Rebecca Weger

Unexpected Evacuation Drill

Photo of a black messenger bag — Photograph of my black Mountainsmith Adventure Office Messenger bag with two carabiners attached on the sides. I looked for a long time to find a bag that would work with my wheelchair and carry just the right amount of things to be out and about for several hours or a short emergency. The inside is lined in yellow and it has just the right number of sections for me It is always packed with most of what I would need to be out of the house..

Everything is fine.

I recently had a surprising morning, and a chance to practice my emergency preparedness. I want to share what happened and what I did in case it is useful to someone else.

I have a special interest in emergency planning, especially for disabled folks. I’ve spent a lot of time thinking about it, researching, and planning. I know that one recommendation is for people to practice with drills. But that would also be dangerous for my health and raise my heart rate too high, so I’ve decided against it. I’ve spent time thinking through some scenarios and imagining what might happen. And I’ve committed to paying attention and then doing thorough postmortems whenever something goes a bit wrong, like a short term power outage. I recently got a little evacuation drill in. When it was over I sat down to document what had happened with timestamps, and I’m quite proud of how it unfolded, even if it wasn’t perfect.

The Situation

Recently a new gas stove was installed in my apartment. It involved some shenanigans but eventually went as expected. But there was a moment during the installation when we smelled gas. After some poking and prodding, my building manager and the installer felt like it was resolved. All my windows were open and fans running all day and night because it was a nice day, but also because I needed to run the oven for a while to burn off any of the coatings on it before using it for food.

The next morning I woke up at 6:30 and went to the bathroom. I realized that the temperature of the house was great so I closed the windows while it was still cool, and went back to sleep. When I woke up a few hours later and got up again, I realized that I indisputably smelled gas in the apartment when I left my room to pee (my bedroom is blocked off from the airflow of the rest of my home). I didn’t grow up with gas, and I’ve never had a gas emergency before or really thought about it so I hadn’t specifically imagined that scenario.

First Steps

I got back to my room and immediately called my building manager because the incident was likely a result of the installation the previous day. He said he was on his way, and told me to call the gas company (NYSEG).

When I called NYSEG there were problems with my cell phone connection, so I moved from my bedroom out to the living room, closest to the WiFi, and a bunch of windows.

(On a normal morning I would never try to speak and concentrate to make phone calls, or walk further than the bathroom, until 90 minutes after my meds kick in. So now I have already hit excessive exertion.)

NYSEG told me to evacuate. I told them I would try, but was unsure if I could due to my disabilities.

NYSEG then said they would have to call the fire department as well because I technically live in a multi unit building and it is their protocol to alert the other occupants and come as a precaution. But because I know my neighbors, I knew they weren’t home, and told them I was the only person in the building, with my two cats. They were able to forgo that call, which reduced the chaos I would have to deal with, and reduced use of emergency services. (KNOW YOUR NEIGHBORS is one of my strongest ongoing recommendations to people as a basic life need.)

It had not occurred to me before that call that I needed to get out. (I literally had way less blood in my brain at this moment because of my POTS.) And I needed to process if that was even vaguely possible, and whether I could at least get out to the front porch.

So I got in a test run, unexpectedly, but I was at a significant disadvantage that I had not previously taken into account in my planning. And that is, I had just woken up and I did not have any of my medications on board in my system yet. That’s a huge problem for me that impairs my capacity even more than usual, and guarantees that everything I do is gonna be over my anaerobic threshold and very difficult, extremely out of breath, weakness, extreme impairment, desperately needing to sit down, with chest pain from my heart pounding. And yet, sometimes we do hard things.

Evacuation

From the time I got off the phone with the gas company until I was outside in my garage and my wheelchair was 7 minutes. Perfect? No. Impressive? Yes. I am pretty proud of myself and my executive functioning.

Here’s what I did in that time:

I walked back to my room. As my brain was trying to shift gears and calibrate, I was overwhelmed by the idea of trying to physically get myself outside. At first I thought it was impossible, then I thought maybe I could get to the front porch and acted accordingly.
Took my medication
Put on and started my heart rate monitor
Grabbed my everyday carry (EDC) bag from my headboard
Put the rest of my meds for the day and my phone in my EDC
Bribed one cat into my bedroom with food. Carried the other cat in. Closed the door. I considered trying to crate them to leave with me, but I knew there was no way I was physically capable of it. I decided the best thing I could do was lock them in a single room with a litter box, water, and a little food. That way they would not be able to escape as others went in and out of the house. And if someone else was able to crate them, they would at least already be confined in a small space.
Realized that while I had been partway through making my coffee before this all started, I could not finish that and needed to let it go. (I use it somewhat medicinally in the morning.)
I grabbed my laptop, tablet and reading glasses. That does not all fit in my EDC easily, and I did pause for a moment to consider my secondary bag options. I realized I should put them in the back pack by the back door. Somewhere around there is when I realized I should not be going to the front porch at all, but instead should be going to my outside wheelchair straight away using the back door. If anything escalated I was going to need my chair, and it was better to just use less energy and start that way. But this also meant that lying on the front porch under shade would no longer be an option.
I left my bedroom, locking the cats in, and put on the flip flops I keep right outside the bedroom door.
I walked to the back door and grabbed the backpack I keep there. It is mostly empty except for a waterproof blanket. Since I didn’t need that and it is large, I took it out. (* there might have been a reason to keep it in retrospect, but this was a good decision.) I instead grabbed down the two wheelchair cushions that I can put ice packs in, and all the ice packs for them from the freezer and put them in. Plus the laptop, tablet and reading glasses.
I very briefly considered grabbing my bug out bag, and it was right there. (So I made the right choice of storage location!) It is heavy, and I was already past my capacity. I also knew the new stove was extremely likely to be the culprit, and that it was unlikely to escalate into a bigger problem. That I was just taking a series of precautions.
I thought about grabbing an N95 mask from the basket by the back door, since I had decided not to grab one from next to my bed. But I assured myself that I had one or more in my EDC. I also remembered I was wearing my orange glasses, not my black ones, so I didn’t have my transition lenses. But reminded myself my actual sunglasses were in my EDC.
I went out the back door and down the stairs (a rarity for me), then out to the garage.
I opened the big garage door, got my backpack on the back of my chair, unplugged the charger from the chair, sat down, hooked my EDC to the chair with caribiners.

I was extremely out of breath, and my heart rate was way too high, but I managed to call a friend who was already scheduled to come, let them know what was happening, and ask them to pick me up coffee from elsewhere.

I then headed out to the front tree lawn to the shade.

Settling In and Waiting

I had to do several things to tend to my body which was in crisis from that level of exertion without all my meds. I often carry a yoga mat on the back of my chair, and I regretted that I didn’t have it. * This is where having the waterproof blanket could have alternately been helpful. My orthostatic intolerance is so severe that I cannot sit upright and have my legs down without careful planning and medication. So I needed to get myself as non vertical as possible, and do so with ice – both to to help get my heart rate down and mitigate the reality that outside was a little warmer than I like it to be. Getting down to the ground with my cushions, ice, etc was more stress on my body, but necessary.

Once I did that I drank some water from my EDC, and was relieved to remember there was a protein shake in there as well if I needed it. I considered that my phone battery wasn’t full, and remembered that I have a fully charged brick in my EDC in case I need it. I was texting with another close friend who was picking me up some fresh fruit. I told her what was going on as an FYI. She is my emergency contact and health care proxy, so I like to keep her in the loop when things get weird.

My building manager came and checked things out. He figured out the source of the problem and fixed it. NYSEG arrived and they went through my place with him to double check everything. They were all here and then gone in about an hour from when I made my first call. My friend got here a few minutes after they left. We sat outside and talked while I drank my coffee, cooled myself down, and let my meds kick in. About an hour after that I had recovered enough that with some help from my friend I was able to get back inside (up a flight of stairs) and back to my bed.

Lessons Learned

Heart rate graph — Screenshot of my heart rate graph for the day displayed as colored horizontal bands of heart rate ranges, starting at the bottom, moving to the top is gray, blue, green, yellow, red. On top of that is a jagged red line that plots my heart rate across those bands in real time. The first two hours of mapped time are very high, with an extreme spike to 132 bpm at the beginning.
I try to avoid the red zone (86 bpm and above) whenever possible, and reduce time in the yellow range (76-85 bpm)

I did a good job! I was not totally clueless or ineffective despite absolutely terrible body conditions. My heart rate got as high as 132 in this process! This is extreme. I’m supposed to do what I can to keep it below 86, which is my anaerobic threshold. (The last time my heart rate was that high was 22 months ago in September 2023 when I was dealing with significant end of life care needs with my dog and we had a crisis.) I spent a lot of time over my anaerobic threshold.

I am developing a newer protocol for how I try to mitigate overexertion. I don’t have that routinized yet. And there is a new medication I’m trying that I should add to my EDC. (Thanks, L for the empty contact lens cases!)

I want to revisit whether the idea of having oxygen on hand might be useful when I’m at such high levels of over exertion. One of my doctors recommended the possibility before, and I probably won’t know if it helps without trying it.

I should trust my past self! I was reflexively thinking of things to grab and reminding myself I already had them.

At some point I looked briefly for the file I knew I had on my phone of my checklist of things I can’t keep packed to grab in an evacuation. I was annoyed with myself for not having printed it out and hung it next to my bed as I intended to. But when I did review it later, I realized I got most of what was on the list. It might have been easier though, if I kept the backpack on the back of my bedroom door instead of by the back door. I used to do that.

I made a judgement call on leaving my bug out bag, and it wasn’t wrong. But I could more easily have opted into taking it if it was on wheels. I have thought about this before, as well as things like getting a cart to attach to the back of my wheelchair. But in the short term, I think I want to put my bug out bag, which is a backpack that can go on the back of my wheelchair, in a rolling suitcase. there is nothing in that bag that would be particularly damaged by thunking down the stairs. And I could drag it instead of lift and carry it. I already have clips I could use to clip the suitcase to the back of my chair so it can roll behind.

I could revisit my ideas for a better way to keep my yoga mat on the back of my chair. I like having it because its easy to just lie down anywhere. But the way I’d been carrying it most recently wasn’t working well and I set it aside without solving it.

And as always, my friends and community are awesome. I had physical and processing support from a friend who sat with me, helped me get back inside, and followed the usual morning routine to get me set up for the day. I had my emergency person calmly in the loop. And I knew that if things became more serious, or I needed to be out of the house for longer that I had people I could call and places to go. And I’m glad I know my neighbors.

[I write a lot. Journaling to myself. Long essays I never publish anywhere. Missives I end up using as Facebook posts. I’m trying to sort out what should be public and what should be private. What to share and what to simmer. When to post here. So while this may seem out of nowhere without hearing from me for a while, it isn’t in my mind.]

An Anniversary: 5 Years of SSDI

In the ME/CFS community some people recognize and are impacted by the anniversary of when they became ill. Many had a sudden onset, and that day is etched in their minds. They might experience deep grief as that day comes around, or be proud of themselves for continuing to survive, or both. There is a large advocacy organization that often solicits these dates and encourages folks to use them in awareness campaigns.

I can’t do that. I don’t have an onset date (which excludes me from those campaigns). I can’t even tell anyone how long I’ve been sick, except to say, more than 20 years, or most of my adult life. I don’t know when I got sick, except to tell you that it was between 1990-2003. There were potential trigger events throughout that time period, and I started experiencing symptoms. 1990 was when I acquired mononucleosis from the Epstein Barr Virus (EBV), which has been reactivated in my body for many years. But it was 2003 when I started doggedly pursuing answers from medical professionals.

But today’s a date that means something to me: my five year anniversary of being approved for SSDI.

I never hear people talk about that kind of date. But it’s the day my world changed.

[Context note: I am an educated middle-aged white lady with a master’s degree who previously held a management position at an ivy league university. I have more privilege that most disabled folks who are on federal disability benefits in the US, and make more money. I have more cognitive capacity than many people with my severity of illness. My experience is only my experience, and not the experience of many.]

5 years ago today I found out I wouldn’t become unhoused. That I was no longer at risk of having to surrender my pets. That I could buy groceries and pay for my supplements. It’s the day I could finally start mapping out the financial realities, possibilities and limitations of my new life. It was the day I could start using my back pay to replace sheets, to purchase assistive devices. And the day when I had to implement a very careful savings plan, since I have almost no potential to come into money again in my life without advances in research.

January 20, 2019 is the day I stood in the kitchen on the phone with my dear friend E, sobbing, shaking, pacing, in total disbelief and confusion that the government believed me. That my inability to do so many things that brought me joy or purpose was affirmed. I was seen. It wasn’t in my head. It was true.

And I had succeeded on my initial application with no appeals. (Gratitude always for the miracle who was known online as Lily Silver, and her genius and generosity in creating howtogeton.wordpress.com. What is remembered lives.)

And it was a major mile marker on the road to seeing myself as disabled. As identifying as disabled. And a door opening into the extraordinary disability community.

I don’t mean extraordinary in an inspiration porn sort of way. No. I mean the absolute glory of generosity, encouragement, information exchange, creativity, problem solving, truth-telling, challenging, radicals who are now my teachers and friends.

Did I need approval of a government entity to find my place there? Absolutely not. And neither does anyone else. In fact, it’s a pretty terrible measure of whether someone is disabled. When the Social Security Administration is denying 70% of submitted applications, and tons of folks I know don’t mean the specific financial criteria to apply, folks on SSI or SSDI are a small fraction of the disabled population. It’s also true that many disabled folks can and do work and have successful careers, with and without accommodations.

But in my case, that pronouncement was a catalyst.

It took me a while to integrate this new coronation. It can rearrange a brain and a heart and an identity. And then I had to feel my way around my new financial reality.

I’m not well off; I make less than my area’s calculated living wage. But it was information, stability, something to work with that wasn’t just terror of falling into an abyss with no net.

Because I’m mostly alone. I do have a bit of long-distance family support in the form of someone who partially subsidizes my pet care expenses, groceries and TV habit. But I don’t have a spouse, kids, siblings. My parents don’t provide much support in my life, which is not a condemnation or critique of them, just a reality. I don’t have someone to take me in or pay my bills. And I had gotten to daily panic attacks over my last $5,000. I had increased my antianxiety medication. My friends were trying to figure out how to help. One generously paid my rent that month. But no one had solutions.

The terror before my approval was all-consuming.

That is terror that millions of people are living with now.

And a terror that many still live with even if they receive benefits, because most people do not receive enough income to live on through SSDI or SSI.

SSI maxes out at $943 a month in 2024 ($11,316/year). This is funded by taxpayers and administered by the SSA.

The national average 2024 SSDI payout is $1,537 ($18.444/year before Medicare insurance premiums of $175/month or more), and my state average in New York is $1,540 ($18,480/year). SSDI is based on FICA taxes you paid while working, which are based on how much you earned. So the more money you made when working, the higher your benefit. The maximum allowed benefit is $3,822 ($45,864/year before health insurance). I don’t think I know anyone who gets that.

The living wage for 2024 where I am, Tomkins County, New York is $18.45/hour = $38,373/year. That’s for a single adult without dietary restrictions ($282/month on food), who has a very good deal on rent ($1,276/month), and limited out of pocket medical expenses ($203/month). Some of those expenses can be quite different for folks with chronic illness or disability.

I love a percentage calculation, so here it is: the average SSDI payout in New York State amounts to 48% of the living wage in my New York county. My income is between the two, which makes me fortunate in the context of my peers. But not so much as a human navigating the process of existing.

We must do better.

But for me, as an individual, it is a day to celebrate a certain kind of freedom and stability. A day I felt seen and acknowledged. A day I could exhale. A day I found myself grappling with a new identity. A day that gave me a shot at staying alive.

It’s Tuesday Morning

Photo of a long haired tortico cat wearing a pale green fleece coat. She is curled up sleeping on a hot water bottle, on top of a bed, on top of her human’s bed.

I was about to write a Facebook post, Facebook being the place I most often share the challenges of navigating benefits systems as someone who is disabled with severe chronic illness. And it occurred to me that perhaps I should be sharing these things more broadly. Many of my friends outside the systems have learned a lot from my sharing and seem to find it valuable. So here’s a bit about my morning:

I’ve been having sleep problems for a couple of months. But last night I took my Ativan, rearranged my bedding, listened to a bit of an audio book, and fell asleep at a reasonable time. I think I slept for about 8 1/2 hours, which was amazing. And I am so glad I had a night of almost reasonable sleep under my belt when I woke up. (Aside from the screaming cat on my chest, which is a whole other issue.)

What’s the current state of Social Security?

I scan the New York Times, and see an article on the current sad state of the Social Security Administration. 1 million disability applications backlogged. 36 minute hold times on phone calls. Budget chaos. I share the article in some key places on social media. I’m on SSDI, and don’t usually have problems. But I’m also coming up on my third Continuing Disability Review (CDR) and wondering when it will actually happen. The status of CDRs was not discussed in the article.

Will my medication be ready at the pharmacy when my shopper goes this afternoon?

The thing I needed to do was call my pharmacy. There’s a national shortage of one of my medications, and my refill is overdue. I have spent the last week and a half trying to track it and my refills down. Here’s the back story:

My pharmacy did not contact me to tell me there was a problem with my RX. I found out I had a problem when one of my helpers commented back on 11/24 that I was getting low. I logged into my prescription portal to discover that my refill was supposed to have happened on the 11th but was delayed.

I called the pharmacy and was told they could not get it, and I should call around to other pharmacies and move my prescription to whoever could get it. So I started calling pharmacies and asking if they had it, if they could get it, and who their supplier was. I found that my neighborhood pharmacy had 12 days of it in stock, but could not get more. So i called the on-call service for my doctor’s office and asked the doctor on call to put in a prescription for that 12 days. He did.

I begin rationing my medication, dropping one dose a day out of four.

But a few days later I got a text from my regular pharmacy telling my my prescription would be ready on the 4th. I was skeptical. So I called the pharmacy to confirm. I was told yes, it was fine, and it would be ready.

I met with my doctor that week and gave her a heads up that there was a problem. There is no other medication that does what that medication does, so if we can’t get it we’d have to pursue something entirely different, which has its own access problems, as it has to be compounded or gotten from another country.

On 12/1 I called the pharmacy again. I said hey, I’m aware there’s this shortage. I was told you couldn’t get it, now you say I’ll have it next week. I just want to confirm again that I really will be able to pick it up next week. Yes, I was told. No problems. It will be ready on 12/4.

12/4 was yesterday. There was no text from the pharmacy. The prescription portal says that it is in the process of being filled and will be available soon.

So now it is this morning. And today is Tuesday. And Tuesday is the day that my friend does my grocery shopping and picks up my prescriptions. I send her my list and instructions in the early afternoon, so I call the pharmacy to find out what’s going on.

The medication is not available. It is back ordered. There is no expected date when it will be available. The shortage is very real.

In my discussion with my pharmacist I shared my saga of phone calls. Which is when I find out that those calls last week were answered by a corporate office, and not the store. And apparently those folks can’t see the same information. He offers some compassion for the situation and tries getting creative about problem solving.

He says that the brand name version of the medication shows in his system as available to order. My insurance company might not like it. But there’s a chance we could resolve it with a new prescription from my doctor for the name brand. The insurance is likely to deny it, and he can try and override or two. If that doesn’t work, he would then send paperwork to my doctor for a prior authorization. But then I might have to spend some time calling the insurance company in order to get them to expedite the review process. He encourages me to get this moving as soon as possible, and a new RX to him later this morning would be best.

I have 19 days worth of medication left.

I call the doctor’s office. They put it in the queue to be managed, but won’t commit to doing it today.

And then, realizing the folks there who would be handling this are not my actual doctor, but staff I don’t know, I send an additional clarifying message through the portal. Now I wait, and start follow up calls tomorrow. But at least I know what to put on the grocery list.

My friend is here to help with the morning routine, and brings me coffee.

Thank goodness for my friends. I drink it hotter than usual, in search of fortification. My heart rate is too high from making phone calls. I rant. We chat.

A friend sends me a text offering to bring me dinner. a godsend.

I turn off my DND and turn on my ringer.

Do I still have Medicaid?

Throughout this saga, I check my email. I have a message from the woman at my local independence center who handles the financial side of my home care. She sends me a pdf of a letter from my Long Term Care insurance company that I need to renew my Medicaid immediately if I want continued services.

I have not received any recertification paperwork from my Department of Social Services which handles my recertification process.

I look through my notes to find my case manager’s number. I call DSS and get a recording that her mailbox no longer accepts voicemail, and I am immediately disconnected.

I Google my DSS and get the phone number for the Medicaid department. I leave a voicemail.

I get a call back that my Medicaid is fine until the end of February. My insurance company is sending panic notices for no reason. Also, my case worker has been out for a long time and they aren’t sure if she’s coming back.

There’s another vet bill.

Also in my email was an invoice for another $100 from a test we did last week for my elderly cat. I just paid the last bill for $350 on Friday. I promptly call and put it on my credit card. I still haven’t reached my GoFundMe goal from July, and care for my senior pets continues to require testing and medication. I am so grateful for the incredible veterinary care I have. But the money is real.

I’ve shared in some circles that my beloved dog died in late October. That’s a huge change and big grief that I haven’t spoken about publicly yet. But I still have a cat with kidney disease and high blood pressure who’s anemic and losing a lot of weight and constantly freezing cold. And I still don’t have a roommate to help me balance my budget.

My actual plans?

Right. That’s what I hoped to work on today. Advertising again in the hopes of finding a COVID cautious roommate. And advertising again for a second paid personal assistant. Both are processes I’ve been in for 15 months with no success.

But I’m exhausted now. I should eat food. Take my meds. Finish the grocery list. Take a nap. And those other things will wait until tomorrow.

I’m grateful dinner will come with no work on my part.

Meanwhile another disabled friend messages me. “How’s it going with you and Sadie?” “Today is a total shit show so far.” “Tell me about it, but only if you want to.”

Transgender Day of Remembrance

A graphic design of a lit candle in the blue, white and pink colors of the transgender pride flag is on the left. The words Transgender Day of Remembrance follow on the right.

I don’t often post for Transgender Day of Remembrance, although it’s certainly something that I think about. So here’s a story.

It turns out that three people from my circle in college have come out as trans now. But that had yet to happen in 1999. And 1999 was when one of the first out transgender folks who I knew, Tacy Ranta, was murdered. We weren’t close, or even friends. But we were involved in the same organization, and certainly knew each other by sight and said hello.

I’m not sure it was ever clear if it was specifically a hate crime or not. But it had that weight and reverberation. It was just a year after Matthew Shepard’s murder in 1998, and that was just a year after Ellen DeGeneres came out on national TV in 1997 (for those who are too young to know, this was a big deal). The queer communities that I was a part of were holding a difficult tension of fear and hope all the time.

My girlfriend and I were spit on walking down the street. My family did not embrace my coming out, and thought I was going to hell. Lots of people with less privilege than me were in much scarier situations.

And yet there was joy and norming of queer experience happening all the time in so many spaces. And I was leaving a job at the ACLU of Maryland, which had just successfully gotten the state sodomy law overturned. And on my way to work for one of the oldest and largest LGBTQ+ organizations in the country. We were demonstrating in DC at the Lincoln Memorial for same sex marriage. There was change and hope afoot.

I don’t think about Tacy often. But the weight of that shock, and the grief in my community stayed with me. And while I see all the ways that my privileged world changes for the better in my liberal bubble, I still hold fear that something could happen to someone I love just because of others hated and bigotry. Whether it’s my dearest college friend, or my former spouse, or former colleagues, or dear friends and helpers or the trans kids of my friends.

You, they, we, all matter. We should all get to be safe in this world living the full expression of whoever we are with as much sunlight as we choose.

Books by Mail

Screenshot of a WhatsApp message. The text of the message reads: Hey, (redacted) just dropped your next refrigerator magnet off. Apparently there was a library bag in your mail world and she added it to that so it would be contained. Below that text is a photo of a dark blue Tompkins County Public Library Books by Mail bag. A magnet with the image of a sloth is tucked into the pouch on the bag that holds the address card.

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

“Heart and Breath” by Rebecca Weger
2017
24″x24″ acrylic painting on wood cradle board. The image is a generalized depiction of a human heart and lungs. The image has streaks, circles, drips, and other marks. The colors are bold with black, turquoise, pink, red and white most dominant.

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.

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.

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