Sunday, January 22, 2017

Girl Power

The Women's March on Washington, with Sister Marches Around the World
January 21st, 2017

Nasty N'awlins Women gearing up in Washington Square Park
      Women from all across the globe rose up yesterday to protest the continual oppression of women and demand our rights, and I was proud to be one of them. Originally I was planning to go to D.C. for the Women's March through the Newcomb-College Institute (basically a mini women's college within Tulane), but after several discussions with my parents and a brief conversation with one of my doctors, we determined that this was not a viable option for me. Sitting through two 17-hour bus rides in the span of two days and marching in between would have been brutal on my joints, and I was reminded by my surgeon that I am "still very much in recovery." However, I am incredibly proud of the amazing Tulane women who did make the journey up to D.C.! My roommate Allison and friends Ella, Juliana, and Sarah marched with over half a million women in our nation's capital. I was thankful to be able to participate in one of the Sister Marches here in New Orleans, Louisiana.

Left to right: Allison, Ella, Juliana, and Sarah
Thank you for marching!
     The lead-up to the march was stressful - Friday night was rough for me. As I am learning more and more about the healthcare system here in the United States through my "Foundations of Healthcare Systems" public health course and readings, I am becoming increasingly concerned about the major impact the repeal of the Affordable Care Act will have on my life. My biologic medication for the month of January cost almost $2,000 with insurance. While it will not be this high every month, I really cannot find the words to convey just how absolutely ridiculous that is. This medication is the difference in me being in a wheelchair and being able to go on runs in the park. It is the difference in feeling wrapped up in the chains of chronic illness and feeling free. My health is way less than ideal even with it, and I do not want to think about what might happen if it is taken away from me by greedy corporate powers. Our healthcare system is broken and flawed even with the Affordable Care Act, and without it things are only going to get worse. Repealing the ACA removes patient protection from health insurance discrimination against people with pre-existing conditions. Here's a shocker: I have a lot of these "pre-existing conditions," all of which are pretty expensive to treat and put me in high-risk categories that no one would feel comfortable gambling on. I am also extremely concerned about the reduction of birth control coverage. I started birth control in an attempt to deal with anemia of chronic disease, a complication that affects many kids with juvenile rheumatoid arthritis and causes upsetting symptoms such as hair loss and fatigue. Of course, my biologic and birth control are only a few of several medications I rely on to live a life that is as normal as possible. How in the world am I going to get quality health insurance with a diagnosis like juvenile rheumatoid arthritis? How am I going to maintain my high quality of life?

Three incredible women I had
the pleasure of meeting yesterday.
 I would like to be able to look in the eyes of everyone who voted for the current and incoming administration and ask them why they voted to refuse healthcare to people like me. I would like to know why they would prefer that I spend my days locked up in my room with swollen joints than out trying to experience all that life has to offer. I would like to know why they approve of a few milliliters of liquid costing thousands of dollars a month. I would like to know why they voted for someone who very publicly and unashamedly mocked a journalist with a disability that affects his joints to be the President of the United States. So if you are one of these people and would like to answer my questions, be my guest. But please remember and consider that whatever reason you give for the way you voted is more important to you than my ability to function and live a happy and healthy life. Certainly there are many things that are way bigger and more important than just me, but just as a not-so-friendly reminder, emails are not one of them.

Representing with my Planned Parenthood shirt
and Angel of Grace arthritis awareness bracelet.
    I went to bed on Friday night absolutely terrified, envisioning myself learning in the near future that my biologic, the only medication that has a significant positive impact on both my short-term and long-term health, is no longer an option. So when I woke up not feeling well on Saturday, I knew that I had no choice - I knew I must go and march with all of my sisters around the world who are experiencing similar and even much different fears on the basis of their gender, sexual orientation, race, immigration status, disability, and/or religion. I packed a bottle of ibuprofen, my inhaler, my pink medical mask, and a couple of Zofran in my bag, slapped on my arthritis awareness bracelet, tossed my beloved Planned Parenthood shirt over my head, and boarded a packed streetcar full of other nasty women who refuse to normalize this crap. If you would like to learn more about the specific connections between feminism and my health, or if you are curious about the intersection between the Women's March and chronic illness, please check out my post from just over a year ago, "Why My Chronic Illness Demands Feminism," which features me wearing this exact same Planned Parenthood shirt.

     All of the nasty women in New Orleans gathered in Washington Square Park, a green space on the edge of the French Quarter, prior to the march, where we listened to a variety of speakers while greeting each other and bonding over our shared love of human rights (something I suspect men never really do). I adore situations like these, because even though I am pretty introverted I love meeting people, especially people older than I am, and soaking up all of their wisdom. There are so many smart, courageous, passionate, and relentless women in this world, and meeting even just one of them is a blessing beyond compare, so being surrounded by thousands of them at the New Orleans Women's March was just too much for my mushy heart to handle. I went into yesterday's march needing to find the good in the world, and let me tell you, it was there.

     The actual marching process was when I began to realize what a terrible situation this was for my joints. To use one of my most common phrases, I was in a pickle. I had already walked over a mile from the streetcar to the starting site of the march and stood for a long time listening to all of the speakers and cheering on powerful women, so by the time we were actual moving down the streets of the French Quarter toward the Central Business District even the distracting nature of the march could not pull my attention away from my aching hips for more than a few seconds at a time. I was clenching and unclenching my fists and rotating my wrists in hopes of retaining as much range of motion as possible in my upper extremities since I could feel them swelling up, but this became exhausting and I finally gave up about halfway through. I stayed close to the sidewalk, afraid that my nausea would get the best of me. I bit my lower lip and scrunched my forehead in a last-ditch attempt to hold back tears while every step I took caused excruciating pain to slam against my ankles, knees, and hips.

    Perhaps some of you are reading this and thinking, "Hey, Rach, maybe going to that march wasn't the best idea, it seems like maybe it didn't go so well for your body."

     You're right. I am too sick to be doing something like this. I am too sick to be marching through the French Quarter in a germy crowd of people on a warm, rainy NOLA Saturday. I am too sick to be risking by ability to attend class this week simply by putting one foot in front of another and coming into close contact with other human beings. You're right. But guess what? I have to do this, because marching will be much less detrimental to my health than having my treatment revoked because some rich and healthy people who unfortunately hold a lot of power in this world have decided that stripping me of medically necessary injections that reduce my pain to mostly bearable levels is a good and moral idea. So yeah, I marched. Yeah, my arthritis pain level right now is probably the highest it has been since I started college. Yeah, getting out of bed today felt like running a marathon. Yeah, I skipped breakfast this morning because my hips hurt too much to walk to the dining hall. Yeah, I'm salty about it, because I should not have to march for such basic human rights. But there I was, and here I am. If you want me to feel better, stop suggesting that I take some extra time to rest and start calling your congressional representatives, advocating for people with disabilities, supporting funding for medical research, and voting for politicians who actually care about whether or not I can access my medications and the specialists who prescribe them.

     The primary reason that I write this blog is because I believe in the power of storytelling. I believe that sharing our experiences makes our local and global communities stronger. Publishing posts that detail the many difficult moments of spending my life from age eleven onward fighting against rheumatoid arthritis is not typically cathartic or therapeutic for me. I do not make money off of this blog and I often feel overwhelmed by the prospective of sharing so much of my life with whoever feels compelled to click on this link. But stories are powerful. That is a fact, and that is what I repeatedly remind myself when I feel reluctant to share parts of my own story. I wish I had realized this early. I wish I had realized it a few years ago when friends, family members, and teachers were begging me to let them into my world, one that felt like a black hole to me at the time. I wish I had allowed them to view my story and demanded substantive change in the way people with chronic illnesses are treated in this world. If you have a story to tell, if you have a reason why this administration is so concerning to you, please share that story, at your own pace and when you are ready. There will be thousands of nasty women like me here to listen and respond. And if my story has ever meant something to you, I am pleading with you to channel whatever it is that this blog has given you at some point over the last year - hope, despair, joy, or concern - into concrete actions aimed at protecting healthcare and advocating for women with disabilities.

     There were a bazillion children at the New Orleans Women's March, and I always have such admiration for parents who bring their kids to these sort of events, because toting kids around can be logistically difficult and protests can be chaotic. The NOLA march kicked off with a jazz funeral for Lady Liberty (have I mentioned how much I love this crazy city?), and as we found ourselves in a gridlock-induced standstill while waiting for marchers to begin filing out of the park gates, I listened to a young mother explain to her three- or four-year-old son who Lady Liberty is and the symbolism of having a jazz funeral for her. I do not know who that mother is and I do not know who that child is, but in that moment the future looked so spectacularly bright. Later in the march, I found myself walking next to a set of parents who were pushing a very young child in a stroller while their six-year-old daughter danced through the streets of the French Quarter, clearly feeling strong and empowered by the presence of so many other dedicated women. Every few minutes, she would lift up her chin and scream at the top of her lungs, "Girl power!" and the rest of us would scream it back in solidarity. Leading all of us made her feel so special, impactful, and important. I wish that she, and every other little girl, could feel that way for the rest of her life. Girl power gives me hope in a world in which boy power has consistently failed. Girl power gives me a reason to dream. Girl power makes me want to have a daughter one day just so that I can remind her of her worth and value in this world. Girl power means that I can tackle even the most overwhelming of setbacks. Girl power meant that my shaking limbs but loud voice could make it through that march.

     After the march reached City Hall, I stayed for a bit to cherish the time with so many amazing (nasty) women and listen to more speakers. I had the privilege of meeting other women for whom the repeal of the Affordable Care Act is a very real and pertinent medical concern, and we shared our fears with each other and promised to keep on fighting, no matter what happens. We discussed how far our country has to go on compassionate policy toward people with illnesses and disabilities, even if by some miracle the ACA is allowed to stay intact. There are millions of Americans who will experience the tragic effects of an ACA repeal in even more drastic and negative ways than I will, and I am advocating for them just as much as (if not more than) I am advocating for my own health. I am privileged to have two rheumatologists, live in areas with excellent healthcare, and have a pharmacist mother who understands the system. I have a loving family that is willing and able to make sacrifices for my health and friends who stick with me even when times are tough. No one should lose their life to policy. Congress should not be allowed to order the deaths of thousands of people who just want to feel better. What can save us from this hopelessness? Girl power.

      After exchanging some email addresses and phone numbers with likeminded marchers, I made my way back to the streetcar, accompanied by an afternoon New Orleans drizzle that luckily did not turn into downpour until after I was onboard. Usually during peak hours the streetcar is a real struggle for me, because if I take a seat people shoot me sharp glares suggesting that I should leave them for people "who really need them." Having an invisible illness means lots of judgment but very little ability or desire to explain myself, and even though I know that I should probably not give in to this lack of empathy, I usually just stand because the glares stick with me for longer than the joint pain. I am convinced, however, that God was on my side yesterday, because I managed to spot an available seat next to two compassionate women on each of my trips, even though the streetcars were packed and most people were standing. I like to think that Jesus agrees with my conviction that if people are going to rip my health insurance out from under me at some point, the least they can do is save a seat for my aching bones.

     When I returned to campus after the march and after standing/walking for upwards of six hours, I limped to the dining hall, ate a banana and some cantaloupe (you really just have to go with whatever your stomach wants when you're nauseous), took a cold shower in the hopes of calming my fiery, swollen joints, and collapsed in my bed. I sent emails cancelling all of my activities for Sunday (today), and even though I feel horrible about it, I know that I am doing the right thing by focusing on rest and recovery. I am going to do my very best to attend all of my classes tomorrow, but we will just have to see how that goes. As I mentioned in my most recent blog post, sometimes I have to stay back for a little while, and I am slowly learning that that is okay, too.

      The road ahead is downright terrifying. To my many sisters out there who are scared of the changes (or lack thereof) to come, I have your back. And to everyone reading this, I hope that we will move forward by taking each others' hands, calling our representatives, sharing our stories, seeking out the stories of people leading much different lives than we are, and becoming safe spaces for hurting people.

The future is female. 
Women's rights are human rights.
My liberation is bound up with yours.
We are stronger together. 

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