Birthday Evolution

Standard

When I was young, I hated the attention I received on my birthday. I hated when people would sing me the “birthday song.” I would whimper. I would cry. And, if my weak SMA muscles would have allowed it, I would have slithered into a ball under a table at the first note of the famous tune.

Many people that know me now would be surprised by this. But, it’s very true. If, on my birthday, I could have burrowed into a hole in the ground like El Chapo evading the Federales, I would have done it.

Por supuesto.

Being a small kid with a visible disability, you always get looked at differently. Always. Even as a tiny child, you sense the eyes that follow your every move. The assessing. The wondering.

The what is wrong with that little girl? gaze that becomes so familiar. While it’s not a scary experience, it is an annoying one.

If you’re wondering what that look is actually like, here’s how I would describe it. You know those ASPCA commercials with that mournful Sarah MacLachlan song? The ones with her singing “Angel” as they show a montage of sick and undersized puppies that will die if you don’t donate $15 a month? You know that sad (nearly tearful) look that your face gets when you see that commercial?

That’s the face I’m talking about.

So, yeah… pull it together, dude.

Anyway… when you’re already ‘different’… and used to being recognized by many as ‘different,’ you don’t want any more attention than absolutely necessary. So, your birthday is yet another extra spotlight that shines upon you each October.

I felt this way for many years. I didn’t want the additional fuss, or the attention, that came with that day. I had enough of it already.

But, as I approached my 30th birthday, a birthday that many doctors had predicted that I may never reach, I began to feel very differently about it. It evolved in my mind. It felt like a milestone. An achievement. A mark of a battle that I was winning.

And, suddenly, celebrating my birthday became something that I wanted to do. It was something that I didn’t want to tuck into a drawer and pretend didn’t exist. I wouldn’t be like Rudolph Giuliani ignoring a Congressional subpoena.

I would face it. And enjoy it.

So, now, here I am, years later, on my birthday, proud to be alive and proud to be a part of this world. It’s been a lot of hard work getting here (and I’ve had a lot of help along the way)— but, I did it.

Happy Birthday to me.

birthday

(Yes, that’s a pumpkin spice latte. Duh.)

Becoming Oliver Twist

Standard

Life with a complex disability, like SMA, is obviously challenging. It takes a great deal of physical, emotional— but, most importantly, logistical— strength to power through each day. Your brain always has to be 2 or 3 steps ahead in order to anticipate challenges that life, and this very inaccessible world, love to throw at you. It’s exhausting. It’s like playing an endless game of Whack-A-Mole at Chuck E. Cheese. You know those little heads are going to pop up somewhere. So, all you can do is keep slamming the mallet down on the board hoping you earn enough tickets to buy a Slinky at the counter.

This constant state of preparedness is a necessary evil. It’s the thing that makes it possible for me to get out of bed in the morning. To have the ability to do the work I do, and I accomplish what I need to accomplish— all while balancing my complex medical needs.

As I’ve discussed frequently before, my custom power wheelchair is a big part of this effort. It’s the most important tool in my life. It’s the object that makes my life— my independence— possible. At the beginning of this year, I began the arduous process of getting a new wheelchair. Medicare requires that many steps be completed before an order can even be processed. Initial Visit With Doctor. Evaluation from Special Physical Therapist. Consult with Wheelchair Provider. Assessment With Doctor.

Each of these steps must be done in a certain order, the documents must be signed and authorized by all parties, and all of it must be done sequentially. Like a really complicated, and really French, pastry recipe. The foofy, pretentious kind. The kind that takes hours to make, you eat in two bites, and leave you hungry afterward.

It’s a fucking nightmare, frankly.

I have a Type A personality. I like to get shit done. This trait has come in handy with my SMA, because such attention-to-detail is why I’m still alive and thriving 35 years after most doctors thought I would be dead.

But, this ‘wheelchair vortex of hell’ doesn’t always reward such preparedness. Because, no matter how on top of things I am, I am still at the mercy of a large medical bureaucracy. The bureaucracy lets unsigned forms sit on desks. The bureaucracy will deny a claim because one date is mistyped on one form. The bureaucracy won’t pick their own nose without a memo telling them which finger to use.

Just a few weeks ago, (but, nearly nine months into the entire process!), Medicare finally authorized my request for my new wheelchair. This was after several paperwork kinks and delays that nearly made me sit in a corner and cry. But, with this authorization, the DME (durable medical equipment) company was then able to place the order with the manufacturers.

You’d think I’d be ecstatic. You’d think I’d be over-the-moon with happiness… you know, just like R. Kelly is in a room of underage girls.

But, I decidedly was not. For I knew that my current wheelchair had to survive until the new chair arrived— which could still take months. And that was the biggest gamble of all.

Because, you see, Medicare would not authorize repairs to an existing wheelchair while a new wheelchair is being ordered. So, I would be majorly SOL if my current wheelchair took a crap in the meantime. Therefore, each bureaucratic delay— each kink that I had experienced in the process— increased the probability of this happening.

And, yesterday, the laws of probability— the laws of mathematics— finally caught up with me. A “RIGHT MOTOR FAULT” error message brought my wheelchair to a halt.

This isn’t the first time this has happened during my wheelchair-using life. In fact, with this wheelchair, alone, I have had to have the motors changed FOUR TIMES. Yes, that’s right. So, when I saw this “RIGHT MOTOR FAULT” error message, I instantly knew that in about a week, my life was seriously going to go down the toilet until I could get new motors installed.

With the arrival of my new wheelchair nowhere in sight, and the necessity of having a functioning wheelchair, I had to do a painful thing. I asked the DME company to order me a new set of motors. I agreed to pay the hefty price. Because, this wheelchair is my basic tool of life, and without it, I can’t function. The DME company understands my pain and kindly agreed to give me a cut rate, but it’s still more money than most people pay for their first shitty car.

To be honest, I actually cried. I sat and cried because I was going to have to find a thousand dollars to fix a device that allows me to live.

It’s demoralizing. And it makes me feel very, very small. In an inaccessible world that’s already stacked against me— a world where I have to be smarter, wittier, and more prepared than everyone else— I still have to scramble for this most basic thing.

But, I don’t have a choice. So, I applied, and received, a disability grant from NMD United to help me pay for some of my replacement motors— and I set up a GoFundMe to cover the remainder of the cost.

The sad thing is, I shouldn’t have to do any of these things. This wheelchair is a medical device. It’s a lifesaving device. I have Medicare. I have a private supplemental insurance plan, too.

I shouldn’t have to peddle to others for something like this. No one with a disability should have to do this— yet, we are forced to do it everyday, in some form or another. It’s so Dickensian. So two-hundred-years-ago.

Yet, nonetheless, here I am, like little Oliver Twist, holding out my small pail—

Please, Sir, I want some more.

oliver

Note: If you are disabled, and have experienced similar problems getting coverage for your specialized wheelchair repairs, please write in & share your story. We must try to speak out when we can. And speak loud. Wheelchairs are more than “durable medical equipment” — they are life-saving and sustaining.

A Time Traveler’s Guide To Judgment Day

Standard

Since beginning my Spinraza journey over two years ago, I have been exposed to some pretty high-level scientific stuff. The Principles of Motor Neurons. Genetic Sequencing. Genetic Manipulation. And a whole bunch of really smart people geeking-out on how to turn cripply SMA people like me into X-Men.

People often ask me what it’s like, during this stage of my life, to describe what Spinraza has meant to me. What it has done for me. Most of the SMA patients out in the world are adolescents, children. Many are babies. After all, only a small portion of those with SMA make it into adulthood. So, those of us that are adults can give a perspective that children simply aren’t able to do. We have more life experience, and frankly, we’ve got the big-adult vocabulary to articulate what this is really like. We’ve got detailed analyses with really large words. SAT words. Oxford Dictionary words.

So, do you want to know what it’s really like?

You know the classic H.G. Wells novel, The Time Machine? The story that popularized the concept of time travel and launched an entire genre of science fiction? When Wells first published the book in 1895, it sparked the imagination of millions. Over a century later, the concept of time travel is still intoxicating.

Everyone (including you!) probably has a secret idea of what they’d do if they had the opportunity to travel in time. While most would do something selfish, like get winning numbers from a future Powerball drawing, some folks would do something more altruistic. Something that would benefit mankind… like killing Adolf Hitler or castrating Harvey Weinstein.

But, all these scenarios are fictional. Because time travel is impossible. Right?

Well it is… Unless you’re me.

If you really want to know what the Spinraza process has felt like to me— what is has meant to me— this is the way I describe it.

I am now a time traveler.

A time traveler that is revisiting a part of her life that she thought was gone forever.

Spinal Muscular Atrophy has always been a progressive condition. I was stronger at 5 than I was at 15. At 15, I was considerably stronger than I was at 35. And, by 55, there was a good chance that I would be dead.

But, with Spinraza, a crazy thing happened. The mad scientists at Stanford thrust me into their Interventional Radiology room— injected some liquid into my spinal fluid… and turned back time.

I began to live in own past. I could do things that I hadn’t been able to do in years. I was living in the past. Just like H.G. Wells wrote about 124 years ago. And, just like the novel, it’s been a wild, and frankly exhausting, ride.

It’s important to note that time travel isn’t free— and Spinraza is one of the most expensive drugs in the world. So, to continue to qualify, I must undergo thorough physical and respiratory evaluations every few months to measure my progress.

Given there aren’t many adults like me receiving the treatment, the data gained from our experiences is especially valuable. These measures and outcomes will hopefully offer the evidence needed to expand Spinraza access here in the US, and around the world. I want more time travelers with SMA. But, to do that, we’ve got to illustrate the benefits with cold, hard data.

No matter how you slice it, though, this added pressure is intense. While I’m constantly told not to be anxious about it— to simply do my best— I do worry about it. I fret about the messages I get from people with SMA around the world longing for treatment. I fear they won’t get to travel back to their past.

I feel guilty that I do.

Not all of us long to do something bold with a time machine. We don’t all want to be heroes that shoot Nazis. Some of us just want to travel to a time where we could talk a little louder… laugh a little harder… and pick our own boogers.

A few days ago, I had yet another full day of these assessments. It’s a day that I truly dread. Each time. It’s long, exhausting, and I usually always have at least one moment when I long to scream or curl into a corner and cry.

I care so much about these tests that it’s almost all-consuming. I do frequent physical therapy in preparation. I have even sought support from a counselor to work through the emotional challenges of this arduous process. These assessment exams are often all I can think about. Literally. All. I. Can. Think. About.

It’s like how Donald Trump must feel about Twitter.

I came into this assessment day— judgment day, frankly— feeling unsure. Feeling like perhaps I had plateaued. That I hadn’t noticed a change from the last time. I was resigned to this idea. I accepted it. It was okay (and expected) to have a plateau because SMA, by nature, is progressive. Stabilization is a win, too. Stabilization means more time available in the time machine.

But, I had a surprise. My respiratory measures showed additional small gains. My physical assessment was the most solid— yet.

The time machine was still working.

While I made it through this judgment day, in six months, I will have to do it all again. And again… and again. Because, in some way, time still manages to march on.

But, I’ll be waiting for it.

Looking at these stars suddenly dwarfed my own troubles and all the gravities of terrestrial life. I thought of their unfathomable distance, and the slow inevitable drift of their movements out of the unknown past into the unknown future.

H.G. Wells, The Time Machine

018BEBBD-3237-4D49-A1F1-D602AA3D6158[7708]

Yes, We’re 20 Years Older Now

Standard

The brain has the amazing ability to compartmentalize time in a way that can make us forget how much time has actually passed. For example, when I’m watching Netflix, my brain will ignore the fact that I’ve watched 3 hours of Grace & Frankie. My brain will swim in this blissful interlude until something cracks it— like the window that pops up on the Netflix app. You know the one I’m talking about. The Netflix window that asks if you are “still there” because so much time has passed since you began watching that it thinks you might be dead.

Personally, I hate this Netflix feature. My brain doesn’t want a reminder of how long I’ve been watching TV. I don’t want someone judging my life choices like that. After all, if I really wanted someone to judge me, the best way to do that is to give birth to a baby. Because then you can watch the entire world criticize every choice you make as a mother for the next 18 years.

Anyway, in addition to compartmentalizing time, the brain is also really good at making us forget how old we actually are. Recently, my high school class celebrated our 20th reunion at the amazing event venue, The Century, owned by our classmate, Erin. Once arriving at the reunion, the glamour of the surroundings was a blast of reality. While my brain understood that 20 years had passed, it hadn’t really understood that we were 20 years older until that very moment. The twinkling lights, the crisp table linens, and the fancy cheeseball shaped into the numbers ‘1999’ were glaringly grown-up. I suddenly realized we weren’t people that had a slice of pepperoni and a soda from Pizza Plus for lunch anymore. We were going to have caprese skewers with aged balsamic. We were going to eat an adult dinner using adult dishes at adult tables.

On the cocktail menu, I saw Gin Rickey. My newly-awakened brain recognized Gin as a very grown-up thing to drink. So, I ordered one. And then I proceeded to put a 14-inch red straw that I stole from a movie theatre into the drink (yes, I may be Adult Elizabette, but some things will never change). My cripply SMA ass will always need to use a straw in a drink. Even though my hands are a little stronger now with Spinraza, they will never be strong enough to lift a cocktail in fancy glassware handcrafted by some dude in Germany.

Another signal to my brain that time had passed? Suddenly most of the guys in my class weren’t recognizable. They were taller. They had facial hair. They had wives that made them wear pants that actually fit. It was very jarring.

My friends and I began to not-so-secretly flip through pages of the yearbooks on display like we were identifying suspects in a criminal lineup:

“Who is that guy over by the balsamic caprese skewers?”

“I don’t know.”

“His chin is bigger than the one in this picture.”

“Yeah— I don’t think he’s our man.”

But, it was when a big-smiled guy approached me with a hearty, “ELIZABETTE!” and a hug that I realized that I had an extra disadvantage in this game of high-school reunion Guess Who. I couldn’t recognize the guy hugging me. He looked nothing like anyone in my class. His chin wasn’t familiar. His pants were appropriately-sized.

But, he clearly knew me.

While being me has many perks (see HERE), one thing is very lacking— anonymity. It’s super obvious who I am. I was the only person in a wheelchair in my entire high school. In fact, I was the first person with a significant physical disability to graduate from Patterson High. So, I could literally have had a Caitlyn Jenner-style transition and they would still pick me out of the crowd.

It’s important to note that this lack of anonymity also makes it impossible for me to commit a serious crime. Don’t believe me? Imagine this:

Police Detective: “So, do you have any idea who may have committed this robbery?

Bank Teller: “Well, she was wearing a mask… but she was driving a fancy black electric wheelchair.

Police Detective: “And you say she was armed?

Bank Teller: “Yeah, but her hands were too weak to even point the gun at me. I felt kinda bad, so I gave her the money anyway.

This lack of anonymity did nothing to help me in this moment at my reunion, however. I was losing this round of Guess Who. As he pulled back from his hug, he said, “It’s me— Gilbert!”

“No-you-are-not!” This slipped out before I could help myself. Like when I cuss in front of small children or loudly burp after I eat cucumbers. It’s just not my fault when things like that happen.

My brain was not reconciling the evidence presented. This was Adult Gilbert twenty years in the future. Not little teenage Gilbert. It was as if, once again, my brain was desperately trying not to acknowledge how long I had been watching Netflix. It wanted to ignore the little pop-up window on the app insinuating that only a dead person would be watching TV for this long.

A little later that evening as I began eating my fancy dinner of chicken in a mushroom cream sauce, I started to think that the being-20-years-older-thing has its perks, too. We are more mature. Our clothing choices are better. And, the food is definitely more sophisticated than back in 1999. And, while it could have been the gin fueling those thoughts (which is possible), I still suddenly couldn’t wait to see what the next reunion would bring.

And at least there’s one thing for certain: I still won’t have to worry about not being recognized…

38E31445-09A9-46BF-9F2C-F6418416A215[7029]

Party Like It’s 1999

Standard

The music icon Prince recorded his famous song 1999 when I was a baby, yet that song became a defining tune for my generation. Further, as a member of Patterson High School’s Class of 1999, it became an unofficial anthem for our class. However, despite the awesomeness of Prince (which was f#$%ing indisputable), it must be said that his song still came in second in our hearts to Survivor’s smash hit, Eye of the Tiger.

If you play that song for any Patterson Tiger graduate from the last 30-odd years, our heart will race. Our pulse will quicken. And you can pretty much get us to agree to do anything. And I mean anything. Are we wavering from jumping out of a plane? No problem— just play Eye of the Tiger for about twenty seconds and that’s all it takes to make us change our mind. The tune is imprinted in our souls and instantly brings us back to the musty smells of the PHS gymnasium when hot dogs only cost $1 and all hair scrunchies had to be crimson and grey.

In just a few weeks, my class is celebrating our 20th PHS reunion. It’s hard to believe that this much time has passed— yet, life is so different now than it was then. In 1999, cell phones were the size of bricks and email was simply the most efficient way to send jokes and annoying chain letters. And, if that wasn’t enough, in 1999, presidents could actually be impeached for lying about extramarital affairs. So, yeah, it was a weird time.

Twenty years later, though, and we’re all getting a little older now. We’ve got kids, mortgages, and if you’re like me, you’ve got some secret grey hair, too. Now we listen to Eye of the Tiger to get pumped up for other, more ordinary things— like negotiating a good deal on a new car, convincing our boss to give us a pay raise, and telling ourselves that a life-saving mammogram won’t hurt our boobies as much as we fear it might.

We are trying to reach out to members of the PHS Class of 1999 to invite them to our reunion on August 16th. We’ve located many classmates via social media, but considering we’re alleged members of the Millennial Generation (which I heartily contest, however!) our class’s digital footprint is decidedly small. So, if you’re reading this and you know someone that graduated from PHS in 1999, let them know we’re looking for them. If they balk, and claim disinterest in the reunion, just play Eye of the Tiger and watch what happens.

The song works wonders.

For information, visit the reunion Facebook page, or the event link on Eventbrite.

1999

84 Minutes… and Counting

Standard

I recently got a letter from the Social Security Administration asking me to participate in the National Beneficiary Survey (NBS) for those on Social Security Disability. The supposed goal of the survey is to improve programs that Social Security offers and to see how existing services are being utilized. I was “randomly selected” to participate in the anonymous survey. I think this is meant to make me feel special. As if I’ve won some kind of prize— like a free donut.

According to the letter, the policy research company tasked with facilitating the NBS offers a $30 gift card to participants who complete the phone survey. This line caught my attention because I like gift cards. And the fact they were going to give me a gift card for giving my opinion was very enticing. I am a person with many opinions. Further, giving suggestions and feedback is one of my favorite things to do— even when my opinion isn’t wanted, needed, or welcome. So, the fact that they wanted me to give my opinion made this a Win/Win situation for me.

So, I gave them a call. After waiting on hold for a few minutes, I was informed that the survey would take around 50 minutes. That’s a lot of time. And it’s especially a lot of time when you’re a disabled person like me that takes nearly 2 hours to get up, showered, and dressed each morning. But, I did have opinions to share. Lots of them.

I told Lucy, the survey company employee, to proceed. She began by asking me about my disabling condition, which then resulted in me having to spell out Spinal Muscular Atrophy because no one knows what the hell it is. Then, she asked:

“When did you first get a disability that inhibited your ability to work?”

“During the Reagan Administration.”

“Pardon?”

“I mean, I suppose it wasn’t Ronald Reagan’s fault, directly, but I born and diagnosed with SMA while he was president.”

As the questions proceeded, it was very clear that the survey wasn’t written with people like me in mind. This is odd because I’m über-disabled. If you had to give an alien from outer space a stereotypical example of a disabled person, I’d be your girl. But, this doesn’t mean that Social Security sees it that way.

“When do you believe that your disability will improve enough for you to get off of SSDI?”

“Not even the Vatican can make something like that happen.”

“How about in 2 years?”

I launched into a detailed genetic description of SMA, not fully satisfied until I could hear her nails clicking speedily on the computer keyboard in the background. I was determined to make my survey answers the most thorough and detailed she had ever encountered– like damn Tolstoy’s epic War and Peace. I wanted every word I said entered in the record. I was going to earn that $30 gift card.

“What could we do to help you return to work full-time? Job training?”

“I don’t need job training. I have a university degree. I graduated with honors. The main problem here is that Medicare & Social Security Disability Insurance need to cover home-based personal care attendants. The barrier of inadequate home-based care is what prevents many of us with the skills and abilities to work from doing so. How can we work if we don’t have someone to help us get dressed? How can we work if we don’t have someone reliable to drive us there? The faulty poverty-driven Medicaid system inhibits us from bettering ourselves by punishing us for even small advances we make by stripping away the meager benefits we receive. This needs to change. You want more disabled people to work? Make home-care coverage part of the Medicare program. I guarantee you’ll see results from that investment.”

“So, would a job coach help you return to work?”

I began to feel a headache nag at the corner of my temple. I began to seriously regret doing this survey. Just like a woman always regrets getting bangs. While at the salon you think it’s great, you’ll inevitably realize that those bangs will never resemble the rest of the hair on your head. This survey was turning out just like that.

Then, Lucy began asking me about my physical abilities and other aspects of my life. And that’s when the survey became more interesting.

“Can you climb a flight of stairs?”

“I assume you mean without Inspector Gadget’s help.”

 

“Can you stand and bear weight?”

“Nope.”

“When was the last time you could stand and bear weight?”

“Please don’t make me bring up Ronald Reagan again.”

 

“Have you served in the Military?”

“HAHAHA! Wait— is that a serious question??”

 

“Have you participated in the Ticket to Work Program?”

“No. But, I want to talk about the military thing some more.”

“Umm— okay.”

“Can you imagine if I went into a military recruiter’s office and tried to enlist? They would freak the hell out.”

*The sound of Lucy’s typing ceases and she begins chuckling.*

“I should do it. I’m really good at driving my power wheelchair— which is operated by joystick. Therefore, I could pilot a military drone airplane without a problem. So, that means that I could kill innocent civilians just as easily as an able-bodied person… maybe better.”

I glanced at the clock. I had been on the phone for 84 minutes—and counting. The questions went on for a few moments longer, but my attention started to fade until the very last question:

“Is there anything else you’d like to add?”

“Yes, actually. And I want you to write this down. Are you writing this down?”

“Yes.”

“There’s a bill in Congress right now that could address some of the issues I’ve raised in this interview. It’s called the Disability Integration Act. H.R. 555. Those of us with disabilities want to live productive and independent lives. Please help us make that happen.”

She thanked me for participating in the interview, and wished me all the best. Then, she asked me if I wanted the $30 gift card mailed to me, or someone else. Someone else?? I actually had to have her repeat the question because it was so insane.

Does anyone spend 84 minutes on a survey and then give the only good part about the entire experience away to someone else? No. Definitely not. I may be disabled, but I’m not a communist.

Ronald Reagan would be so pleased.

0E015560-BE7F-4F08-A8FF-380198051334[6611]