How My Friends Have Loved Me AND My Disability

I lost most of my friends when I got sick. Unfortunately, this isn’t uncommon for chronically ill kids and teens. But then I got really fucking lucky. I truly have the best friends and I am forever grateful for that. When I lost all my friends, I thought no one would ever want to be friends with me because I’m sick and disabled. Turns out that’s entirely untrue. My friends not only love me unconditionally, regardless of my disability, but they also recognize that it is a part of who I am and they empower that part too.

  1. Amplify me. Trust my experience. When I tell you something is inaccessible, you don’t blame me, you don’t question it, you help me mitigate it. 

  2. Laugh about it with me. I met someone recently, and he was primed for our meeting by being told no wheelchair jokes. But you should know by now, all the wheelchair jokes.

    Can I drift? Hell yeah, I can drift! When I make morbid jokes that would make my mother cry you laugh and bring it to an even higher level of morbid. We make a good team, you and I and morbidity. 

  3. Ask about inaccessibility first so I’m not always the one asking. You learn my needs. You know what to look for in a doorway, an aisle, a street corner, a parking lot. And i’m not the only one thinking about it. There is so much more room for me to think about the way your laugh lights up my day or the way the sun catches the edges of your eyelashes, painting them orange. 

  4. Let me trust you. You have proven. Time and time again, you are a safety net. I can let go here. I can take risks here. I can rest here. I can live without fear here. You are fearlessness. 

  5. Let you love me. (I know that sounds narcissistic, but hear me out.) It used to feel like loving me was a binding contract with hurt. One that you didn’t know you were signing. Loving me means you’re signing up to learn the pain of this disease, something only I should know of.

    But you squeeze me tighter and say everybody dies. shit happens. here for a good time not a long time. maybe i’m starting to believe love is stronger than pain, even when the pain is at the strongest. You’ve instilled that belief in me. 

  6. You always take the first bite so we know if they listened when I said no cinnamon. Always taking the first step up the muddy and rocky path to find the most sturdy path. Jumping in naked to the lake first.

  7. You let me be a bitter, angry, lazy cripple. I don’t need to be inspirational with you. The room isn’t primed with toxic positivity. Here we blessed it with honesty and love and life and more love. 

  8. Hear me when I say no or I can’t do something. But also trust when I say yes. I know my body best, thank you for always encouraging me to live just as fully as possible. 

  9. You cross bridges, climb up bridges, and jump off bridges for me. And then tell me to jump off a bridge too. And cheer me on when I do. Literally and figuratively.  

  10. Teach me to pole dance on my IV poles. And keep dancing until the heart rate monitors go off.

  11. You’re always ready with an almond milk vanilla latte from JC Beans and an escape. You create a space for me to breathe. And cry. And laugh. And hurt. And love.

  12. You get it. You know what I mean when I tell you it feels like my body is falling apart from the inside out. You understand.

  13. Encourage me to change the world and be my biggest cheerleaders, my campaign managers since elementary school, my system disruptors, my change makers, my team. But you also encourage me to just be nineteen and irresponsible and live without the weight of the world in my hands. Your hands joined me and helpled me hold that weight. Together we ran.

They say it takes a village to raise a child. I don’t know if I’m raised yet or if that came and gone long ago, but I like my village. Thank you. 

Love Poems to Myself

So here’s the thing: my body and I have been at odds for years. I don’t even remember what it feels like to be in a body that doesn't feel like a battlefield. Which is fair, this body is barely functioning after all. I don’t remember the last time my body felt mine. For as long as I can remember it has felt to be in the hands of abuse and illness and pain.

I picture thirteen year old me and it feels like trying to remember someone I barely knew. My EDS onset was nearly overnight. I didn’t have time to prepare (if there ever even was a way to prepare). Turns out they don’t make handbooks for kids who get sick and never get better. And they sure as hell don’t give out guidelines on how to accept this life, much less thrive. I know, logically, that this body used to be at my will, ready to block goals and balance on four inch beams. But in reality, I don’t remember what that feels like. What being in control feels like. This body and I have been through a lot together. Surgeries. Pain. feeding tubes. Central lines. days spent staring at the hospital ceiling damning this body. Abuse. Depression. Anxiety. Coming to terms with my sexuality.

But the tides are changing. And it is the most grueling grief I have felt to let go of trying to remember and recreate and instead reinvent. I am just so tired of fighting this body, it isn’t getting us anywhere.

Do I still hate that I have this disease? Yes. Do I wish on every star to be pain free again? You bet. Do I hate that my skin holds memories of abuse and hurt? Of course. But that doesn’t mean I have to let the war wage on until one of us gives in. I am finally at a place in my life again where that’s not all I see when I look at my body. My body is once again beginning to feel mine. And more than that, it is finally starting to feel powerful and beautiful again. For so long, I couldn’t imagine ever feeling okay with my body, much less love it. I spent so long treating this body as if it were a prison instead of letting my scars heal and making a home here.

There are still days where I just want to be invisible, no doubt, but those are lessening and finally there are days where I am at peace with myself. I am falling in love with myself all over again. And that is one of the most tremendous feelings to have. I am used to apologizing and hiding and isolating because that is how I needed to cope at that time. Now, it is time for a full embrace of every part of who I am. Time to give up the shame and the hate and lay down the weapons.

This body will always hold the stories of illness and pain but it is also being filled with poetry and art and love and life. But here’s what I’ve learned: healthy is not the requirement set for self love. Healthy is not the requirement for existing in tandem with love.

I couldn’t have gotten here alone and I am forever grateful for every person who met my mentions of body shaming with declarations of love. I hear you. Every person who has loved me unconditionally not despite my disability and illness but entirely regardless of it. I hold that love in my palms and let it seep into my skin. I am forever grateful for the breathtaking first love I had. Your words telling me how worthy I am still ring in my ears. To every person who has let me into their lives and lived so fully with me and for me when I couldn’t. I love you I love you I love you. And now, I love me too.

Here’s to more night drives going no where and more kissing strangers and best friends and more making mistakes and more making memories and holding each other just because we can and more giving each other so much love we can feel it in the air. I’ll be damned if I wait another second to etch love words into the back of my mouth so they’re always there as a reminder.

I think it’s time to start writing love poems about myself and trust the universe, it’s working.


Goodbye Uterus, Hello Life

Goodbye Uterus, Hello Life

On March 6th I am having a total hysterectomy. I am eighteen years old. You may not understand why that’s a big deal so let me tell you what my life has been like lately.

Am I scared? Yes. Am I upset that I have to make this decision? Yes. Am I heartbroken that my dysfunctional body has taken something else from me? Yes. I am angry mostly just out of spite that another sense of normalcy has been taken from me. And that’s okay. I am still entirely confident that this is the right choice for me.

This is my choice and my choice only and I have made up my mind.

Let’s get busy living. And let’s get busy fighting for menstrual equality.

Eleanor & Z's Interview

Hey pals, Z “ZMKF” is an amazing climate justice activist, creative extraordinaire, and happens to be my new best friend. We were introduced through a mutual friend and have hit it off ever since. We found we had a lot in common (like having a blog) so we decided why not do a little virtual interview!

Z “ZMKF”: You're an artist, and you sell your art as prints and pins to support the cost of certain medical bills. Kind of disappointing that it isn't just free, but your art is really, really good! When did you first discover you liked to do art, and what are your favorite materials to use?

ELEANOR WHEELER: I haven't been doing art for that long. I've been painting (my favorite is acrylic and watercolor) for about 4 years, but it was always a hobby that I didn't think much of. I've also always loved painting on odd mediums, like old records and cassettes. But I really got into art just in the last year. I just started doing it more and fell more and more in love. Then I got an iPad Pro and Apple Pencil as a gift and started doing digital art, which is what I do mostly for the purpose of my shop. I also love it because it's easier on my hands and wrists, since painting and drawing can be very painful, the digital nature is lighter and easier. I was very hesitant to share or sell my art, as I had a case of imposter syndrome and huge self doubt. Finally, I just went ahead and did it and I'm so grateful. Art is a part of me now. And it helps mitigate having an expensive, incurable complex chronic illness.

Your art seems to always have a bold message in it, like your recent "Paradise Is Burning" piece. Many of these messages revolve around climate justice. How did you find the medium of art to further that message and pursue work towards ending climate change?

Z “ZMKF”: Mother Nature, as our environment is known poetically and spiritually, is very important to me. I grew up solving problems - or attempting to. Hidden somewhere in my closet are plans for a machine that could control the weather, and where I would live once I weather-controlled the capitalist failing society out of existence with storms and such. I was a bit of a weirdo when I was a kid (still am), and that fervent energy evolved into an insatiable urge to fix the world. I have the heart of a scientist and the brain of an artist (and the work ethic of a sloth, most of the time). When I joined Zero Hour just a few months ago, and joined the advocacy team a few weeks after that, I felt a fresh stirring of energy. My brain keeps tricking me into thinking I need to solve all the world's problems, but I'm most passionate about climate change and wildlife, and this is the path I'm choosing. At least for now. At least until I feel I've done enough, and that won't be for a long, long time. And art's always been natural for me. I'm mainly a writer, but illustration (*cough cough* doodling) is my second creative focus, and its freeing - it's like making a poem without a title, or a story without direction. Like thoughts vs feelings. I want to share that insatiable urge to fix the world - a feeling. Writing definitely carries power - you and I know this very well - but it's a slow process, to write. It has to feel good. It has to be edited. It has to be proofread. I make art to fight climate change, because when I'm angry about the state of the world, I like to work fast. And there's nothing faster - or angrier - than scribbling the words "paradise is burning" in red over a backdrop of an abstract forest on fire at night, and uploading it to Instagram immediately as soon as its done.

Z”ZMKF”You've written a lot and done a lot of work to try and make activism more accessible. First of all, thank you. Second of all, what are some examples of ableism you've run into in your time as an activist, and what are some ways to prevent those issues from arising?

ELEANOR: The easiest to explain and most common is simply that intersectional feminism often forgets that disabled people exist and their disability is a marginalized identity that affects the way they (we) experience sexism, racism, homophobia, transphobia, etc. Disabled bodies and voice are also often lacking from the conversation. Many times, I've talked to intersectional feminists and they don't even know what ableism is. Activism itself is often so inaccessible as well. It is inaccessible and dangerous at times, to literally be in the streets to fight for what we believe in. A simple way to fix this is to have disable folx in on the planning committees of rallys, protests, marches, and other activism events. Online activism, like what I do, mostly on Instagram and Twitter, is valid and effective, but it is often seen by mainstream activism as lazy and not "true" activism, when it is in fact the most accessible form of activism. I'm working to fix this by sharing my story, and hopefully educating other activists that online activism is valid and should be supported. Pride is also an incredibly inaccessible event. Each time I've gone, I've ended up either coming very close to being in danger of getting hurt, or getting hurt. Again, the solution is education and having disabled voices in the mix when planning.

ELEANOR: I’m sure you have exciting and bright future plans ahead of you, what do you want to do in the future, besides fixing climate change (sign me up, too)? And how do you plan to incorporate this vivid passion for change into those plans?

Z “ZMKF”: When I'm older, along with writing, I want to own and manage an inn, actually! I even have a (secret) Pinterest board for it, collecting potential furniture and themes. Writing is great, because either you're a really popular novelist, or you pay for ads on your blog, orrrrrr you don't earn any money. I'm confident in my writing ability (yes, it's true, I like my own writing), but I don't work that well with deadlines unless they're self-inflicted, so I'm planning to write on my free time, as both a hobby and a career option, but without any pressure or external need to do it, and I'll manage the inn as a main source of income - also for fun. My hobbies include baking, interior design, and architecture, so I consider myself born for the job of managing an inn. It's an excuse to have a slightly-larger-than-normal, adorable home, in whatever architectural style I want. (I'm thinking cottage-y / Victorian / modern-but-chic. I'll figure that out.) I'm interested in this form of hospitality, because to me, social justice and intersectional feminism aren't just political concepts - they are what make up a kind, well-lived life. They are life itself. I want to spread the principles of intersectional feminism and kind equity without saying a word. I want to create a space for everyone, where everyone feels safe. Whether I actually train for my hobbies - architecture and design - and create the inn's plans myself, or hire an architect to work with me, I will be an integral part of its design - and I am disabled, which means that the building (and grounds) won't only be accessible. It will be designed with disabled people in mind, and their comfort as a standard. I want to make the space welcoming. I have an idea, where the only art I'll have hanging on the walls (minus wallpaper/decals) will be done by a friend. Someone I know, whose vibes are positive. This, of course, includes you, Ellie. Because I love your art. There will also be lots of plants. I'm very excited about owning an inn, in the future. I think it'll be great!

Z”ZMKF”: As a young disabled woman, which is more important for you - respect, or compassion?

ELEANOR: I feel that you cannot be respectful without compassion, and you cannot be compassionate without respect, at least at some level. So I'm not really sure that either are more important. What is important to me is that I live my life on my terms, and I do not live a life that does not include respectful and compassionate people. I've spent far too long denying myself of this, and making myself small and easy to walk over when I (literally) couldn't even stand up for myself. And I made a promise to myself that one day, I would find the strength to demand the compassion AND respect I deserve. Because yes, I do deserve those things.

How has your disability played a role in your activism, if any? Do you think your climate justice advocacy is impacted by your disability, or do you compartmentalize? And if you do feel they intersect, how?

Z “ZMKF”: So, my disability might be an entirely new thing - as my family and I learned from a recent doctor's appointment. I've always been an enigma, medically, hard to pin down. One of the symptoms of “whatever this is” is physical sensitivity - to noise (microphone feedback is hell), certain sensations (so is water in my ears), and hot and cold. Climate change doesn't just mean the world is going to get hotter (even thought it is, very much so) - it means more extreme, stranger weather as well. A few months ago, I recall, there was a thunderstorm here in L.A. - complete with lightning. And this year, and the last year around this time, the fire seasons in California were the worst they’ve ever been. I'm a very go-with-the-flow sort of person, but this change won't be good for me. It won't be good for anyone, least of all disabled people, and chronically ill people. It is essential that we either solve or adapt to climate change, for our health and our conscience. I'm already affected by the bad air quality in L.A. (not very much - knock on wood), and the hotter it gets each year, the less comfortable I'll be outside. I love being outside - the "outside world," though not quite the "natural world," feels healthier to me than indoors, even with all its variables. I think everything outside is beautiful, most of all the sky, on any day. I want to preserve the beauty. I'd hate not being able to go outside. So maybe, my climate justice advocacy intersects with my disability at the crossroads of self-care. But it's not all about self-preservation, for me. I care about animals, including humans, heck - I even care about plants. I view our world as a planet, not as a map of borders. I've read Peter Brannen's book, The Ends of The World (I highly recommend it), I've awoken to the arc of geologic time. I want humanity to become unbiased guards of Mother Nature, rather than her greatest threat. If we go off exploring our solar system + universe in search of other habitable planets, I'm a supportive space nerd, but I'll want us to go knowing we didn't wreck our first (and probably best) one.

Within your artistry, have you ever done (or thought of doing) character / landscape design? Or is illustration most comfortable for you?

ELEANOR: Definitely! With my art, and everything else in my life really, I am constantly pursuing ways to expand my knowledge. As far as art goes, I want to and will try everything, who knows, maybe I'll find something I love. And I think that's the very essence of art, the unwavering passion to keep doing it. Keep doing art, whatever the disciple. I haven't really done much character/landscape design but like I said, it's something I at least want to try more of.

What can we do to take action against climate change?

Z “ZMKF”: There’s a lot we can all do to take action against climate change, but it all boils down to “Stop human-caused greenhouse gas emissions.” Kind of obvious. The next question people usually ask, once given that simple answer, is, “Okay, and how the f*ck do we do that (without destroying the economy and/or our my whole life)?” Climate change is very overwhelming, and completely unthinkable on the scale that it is, but we have to think about it. Here are the most immediate (and easiest, relatively speaking) global-warming-fighting actions I can think of:

1. Volunteer with / follow / join one or more of the following organizations: Zero Hour, Earth Guardians, Pathway To Paris, Sierra Club - Zero Hour deserves a special mention here, because I’m a part of it! Maybe I’m a little biased, but they are definitely worth donating to, with money, time, love (technically unhelpful, but supportive), or resources. Zero Hour is almost comprised entirely of teenagers (or at least, people below 20), with a few adult mentors mixed in for sugar and spice. I joined recently, but the others, especially the core team, are accustomed to sacrificing childhoods and personal finances to save the world.

2. Don’t hurt yourself (or others), but be active, disruptive, loud, aware. Protest, write letters to organization leaders / government officials, get used to expressing yourself and sharing your ideas. If you are on the frontline of those affected by climate change (people in lower income situations, POC, disabled people, etc), use the fervor and pride within your self-love to take this threat head on. Hell, y’all can even contact me if you have an idea and a passion and you want to help “fix” the world.

The reason I’m not being very specific is, there are so many different ways to help. (Try Googling, or emailing your friends/coworkers, something useful will turn up!) I beg of you, find the way that works for you and just don’t stop. And if you feel climate change and protection of wildlife isn’t “your problem,” too bad! It is now! I am disabled, and queer, and my anti-global-warming fierceness spreads like a fire. Hence - I am The Fire. (There is a bit of a “flaming” theme in my climate change art.) Y’all can’t avoid me, so you might as well join me.

Are there any lessons you’ve learned as a chronically ill person - or, just as yourself - that you feel non-chronically ill people (or, just people who aren’t you) could also benefit from?

ELEANOR:: Something that I've learned through living with chronic illness for so long is the value in finding a way to embrace your life, even if it's hard. I never imagined that central lines and feeding tubes and hospitals would be my life. But it is, there's nothing I can do about it. For a while, all I would do was wish and wish and wish for all my illnesses to go away. But I realized that I was wasting precious time wishing when I should be living. There's lots of things I can't do, no amount of positive energy is going to change that. But I've decided that I will create a wonderful and fulfilling and joy-filled life as a disabled person. And it's not despite my disability, it is entirely because of my disability.

Are there any other areas of activism you're involved in or passionate about?

Z “ZMKF“: Not really. I guess I’m involved in disability rights + social activism, just by being alive in my body, and I have many passions/interests - biology, graphic design, illustration, and the obvious writing, to name a few - but activism is different than a passion, because activism is usually about making life better for a certain living species (usually humans, usually within “social justice”). Right now, I’m just concentrating on being myself and respecting all that I am, loving and supporting my friends, oh, and solving global warming.

You have a poetry book coming out, and I’m curious - what is your writing-to-editing-to-publishing process like? Where does a (albeit small) book’s-worth of inspiration come from?

ELEANOR: I think my process is definitely not the norm. "learning to breathe underwater" is the first time I've actually published anything, I didn't even post much poetry on my social media. This chapbook is a collection of poems, that I've written over about 3 years and deal with my experience with an abusive relationship and sexual assault and my recovery from that. When writing I never write for a book or an audience, I simply write for my heart. I did that for 3 years and thought I'd never share them, but about a year ago I hit a sort of rock bottom, and shortly thereafter, I decided it had to be time to break my silence. It was killing me. I was finally ready to take all the power back. Then the process was just choosing which poems to include, how many, in what order, and editing. This all happened pretty fast after I decided I was going to publish. I decided to self publish, so I could have entire control over this story, since it's such a personal one and because I want it out there now. I've announced the chapbook, and it's in the preorder stage and will be released on 12/13. You can but “learning to breathe underwater” here. I plan to continue to write and publish, drawing inspiration from all experiences.

Continue following me on instagram and twitter @elliewheels.

Check out Z and her initiatives, art, and life!
@ZMGFgram on instagram and @IAMZMKF
You can read her blog here, and check out her art and support her by buying it here.

What to Expect When This is Not What You Were Expecting

What to Expect When This is Not What You Were Expecting

In a month I am supposed to pack up my entire life and move it across the country. Alone. And I thought this would be the most exciting time in my life, I’d venture into the portal to hell that is Bed Bath & Beyond and pick out sheets and towels and shower shoes and coordinate with my roommate who is getting the fridge. Instead, we are choosing doctors and coordinating with home health and making plans for what to do if something goes wrong. Because something always goes wrong.