Dear Congress

By Melissa Fern

 

Dear Congress,

On a Saturday night, with college parties erupting all around my apartment complex, I have decided to write to you. Instead of searching graduate programs at universities I’m interested in, instead of grabbing drinks with a friend after a long day at work, instead of inviting friends over for a movie… I am writing this letter for you. To you. And I am begging you to listen.

This is my plea to please pass the Parity Act. We are now halfway there after Social Security updated the guidelines for Huntington’s Disease rather than the outdated “Huntington’s Chorea” definition that ruled for the last twenty years. Now, we just need the two-year waiting period waived for diagnosed patients to receive Medicare.

I have only met with Congress members twice now and feel I have hardly had the chance to truly share my story with you. If I can hold your attention for longer than the three minutes I got during some of those meetings, if I can convince you to finish reading this post, my hope is that you will finally understand how important this simple piece of legislation is. The Huntington’s Disease Parity Act is necessary for a community that is small in numbers but huge in my heart. The community that this legislation directly impacts is my family, my friends, my caregivers, and other people who I may not have met yet but cherish and believe in during this fight. They are already dealing with more than they ever bargained for but they are the strongest and most deserving people I know.

The first time I ever went to D.C. was to fight to pass this bill. I got the tour of a lifetime and was able to walk in the tunnels under the Capital and snag a picture in front of the White House. But at that time, I was exactly a week away from learning the results of my genetic test. I still had hope that my genes were negative for Huntington’s Disease. I was able to tell my story as a “what if” rather than “this is reality.” I was still able to say that I was just another person at-risk for HD, another person that you could act like you cared about.

On June 6th, it was revealed to me that I inherited the gene mutation that would eventually cause Huntington’s Disease. I thought my life would do a 180 after those couple of seconds it took for the doctor to get the words out. I assumed everything would change, but in reality, everything was still the same. My genes had been that way since before I was born, it was just my knowledge of them that changed. And now, after finding out the truth, I knew that all I could do was fight. For myself, my future, and all of my loved ones who would be affected by my disease.

On July 20^th , I met with Congressman Levin (D-MI) with five other people impacted by Huntington’s Disease by my side. I sat there quietly as you, Congressman, told me how important this bill was and how worthy this community was for this waiver. When you ended the meeting, though, you tried to convince us that it would probably never happen because once “we” get this, “everyone” will want it. What you didn’t know when you said this, what you didn’t give me time to say, was that just a month before meeting with you, I learned that I had inherited the HD gene from my father. You assumed I was there for another family member or for the community in general when in fact I was there for myself. You wished me luck for after graduation and seemed to question me when I mentioned I didn’t have definite plans yet. At 21 years old, 4 months away from graduating from Ohio State University with a Bachelor’s of Science in Psychology and Women’s, Gender, and Sexuality Studies, you judged me for not having my life planned out yet.

Congressman, please take a moment and think back to when you were 21 years old. Remember when you were about to graduate with your first degree. What were the top three things on your mind? I’ll take a few guesses based on what I see with my peers today: How about the first week of the semester coming up? Next week’s exam? The next frat party or football game? Applying for another internship? Your graduate school options? Who your future wife or husband might be?

Imagine balancing all of that on top of the realization that you have at least 20 years less of life, of retirement, of career-making, than all your friends and classmates. Would you have all of your life planned out yet?

Now add in everyday anxieties. Not wanting to get out of bed, breaking down if something small goes wrong in the morning before work, panicking every time you have to get in a car, and feeling physically sick from the amount of schoolwork ahead of you for the night. Some of these may be part of the normal college experience but they become elevated when your brain is infected by disease.

Add in the stress of the college debt waiting for you after graduation. This is normal for a lot of students these days but they have 20 more years of time spent on a career, building a 401K, and paying those loans back before having to worry about the next life step. My financial advisor told me straight up that I should not start a 401K based on my situation. Why? Because I will probably die or need to take money from it before the normal retirement age and the additional expenses would be so harsh that the return would be almost nothing. Imagine being 20 years old and having someone tell you that you will probably die before you retire. How do you handle that and still balance “normal young-twenties’ activities”?

Next, start worrying about what you’re going to do after you graduate because those loan payments are coming soon. Do you go to graduate school to try to make more money in the future? Is that worth the time and money investment if your life is going to be shortened? Do you search for a job that makes you more money or a job that you truly love? When your time is limited, what becomes more important?

Don’t forget that whatever you do, you need health insurance and you need to get it through a job or a spouse so they don’t ask “the question” about if you have tested or not.

Oh and about that spouse… Do you marry the person you love sooner rather than later because you know you have less time and you could potentially wreak some of the legal benefits? Is committing to marriage strictly for the legal benefits an immoral decision to make? Or do you put it off in-case they can’t handle you once your anxiety and other symptoms worsen? You know you won’t be able to handle the cost of divorce down the road, either.

You need to start saving money for your future medical bills so you don’t put your family in debt. You need life insurance and long-term care disability insurance but you’re too young for any company to grant it to you yet.

And your dad’s symptoms are getting worse. Do you move back home to spend more time with him while you still can? And if you move back now, you’ll be stuck until he’s gone. At what point is it okay to be selfish and follow your dreams, move to new, far-away places, and travel the world? Is that time for exploration and self-discovery more important than the comfort of your own family?

Finally, because your dad has been sick for 14 years, he has no solid income and he had to go bankrupt before he could get health insurance through the government. Even now, he can’t afford the medications or neurologists that would really help him. Will that happen to me, too? What will happen to my brother, both financially and emotionally, if he has to take care of me and dad both? Does he deserve to have his dreams ripped away from him because the government denied me the basic right to proper health care, despite my genetic code? What happens to our family if he inherited the gene, as well?

To tell me that I am deserving of the right to health care but blatantly say it will never happen seems like the contradiction of a life time. I’m not asking the government to hand over everything to me. I want to make a life for myself and be proud of my accomplishments until I can accomplish no more. I just want a security blanket, a guarantee that I can have access to medications that could help my symptoms or cure my disease when they become available. Just in-case I don’t have time to make these decisions or set up the right insurances for myself, the Parity Act helps ensure the financial security for my family that will be taking care of me. It would allow me to breathe and maybe feel like a normal college student again. I could focus on getting my first “real adult job” or even start seriously considering graduate school, spending more time with the people I love, and studying for my last exams.

In order to understand where I am coming from and why this bill really is so important, you need to think about where you were at 21. You need to imagine yourself in my shoes because there is no other way this bill will be passed. Your empathy and emotions as a human who was once 21 needs to take over your trained political strategies and allow you to look past potential costs and forget “who is next.” In the last 8 years, not a single other long-term disability or disease has asked for the same waiver that Huntington’s patients are asking for. You need to be able to see that this is a problem for more and more youth as they test at younger ages in order to start preparing for the future because right now they have no sense of security. This is an every day worry for people who are suffering right now. Passing the Parity Act could practically slip under the rug, without much cost and without much attention politically, but it could impact the lives of so many strong and amazing people who need it.

Please, Congressman Levin and the rest of your colleagues, if you have made it this far in your reading then I know you have some heart involved with this topic. You need to be able to imagine the situation for yourself and your own family and see the urgency in getting this bill passed. You must fight with us.

An Open Letter to Caretakers from the Cared-For

Being a caretaker is not easy.

I know. I’ve watched you work hard for me every day.

Often times, you might think that all of the sacrifices you’ve made are not appreciated the way they should be. Though I may not be able to tell you, I know that if my past self had been able to look into a telescope that showed me the future, then the thankfulness in my heart would swell up in the form of tears that would fill my eyes and spill onto hands that were made for keeping me alive and well as my sickness took control.

I’d see you sacrificing your time to take me to the doctor’s in order to get the medication I need. I’d see you making me meals, feeding me patiently, putting me to bed, cleaning up my messes, and making sure that I’m safe and comfortable. I’d see you remind me time and time again where I am, what my name is, who I love, and that you love me. I’d see you crying because you miss who I used to be, my company, and arms that were able to embrace you and tell you that everything was going be okay.

My love, lift up your head. I know that sometimes you feel like giving up and that none of this matters, but you’re the only reason why I’m still here. I need you, and I want you to know that you are not alone. There are other people who struggle with the same battles you face every day, and a lot of them share your pain. God allows every breath we draw to be inhaled as long as we have a purpose here on Earth, and you and I are still here, even though I am sick. There is meaning in all of this, though your eyes may not always be opened to what that entails.

If I am your Lover: We pledged ourselves to each other, through sickness and in health, and you are doing such a wonderful job at keeping that promise. I loved you then and I love you now, even though I might not be able to show it. When I dream, I can clearly see the day when we first fell in love, and I remember thinking that you would always age more gracefully than me. Memories from our past play like a movie stuck on repeat, and every time I emerge into my dreamy state, I remember that I’ve always loved you more than the day before. When I am awake and trapped inside of a body that is ill, I watch every move you make that helps keep me alive. You’re the only thing that I see, and since the day we found out about my sickness, I could’ve never prayed for a better way to live out the rest of my days. I love you with all of my heart.

If I am your child: I know that you never wanted this type of future for me, but here we are. I came into existence as exactly half of you, but each time that you make a sacrifice for me, a place deep inside of me learns that I want to be more of who you are. You never asked for this, yet you still love me in the same way that you would’ve loved me if you weren’t my caretaker. I know I make things hard on you at times, but you are doing more for me in a day than most other parents are even asked to do for their child in a year. You’re the only one who has dedicated their life to me, and someday, I will be able to look into your eyes, alive and well, and tell you that there are no words to express how thankful I am for you. As a baby, I clung to you for comfort, fell asleep to your soft singing, and relied on you for everything. Today, the same still stands, and you love me just the same. I love you with all of my heart.

If I am your parent: When you were little, I changed your diapers, rocked you to sleep, and taught you how to live and love to the best of my ability. I stayed up late to take care of you when you were sick, I curled up into bed with you when you were scared of the dark, and I let you have the better part of everything I had. Now, you are doing the same things for me. I never wanted to take away these prime years of your life so that you could take care of me, but you did it without hesitation. I may never be able to watch you walk down the isle, hold my grandbabies, or give you advice whenever your life gets rough, but I want you to know that I spent the better parts of my days hoping and late-nights praying that your life would be filled with love and happiness. Though I may not be able to tell you, I still love you just as much as the day you were born. Please be patient with me like I was for you when you were struggling to take your first steps. You will always be my baby.

And for everyone: You are known, you are needed, and being my caretaker is the biggest gesture of love that you could have ever expressed.

I am still that same person that you used to know, you just can’t see it right now. I am hidden behind a cruel hand that the world has dealt me, but I am still here. I can see you, I can hear you, and I live because of you. Someday, I will be able to thank you.

I know you love me even though you get frustrated with me sometimes. And I love you, with all of my heart, and I’m here to remind you that “love” is not an emotion. It’s selfless, patient, kind, and everlasting. It lives in me and it lives in you.

And love does not get sick. Love does not take breaks. Love does not forget.

Love never dies.

The Advantages of Having a Sibling Who is Close in Age

Oh my goodness, I have no idea what I would be doing right now if it weren’t for my little sister and the fact that we are so close in age (more specifically, about a year apart, thanks to my moms forgetfulness and pill-form birth control). Besides the first year of my life, she has been with me through it all, and by that, I mean everything. So, in honor of celebrating another year of her life, I thought I’d make a list of the reasons I am so blessed to have a sister who is so close to my age and my heart.

---

#1: We Shared EVERYTHING

Whether I, her wiser, much more stylish older sister, wanted to or not. And yes, clothes are number one on the list. When we lived together, she would always sneak into my room and steal my recent purchases from the mall, and I would never see them again. Where would she put them? Only God knows, but I’ve come around to forgiving her.

When we were younger, I was always forced to share my friends. She would tag along wherever we went, interrupting our conversations and stealing my limelight with her quick-witted humor. In return, I always tried to act super cool around her friends, because I was, you know, a WHOLE year older, meaning that I had much more wisdom when it came to clothes, MySpace pics, and boys.

I used to hate sharing my friends more than anything, but now, I wouldn’t change it for the world. We’re all grown up, dealing with the torturous twenties the best we know how, helping each other along the way.

We also shared late-night fits of laughter that we’d try to keep quiet for fear of wrath from our parents, making funny faces and telling made-up jokes to entertain ourselves in the days before T.V.’s were installed in every room.

We shared coughs, toys, celebrity crushes, the remote–well, you get the gist. When I say everything, I mean everything.

#2: When Family Crises Arose, We Stuck Together

And this aspect of our lives is what I think kept us from growing up to be psycho loner cat ladies. Being two sisters from a divorced family was not easy, and I’m 99.9% positive that I would not have been able to go through it alone. As we watched our parents fade apart, we clung closer together with every foreshadowing aspect of our mom and dad’s fate. And when our parents finally separated for good, my sister and I never left each other’s side. We went everywhere together, substituting the hole of whatever missing parent was away that weekend with each other, holding hands and sharing a bed when money was tight. We even gave in and let each other play with the other one’s toys (since we didn’t have many at the time), and as long as my sister let me control our games, we were all smiles.

#3: We Went Through our “Awkward Stage” at the Same Time

I’ll admit it: We were both a little on the chubby side around the age of 12, but hey, those Wonderballs weren’t going to eat themselves! However, we both saw our freckled-covered bodies, flat chests, and hairy legs a major disadvantage when we suddenly realized that boys were actually cute, and that all of the other girls at our middle school seemed to have everything going for them, including cellphones! But thank the Good Lord above that I thought it was a great idea to wear a shirt that exclaimed in big, bold, fuzzy letters: Boys Are Overrated! I thought I was being so rebellious, and my sister drooled at the idea that it would soon become her stylish hand-me-down.

Unlike us, all of our friends were allowed to wear makeup, shave their legs, and get their eyebrows done at 13, so we both felt pretty out of place. We were both late bloomers, and as if our school’s initials of P.M.S. plastered on the walls wasn’t enough of a reminder, we both got nightly talks about “Becoming women,” and “The birds and the bees,” while our friends got to wear actual bras and go to the mall without parental supervision.

On top of all that, I was cursed with braces that intensified the shape of my uneven smile. Luckily, my sister slipped sweet little notes under my bedroom door after I cried because my family got to eat Subway for dinner while I was forced to slurp down tomato soup.

#4: We Don’t Judge Each Other (At Least, Not in a Way That Would be Acceptable if Anyone Else Were to Do it)

Although we do tell it like it is. But you can do that sort of thing when you’re sisters. For instance, if my mom were to say to my sister, “What the heck have you done to your hair?!” There would surely be an all-out brawl, followed by a couple days of shunning, but if I were to say the same thing to her, we would probably laugh, and I’d tell her that she seriously needs to fix her hair, and then she probably would (or not, depending on her mood. She’s a little on the rebellious side).

Problem solved.

And it works both ways. She is allowed to say things about me and my life (that I’ll actually take to heart) that might end in a slapping match if it was said by anyone else. We can always expect honesty from each other, and trust me, it is freely given.

#5: We Make Dreaded Phone Calls for Each Other

THIS. This has been a life-saver when my anxiety is through the roof and I’m too scared to call into work, and vice versa. We may look nothing alike, but on the phone, no one can tell if they’re talking to me or my sister. And we take advantage of it…it’s a gift! And it’s such a waste if you don’t use the gifts you’re given to the best of your ability.

She’s saved my butt on days when I’ve forgotten I had to work, and I’d make her come up with a really good excuse and then call in for me. She’s such a good actress, so I’m never scared when I put the fate of my income into her hands.

Me, on the other hand…well let’s just say that I’m not a natural-born actress. The few times that I’ve called people and pretended to be her, I ended up giggling, and then chuckling, and then trying to contain my laughter while I was supposed to be sounding sick. Maybe that’s why she doesn’t ask me to do it that often.

Either way, I got the lucky end of the stick on this one.

#6: We Never Get Tired of Each Other’s Humor

Or maybe that’s just me, but 22 years have passed by and there is still no one on this earth that can make me laugh like my sister. Seriously, she makes my belly cramp up and tears roll out of my eyes over the same sort of things that she’s been making me laugh about my whole life, and it never gets old.

And it’s great, because only a select few get my ridiculously lame sense of humor, but my sister always laughs the hardest and the loudest, and let me tell you, it’s over nothing. At least, nothing that anyone else would ever laugh at. I get to try and be funny all of the time, and if she fails to find my impression of a bucket of lard funny, then it’s okay because she’s my sister and I know she’ll laugh at the next one.

We used to sneak into each other’s rooms after bedtime and just make complete fools out of ourselves, conjuring up fake words and songs and then laughing until we thought we’d die (or be killed by our parents). There was nothing better, especially when our family was going through rough times. In those moments, we kept each other sane. We still do.

#7 Nothing Embarrasses Us When We’re Together

We try really hard to embarrass each other, too. Actually, it’s more of me trying to embarrass a girl who doesn’t get embarrassed about anything, while she convinces me to do things that she doesn’t find embarrassing at all, so I’ll do it, and then become embarrassed.

She doesn’t have a lot of rules while in public. I do. So one day, we’re in CVS and I’m looking for a new shade of summer lipstick. I find a shade that I really like, but I tell her that I don’t know if it would look good on me. Nonchalantly, she tells me to take off the wrapper and try it on, convinced that if I were to get caught that the store clerks would understand and let me off the hook– because she does it all the time. She seemed so sure, so I unpeeled the wrapper and slathered on the hot-pink, waterproof lipstick. As I’m pursing my lips in the mirror, a manager turns the corner and yells, “HEY! I saw you try that on when I was watching the cameras. You know you’re not supposed to do that! Did you? Did you try on the lipstick?”

With hot-pink Estee Lauder smudged all over my lips, I whisper “What do I say?” to my sister, and she looks at the manager, claims he has no idea what he’s talking about, and grabs my hand to run out of the store while he yells after us.

“See, I told you it’s not a big deal,” she says calmly as I’m sweating and breathing hard, feeling like a runaway criminal.

After a moment of silence, we look at each other and bust out laughing. And to this day, I still let her talk me into doing otherwise stupid things, or convince me that “nobody cares if she accidentally puts her shirt on inside-out and backwards everyday,” which she does do, almost every day.

I wish I could be more like her.

#8: If Someone Makes One of Us Angry, They Make Both of Us Angry

And it’s usually a more spiteful anger for the one who was told about it. She gets mad at her boyfriend, and I daydream about shaving his legs or posting a really unflattering picture of him on Facebook. Vengeful, I know, but I’m not very good at plotting. I do, however, possess a very wide, very educated vocabulary, and I’d give him an earful if she let me.

Yeah, I mostly daydream about the words.

I have to be very careful when it comes to telling my sister about people I’m mad at, though, because she likes to daydream about pounding her fist in their face or breaking their baby toes.

Either way, we’ve always got each other’s back. It doesn’t matter if one of us is angry because one of our friends ate the last bit of our ketchup (the nerve!), the other one will be just as upset. I’ve stopped talking to some people altogether because they’ve done something to hurt my sister, and even though she’s made up with them (because she’s always the first to apologize), I will continue to shun them until they apologize to me for what they did to her.

Rational, I know.

But I know that my sister is the first one I call when I’m angry so we can be angry together until our wrath is satisfied. It might not be the healthiest type of therapy, but hey, it’s in our blood.

#9: We Always Build Each Other Up

Which is important, considering that we both had to deal with environments that encouraged unrealistic body images, and we’ve both dealt with eating disorders. We always tell each other that we’re beautiful, even when we look like we just went through the garbage disposal. It’s because we know each other’s heart, and we had to learn the hard way that what you look like on the inside defines your beauty.

On top of being beautiful (on the outside, too), my sister is the most talented singer/songwriter/actress that I’ve ever known. I know she could be a superstar if she had the time and the money, but right now, she’s just a star to me. I have one of her songs on my iPhone that I blare in my car and sing at the top of my lungs, filled with pride and jealousy that the whole world doesn’t get to see and hear what I do.

Likewise, she reads and supports all of my writings, and appreciates them even when no one else can seem to relate. She never fails to make me feel anything less than beautiful and talented when I’m around her, and she’s done that for me my whole life. I only wish that I’d started reciprocating sooner, but you know how prideful and cocky older sisters can be.

#10: We Tell Each Other Everything

Same as rule #1. Nothing is excluded.

You ate a whole bag of Cheetos in under 15 minutes? That’s awesome, gold star! You went to the bathroom in the White House and your poo ended up looking exactly like Obama? OMG, send me a pic!

But it’s not all fun and games, though I wish it were. I tell her things about battling depression, anxiety, and my disease that I would never tell anyone else, and she’ll describe it back to me in a different way, but it’s like she’s reading my mind. We both deal with the same mental issues, and because we’re the only two people in the world who have lived the same life, we get each other. Sometimes we don’t have to say anything at all, we just know. I really do think (when it comes to most things) that we have the same mind, and though our lives are now monumentally different, we’re still the same person to each other, and I know we always will be.

When she’s hurting, I feel her pain, but I’ve always managed to keep a straight face, and she does the same for me. Our whole family could be sobbing over some crisis, or the world could be crumbling around us, and I know we would be the only ones with our shoulders back and head up, nodding at each other in approval of the strength we hold fast to for the other’s sake.

So go ahead world, give us your best shot. We’ll be waiting.