Building the Writing Muscle

This past weekend in Washington, D.C. for MDA Hill Day, I had the pleasure of meeting and speaking with Ira Walker.  In addition to being an MDA National Ambassador and an entertaining speaker, he also recently published a novel: Torn Branches. 

I asked him about his experience writing a novel and how he did it. Nothing in his background pointed to somebody who I would expect to write and publish a large work of fiction.

He said to me what I've heard several other writers tell me in the past. He said you have to practice. Write for an hour and half every day, he said, and then the writing muscle will grow strong and you'll one day find that you can write a book.

My partner recently wrote a book. Not a novel, but a technical manual: Getting Started With Grafana. I asked him what he thought about Ira's advice. He said that the "write every day" approach would never work for him. However, he's always been very talented with language and explaining complex topics. He's also good at letting deadlines put a fire under his butt. Apparently the publisher was very surprised by how well he met his deadlines, and this is not a typical approach. He said the "write every day" approach sounded like it would work for me temperamentally.

During the COVID era, when I was running Quaranteam, part of what we were offering was a weekly newsletter to our members. Weekly was a bit aspirational. Writing these was challenging - I was sending them on an email distro list to 250 of my friends and friends of friends, what will I say wrong this time? I got thoughtful feedback from one of my Admins when I shared this struggle. She's a counselor, and also has a master's degree in creative writing from Emerson, so I valued her feedback.

She told me that she thought I was struggling because my newsletters were always written from the heart.

To give you an example from September 2020:

We might feel overwhelmed.  We might feel isolated.  But we are together.  We might not see the impact of our work from where we stand now, but it is vital for the future that we are building together.  Like it or not, we are living through history right now.  We are at a critical juncture to shape the world for decades to come, even though we might never have the perspective to fully appreciate the trails we are blazing or understand how they all intertwine together.

Wow, listen to me go! Somebody get me a pulpit! No wonder I found writing these draining, I was always shooting the moon. Wish me luck, maybe I can learn how to deliver consistency.

eAPTCs Helping People Living with Disabilities

This past week I had the opportunity to visit my lawmakers on Capitol Hill in DC with the Muscular Dystrophy Association (MDA). At this MDA Hill Day event, people from 26 states met with their lawmakers and advocated for issues important to people living with neuromuscular disease (NMD) and their loved ones.

Specifically, we were asking our lawmakers to protect enhanced ACA premium tax credits (eAPTCs), support NIH funding, and cosponsor the Alleviating Barriers for Caregivers (ABC) Act. I found it interesting that the MDA had opted to include eAPTCs as an issue to advocate for - do people living with NMD even use these?

ATPCs are the mechanism by which the ACA makes premiums for health insurance policies purchased on health insurance exchanges affordable. They work by comparing your household income to the price of a benchmark plan available on the exchange. The benchmark plan is the second least expensive silver tier plan available in your zip code. Households are then given tax credits in the amount which would make this benchmark plan mathematically "affordable," and these credits can then be applied towards any plan on the exchange. Since their implementation under the ACA in 2014, households earning less than 400% of the FPL ($60,240/year for a family of one in 2025) have received this form of premium assistance on a sliding scale.

Enhanced ATPCs were introduced in the American Rescue Plan Act (ARPA) of 2021 in response to the continuing COVID pandemic and were later extended through 2025 in the Inflation Reduction Act of 2022. eAPTCs opened premium assistance to higher income families that had previously been excluded from any financial assistance when purchasing private health insurance policies through the exchange. With eATPCs, households do not need to pay any more than 8.5% of their total household income towards the benchmark plan. This applies to all households earning more than 400% FPL (with a handful of other eligibility criteria, such as approved immigration status).

With 2025 coming to a close, eAPTCs are at risk of ending. For over a month now, the federal government has been shut down because the majority party (Republicans) in both the House of Representatives and Senate are refusing to include these tax benefits for middle class households in the stalled funding bill.

But back to the MDA. NMDs are progressive diseases characterized by muscle weakness and loss of function. People living with childhood onset NMDs typically qualify for automatic Medicaid eligibility through the SSI program. People living with adult onset NMDs are able to qualify for Medicare coverage 24 months after the social security administration (SSA) deems them "disabled." With SSI Medicaid and Medicare available, why do eAPTCs matter to people living with NMD?

I found a resounding answer when I spoke with a married couple from Illinois at MDA Hill Day. She has ALS (Amyotrophic Lateral Sclerosis) and he takes good care of her.

Considering how rapidly ALS can progress, it is one of only two diagnoses which allow people to skip the 24 month wait for Medicare eligibility (the other being end stage renal disease (ESRD)). I asked this couple if their experience matched this - how immediate was her Medicare coverage in practice?

"She doesn't qualify for Medicare," was his response. 

"What?" I said, "Oh no! Does she not have the 40 quarters of work history she would need to qualify?"

"Bingo," he said, "And in order to qualify for Medicare spouse benefits under my own work history, she needs to be 62. She's 58."

"Oh no," I said. "And at your ages and at this point in your career, I'm sure you have too much in assets to qualify for Medicaid through SSI..." (a married person with a disability cannot qualify for SSI Medicaid if the couple has more than $3,000 between them). "How do you get her health insurance?"

"We get her health insurance through the exchange," he said. "We're using the enhanced tax credits this year, and her health insurance is $600 a month. Next year, if they're not renewed, we'll be paying $1,400 a month." 

Their story really hammered home for me how important it is for everybody to have access to affordable health coverage. I had been thinking of people like myself - comfortable Americans without children who really just need health insurance as a safety net in case of catastrophe. I want high-quality affordable health coverage to be consistently available to me and my peers. However the political narrative likes to malign people in my situation - my asking for assistance is literally the same as stealing the food out of the mouths of some Dickensian child strawmen, or so they try to tell us.

eAPTCs help everybody. By extending tax credits to middle and upper income families which make health insurance premiums affordable, the system benefits. More people in the risk pool means more predictable annual costs. Proactive preventive health care that people can afford leads to fewer ER visits and better long-term health and system cost outcomes. And finally, relaxing APTC eligibility requirements for everybody creates a safety net, and it means that people who really need regular care won't lose access to affordable coverage if they fall through the cracks of other programs.

Working as a Family Man in Florida

Last week, I was traveling through Florida on vacation (I know, I know, I was sure to cover my luggage in Pride stickers first). My companion and I were taking a taxi to a hotel, and the driver mistakenly took us to the wrong Marriott. No big deal - there were like a dozen Marriott's in the city and the right one was less than ten minutes away.

The driver apologized and said he had a lot on his mind. He told us that his wife had been fighting stomach cancer for a year, and he was expecting the call from the hospital at any moment that she had passed. He talked about how her face had changed completely during her illness. He said they had three children between the ages of 8 and 15.

I don't think he was meaning to give us a sob story. Up until this point he was playing Christian music on the radio, turned up loud enough to avoid talking with us.

So why on earth was this man driving us around in his taxi? He should instead be with his dying wife. He should instead be with his children. He should instead be at church on this sunny Sunday morning finding support through his faith and his community.

He didn't say as much, but I think he was driving his taxi to keep his family's household income high enough to qualify for subsidized health insurance through healthcare.gov.  If his income ever fell below 100% of the federal poverty level ($37,650/year for a family of five), he would lose access to all assistance and his monthly health insurance premiums would skyrocket. He was working so he could pay for his wife's medical care.  

In most other states, this would not be an issue. In most other states, if his income was below 138% of the federal poverty level ($51,957/year for a family of five), his entire family would qualify for free healthcare under the Medicaid program. Unfortunately, Florida and nine other states have made the political decision to refuse federal dollars to provide free health coverage to their lowest income residents. So, ironically, if he's poor enough, he gets generous federal funding in the form of ACA premium tax credits and cost sharing reductions (CSRs).  But if he's too poor, he gets nothing.

I don't know all of the details here. His kids probably qualify for CHIP health coverage through the state. Maybe he and his wife can qualify for Medicaid due to being caretakers of children under 18 (several non-expansion states have something like this). But wouldn't it be easier and more humane to provide coverage to low-income families with less administrative overhead?

If he lived in a different state, he and his family might qualify for free healthcare through Medicaid (even if he still chose to work some). He might be eligible for paid family medical leave (PFML) to care for his wife, even as an independent taxi driver (e.g. MA). His wife might qualify for special programs to provide extra financial assistance to people diagnosed with cancer (e.g. CT).

I'm making up a lot of details about a person who I barely met. But it breaks my heart that we have a nation of haves and have-nots based on the compassion or cruelty of state lawmakers.

Quaranteam: A Meta-Analysis

I must say that the inaugural Quaranteam has been a resounding success. While I might have already mentioned that the Boston Polyamorous Community is an exceptional group of people who have a lot of practice at negotiating boundaries and being community-minded, we are also smart, creative, and a lot of fun!

Delightful things that have surprised me

Opening up a Boston Poly Community Quaranteam (BPC QT) Slack and cautiously nurturing and moderating it through its development has led to so many delightful things beyond Quaranteam’s original vision of Helpers helping Helpees with Captains to coordinate.

• Slack Members have created and moderated their own amazing channels, such as #surprise-squad, where BPC QT Members anonymously drop off surprises at each other’s houses (with privacy explicitly protected!).

• Countless group activities have been coordinated on the platform ranging from Zoom tea parties, to movie nights, to remote beer tastings (with curated beers delivered to the homes of all attendees!).

• The incredible Admin team has brought diverse strengths to building a culture of positivity in the Slack. Sometimes this is formal (e.g. authoring Slack Etiquette Guidelines), sometimes this is structural (e.g. engaging the community and taking the time to plan before launching new Slack channels), and sometimes this is active (keeping an eye on heated discussions and jumping in with a gentle hand when appropriate).
  
  

Bumps in the road

However, it’s not been all puppies and rainbows. Considering the safe environment and culture of sharing which we’ve built in the BPC QT Slack, growing pains can be hard and emotions can be huge (especially these days). Trust isn’t something that happens by accident, and new members can be scary. Keeping the Slack culture healthy and vibrant takes a lot of conscious work.

And beyond interpersonal considerations, other weird snags can come up. Did you know that McAfee briefly categorized quaranteam.net as a malicious website, scaring off new members?  Props again to the diverse skills set of our Admin team – we were able to petition McAfee to change their records and stop talking trash about us within a week. You know, if it was just me running Quaranteam, I would have had to fix this by abandoning quaranteam.net entirely and then moving everything over to a whole new website… having people who know things that I don’t in leadership positions sure is helpful!

Goals and ambitions going forward

While the BPC QT is a lively and rewarding handful that takes up plenty of time, the Quaranteam leadership team (the Admins plus a few allies) is always on the lookout for what’s next down the road. This has led to wonderful innovations (e.g. social justice Slack channels, oh and also *the entire Slack*), but we look beyond the BPC QT too. 

One recurring theme since day one has been figuring out how to build more Quaranteams for other already-established communities. Another has been how to give a professional boost to the Admins and other community members who are generously donating their time – this is a volunteer labor of love, and we’re all bringing our professional A-games to the table.

We’ve done several things to promote these dual objectives that many people might not know about:

• We launched a Quaranteam LinkedIn page. Take a look and consider following us!

• We’ve had some initial conversations with startup services companies. For example, we had two calls with KiwiTech about potentially co-developing a more robust software platform. We’re not partnering with them at this time, but discussing the QT vision and platform with them was incredibly constructive.

• Quaranteam applied to the Emergency Response for the General Public Innovation Challenge, sponsored by the Robert Wood Johnson Foundation last month. Check out our pitch deck! Here’s hoping we make it to round two!

• We’ve been strategizing about how to be written up in the press for several weeks now, and I think we’re about to hit traction with a local newspaper!

• Quaranteam is putting together application materials for the TechStars Startup Accelerator. Getting in would be an honor and an amazing experience and bring invaluable mentorship as well as funding opportunities. This is a pivot from our earlier ideas about registering as a 501(c)(3) or a 501(c)(4) nonprofit, but we’re still not selling user data and privacy will always be upheld as a core value.

Quaranteam has been a weird ride. It doesn’t look at all like I thought it would when I set out to build it four months ago – it’s so much better. To be honest, I had thought that Quaranteam would be petering out about now due to a robust public health response to the COVID-19 pandemic, but here we all still are. The Quaranteam structure that we’ve put in place will serve us well as we continue to brave this march together.

COVID-19 Beach Safety

With the summer in full swing and the pending holiday weekend, I wanted to share a few guidelines from the CDC about how to visit the beach responsibly in the age of COVID-19.  Use this list as a starting point to keeping yourself and others healthy and safe.

Remember, the virus that causes COVID-19 is thought to spread mostly person to person, by respiratory droplets released when an infected person talks, coughs, or sneezes. Another person can become infected if the droplets land in his or her mouth or nose and possibly if the droplets are inhaled into the lungs. The virus might also spread to hands from a contaminated surface and then to the nose, mouth, or possibly eyes. Infected people can spread the virus whether or not they have symptoms.  Evidence suggests that COVID-19 cannot be spread to humans through most recreational water.

Fortunately, there are several actions you can take to help lower the risk of transmission of the virus at the beach.




Stay home if you might be sick.  First and foremost, stay home if you have symptoms of COVID-19, have been diagnosed with COVID-19, or are waiting for COVID-19 test results.  If you have been in close contact with someone with COVID-19 within the last 14 days, stay home and monitor your health. 




Practice Social Distancing.  Visit beaches close to your home so you are less likely to need to stop along the way while traveling. Carpool or vanpool only with people in your own household.  Stay at least six feet away from people who you don’t live with, on shore and in the water.  Avoid crowded swim areas and beaches where distancing might not be possible.  Lifeguards on duty will still rescue distressed swimmers, provide first aid, or perform cardiopulmonary resuscitation (CPR) when necessary.




Use Cloth Face Coverings.  As you know, cloth face coverings are meant to protect other people in case you are unknowingly infected and do not have symptoms.  It’s most important to wear them when social distancing is difficult.  Plus, they can help protect your face from harmful UV rays.  The CDC advises that you do not wear them in the water, because they can be difficult to breathe through when they’re wet (making it particularly important to maintain social distancing in the water).  Bring some spares, in case any get wet.  Children younger than two years old should not wear cloth face coverings, nor should other people who are unable to remove the cover without assistance.




Hand Hygiene. Take advantage of any portable handwashing stations and periodically wash your hands with soap and water for at least 20 seconds.  If soap and water are not readily available, adults and older children who can safely use hand sanitizer should use one that contains at least 60% alcohol.  But watch out - hand sanitizers might not be as effective when hands are visibly dirty or greasy, so wiping sand or sunscreen off before application might be helpful. Reapply sunscreen after hands are dry.




Beach Toys and Gear.  Bring enough for everyone.  Items that are difficult to clean, sanitize, or disinfect or that are meant to come in contact with the face (such as goggles, nose clips, and snorkels) should not be shared.  Don’t share food, equipment, toys, and supplies with people who you don’t live with.




Follow Beach Safety Rules and Guidelines.  Finally, listen to local health officials, beach managers, lifeguards, and staff and comply with all beach safety guidelines (COVID-19 and otherwise).  Review any posted signs and listen to any announcements broadcast by PA or megaphone.  Contact the beach in advance of your visit to make sure they are open and ask what steps they are taking to prevent the spread of the virus.  If you need more information, ask to be put in contact with the beach staff member responsible for responding to COVID-19 concerns. 

Source: https://www.cdc.gov/coronavirus/2019-ncov/community/parks-rec/public-beaches.html

With a little forethought and planning, you can do your part to help reduce the spread of COVID-19 and flatten the curve.  Stay safe this summer!

Sources (downloaded July 2, 2020):

https://www.cdc.gov/coronavirus/2019-ncov/community/parks-rec/public-beaches.html

https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/visitors.html

https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/beaches-pools.html

Quaranteam - Giving Community Structure to Run Wild

Quaranteam continues to grow and expand!  We’re getting better and better at this as time passes. 

The most notable recent change was the rollout of a Slack workspace.  I’m a closet luddite, and I’ve been resistant to adopting Slack in my life generally.  I don’t really social media, and I prefer using the internet to research information rather than to socialize with friends.  But my two amazing co-admins convinced me it was worth exploring. 

They were right - It has been mind-blowingly successful at building community engagement.

Quaranteam’s core offering is basically a matching service with a project management component.  You fill out a form to become a Helper, and then potentially get matched with a Helpee.  In the meantime, there’s not much to do.  And people who join the platform but who don’t feel up to being a Helper at this point never really get contacted at all, beyond a weekly newsletter. 

Having the Slack as a parallel product offering gives all members a place to go.  Whether or not they actively post messages or participate, they can go in there and see their friends and friends of friends discussing which stores have toilet paper, learning how to care for a yeast starter, sharing pet photos, and exchanging friend codes for Animal Crossing (for example).  We ended up building a few topic-specific channels, but mostly we’re just letting the Slack run wild.  And it is J

The Slack also supports the core offering.  Whenever a new Helpee signs on for two weeks of support, we build them a private Slack channel.  The Captain is then able to invite the whole Helper Squad to one centralized place to coordinate.  The Helpee doesn’t have to do Slack if they don’t want to, but they’re included in the room and encouraged to invite their friends who might not have been signed up to be “official” Helpers.  This has an added bonus of helping to protect the privacy of everyone involved, because no email addresses need to be shared.

All of this said, not everybody is into Slack.  Some Helpers will still need to be wrangled by email, and other Captains and Helpees might prefer to communicate by text message outside of the channel.

This is fine.  Our goal is to create a framework and make tools available.  There’s no need to be proscriptive about how Helpees are helped.  I hope that more Helpees start nominating their own Captains, and I want to make sure the trusted friend or partner who they nominate is able to tap into the Quaranteam machine and benefit from what we’ve built and what we’ve learned.

Quaranteam - Prioritizing Community

The trick with growing a platform like Quaranteam isn’t the technology.  The trick is the community.  Getting people to show up, getting people to engage, getting people to bring their own ideas and imaginations to a shared vision.

I had my own startup back in 2011.  Pico Health.  Health insurance for entrepreneurs and startups back before several of the ACA provisions had rolled out.  My home state of Massachusetts was unusual in that we had an individual mandate as well as a community-rated health insurance exchange for individuals and small businesses.  Pico Health limped along for a while.  I learned a lot, made some friends, and earned maybe $500.  In my post-mortem ruminations about what I could have done better, the number one thing that comes to mind is that I didn’t have a cofounder.  I was doing everything alone.

Before I launched anything with Quaranteam, I read up on how to build a successful community.  I had previously studied community building in 2014 while managing a team of remote contractors at a different startup, and I continued my community-building education while earning my MPH. 

I am delighted to say that, with just a little bit of prioritizing and effort, my smart, talented friends quickly became keys and authors to Quaranteam’s success.  By reaching out to awesome people individually and then working to develop a platform for them to communicate with each other and collaborate without me, Quaranteam is growing beyond my imagination already.  Plus, if you ask individuals for specific help but they’re not able to help, they often then become more engaged individual community members – they feel valued and like they’re a part of something.  Engaged community members are treasures and grow into the roots of any organization or movement.