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.
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“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.

Homesick at 10,000 Feet

Hello.

I'm on an airplane.

I'm on my way to Alabama, to present at a transition conference.  In October, I am going to Arkansas.  It's kind of cool getting to check off some states I haven't been to yet.  After going to New Orleans, I realize I think I really like the south, so let's cover the bases, shall we?

Today, I set my alarm for 7, but I woke up at 6:30, and realized it was probably silly to try to go back to bed, so I made some coffee (southern pecan, to set the tone for the day) and went on the interwebz.

It never ceases to amaze me as to what small things can feel like a punch to the gut sometimes.

I won't lie. I wasn't sad when I moved.  I can count on one hand the times I actually got sad about coming to Boston.  Owen and I had the opportunity to present side by side at a pretty powerful meeting last week, and we were talking about emotional times of transitions, being alone, and depressed, and I explained how I really went through that when I was in college, but with this move, I haven't even had time to be sad.  I also feel myself settling back in this place of not being a crier (not that there is anything wrong with frequent crying).

Sure, I cried a few times when we first got here, but it was out of sheer exhaustion and just be overwhelmed with everything we had to do before I even began school.  Since then it's been like....when I saw Les Mis  (I can't. Even.)  and when I had the aforementioned corkscrew driven into my hip bone.

I also have had a shift in my Meyers Briggs type, so there is proof I tend to me more of a thinker.... But I digress.

Of all things, I was watching a Jenna Marbles video, and Maisy had told me it was not her typical work, and I started thinking about my life, and this place I've been in lately.  

My primary job, with Got Transition? Is ending in June, and for those of you who remember the last time a grant ended for me, it was sort of bleak, and a little scary.  This time, I am a lot more prepared, with a much better understanding of what that will mean for me, but it also means I have just been doing a lot of thinking of what I WANT to do, and where I want to be in this work.

Owen have talked a lot recently about our life together and what we want, and how there is a WE now that will shape the direction of what we do and where we potentially end up. I am not just me anymore, working and jet setting so I don't have to think about how alone I feel.

In addition to all of that, we have recently lost some young people that I knew (and some I didn't) through the Next Step program.

Also, in addition to Maisy being in London and feeling epically far away, things have just left me feeling sort of emotionally overwhelmed, and wanting to be eating Sam's on the deck in Maine.

But I started thinking, in this whirlwind of work, school, life, often unfairly sad, life.  What makes ME happy?  What do I like about being in Boston?  What do I miss about being home?

Are they the same things that made me happy 2 years ago?  

One thing I have learned along the way is that if you are not a (at least somewhat) fulfilled person, knowing what keeps you getting out of bed every day, you can not help others (whether that is even your goal or not) And it is ok to take time away from helping people and pretending you have all the answers to answer some questions for yourself.

I won't lie, there are totally days when I miss being home, but it usually is when I'm waiting for the B line in the freezing cold, or on a beautiful day when I just go "I really miss driving down a road in the middle of nowhere singing Taylor Swift at the top of my lungs."  And then something happens and I'm over it.   So I made a list.  Because I think lists are a nice way if sorting things out even for yourself.

Here is the list:

(I'm sorry if some Maineahs are offended by some, but these are just my honest thoughts, about MY life)

What I miss:

• My family
• Maisy (yes- she is family but she gets her own line)
• Singing
• Driving (and a combination of this and the above)
• Muffy
• The pool
• Sam’s
• Uncle Moe’s
• A few select friends that I saw enough to keep me sane
• Being a big fish in a small pond, what do you mean there’s no open table at this Starbucks, do you know who I am?
• My closet
• Being able to go out in sweats, knowing I will still look like I “got dressed.”

What I do not miss:

• Wal*Mart (why is this first?  I know... )
• Peacocks squawking and freaking out the poor dog
• Shoveling out my car (not that I did....), or moving it for the plow
• Having to talk to EVERYONE and hear their life story even if you’re just going up one floor in an elevator
• Super behind the times health care (even though I’ve been going there for 20 years!!!)
• Not having my own space, being able to do laundry etc.  (no offense mom and dad, but even you hate having the washer in the basement, this I know!)
• Lack of awesome food places in the general vicinity.  Ditto for Foodler, Uber, PeaPod and all the things that have made my life far more convenient here.
• Sitting in my room going on facebook, feeling my IQ drop day...by day... by day.  (Now I can sit in my overpriced 500 sq feet, and when this starts to happens, read something for school and feel a teensy more intelligent again!)

Then, as soon as I finished this list, I opened another window in Twitter, and this was the first thing I saw: 

“It's so clear, I'm where I'm meant to be, and at last I see the light”. –Rapunzel

For the moment, I am reminded, as one of my dear mentors always says, "I am where I am supposed to be." This summer will hold a lot of changes, but soon we will all be together, and it will be warm out, Maisy will be home, and we'll all just keep checking in to see how it's going and what WE want to happen next. 

 I think one of the cool things about being a "grown up" is being able to make those decisions, and I've already decided I don't want to be someone who just goes on autopilot in some job where I have grown cynical and burnt out, so I put my faith in the hands of the universe and those who have chosen me to carry the torch and am ready for the journey.  Onward. 

If You Don't Like It- GO HOME.

Before I get into this entry, let me give a disclaimer. I (clearly) do not have any affiliation with the military. I'm not even a fan of war. What I do know, is that for people who are involved in military services, it is so important to them, and I have endless respect for the people who go and fight for our rights and our country. It is with all of that love and respect, no matter your political views, that I write this entry.

Yesterday, I had the rare opportunity and privilege to go see the fabulous Lady Gaga speak at a rally. Politically, I must say my rally days have been pretty minimal, but not nonexistent. I went to the University of Maine at Farmington and was the "token straight girl" among

my friends, which I later just proudly adopted as straight ally. During the No on 1 days, the FIRST time around, I briefly attended a rally, made the front page of the paper, and joked that my activism days were over.

Little did I know.

Since then, things have been mostly healthcare related, and there was Obama fest which was very rally-esque, and was such a rush and a huge shot in the arm to why I do what I do, and that I am actually sort of adopting the title of "activist" even though I was so opposed to it early on.

So, Sunday night, I read on twitter by the Gaga herself, that she was going to be in Portland the following day to speak about the repeal of Don't Ask, Don't Tell. Why Portland? that's random....

It is and it isn't. Our lovely Senators are two of the "moderate Republicans" who are often ones that not so much need to be swayed, but are the ones that could ultimately make a difference in a vote (which, frankly- I think is pretty cool) It is the same reason that Obama came, during the high times of the health reform voting. I think at this rate, they may this up, since it means Maine is finally getting some media love! I'm ok with it.

Since my mom is awesome (and a bit of an old hippie herself) she agreed that we could go to the rally.

And. It was. Amazing. Not just because of the appearance of Lady Gaga, who gave an incredible speech, but because of the entire vibe and atmosphere of so many people just striving for that unreachable, Prime Rib we call Equality. Journey played, we laughed, we sang together, we made friends, we talked about Glee. Just in meeting the people surrounding me in that crowd, and thinking of so many people I love that this could affect it just really hit me hard.

Before Gaga spoke, there were other people who had previously served in the military and were discharged because of their sexuality. It just seems so ridiculous to me. As Lady Gaga said, "Doesn't it seem like we're sending the wrong person home? We're sending home the one who does NOTHING wrong, and keeping the person who has hate in their heart instead of commitment and courage like there is supposed to be." And she has a completely valid point.

But as I thought about it. It's always that way. When a child is teased in school for whatever reason, the reaction of the guidance counselor is, "send them to a private school." WHY? Why does the innocent have to leave the environment!?!?!!? Why can't we have consequences for the people with the hate. Why can't we just build tolerance or even ACCEPTANCE?

It seems backwards to me, and I would support the new law Lady Gaga proposed called, "If you don't like it, Go Home." If you're the person who is distracted by what someone does in their private life, and THAT takes away from your ability to serve your country, then maybe that is the person who should step down.

As I'm watching the debate....(on whether to debate...) in another window, I am so proud of our Senator Susan Collins who got up and spoke on these exact points, and saying how much money is wasted on training and replacing these perfectly capable soldiers that are discharged, and that it is not about certain traits you have pertaining to your personal life but can you do the job. We are focusing on the wrong things, once again.

And as for Lady Gaga, well, yes, she has been a controversial artist to some people, but the fact that she took the time to come and speak about something so important, I think is awesome. Who is to say why someone is passionate about a cause. People listen to celebrities. Be as nonconformist as you want, but it's true, so why can't we let those people carry our causes if they so choose? We complain when people are famous and have endless amount of financial resources and do nothing with it.... and then.... we complain when they do? Come on people...

Gaga wasn't even there as Lady Gaga yesterday, she was there as a US citizen, and a person who believes in a cause? So why not? It wasn't just about her, it was about all of those people who fought, who care, and who just want the right and opportunity to take whatever life path they choose.

So yes, I'll say it again, yesterday, standing in that sunshine, singing journey and cheering til my voice was gone, I was proud to be a holder of Maine values. And I will continue to fight for the prime rib that is equality- ALL TYPES OF EQUALITY.

Because... I am tired, of getting by on chicken nuggets and Boca burgers.

Here is a video I took of the day, and also a video of her entire speech, so you can form your own opinions! Love it or hate it, it was pretty cool to be there!