or financially, and if they don’t, that’s ok. It’s amazing to be at a place in your career at which you are able to say “No thank you, this opportunity is not a good fit for me right now!” But the ones that do, are fantastic. The biggest professional highlight this year was being selected to give a keynote speech at the Tennessee Youth Transition Conference. Everyone was so hospitable, and it was fantastic to get to know some really ambitious youth who once again, gave me hope that maybe there is some good left in the world. If you’re interested in learning more about my “side gig” check out MalloryCyr.com
    Mallory speaking at a conference

  2. 3. We saw some shoooows! I saw Hanson again, around Christmas which obviously made my 90’s heart grow three sizes that day, and we FINALLY saw Wicked together. We had opportunities to see it before, but for some reason I wasn’t “ready.” Wicked is something that had been such a part of my past, for better and for worse, and although Owen had been there for some of the worst things we had both experienced, I wasn’t sure I was ready to “go there.” Well, before we got married, we saw RENT, Les Miserables, Dear Evan Hansen, Hamilton…. it was not like he had not seen me get emotional at a show. Actually, I try to get different seats now so the poor ushers at DCPA don’t have to witness my routine musical meltdowns so frequently. So we saw Wicked. We got tickets for the Friday before my birthday, and the week we went to Vegas, and it was perfect. Since this was only the second time I had seen it (and the last time was in 2004, and I didn’t have my glasses), it was kind of like seeing it for the first time, and it was still amazing and relevant, and magical. Then we went to another event at the Hard Rock Cafe to see the cast perform in a cabaret style show, and the wizard himself said he was so glad I was there.

    4. We also got to see Kristin again, for the first time in Denver, along with my dear friend of 21 years Mary-Mitchell Campbell, who is now Kristin’s musical director/piano player. Many people may not know, but the three of us first met in 1998 at a camp fundraiser! I told Kristin after seeing her perform with the Colorado symphony, “You know, you have always been good, but you are AMAZING. It has been such a journey watching you grow professionally and vocally over the last 18 years.” And she got all choked up and teary, like she does, every time we see each other, and said “That is so meaningful coming from you, it really means so much.” Then we hugged and took pictures of our shoes together, because this is my life.

    5. We started exercising regularly. In April, our neighbors opened a class based fitness studio and offer a ton of amazing classes, with instructors that aren’t there to scare you or make you feel like you’re not good enough. They help us adapt things, and push us to do what they know we are capable of. I have felt myself grow stronger and have learned how much my body actually NEEDS physical activity (the wine after yoga doesn’t hurt either).  Shout out to Carbon Fitness! 

    6. We spent time with family. My family came to visit over Labor Day weekend, and man did we make the most of it! Then in the fall, I took some time to go to Maine by myself for the first time since Owen and I lived in Boston. For all those folks who are married, or looking at getting married, or even those who live with a significant other, it’s ok to do things by yourself. Financially, and in terms of time off, it doesn’t always make sense for both of us to go on a trip, sometimes I travel alone for work. None of this means that we love each other less, or that there is anything wrong with our relationship. It’s crucial to remember who you are as a “me,” when you are not being an “US!”

    7. Owen and I won Halloween with our second ever couple's costume and went to parties until we finally won a costume contest. Elton John and Tiny Dancer? How could we not win!

    8. WE MOVED! Finally, after four years of living in an apartment complex that we never wanted to live in, we were in a financial situation where we could actually move somewhere that felt like a “grown up” home. As many of you know, we were very spoiled in Boston, as we had a studio in a brand new luxury building, which was financed on student loans, because we needed accessible housing. It also set us up for big, big disappointment when we tried to find an apartment we could actually afford. The rental market in Denver was/is far better than Boston, but since we were moving here with employment pending, it was difficult to get approved for anything, so we took what we could get, moved from a studio to a one bedroom and saved up to get back where we wanted to be! Finally, after years of advocacy and a fair housing case, having an accessible apartment, being treated with respect, and having a home I am proud to have people over, even though the move itself was exhausting, I can finally sit back and say WE DID IT.

    9. TINSLEY MARIE! Even though we got Tinsley in 2018, this year we have watched her grow and shine, and it has been the greatest joy. She has truly found herself, and especially since moving to our new apartment, she is just loved by everyone who crosses her path (except squirrels).

    10. The end of 2019 was spent doing a lot of reflection. In the fall, I applied for a job, that I am totally qualified for, and I interviewed well, and I didn’t get it. Someone else did, who was pretty much personally selected before they began the hiring process. This happens a lot in my field, so I wasn’t totally shocked, but it did open my eyes to a lot of things. It showed me, first of all, that I didn’t actually need the job. There were things about it I wasn’t in love with, and it would have been a new commute, new people, new friends… things I actually didn’t WANT to figure out, especially around the same time that I was moving. 

     This year also taught me a lot about community, and what that REALLY means. There are communities I have accepted I am not a part of. AND THAT IS OK. Because I have other communities I AM A PART OF. And they are amazing. I have friends that make me laugh until I cry eating lunch at work. I have friends that have left work to bring me to the hospital when I didn’t know what was wrong. I have friends that have brought me to the airport at 4 a.m. I have so many friends that I can talk about anything with, serious or silly. We have people we look forward to seeing in our neighborhood, who know us and our dog. WE HAVE A COMMUNITY.

    Now I’m going to get real for a minute. This whole disability thing was never a part of my identity, or my narrative until someone told me it had to be. It made me question who I was and what I knew. There were times in my career it has played a bigger role than others, and I will never say I’m NOT an advocate, but I’m more than that.

    I have a master’s degree, I am a writer, a speaker and a policy professional. I have reached a point professionally, at which, just like saying no, I can decide who I am. I was hired in my current job for my experience with contract management, communications, and understanding of policy.

    Yes, my lived experience helps me have perspective in everything I do, but it’s a part of it. I’m done trying to get into clubs that don’t want me. I’m done being someone I’m not because people expect it of me. I’m done being a one dimensional token. Thank you 2019, for all you taught me, for all the growing you made us do. I’m ready to step into the new year, the new decade, being me. Being more authentic than I have been in a long time. I’m ready.

Now here's a song to take with you to 2020!

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.