There is More Right With You Than Wrong
“As long as you are breathing there is more right with you than wrong with you, no matter what is wrong.” – Jon Kabat-Zinn
It was almost six years ago that I finally made my way through reading Full Catastrophe Living by Jon Kabat-Zinn. And this quote in the first part of the book shook me.
It shook me of course, because it was true. And I had taken to seeing my body as incredibly broken.
There are all sorts of ways that my body doesn’t work “correctly.” Some of which cause extreme impact on my life. It can be hard, frustrating, physically uncomfortable. And I spend a lot of time and energy managing the bits I have any control over in order to have the best quality of life I am able to access as a person who spends almost all their time in bed.
People ask me why I’m not depressed (luck of biology), or more angry, how I managed to have a well-adjusted attitude. I don’t know the full answer. But it’s surely in part encountering statements like this and letting them fully in that creates a path forward with more ease.
My parents moved out of my childhood home this past week. Well, sort of. They definitely moved out. That home was complicated for me, having been partially rebuilt 30 years ago after our house fire.
As my parents sifted through their lives there were the inevitable questions of what I might want. Yet as I reflected, many of the things I had fond memories of were from the pre-fire era. The first 18 years of my life.
I made choices. And took all the remaining items that had been mine, which I’m slowly sifting through as I have energy and help. Correspondence, photos, t-shirts, stuffed animals, baby teeth.
This morning my Thanksgiving cactus is blooming. It was my mom’s and she sent it with me many years ago at the end of a visit.
My gut is a mess right now, but I’m trying real food for breakfast, and I pulled out one of my parents’ dishes. I love them, and they are a relic of pre-fire times.
And I asked my mother to bring me a rock last month when they brought up a final round of boxes to me. Mica schist from the land. It’s currently on my dresser with a sweet bit of rose quartz.
It’s often hard when we make big transitions. I’m sad that I wasn’t able to go to say goodbye to the house or the land. I can’t travel anymore. But I’m hopeful that my parents will have more freedom and fewer responsibilities in this next chapter. And for that I’m grateful.
Coming Out and Disability
According to my Facebook memories I’ve never made a National Coming Out day post. Which surprises me.
I came out to my friends in 1992, and to my family in 1998. I’m queer.
It’s something I rarely have to think about anymore, and something I no longer really think about disclosing to people. Because I’m fortunate enough to live in a bubble in the world where no one assumes anything anymore. Being queer or gender non-conforming or having a non-traditional relationship style is pretty common in my friend circles, and something I often just don’t think to mention.
This is because of National Coming Out Day. The premise was right: That it’s important for folks to know the names and faces of those around them because it’s harder to hate and discriminate when you realize it’s someone you love. And for those of us for whom it has been safe enough to do so, I think it has changed hearts and minds. And I think it has created the world I live in today.
Having been part of that history, and knowing some of those who courageously went before me, and the ways the world has unfolded since, it has been full of change I couldn’t imagine. I like to ask friends questions like, “What’s the first big newsworthy event that you remember?” I like understanding their context in the world. And it’s made me think more about events that shape the world and our personal lens.
- I came out twenty four years after Troy Perry founded the Metropolitan Community Churches in 1968. (I later worked for them)
- Twenty three years after the Stonewall Riots in 1969. (I later lived in NYC and made my pilgrimage)
- Four years after the first National Coming Out Day in 1988.
- Before Ellen DeGeneres came out on TV and practically broke the broadcast world in 1997. (advertisers went berserk and there were boycotts)
- Before Matthew Shephard was murdered in 1998. (I sobbed)
- Before the Maryland sodomy law was voided in 1999. (I worked for the ACLU of Maryland at this time and they made it happen)
- Before Massachusetts legalized same sex marriage in 2004. (I had hope)
- Before the Supreme Court changed the law of the land in 2015. (I sobbed)
And of course there are so many, many more dates and names and courageous people. Those are just some that are touchstones for me.
I have friends here who came out long before me.
And perhaps someone reading this who has yet to come out, or may never choose to do so to others.
The identities you each carry matter to me, because it matters to me to know my friends and their hearts and what makes them joyful and connected. Because I want to know your pronouns so that I can know you and honor how you want to be known. So I can reflect you back to you. So that I can address your holiday cards to the right family. I’m glad when you tell me. But you never owe me, or anyone else.
I’ve reflected a lot over the last few years on how the coming out philosophy impacted me personally. And I’ve realized that it’s why I talk about disability. Because I think that knowing someone changes hearts and minds. And that knowledge is power. And I believe that every one of you who chooses to listen to the stories of people like me learns something, or relates to something, or learns a bit of compassion for someone else you know.
Because I think when you know that it affects someone you care about, you know that voting in favor of funding for home and community based services matters. That a living wage for home care workers matters. That increasing SSI to a living wage matters. That marriage shouldn’t put someone’s benefits at risk. That healthcare shouldn’t bankrupt anyone. That accessibility should be non-negotiable. That community care is essential. And this is how change comes about.
I don’t tell you every story of my illness or my struggles being a disabled human in this world. But the stories I tell you are true and representative. And I’ve heard from so many of you over the years that you hear me and that it matters.
We can build coalitions for justice and freedom and care. We can honor the bodies and hearts we each have. We can keep making the world safer for all of us. And it helps when we get to see who each other are.
People seem curious why I’m not more angry about the illnesses that ravage my body, erode my sense of trust and safety in myself, limit what I can do in the world. I don’t know the full answer. But I can tell you where a piece of that answer is: April 20, 1992.
Or maybe it was really April 22, walking slowly in confusion and wonder up the staircase of my childhood home, quietly, tentatively, several steps behind my parents. Looking in the dim light at the grungy, dark and torn walls and ceiling of our home. There were no lights, no electricity. Everything was muscle memory and flashlights and disorientation in this stairwell, normally so bright and spacious with its white walls and cathedral ceiling.
We were standing there, but it was gone. Our home.
Dark dots in rows across the walls, where hot nail heads burned through the spackle and paint. Light fixtures and a thermostat melted down the walls. A three foot hole eaten through my bedroom door. Water drenching my bed and floor. The smell of campfire and chemicals and damp.
For those of us with the privilege to be housed, it’s easy to take for granted. Especially when you’re a child and your needs for food and shelter are consistently met. When there were toys and modeling clay and music and books and clothes.
April 20, 1992. A month before my 18th birthday, my childhood abruptly ended. We were out of town, alerted by neighbors on a hotel voice message in Phoenix, Arizona. A dizzying surreal confusion of flight changes and waiting and cancelling plans, and trying to conjure into our minds any image that made sense of the state of our home. The sleeplessness. The travel. The holding of breath. The long pause before we were standing in that stairwell in silence.
The safety was gone. Gone too were parents who knew how to do everything and could protect me from the big threats in the world. Because they were now facing something inconceivable, too. At the same time.
We weren’t strangers to grief and death. Three of my four grandparents were buried by then, as were many other relatives, friends and pets. But regardless of how sad or untimely those deaths may have felt, they were expected in the unfolding of life.
This was different. It was sudden. Unexpected. Overwhelming. Ungrounding. No one we knew shared our experience. We were in uncharted territory, alone.
I had no more control over that fire that happened when we were 2,000 miles away on vacation than I did the onset and development of my illnesses. They aren’t things you can prepare for. They aren’t things you can solve or undo. They are things you find a way to navigate and survive.
We certainly didn’t fall prey to any toxic positivity 30 years ago, anymore than I do now with my body and health. But then, like now, there were so clearly things to be genuinely grateful for: We each had a week’s worth of clothes and toiletries. The dog was in the kennel. We had insurance. We had my brand new laptop. Those things were significant
We didn’t know what to do, but we had some starting places, and some people to help us. And the surprise of folks we expected to show up to support us who didn’t, and the gift of those who did. The aunt who helped us sift through the charred rubble of family heirlooms and office supplies piled in the yard, and brought us work clothes. The aunt who brought the picnic supplies, the paper towels, and the laundry detergent.
We had to reexamine every item in our lives as we completed an inventory. Consider what was lost and what could be saved. What was worth replacing and what we should just let go. To this day, my mother and I could still have conversations musing about whether some particular object “survived the fire.” We can’t always remember. It was so much all at once. And so long ago now. We have rebuilt ourselves many times over.
We moved around from hotel to residence inn to furnished apartment, looking for places to land for the in-between time. A time that had no known end.
We had our dog, Ada. She adapted. She loved us just the same, a steady distracting presence.
We had rites of passage to navigate, including my 18th birthday, senior prom, high school graduation, and tonsillectomy.
Eventually I was launched from the in-between, leaving for college from an apartment building where I had no memories and had never met the neighbors. My parents worked with contractors to rebuild the structure of their house. I was hundreds of miles away, learning how to use a Vax email system, a meal card, and draw “the best shoe you can.”
I returned “home” to visit, to a house rebuilt where nothing was the same. And neither was I. By that fall I had experienced my first major Epstein Barr reactivation, which doctors didn’t even know was a thing back then. The health center said it wasn’t possible to have mono again, it was just a “mono-like illness.” And I had taken an incomplete for my first semester. I spent two months in a push-crash cycle trying to finish my 8 credit Freshman Foundations course, some of it from my parent’s basement.
That place never exactly felt like home again to me. It has familiarities and holds memories. But also so many things that have no connection to me. My parents rebuilt their lives there, redecorated. The brown Naugahyde couch replaced with cabbage roses. The pale sage carpet much harder to clean than the old forest green. Skylights installed. The kitchen entirely re-envisioned. Dining room furniture that was a really neat idea and a mistake none of us will ever make again.
But I didn’t. I found ways to move on, ungrounded, always looking for a place to land. The almost six years I’ve lived in my current apartment is my record for longest occupancy since then. 23 homes in 30 years.
In this place, I picked the color of the walls and chose the furniture. (And bought the renter’s insurance.) I’ve redesigned and rearranged as my health and support needs change. I have a bunch of my childhood things that were in storage during the fire. And a bunch of hazy memories of things that may or may not still exist. I have a few weeks worth of clothes in a new, larger size after I gained weight from a health crisis. Toiletries that I’m pretty sure don’t make me sick. I have my laptop. My Sadie cat and my Marigold dog. Folks who didn’t show up, and an abundance of folks who did.
A few years ago I was struggling with accepting the rapidly escalating severity of my limitations. I was reading Buddhist wisdom and advice from therapists. And it occurred to me that home has to be in me. In this body. This consciousness. That finding that sense of home in myself was what would help me find the stillness in the eye of the storm. That the search for the anchor wasn’t going to resolve out there, but in here. And every night before sleep, I sit, eyes closed, soundscape by a softly snoring dog. Tonight I will tick off my 1,563rd consecutive day of meditation, of finding a different sense of home, 30 years later.
Trust Us To Be Reliable Narrators
hot tip: if you somebody you care about shares their access needs with you and you don't understand why exactly they are needed, that's ok!
you can just believe that they are telling you the truth about their body's needs without trying to convince them they're unnecessary.
— Brianne Benness (@bennessb) June 9, 2021
I so often love Brianne’s comments, questions, perspectives. And this one is particularly important. When my people *understand* what’s going on with me, that’s great! I feel seen, cared for, appreciative that they’ve taken the time to learn. But do you know what’s even more awesome? Having folks in my life who believe I’m a reliable narrator of my own story of existing in my own body.
One of the things I’m most grateful for, is that I’ve cultivated relationships with folks who just take me at my word about my needs, boundaries, limitations. It is exhausting to have to explain or justify things to get access or accommodation.
I have an assistant, A, who knows me well. She’s been in my house five or more days a week for 8 months. Does she know what my body is doing at any point, and the underpinning dynamics of my illnesses? Some. And that’s helpful. But she really knows what I can and can’t do.
In late April, I went to an eye appointment. It was the first time I went to a medical appointment outside my home since October 2019. I started with contacting the doctor’s office with access questions. They were helpful (and also wrong), and didn’t ask questions about why. That was a good start.
I made the decision before booking the appointment that my assistant would come with me. I’d never done that before, and I was hopeful that it would make a big difference. In part, because I didn’t know if I could trust the person I corresponded with. In part, because many times that I leave my home, something stressful impacts my experience. And I knew I could trust A to deal with it for me.
We ordered attendant handles for my power wheelchair so that she could push me back while my eyes were dilated. I prepped for the appointment itself with my usual documents (meds lists, my appointment notes, stats from my data tracking). I made a list of everything I needed to take with me. I asked A to help prep ahead of time. And because she has access intimacy with me, she knew what and why. But all that was really necessary was just the belief.
She walked alongside my chair on the way there. Navigated all the inaccessible entrance issues, checked that I had what I needed, offered to stay or come back, negotiated how she’d know when to return, texted me to check in toward the end of my appointment, pushed me home while checking in about speed, When we got home, she made sure I had what I needed, and that a dinner plan was in motion. Despite the challenges, I did OK, with planning, and with a good assistant.
Recently, I had the opportunity to attend a social event at a home I didn’t know. In the end, I couldn’t go due to the heat. But I planned nonetheless. I asked the host if she could give me a quick video tour of the space in advance, so I knew how to prepare, and what would be manageable. She simply set yes, let me know when she could do that, and did so. It was so helpful! The space wouldn’t be that great for me, but with information, I could figure out how to best make it work, and decide what equipment I needed.
I also needed an escort to take me, which was really cemented in my mind after the eye appointment. I have friends who have done this before, but this time it was appropriate to approach someone new. While we didn’t finish all our negotiations before I realized the weather would prevent me from attending, we started that discussion. Right from the beginning I said, I’ll need you to drive, to get my chair in and out of the car, help carry things, stay for the event, get up and fetch things like food and beverages while I’m there, bring me home whenever I decide I want to leave. I clearly stated my needs, L agreed to them with no hesitancy, and we can trust each other for clear communication.
I hear a lot of folks in the chronic illness community complain about the dynamics Brianne mentions. It makes me concerned for the state of their relationships, and the state of their boundaries. I think there are things we can do to help. And of course, the burden is also on others to respond appropriately.
I recently read Nedra Tawwab’s new book, Set Boundaries, Find Peace, and it was fantastic. One quote that really struck me as an essential truth:
Creating healthy boundaries leads to feeling safe, loved, calm, and respected. They are an indication of how you allow people to show up for you and how you show up for others.
One thing that she discusses is the need to get used to setting boundaries with clear statements, and *not* following up with long explanations. We don’t need explanations for folks to respect our needs.
Don’t Say Too Much Stay away from telling people the who, what, when, where, and how of your boundary. Sure, you can answer one or two questions at the most, but be intentional and succinct when you respond. Remember, people may be trying to figure out a way to change your mind. Try to stick to the original statement as much as possible.
The more we can do this, the more we can communicate that our needs aren’t up for negotiation.
Build relationships with folks who trust you to be a reliable narrator. Set boundaries when folks challenge your needs. If they can’t meet your needs find folks who can. While this is much more complex to do then it is to say, it has made an incredible impact in my life to learn to do this.
Practice, Not Perfect
Meditation is saving my brain and my heart.
I don’t remember when I first learned to meditate. I remember being required to sit every day for a period of three months back in about 2004. So it was before that. And I used to have a relatively consistent practice. But it waned as life changed.
In 2017, I picked it back up again with a reading of Jon Kabat-Zinn‘s book Full Catastrophe Living. His book is essentially a written version and companion to the 8 week mindfulness classes he developed that are taught around the US.
At the time, I was struggling to be able to focus enough for meditation. Some days I was simply too tired. And for whatever reason, I have a difficult time meditating in positions that aren’t seated, and I was also too tired to sit.
But I persisted, doing a few days at a time, then taking a break.
In January 2018, I decided it was time to recommit to a daily practice, and I did. 2018 is also the year I started to understand how pacing works for my body, which also gave me a bit more stamina. This week, I’m at a three year long streak, and haven’t missed a day.
I will, at some point. And I will start over. But for now, I haven’t.
It feels amazing to be so sick, yet to have stuck with and prioritized something like this. Some days it’s only 3 minutes. That’s OK. That’s what acceptance of my body and reality is. It is still and intentional time of pause, presence and reset.
I learned to meditate without guided practice. So while I do them occasionally, they aren’t a big part of my practice. I usually just sit in silence.
I don’t do timed meditations, because that pressure doesn’t work for my body and reality.
I just pick up my phone, go to the Calm app, turn on my open-ended meditation session, and go. I sit until it’s uncomfortable. Then I take a breath and decide if it’s a good time to push through, or a good time to stop. And I stop when it’s enough. In 2020, That averaged at about 11 minutes a day.
Often, I’m just reminding myself what it is to be present. Sometimes I need to notice how I’m feeling in my body. Sometimes I need to notice how my feelings are. Sometimes I just enjoy the quiet.
I don’t work with a teacher, although I have been profoundly influenced by Tara Brach. Her book Radical Acceptance is was the most helpful book for me in terms of finding acceptance about the state of my body. Her take on the meditation practice RAIN (Recognize, Allow, Investigate, Nurture) has been incredibly helpful for me when I’m having stress or big feelings. I occasionally tune into her live online sessions on Wednesday evenings for a guided meditation and dharma talk.
What I do, is show up. For myself. Every day. And practice.
The Post Office: Power, Responsibility and Access
I’ve seen two flavors of memes going around lately, and they are both problematic.
One directs folks to buy stamps in order to generate income for the post office. The other directs people to do things to vote that don’t depend on our rapidly drowning postal system. Both of these actually scapegoat us into believing we are powerless to deal with the real problem. Don’t fall for it.
The plea to buy stamps saddles the average consumer with the responsibility to save the postal service, much the same way we’ve tried to place responsibility for saving the environment on the consumer. Corporations and policies are much larger contributors to our environmental devastation than whether I buy single serving cheese in plastic, or you use a straw. In both cases, the primary responsibility lies further up the power structure. We are not actually powerless in demanding that change, but we have to do it.
We have to do it because the mail is critical national infrastructure. Because key programs and services still operate by mail (it is the only way Social Security will contact you). Because millions of Americans depend on the mail to get their medications. Because disabled folks rely on the mail for the majority of purchases they make. For me in just the last few months, that included nitrile gloves for my aide, hand sanitizer for all my helpers, a gallon of unscented hand soap, supplements, medications, printer ink cartridges, my heart rate monitor, pulse oximeter, pet food, clothes, greeting cards, and food.
You buying a sheet of stamps will not guarantee access to these things. It will not change the bizarre retirement funding requirement for the postal service. It won’t reinstall mailboxes or mail sorting machines. It will not change USPS policy. It will not remove corrupt power (if that is, in fact, a factor). It shouldn’t make you feel better.
We must direct our concerns and demands to the people can who make the real changes.
Contact the lawmakers who are elected to represent you! Demand that they act. Flood their offices, phone lines, emails.
Representative Carolyn Maloney, the Chairwoman of the House Committee on Oversight Reform, has introduced the “Delivering for America” Act. Contact your representative and ask them support it. If you don’t know who your congressperson is, find out! Then start getting to know them. Follow them on Twitter. Sign up for their emails. Contact them when you believe there is something that deserves their attention. If all that feels like too much, do the easiest thing I know, and connect your phone or your Twitter account to Resistbot.
Massachusetts Senator Elizabeth Warren has asked the United States Postal Service inspector general to launch an investigation into the changes in operations. That investigation is now in process.
Investigation, legislation, policy, removing people from positions – those are the kinds of thing that will make changes in the effectiveness of the USPS. We need to be demanding that.
Directing people to find other ways to vote is a tactic for folks with privilege to take care of themselves. And because they are taking care of themselves, allows them to look away from all the things that are making voting hard for others, or at least absolve themselves. After all, they did their part, right?
We must do everything we can to ensure that the greatest number of citizens possible have easy access to voting.
Lots of things make this hard for people. Closing of polling locations. Limited poll hours. Barriers to accessing absentee ballots. Criminal records from a biased law enforcement system. Voter ID requirements. Lack of transportation. Inaccessible polling places. There are so many gaps that need to be addressed.
We cannot allow unreliability of the postal service to add to this.
Lots of people vote by mail. We know many of our elected officials vote by mail. There are states where this is the way it is done for everyone, like Oregon. Folks who are away from their primary residence on election day. Think everyone’s home now? How about medical staff who are travelling for work? Folks who had to stay where they were when shelter in place orders and travel restrictions were put into place. Military personnel and their families who are stationed elsewhere. We keep saying we want young adults to pay attention and engage? Some of those folks are having to make decisions to go back to out of state colleges. And lots of disabled people, myself included, are absentee voters who vote through the mail. When so many hot issues directly affect us right now – health care, social security, violence against disabled BIPOC folks – it is absolutely unacceptable to silence our voices even further.
Saying, “Oh, just take your ballot to the board of elections” ignores all these other factors. Is that a good solution for you? Fine. Do it. Your vote matters and I want it counted. But we need to collectively make the systems work for everyone. I need you to be equally invested in my vote too. And not just my vote, the votes of my friends.
If we don’t demand it, who will?