Bittersweet

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.


Photo of a Thanksgiving cactus with red blooms nestled among an aloe plant, a monstera, and a conch shell.

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.

Photo of friends eggs and roasted potatoes on a dark brown and green Madeira dinner plate with a stylized floral pattern from Franciscan from circa 1972.

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.

A piece of mica schist rock with sparkly silver flecks. It’s sitting atop a crocheted blanket in bite, orange, red and cream variegated yarn.

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.

Bittersweet.

Coming Out and Disability

Keith Haring National Coming Out Day poster
An image of the original 1998 National Coming Out day poster by Keith Haring. A yellow abstracted figure dances through an orange doorway into a pink and green room.

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.

30 Years

Interior house photo after a fire
A black and white photo I took with a manual SLR camera and developed in my high school darkroom. The shot is from my parents’ front hallway, looking up at a fire ravaged cathedral ceiling. Black circles dot the walls at regular intervals. A light and a wall-mounted intercom are somewhat melted down the walls.

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

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

Illustration of a woman in seated meditation
An illustration of a white woman wearing a burgundy shirt and black shorts in seated mediation on a burgundy rug. The background is a glowing blue, with white ambient light.

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

Image of USPS love stamp
Graphic of USPS love stamp. It has 12 hearts in magenta, purple and gold, and says love in magenta cursive at the bottom.

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?

Wrong.

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?

 

 

Bed-tethered Lifehacks: May 2020 Update

I love seeing how other people organize things and solve problems. Those what’s in your bag posts? Love them. For bedbound folks, the question is usually, what’s next to your bed? We want to know how folks set up their space for maximum efficiency, and find ideas we can steal for ourselves. I did a post about this last year, and showed how my bedroom was set up then. But I’ve continued to iterate, and thought it was time for a new post. It’s long. The show and tell of what is directly next to my bed is at the bottom.

I have included some links to some products, only in anticipation that some folks might ask. I have no promotional agreements.

Photo of hallway and entry to Rebecca's bedroom
Photo of hallway and entry to Rebecca’s bedroom. The hallway is orange, with visible natural woodwork. The bedroom is red. The bedroom door has greeting card displayed on it.

There are a couple of things to know from the outset:

I wasn’t bedbound when I moved into my home. I would have looked for a different kind of bedroom if I had been. I have not moved my bed to a living room or dining room, because my current bedroom proximity is only 10 steps to the bathroom and the kitchen, and that makes the most sense.

I do have a roommate now, and but lived alone for the five years prior. While she is a lovely human being, our arrangement is that she is a roommate, not that she has helper responsibilities. I have pet care helpers morning and evening. And I’m supposed to have a personal care aide most afternoons, but that situation waxes and wanes. This setup is to support me being alone and self-sufficient the majority of the time.

I spend almost all of my time in bed, but I can get up to use the bathroom and grab things from the kitchen. I try my best to minimize how often I get up, but I can still get up.

I use Google Home to control some of the electric devices in my home. I can do this with voice commands or through the app on my phone. I’m generally comfortable with technology and innovation.


Hallway

Let’s start at the very beginning, as it were: the hall outside my bedroom door. The wooden stool (From a rummage sale) faces my roommate’s bedroom. I can sit down while talking with her. The black drawers are a Hemnes chest from IKEA I’ve had for about six years. The drawers themselves hold all my extra or infrequently used medicines, supplements, first aid, heatable pillows, etc.

On top of the chest is a small desk lamp. The lamp has a wifi multi-color LED light bulb. I can control this light from my phone as part of my smart home system. I currently us it as an alert light; when it is on and red, my roommate knows I’m asleep.

Photo of the door to Rebecca's bedroom
Photo of the door to Rebecca’s bedroom/ There are three rows of greeting cards, hung under a bunting that reads “joy.”l it on my phone from anywhere. I currently use it as an alert light; when is it turned on and red, my roommate knows I’m asleep. 

In front of the door is a heavy velvet curtain hanging on a tension rod. It provides privacy, but also helps with regulating the temperature in my room, especially when I’m running an air conditioner.  I have a door, but I don’t use it very often. That was my animals can come and go as they please.

My door itself, serves as a gallery for greeting cards. I have a number of folks with whom I exchange mail, and they send some really great things! Funny, heartwarming, encouraging, handmade.  It’s just some hemp twine tacked into the door, with mini wooden clothespins on the line to hold the cards. The bunting over the cards reads “joy,” and was made by mother. Since my door is usually open, I can see this from bed.


Food/Beverages/Medicine/etc.

Right inside my door is my food/beverage/medicine station housed in a Billy bookcase from IKEA. It is about three steps from my bed. The bottom holds spare medical supplies, cleaning supplies, and large supplement containers. The middles shelf holds supplements and medications.

I fill my pill boxes two weeks at a time, The white plastic bins hold all my current bottles that I use to fill the pill boxes, as well as the strips for next week (or last week). To the right is a basket full of little vials. A friends helps me out by pre-measuring the fiber supplement I take, and the D-Ribose I use into empty prescription bottles and plastic vials. We store the filled ones in this basket, and the empties in the one to the right of it.  Finally, there is a plastic container that I put small food-related trash in until it gets to the kitchen for emptying.

The top shelf holds food related things. The basket on the left has disposable bowls, plates, hot cups, paper towels and fabric napkins. The basket next to that holds extras of frequently used snacks, like nuts and rice cakes. In infrequently used hot beverages. There’s some oatmeal over there too.

Photo of a black bookcase full of baskets and boxes
Photo of a black bookcase full of baskets and boxes. A water pitcher and an orange electric kettle sit on top.

On top of the bookcase is a bowl with shelf-stable half and half, tea, and containers of instant decaf coffee. Some plastic spoons that I reuse.

I keep an orange electric kettle. This kettle has a simple toggle on/off switch, making it possible to use it in combination with a smart plug. The default state is to have the smart plug turned off, cutting the power, while the kettle power switch is turned on. When I wan to make a hot beverage, I simply tell Google to turn the kettle on. This way, everything is ready to go by the time I stand up.  I can stand up, walk three steps, make a cup of coffee, and sit right back down. While I’m doing so, I just tell Google to turn the kettle back off, and I turn the switch on the kettle back on when I’m done with it. Then it’s ready to go for the next time.

There’s a beautiful glass pitcher that I refill with water every night. That way I have water nearby to refill the kettle, a water bottle, or the humidifier. And every serious spoonie needs a stuffed sloth mascot overseeing things.

On the floor to the left is a humidifier. I run it all the time in the winter when the heat is running. It has over a gallon capacity, and can be refilled simply by taking the lid off. It does not need to be picked up.


The view from bed

I have a large-ish upholstered chair that I love. It is sized so that I can sit in it comfortably while cross-legged. I have a footstool of sorts in front of it, but it not really a footstool. It is a step stool that can be pulled out for use. And on top of it is a meditation cushion.  Both this and the chair double as places that guests can sit when the come to visit.

Photo of Rebecca's room, featuring a black dresser with a large TV.
Photo of Rebecca’s room, featuring a black dresser with a large TV. An upholstered chair is to the right. Marigold, a dog who looks a lot like a golden retriever, lies on the floor looking at the camera.

The floor lamp in this corner is also controlled by Google Home.

My dresser (a Hemnes dresser from IKEA) is the primary surface in my room for displaying things. I have a 43″ television, which is also part of my Google Home setup, has Android TV and Google Chrome installed. I can cast things to it from my phone, tablet, computers, which means that in addition to TV and movies, I can cast say, a concert happening on Instagram Live. There is a wooden sign inspired by one of Glennon Doyle’s favorite sayings, “we can do hard things.” I have a digital clock here so that I never have to move to know what time it is. A snake plant that needs hardly any light, Some statues, figurines, rocks, etc that have meaning to me. The flowers are all from local gardens, and I get them as often as I can afford, or as friends bring them from their gardens.

Marigold dog rarely poses for photos, so this was surprising. She does, however, spend the majority of her time in here with me.

Photo of a tall black bookcase, filled with books, sweaters and yarn.
Photo of a tall black bookcase, filled with books, sweaters and yarn. The foot of the bed is to the left, A black dresser is to the right.

There’s a fairly large closet next to my dresser where I keep all the shoes I never wear, and the piles of laundry. Not interesting. 😉

There is a tall IKEA Billy bookcase about two feet from the end of my bed. This holds lots of things I don’t need daily, but use frequently. My real camera. Sweaters. Yarn for crocheting. Office supplies, blank greeting cards and stamps. Books I want to reference or hope to read soon. Cookbooks for when I have aide care. File boxes to hold the unending paperwork involved in health care and benefits.

This window is my only window. It faces my neighbor’s siding, which is about six feet away. I have blinds, so I can control a lot about the light and the ventilation.  In the spring and fall, I can put a window fan in. I am very sensitive to heat, and use an air conditioner in the summer. I don’t use a window unit. I have a portable unit on wheels. It is much easier to take the hose vent and plate in and out of the window frame. I can open the window from the bottom, put the fan in or take it out, put the A/C in or take it out, all pretty easily. I have a friend who takes it up and down the stairs for me so I can keep it in the basement in the off-season. I mentioned the curtain in my door above, and that really helps keep the cold air in.

At the end of the bed is an old, very solid trunk. It stores spare blankets. But it also serves as a step for Marigold so that it’s easier for her to jump up onto my bed.


The bed

The bed, of course, is where I spend all my time. It’s a queen size Kvalfjord from IKEA that I purchased in 2019. It has a very solid velvet-covered headboard, and storage space underneath. I use the under bed space to store long, plastic under bed boxes of all my sheets and bed covers. They are easy to grab out, and easy to push in enough that I can use my overbed table if I want to.

I have deliberately chosen not to get a hospital bed, but rather to add accessories for positional support. I have two substantial bed wedges that I lie on all the time. I have a sheepskin from a regional farm on top of my fitted sheet, and a pillow i keep under or between my knees. I have plenty of space for the dog and cat.

I eat all my meals in bed on a wooden tray. I carry it back and forth to the kitchen twice a day. It has sides that are just tall enough to keep anything from sliding off. It’s a little heavy, which makes it easier to balance in bed. Using the tray also helps contain some of the crumbs and things.


Bedside Storage

Storage within arms reach is a primary challenge for most bedbound folks. And I have a pretty limited amount of space in which this can happen. You may notice that my bed is recessed into a set back section of wall. there is only about 13″ between my bed and the wall, and only on one side. So I’ve tried to make the most of it.

Photo of Rebecca's bed and various carts to the left.
Photo of Rebecca’s bed from the foot of the bed looking up to the gray velvet headboard. A variety of carts to the left of the frame. The sheets and walls are intense, warm colors.

Directly next to my bed is an old metal cart I found for free on the side of the road. My trash can is stored inside it on the lowest shelf. The other shelf holds a box with all my face wipes and moisturizers, nail clippers, and makeup. I also have a lighted mirror that I can recharge with a USB cable.

The surfaces of the cart is limited, so very strategic choices: My sun simulator alarm clock is never used as an alarm anymore, but a dimmable lamp and a clock. An old letter sorter holds my paper planner, important papers, note paper, pens, pencil, scissors, current use crochet hooks, tablet and the remotes. They all have their own slot and I cannot lose them. A glass dish holds my favorite lip balm, lipstick, nail polish, etc. A tiny little ceramic pinch pot I made as a child holds the earplugs I’m using in a give week.  portable thermometer shows the room temperature. My Google Home mini speaker is right next to my bed. There is enough room for a mug, my phone, and my watch. The charging cords for my USB devices are wrapped around the corner post of the cart so that I can’t lose them and can always reach them. My primary Power strip is directly below the cart.


There is also a three tiered set of wire baskets. it was designed to be hung on the wall, and I previously used it to hold gloves and hats at my back door. But the bottom is flat, and it uses vertical space, so it works well here.

The bottom basket holds moisturizer, nail file, microfiber cloth, eye mask, hand sanitizer, fresh ear plugs.

The middle basket has tissues, makeup brushes, hair brushes and combs, baby podwer, dry shampoo, a spray bottle of water.

The top basket has some medical supplies, baby wipes, and pet supplies – like brushes and calming chews.

A few things are hung off the sides – like a tape roller, my masks ( I wear them during the COVID pandemic whenever others are in my home), a medic alert button, my favorite tapestry needle.

The little wall to the side of my nightstand has a Command Hook mounted to hang my ear defenders. The ones I bought also have Bluetooth so I can use them as headphones when watching TV or listening to music. And a few notes to myself as daily reminders.

Photo from Rebecca's bed, looking to the right.
Photo from Rebecca’s bed, looking to the right. It shows a close up view of her carts and nightstand.


About 15″ from my bed is a 20 x 20″ set of drawers on wheels. This is an elfa storage unit from the Container Store that was originally part of my organizing solution for my art studio. I have a second one that is is my current creation space, and can be wheeled in an out if I want to use it in here. But this unit is here all the time. I *love* how customizable these units are. You can choose size, height, how deep the drawers are, etc.

The surface fills up, then gets cleared, rinse, repeat. It’s usually where people put my mail when they bring it in for me. There is a desk lamp on top  pointed at the ceiling. My room is quite dark much of the time, and I use this when I’m on video calls so that folks can actually see my face. There’s usually a dish for teabags, used spoons, etc. here as well

I use the top drawer for my laptops (I can keep them plugged in this way), my journals, a back up charging brick, my headphones for my phone/tablet, and a bin of paint markers.

The next three drawers are deeper. One holds miscellaneous things I want nearby. The bag I grab if I’m going to leave the house, with my wallet and keys and such. Paperwork I’m currently dealing with. Books I might be reading. a box of earplugs. An extra face mask. I use two of them to hold all my current crochet projects, and my cases of hooks, needles, stitch markers, etc.


Next to the white drawers is a teal cart, one of the ones that every artist on Instagram seems to have purchased from IKEA, myself included. And in fact, it was originally in my painting studio. This cart is on the kind of wheels used for rollerblades. It is incredible easy to move. It often sits in the narrow space between my bed and the white drawers. I use this cart constantly. It holds all my current pill organizers and bottles of meds and supplements, electrolytes, salt, pain relievers, etc.. My toothbrush, toothpaste, and a spit jar with a lid. A little dish I can put my meds into when I take them. A fabric napkin. Current containers of snacks, so that I never have to get up to get some calories. My water bottles and a ceramic tumbler. I use the bottom of the cart to hold recycling, and empty it out whenever the household recycling is going out.


I do have an over the bed hospital type table. I don’t use it nearly as often as others do. I use it for projects, especially for batches of paperwork, or for painting. I often keep it on the other side of my room out of my usual walking path. But during the pandemic it has served an additional purpose, as a coffee delivery system. I have lot of friends who volunteer to help me out with pet care, and who ever has the morning shift is also in charge of making and bringing me coffee. It’s a good reminder that we’re trying to stay 6′ apart. Folks can just reach into my room and put my coffee on the end of the table, then I can just pull the table over to me to grab the coffee.

Photo from Rebecca's bed, looking across the room.
Photo from Rebecca’s bed, looking across the room. Visible are a tray with dishes, the black dresser, TV, upholstered chair.


There you have it! I think. I think I covered most of it. Hopefully this can give you some ideas of things that might work for you. This is just what I’ve iterated too at this point. I’m sure it will continue to change.

I’d love to hear what things have been particularly helpful for you.

Some Coping Approaches for COVID-19

I know folks are feeling scared and overwhelmed with the prospect of social distancing, isolation, possibly even quarantine. Here’s a missive from someone who has experience being housebound. I’ve been mostly housebound since sometime in 2017. As of this writing, I have not left my home at all since October 2019. I need help with the functions of daily living, and have had a personal care aide since February 2019. I get by with the help of friends. It’s OK. I’m OK. But being OK with it didn’t happen overnight. I’m hoping that some words of wisdom from experience might help soothe your soul just a little.

Feelings

Let’s start with feelings.

It’s OK if you feel trapped in your home. If you’re mad that the game was cancelled. If you’re upset that some stupid virus is running all your plans. If you wanted to visit your father, but it’s not safe. If you’re scared. It’s OK if you desperately want to control your situation, and that of people who you love. Its OK if you like being at home and escaping the rest of the world. Its OK if your introverted self sighs a big sigh of relief.

So much of who we are can be wrapped up in our obligations, our activities, roles, identities, that stepping out of them can be uncomfortable, even anxiety producing. There can be very real sadness, disappointment, grief, when we can’t do things we were looking forward to, like a concert, movie, trip. And a whole different kind of distress when we can’t participate in milestone moments for our loved ones, like funerals. Some of you are going to miss graduations, Mother’s Day celebrations, birthday celebrations, weddings. It’s going to be hard.

All your feelings are valid. And the more you pay attention to them, say hi, feel them, name them, and move toward some imperfect acceptance of them, the easier everything is going to be. I promise. Also, I’m not saying its going to be easy.

It stinks.

Also, we can do hard things.

Photo of a dresser-scape, including a sign that reads "we can do hard things."
Photo of a dresser-scape, including a sign that reads “we can do hard things.” Also in the frame are a TV, a snake plant, a large painting of a woman holding an anatomical heart, and a wooden chest displaying special objects.

Humanity and Vulnerability

The next thing we can do is remember that we are human. And that part of what’s happening right now, our move toward social distancing, might feel like it flies in the face of our humanity. We were meant to connect, to hug, to play sports, to go to concerts. And we’re not doing that right now. It feels uncomfortable.

But we’re doing something else that is very human, which is taking care of ourselves, our loved ones and our communities. Nesting.  Pulling our loved ones close. It just might look different than how were using to doing it. And that can feel vulnerable.

Here’s the thing. We are all vulnerable.

On many different fronts, all the time, even if we spend our days pretending otherwise and putting on a mask (literal or figurative). We are. We’re vulnerable to heartbreak, to loneliness, to loss, to joy, to being tickled, to love. And every one of us is vulnerable to getting sick. And while we can, and should, take precautions, we can’t control if we get sick. Just ask the millions of folks with cancer, with chronic illnesses, with congenital conditions.

We can’t control it.

And if we become ill, it isn’t our fault.

So maybe you’re isolating because you don’t want to get sick, or further compromised conditions you already have. Maybe you’re protecting others. Maybe you are sick and you need to quarantine. You can do this.

We don’t need to do it alone.

Most of us already know something about staying connected to folks we are physically apart from. We have more communication tools than ever. Social media. Texting. Messaging. Email. Mail. Video calls. Stay connected to folks you care about, even if you haven’t been in touch for a while. It’s OK to break the ice with a text that says, “Hey. I know it been a while. But I wanted you to know I’m thinking about you.” It’s OK if they think you’re a weirdo popping up out of nowhere. But they also probably won’t.

In my experience, community and support can come from unexpected places. When I became much more seriously ill, some of my regular friends just kept on keeping on right next to me. Some stepped up in big ways. Some close friends totally ghosted me and disappeared. Some old friendships were rekindled. And amazingly, some new relationships began.

Take Stock

So great. We have some feelings and we are staying in touch with our people. But there are so many practical things to manage! Figure out your tools. Slow down and make a list. I like to go back and asterisk the ones that are actually critically important. But everything is important! Maybe. But sometimes things just can’t get done. Focus your energy and resources on what matters most, and what needs to be done first. I never asterisk more than five things. I’ve even written lists of things I am not going to do! Liberating.

Don’t reinvent your organizational systems, unless you have none at all. Then, do the most simple thing possible and make a list in the place you are absolutely most likely to find it when you need to add to it, and find it when you need to reference it. This is likely your phone or a notebook.

Come back to this again when things change, or any time you start to feel overwhelmed. Sometimes just getting it out of your head is really helpful.

Needing Help

Here’s where you start: figure out what you need. Sometimes this is hard. We just feel icky. Or panicked. Afraid. Overwhelmed. Take a few deep breaths and notice how you feel. Then see if you can find the answer. Maybe you need to write. Maybe you need to talk it out with a friend.

Sometimes the is obvious. You need milk. But you can get even more precise, like I need a gallon of either 1 or 2% milk by 10 am Thursday so I can take my pills.

Next, figure out if it is something you have the power to take care of yourself, or if help would be a good thing.

We might need help. Dammit.

What?! I’m independent! I take care of myself. I don’t want to be a burden to anyone else. They have their own things to deal with. They probably don’t want to help me anyway. What if they say no?

Be willing to ask for what you need. This is super hard for a lot of people, and it goes against the grain of our over culture. But it’s exactly what is necessary in community. And most of us say it’s what we want others to do. We want them to ask us. So if we’re the ones in need, our job is to ask them.

Community and Mutual Aid

Identify who you could ask for things. Some folks start here with the answer of “no one.” While I believe this answer can be true, I also believe that it is very rare that it is true. Think expansively. This is the time for the wild brainstorm. The list of everyone you know who isn’t a jerk. Even if it makes you uncomfortable. Once you have that list, you might want to start thinking about ways those different people could help. Over on my Chronically Ill Viral Preparedness page I link to a great little document called Podmapping for Mutual Aid by Rebel Sidney Black.

I have an incredible network of support, and I know I can just throw out something (I need someone to take a package to the post office for me by Friday) and someone will raise their hand. But I also know more specific things about some folks that can make it easier to target my requests to the right place. Like, several folks I know go to the grocery store 3-5 times a week. Those are the folks who can keep an eye out for the specific items I need that are getting hard to find. They might do better than my regular grocery shopper.

I also know who I can turn to for emotional support, and that I can ask for what I need there. I know who I can text and say, hey, I’m having a hard time. Do you have time to connect on the phone for 15 minutes and just listen?

A couple of years ago, a friend shared a poem with my that was written by Tad Hargrave. It really helped my shift my thinking:

how do you create community?

how do you create community?
i do not know
a hundred ways
a thousand ways
but
how do you kill community?
I can tell you one
sure to do the job.

be self-sufficient.

always have enough
always have it together
always be a giver
always have all the tools you need
never need to borrow a sewing needle
never need a cup of sugar
never tell anyone you’re breaking down
never need anyone

your pride
your insistence on competency
your unwillingness to be a burden
on us
when it is the proper time for you to collapse
may be the end of us all
knowing what time it truly is
or knowing how to know the time at all

you
needing our help
being unable to continue without it
you
not knowing
how to do everything
creates the occasion
for the village to reconstitute itself
and know itself again

Tad Hargrave

 

And let’s talk a minute about need. Need is not a magic threshold you have to hit before you’re so desperate that you have no choice but to ask. Try to set that bar closer to when you have a longing. A sense of something. A realization. When you start to worry just a little. This is not an exercise in stoicism. A major form of self-care is not practicing stoicism.

Helping Others

If you looked over that podmapping exercise, you would notice that it isn’t just about who can help you. It’s also who you can help and how. Do something for someone else. Are the stores out of toilet paper, but you maybe went a little overboard on preparing? See who you know why needs a few extra rolls. Are you coping by baking, and aren’t sick yourself? Offer some of those baked goods to a neighbor. Are you going to the store? See if someone needs one or two things you can pick up.

If people in your life have identified themselves to you as being high risk, or have needed to isolate or quarantine. ask what they need. Then listen.

Healthy folks aren’t the only ones who can be helpful. NO, if you’re very ill in bed on a ventilator, you have absolutely no place helping others. Your job is to just accept help as it is offered. But even those of us who are compromised are often able to help others in some way. I’m reliant on others to do my shopping and wash my dishes. But Just last night I was able to talk with two folks on the phone and hold space for their grief and fear about their elderly parents. I’m a great problems solver, and disseminater of information. I have a car I can lend out when a friend needs one. And I have a surprising number of cupcake tins. And a Bundt pan. Please don’t buy a Bundt pan. Borrow mine.

Self-care

I’m not talking about Instagram-influencer-capitalist self-care. I mean what keep you the most OK you can be. Eat good food if you are able. Drink water. Take a breath. Tune out of media and conversations that are unhelpful and fear mongering. Exercise in a way that is appropriate for your situation. Stretch. Read a book. Tune out for a while with TV or a movie. Get clean. Change your clothes. Ground into your body. Laugh. Play a game.Spend quality time with your pets.  Listen to music you love. Cry if you’re sad or scared.

This is also a good time to figure out what some self-soothing tools like like for you. We know that one of the best ways to get our nervous systems to calm down is to regulate with others. You might still have that option if you like with loved ones and no one in your household is ill. But, especially if you like alone, this is much harder. Give yourself a hug. Deep breaths. Find a mantra. Hug a pet. Hug a stuffed animal – even if you’re an adult! No one is watching.

This will get more real

Rinse, and repeat all things things as needed. We’re still at the beginning of this pandemic. Many of us will be, but not everyone is going to be OK. And remember, there are lots of effects playing out, like product shortages, threats to small businesses, impact on elections, etc. Lots of things will be hard.

When folks who are at high risk are afraid, they have good reason to be. Don’t rush to reassure or try to make it better. Don’t gloss over their feelings because of statistics, or because the idea makes you uncomfortable. Instead, try listening to their pain and fear if you have the bandwidth.  Just be with each other.

Take all the precautions you know by now are appropriate and necessary. Do everything you can to protect the vulnerable folks in your life. Wash those hands. Ask them what precautions will make them feels safe. Notify them if you come to find out you were exposed, or if you become ill.

Do not over buy things you don’t need that others do, unless you’re buying them specifically to make them accessible to folks who need them. Lots of folks use masks and alcohol wipes in their daily lives. Many of us have dietary restrictions at play when we are faced with empty grocery stores.

And the bottom line, is we just can’t control what happens. All we can do is get honest with ourselves and out loved ones, and figure out how we do the best we can to make it through together. It’s going to take all of our big hearts and deep breaths.

 

You might also be interested in:

For more thoughts on how we can support each other in hard times, check out some of my other blog posts:

Supporting Each Other: Part 1 – learn some tips on who you can dump on when someone’s going through a hard time.

Supporting Each Other: Part 2 – tips from Celeste Headlee on listening

Supporting Each Other: Part 3 – thoughts fro Heather Plett about how to hold space for each other

For resources on chronic illness living, and disease-specific information on MECFS, check out my Chronic Illness Resources page.