Nothing to See Here

I’ve been planning a legislative update for a while. Little did I know just how bad June 2018 would be.

Before yesterday, I might have spent the whole post talking about the Trump administration’s new policy that allows insurance companies to offer plans that do not cover the 10 essential health benefits guaranteed by the Affordable Care Act. Of course, the ultimate target of the policy is to completely eliminate mandatory protections for those with pre-existing conditions, even though protecting that particular essential health benefit is “very important” to over 70% of Americans. Or perhaps the proposed cuts to the medical safety net – Medicare and Medicaid -- that would affect our most vulnerable, justified by a tax cut that was bad, but not that bad until you realize that they needed it to create a reason to gut Medicare and Medicaid.

I would have encouraged you to vote if you felt threatened by these policies. I would have given you a link to make sure you were registered (and to register if you weren’t), tell you where to go on election day, and how to vote early, as well as one to help you evaluate the candidates by their voting records.

And I would have steered clear of anything political beyond healthcare policy.

In good conscience, I can’t do that anymore. I will always encourage you to vote, but the Supreme Court has handed down three decisions in the last three weeks that will make that more difficult.

• Decision #1: Gerrymandering is a way to draw (or re-draw) Congressional districts in a way that discriminates against members of a specific race/ethnicity or political party. Racial gerrymandering has been illegal for a long time. Until recently, political gerrymandering was not egregious enough to require laws to prevent it. Now it is. A couple of weeks ago, The justices decided that they weren’t going to rule on whether partisan gerrymandering is unconstitutional. It’s hard, but not impossible, to measure, and it’s gotten to the point where it is demonstrably creating an unlevel playing field. This would have been the time to act. Solution: Get your state legislature to put gerrymandering on the ballot. Several states are proposing plans for the courts or bipartisan commissions to redraw the districts. Twenty-four states allow citizens to propose policy to the legislature or directly to their fellow voters.
• Decision #2: They upheld a decision to continue letting Ohio to purge voter rolls after missing one vote. Currently, if you miss a presidential or mid-term vote, the state will send you a notice informing you that you are about to be purged from the voter rolls. On paper. Through the mail. If you do not respond, you will be taken off the voter rolls after another four years. Do you know who actually checks the mail and reads random communiques from the state? No one under the age of 60. The Voter Registration Act says purging voter rolls for not voting is illegal. However, the majority (strictly along party lines) ruled that because the purge wasn’t aimed at a single individual, it didn’t violate the law. Do not let yourself believe that this behavior will be confined to Ohio. Solution: Nothing for the moment.
• Decision #3: They reversed a lower court decision that Texas districts were racially gerrymandered against Latinos. This decision was also made along party lines, and comes five years after they gutted the Voting Rights Act. Solution: Nothing for the moment.

All of these things put together with states closing polling places in minority neighborhoods, voter ID laws, and limiting polling hours and early voting options conspire to make voting by certain groups impossible. And who are these groups? Minorities, low-income earners, the elderly, and the disabled. All we ever wanted was a level playing field, and each of these things is another obstacle to overcome for the people who have the most to lose.

I am an optimist. I do not like being the doomsayer, but today it feels like there is no other choice. Today, Supreme Court Justice Anthony Kennedy, the only swing vote on the Court, announced that he will retire at the end of July. I can tell you right now that the Trump administration will nominate another Neal Gorsuch, who believes that racial gerrymandering is not illegal and has indicated through his judicial record that he does not believe in legal protections for the disabled. The Supreme Court protected the ACA only because the individual mandate was a tax. Now that the individual mandate is gone, so is the reason the Supreme Court protected it. What do you think will happen when the Trump administration brings another case saying that the Affordable Care Act is unconstitutional now that the individual mandate is gone. Nothing good, I assure you.

Supreme Court appointments are for life. Whoever comes in after Kennedy will be there for decades. The only way to stop it is to flip the Senate from red to blue – another very difficult but not impossible task. This means we have to protect Democratic Senators in Florida, Indiana, Missouri, North Dakota, and West Virginia, and flip two in Nevada, Arizona, or Tennessee.

I can tell you right now: this is the most important vote you will ever cast. If you have to miss an hour or two of wages you can hardly afford, or bring your kids to the polling place with you, or beg a ride to get to your polling place, PLEASE VOTE, especially if you live in one of the states I mentioned above. If you ever felt powerless in politics, now is your time. We have the power to protect ourselves, if only there are enough of us. I do not want to see our rights, so dearly won, steadily walked back for the next 30 years, and neither do you.

P.S. I do not consider the current administration to be conservatives. They are not the respected adversaries I have always known.

Legacy

I mention my mom a lot when talking about my chronic conditions, but my dad is just as much of an influence in my life. We were not always as close as we are now, but it was the first relationship I actively worked on as I transitioned from child to adult, and that is no small thing. I’m not sure I would have been able to do that successfully with my mom had she lived long enough for me to try.

We are a very politically aware family. My parents always took me and my brother with them when they voted. Current events were regular topics of discussion, and I am still unaware if there was any attempt to censor discussion for age-appropriateness. One of my clearest childhood memories is my maternal grandfather telling me to pay attention to the Iran Contra hearings in the summer of 1987. He said history was being made. I was 10. I didn’t want to watch PBS. I wanted to watch cartoons, but I sat down and paid enough attention to know it was boring.

We weren’t really what you would call activists, though, or so I thought. I knew my grandfather wrote a lot of letters to Barbara Mikulski, but that was pretty much it.

Then my parents and several others, led by my dad, sued our city and then the state over the elementary schools in my hometown, and I began to learn about civil rights. (I was a plaintiff!) The still fairly segregated elementary schools in African American neighborhoods weren’t getting the same money as the elementary schools in white neighborhoods. It took a long time, but they (we!) won, and each feeder area got an elementary magnet school, each with its own specialty (we were arts, and now there’s math and science, Spanish immersion, communications, and NASA Explorer).

You can’t really be involved in something like that without starting to ask questions. In conversations we still have, I learned that my paternal grandmother was active in the integration of all-white Baltimore neighborhoods in the 1950s, long before Congress enacted the Civil Rights Act.  

A decade later, on April 4-5, 1968, while my dad was a law student at George Washington University, he ferried residents home from jail while southeast Washington burned in response to the assassination of Martin Luther King, Jr. He had to have a special placard in the window of his car so he could get past checkpoints set up by police and military troops. It must have been scary, but the people he drove had every right to their fury (not the burning and looting part), and he wanted to help.

This is the environment I come from. This is the way my family did things. It is only natural that I continue the tradition in my own way, with my own civil rights issue -- that good health is a right and not a privilege.

So, remember to make sure you are registered, and then vote! In your primaries AND the general election in November. This is how we will change the world no matter what issue you’re most passionate about.

P.S. This is a surprise for my dad, so don’t tell him. 

In the Eye of the Beholder

I came to my art appreciation awakening when I was 13. In the days after my Bat Mitzvah, we had relatives in from another continent, so we all piled into the car for the four-hour trip to Chicago to see Monet in the 90s: The Series Paintings at the Chicago Art Institute. I threw a tantrum. It was my Bat Mitzvah, it should be all about me, and I didn’t want to go to some overcrowded art exhibit.

Once I went in, I was, of course, blown away by the canvasses, one of which was wall-sized. It was also fun to compare what I saw with and without my glasses (this only really works for the Impressionists). Eventually, I came to appreciate more than just impressionism – the pre-Rafaelites, glass blowing, sculpture, photography. Now the walls of my apartment are covered with art, and I even have a miniature of a Rodin sculpture.

In a recent conversation, I realized I may be privileged to have access to a more unusual form of art. My friend was talking about how, after her recent shoulder surgery, she had several x-rays that she would likely never use again. The conversation devolved into a rather silly set of proposals of what to do with them and other leftover medical records. I joked that she should make a collage and hang it on her wall.

We forget sometimes in all of our fear and frustration with bodies that don’t work properly, that the human body really is a work of precision art. Not the outside, the inside, the things we can’t groom or enhance with cosmetics.

Once I had to go in for an ultrasound. (I have cystic breast tissue, which is very common and benign, but they do like to check periodically to make sure everything is ok.)  There was a mix-up and they had to do it a second time. While I waited and chatted with the tech, he offered to show me the heartbeat in my leg (femoral artery) and all of the blood vessels. I’d never thought about a heartbeat in my leg before. It was fun to see, but not really something I could hang up with my posters and paintings.

But there was also the lightning storm. Once, after I had my second set of surgeries for retinopathy, my doctor wanted to check that everything was stable, so he injected me with a dye that lit up the blood vessels in my eyes. While the blood vessels in my legs were cool, these were stunningly beautiful. They looked like a lightning storm against a sepia sky. I could see the smudges of laser scars, which were in high contrast against the sharpness of the blood vessels. It wasn’t what I expected of one of my biggest problem children (my retinas).

I liked it so much, my doctor printed off a copy for me, which I still have a decade later. For a while that page lived on my office wall at work. I couldn’t tell them what it really was; that might have been a little too much for sensitive stomachs (not as bad as that time my middle school history teacher made all of us watch a video of his ACL surgery. Eeew.).

For all the years I’ve been poked and prodded – or I’ve poked and prodded myself – for the sake of good health, I don’t get to see inside very often. Probably a good thing.

So, if you ever have the opportunity, I recommend taking it. As with more common forms of art, a view under the skin may not be to everyone’s taste, but you also may find it as fascinating as I do. It’s all in the eye of the beholder.

It’s All In My Head. Which is Probably Good.

I love movie scores. If you have never just sat and listened to the music behind Gladiator or Last of the Mohicans – whether you like the movie or not – you’re missing out. And we all recognize specific themes from cultural icons like Darth Vader’s in Star Wars. Most of your favorite movie characters have their own music, whether you realize it or not.

These carefully crafted pieces are meant to shepherd us through the movie, so that we experience it the way the director wants us to. Each note is meant to evoke and heighten what we feel – joy, anxiety, certain doom -- often communicating the feeling of the moment better than words.

Sometimes I think my life should have its own score. Each of us has a soundtrack of songs that we love, and that can change every day. But I am talking about pure instrumental, at least for one specific situation that happens three times a year. I am talking about getting my lab results, of course.

I thought I had left report cards behind with school, but every time I see certain providers, my labs (I’m looking at you A1c (diabetes) and eGFR (kidney disease.)) tell a story of how well I have managed my conditions over the last three months. Sort of. I have figured out over the years that the tests are weighted in favor of the last 2-4 weeks, which means I can goof off a bit and still do well if I shape up for finals.

I usually have a good idea of what I am going to hear, but no matter how good my blood sugars have been, I always feel nervous until I hear the numbers. Of course, I don’t have my own personal score, but there are a few pieces I hear in my head every time I go.

In the buildup getting my results, I feel a bit like Flight of the Bumblebee – manic with a hint of both fear and curiosity, with a significant chance of splatting myself on a brick wall (I am a bumblebee, after all). I know how closely I have been following “the rules” and I never know if I am going to “get caught.” As a practiced boundary pusher, you would think I could find some other boundary to push since the consequences of diabetes can be serious (heart disease, stroke, etc.). But the consequences are never immediate and avoiding the consequences for a few more months can be a heady experience.

If it’s good, or at least stable news, I am flooded with relief, and I feel like Beethoven’s 9th Symphony, better known as Ode to Joy. I can continue what I was doing, no changes necessary.

If it’s bad news, I feel like The Imperial March (Darth Vader’s theme), like a failure and certain doom is coming unless I do something to stop it. Then I need all the right radio songs to lighten the mood.

Last week was different. I had been shadowing Darth Vader for several months, and I expected more. But I finally got to hear some Beethoven instead when I discovered that I had regained over half the kidney function I had lost over the last couple of years. Do you have any idea the kind of cognitive dissonance combining those two pieces causes? It was a little disorienting. Hopefully, moving forward, I can ditch Vader completely. It would be really nice not to have that dramatically dark tune bouncing around in my head the next time I get medical results.

A Better Way to Escape

Last week, I watched a PBS special about the 100 books America loves most (you can vote all summer for your favorites!). As I sat there, I tried to remember exactly how long it had been since I read a book. Too long, apparently. I couldn’t recall.

This was alarming to me. Books – actual paper books you hold – are such a fundamental part of my identity that I have put off cataract surgery for over a dozen years because I am afraid to lose the ability to literally bury my nose in a book. As a kid, I would lock myself in the bathroom for hours because no one would interrupt my reading in there. (In hindsight, I realize my parents knew exactly what I was doing and were kind enough to indulge me. Mostly.) I still wear my socks with the flying books on them.

So, I panicked, did a little research, and bought a new book. Then I spent an entire day over Memorial Day weekend – about 13 hours-- reading it. I rediscovered a few things between the pages:

Sleep

My reading day took place on a sofa under a huge window, so in natural light. The TV was off all day except during meals. No radio, either. The phone was in another room. I read and read and read until my eyes wanted to fall out. It was good to know I could still focus like that.

I went to sleep at a reasonable hour, too. 10 or 11, I think. And I slept right through.

That hasn’t happened for months. Even the days I do get to sleep on time, I usually wake up a couple of times before my alarm goes off. Sometimes it takes a while to get back to sleep. Sometimes I wake up with just enough time before the alarm that I know it’s useless to try to fall asleep again. Whatever the circumstances, I am exhausted when I get to work.

Not this time.

Eating

I am an emotional eater. Events of the last couple of years have proven this over and over again, to my detriment. Like so many of us, I eat for comfort. Diabetes is not kind to this habit.

But books are. I can fall into the pages of a book as easily as I can fall into a bag of chips. And I don’t eat when I read. It messes up the book. (I am meticulous about my books. I never break the spine on a paperback and if the corners of pages in a book at the bookstore are folded, I will search through all the copies until I find the one that is least imperfect.) During my reading day, I only ate when hunger drove me to it, and only enough to not be hungry anymore.

It was always that way. Why did I forget that?

Stress

This one is the most important.

My attachment to books started during my recovery from meningitis. While re-learning to walk, the only thing I could do where I looked like all the other kids was reading. From then on, I consumed every book put in front of me, for better or worse (my mom handed me Anna Karenina when I was 9. I hated it, but I read it. Only took three years. Oedipus Rex was much faster. I was 10.) It was a great escape from a very hard life. Problem was, the hard things kept on coming, so I kept on reading. And who was going to tell a kid to stop reading so much?

It lessened a little for grown-up things like college and, well, work, but books still allowed me the space to handle my problems on my own schedule. And that’s what I lost when I stopped reading. TV can be entertaining. Podcasts, too. But you can never lose yourself in digital media like you can in a book. Everything is handed to you. There is no exercise of the consumer’s imagination in digital.

I admit it’s a fine line between allowing yourself to be consumed to the point of not dealing with your issues and using the escape of a book to help. All I know is that my anxiety level dropped by about 25% between the recovery of self and the space given by just one day (a day when nothing else was required of me and I wasn’t putting off other responsibilities). I am really glad to have that back, and I can see that books will remain important to me for reasons beyond the story.

Just like brushing your teeth

One of my friends recently asked me how best to manage a chronic condition.

During the transition between noncompliance and acceptance, I clearly remember that all I wanted was to get to the point where I could relegate my regimen to a tiny corner of my life. I would be “normal” and it would become so easy and routine that the whole thing would take up no more of my attention every day than, say, brushing my teeth. I’m here to tell you it’s possible!

Well, sometimes.

For a little while, anyway. Or even a long while.

The reality is that it is possible, but it’s hard to maintain. You can go for years sticking to the plan you and your providers have devised. For me, that means nutrition plan, exercise plan, logging everything (logging covers different categories for different people -- symptoms, blood sugars, food intake, whatever information you need to understand the patterns of your condition), and several appointments every year. And when I’m on it, I’m really on. I feel strong and powerful, motivated, and present in all aspects of my life.

But then your condition begins to feel neglected, so it starts to have a tantrum to make you pay attention again. After all, no one likes being relegated to a brief bathroom routine twice a day. You get sick, or your biorhythms change (mine tend to do that as soon as I have settled into the right insulin dosage), or some event in your life overwhelms you with stress – difficult project, death in the family, it could be anything, really. That powerful feeling begins to fade, and your energy goes with it. You start to channel the energy you have into surviving that situation, and the easiest place to draw from is the voluntaires – the time you take to exercise or monitor or whatever it is you do to care for your condition. You say to yourself, “I will go back to it as soon as X is over.”

I went through this very recently. In fact, I’m just starting to get my feet under me. For two years, I followed my regimen so closely, I lost 30 pounds and my kidney disease started to actually get better (this never happens). Then I faced a situation where I had to take a project at work that I didn’t want. It was either that or lose my job. And my health insurance.

I told my boss on my first day that the situation was not going to be sustainable due to the location, commute, and an overtly hostile work environment. First, I stopped cooking, which was fine because I could always use frozen meals. Then, I stopped exercising because I was just so tired when I came home, I needed to catch up on sleep. (It’s not healthy to exercise when you’re exhausted, is it?) Finally, after about six weeks, the stress finally started to get to me. My blood sugars started swinging, which made me feel sick. There’s no predictability to how stress will affect blood sugar, so you’re always running to catch up. Functional is about all I could manage at that point. It got so bad that I asked one of my providers to write a letter stating that I absolutely could not work in that environment past a given date.

In real life, there is no way to stop the clock and hit reset. You still have your job, your family, your house, your car, school, whatever myriad responsibilities take up all of your time. Recovery has to be one baby step at a time. It’s taken me three months to get back to about 50% level of effort, as they say in my industry. I go back and forth on the nutrition plan. I cook, but I can’t stay away from sweets. I exercise the way I did at the beginning of my good stretch – cardio only. I have given up logging altogether.

The only element I still follow to the letter is seeing my providers. In fact, I have asked them to shorten the time between visits from four or six months to three. I need the external motivation, and they need to know what is happening. I expect that there will be a considerable delayed impact to my bloodwork. I live in fear of my kidneys regressing. However, I will not borrow trouble.

Instead, I will adjust. I went from little exercise to cardio and weights five times a week (exercise is the magic elixir for blood sugar control). I can do it again. I went from eating out half the time to cooking all but twice a week. I can do that again, too. I may not go back to logging, at least not formally. I hate it too much, so I would rather spend my effort on the first two right now. The other thing I will not do is dwell on the progress I have lost. What’s the point?

No, I will keep dragging my monster up the mountain one baby step at a time. One foot in front of the other until I reach peak performance once again. I will hand it my toothbrush and enjoy the view until I fall again.

To ER or Not to ER

When I was in high school, my mom made one of many trips to the emergency room (ER) with a blocked intestine due to Crohn’s Disease. This visit was particularly memorable because her doctor was out of town and the ER staff was inexperienced in what was then a fairly new treatment – total parenteral nutrition. They inserted the line into her vein in the wrong direction. Let’s just say it was painful and unpleasant.

When her doctor returned, he told her that if she ever had to go to the ER while he was away again, she could tell them how to treat her and they would be legally obligated to do that. I have often wondered how that would work since it is only lately that providers have started really including patients in treatment discussions. (Let’s face it, ER doctors in the mid-1990s would have not taken patient instructions well. Even now it would be . . . unwelcome.) I’ve researched the doctor’s advice from time to time, but could never find a legal authority a process like that would fall under. It took a combination of laws and a discussion with a friend to figure out how it would work.

EMTALA*

The first part of this process is a bit of history, unless you are one of the 15% of chronic and autoimmune patients that still don’t have health insurance. For that 15% and the insecurity of the future of healthcare at this moment, I’d like to introduce you to the Emergency Medical Treatment and Labor Act (EMTALA), which bars hospitals from turning patients away if they can’t pay. (Keep in mind that this story takes place in the 1990s, when uninsured rates were much higher.)

Back then, and even now without insurance, ERs are not obligated to treat us unless we are about to die. It’s a common misconception that EMTALA says that all you have to do is get to an emergency room and they will fix you up. First, EMTALA only applies to hospitals that participate in Medicare. Second, the emergency room is only obligated to screen you for an immediately life-threatening condition and stabilize you.

That being said, EMTALA still has some juice if you are experiencing an emergency. Pair it with the next law, and you should be able to get what you need.

The Doctrine of Informed Consent

If you do decide that the ER is the best way to go, arm yourself with knowledge of the doctrine of informed consent. Basically, it means that, as long as you are mentally competent, you can refuse any treatment the emergency room proposes.

In my mom’s case, that means that if the ER doctor was not inclined to treat her the way she wanted (I believe a blocked intestine qualifies as a immediately life-threatening condition), she could keep refusing until they arrived at the right treatment for her. Or at least they were prohibited from subjecting her to a treatment she didn’t want.

There are definitely times when the ER is your only option for a chronic or autoimmune condition in crisis (i.e. the “cardiac incident” I had once because I messed up on my own medication and almost stopped breathing at work, but that’s a story for another day.) But in my experience, rushing, overworked staffs that have to literally work miracles with what they have, are an option of last resort, to be avoided unless a call to your provider (or whoever’s on call) results in an inadequate or unsuccessful course of treatment.

If you have to go, keep in mind that you are not entirely at the mercy of providers you don’t know. It’s hard to speak up for yourself in a situation so bad that it requires an ER visit, but you know what’s best for you and you have a right to receive the care you know you need.

P.S. Informed consent applies to all care – surgery, therapy, treatments prescribed by your provider in his or her office. If you don’t like the direction in which your care is going, you can always say no and discuss an alternative.

*(no, you didn’t miss a character in the Lion King.)

Show Up

Every election is determined by the people who show up.

 – Larry J. Sabato, Founder and Director of the University of Virginia’s Center for Politics

I have a confession to make. I love politics. The strategy, the motives, the players. It has always been a favorite challenge to take what a politician says and strip it to its fundamental message. If I can do that, I can see where we are headed. I am aware of what kind of weirdo that makes me. Good thing I live in a city where we are all that kind of weirdo.

It’s harder now. Everything changes fast, and the politicians I was sure of (on both sides of the aisle) are no longer who I thought they were. But our system is stronger than a few years of turmoil. The good news is that we can change things if we are unhappy with them. The bad news is how often we don’t.

I think we look toward Washington and all we see is hallowed halls of power, “the swamp.” We tend to forget that we are the ones who put them there. We are the ones who pay their salaries. We are the ones who can fire them.

If we’re so unhappy, why don’t we fire them?

•  We hate Congress, but love our Congresspeople. We love them just because they’re ours. Most of the time, we have no idea what they have voted for or against, or what kind of impact their actions have had. If we can’t look past the surface of our Congresspeople, we will remain stuck with ever-worsening gridlock until it breaks the system. For those of you who don’t think that’s such a bad thing, consider what will come to fill the vacuum. Time to start thinking about whether your representatives have done what you wanted them to do.
• The states. The state we live in controls how we vote, for both state and federal lawmakers. Many of these states have unfairly gerrymandered districts, discriminatory voter ID laws, selectively limited polling places, and several other ways to keep you from casting your ballot.
• We don’t show up. In the latest presidential election year, turnout was about 60%. The 2014 midterms didn’t even break 40%. Whether it’s apathy, time constraints, distrust of the system, or any one of a million other reasons, we just can’t make it, so we end up with something far from majority rule.

Speaking only for myself, all I want is a level playing field. If the majority of voters in this country is on one side of an issue, that’s the policy we should have. A level playing field shouldn’t mean the majority of who shows up, it should be the majority of all of us. But our lawmakers know that we don’t have the time to pay close enough attention to hold them responsible when they vote against our interests. Some of them count on that.

How does this apply to healthcare?

One of the greatest gifts the Affordable Care Act (ACA, or Obamacare) has given us is a change in perspective. Despite it’s unpopularity when first enacted, in an incredibly short time (eight years), American collective consciousness has come to view good health not so much as the benefit of a good perk at work, but as a fundamental right. There’s a reason the Declaration of Independence lists “life” first among the unalienable rights.

Many of the lawmakers in office right now aren’t going to protect our right to healthcare. Having failed an outright repeal of the ACA, they have decimated its funding and plan to allow states to offer plans that gut the 10 essential health benefits that assure we won’t go bankrupt from our medical bills, among other things.

There is a solution.

To borrow a phrase, vote them out. If your Congressman or Senator is one of the ones not listening to the majority who want healthcare protected, fire them as you would any other employee who refuses to put your priorities first. Register. Get your family and friends to register. Explain to them that we can’t allow ourselves to be represented by people who can hear our stories and still refuse to do everything in their power to protect our right to live.

I am not saying that everyone has to jump wholeheartedly on the ACA bandwagon. It was never a perfect solution to a complicated problem. But it’s what we have, so it’s where we start (not with rescinding CHIP funding and funds to help with patient delivery systems).

Primary season for the 2018 midterms has started. If you would like to register to vote, or help others register to vote, the following can help:

• For voter registration deadlines by state: https://www.vote.org/voter-registration-deadlines/
•  To make sure you are registered to vote in your state: https://www.headcount.org/verify-voter-registration/
•  For our first-time-eligible voters: https://www.18by18.vote/
• https://www.letamericavote.org/
• https://www.headcount.org/organizations/
• https://www.vote.org/

Oh, For The Love of Cheesecake

I was about halfway through writing this week’s post and making something for the office bake-off when I realized that it would have been my mother’s 69th birthday today. Not only that, but the thing I was baking was her secret recipe cheesecake, which I hope will win me a glitter-covered wooden spoon tomorrow. (I swear you’ve never tasted anything like it. The cake, not the spoon.)

Instead of finishing the article, I would like to take the time to pay attention to how I feel right now. Mom was a chronic patient herself and an integral part of my development as a self-advocating patient. I miss her every day. Sometimes it’s gentle, happy memories, and sometimes, like today, it’s sharp and sad.

In the past, I would beat sadness into submission. It was a defense mechanism once. I have a lot of those, even though I don’t need most of them anymore. The problem is I don’t know what to do with them now. I don’t enjoy letting my emotions out to play. It doesn’t feel good and I don’t really know how. But delaying the emotional inevitable works about as well as neglecting the upkeep on your car. There’s always a reckoning.

So, please forgive the delay. For the first time in a long time, I want to see what happens if I just sit here and let myself feel.

Reluctant Parent of an Unruly Medical Condition

I went to happy hour last night. That shouldn’t be such a statement, but it became one when I realized I hadn’t gone to a non-work happy hour in forever.

I am lucky to have all kinds of friends – single, married, divorced, with kids and without. On the way home I found myself asking a question I had heard from most, if not all of the parents: where has my social life gone? My job didn’t require overtime, and this blog isn’t overly burdensome. No, it wasn’t those. It was the giant monster-baby in the room – my condition. And that’s exactly what it was. My monster, which had seemed manageable in adulthood, had regressed into a big baby. Before it had been something of a companion, now it was somewhere between an infant and a toddler. I have to feed it. It wakes me up in the middle of the night, interrupts grown-up activities, and acts out when ignored. I don’t even get baby hugs to balance the frustration (Just because I didn’t want kids doesn’t mean I’m not close to several. I know the value of a good baby hug, even if it is a monster-baby.)

Like so many other chronic conditions, this one can just suck your time and energy. Even before I went off the rails of my regimen, I spent hours a day exercising, logging food, and meal planning. I sacrificed an entire half of my weekend every week to make sure I had healthy meals for the week. And if my control didn’t fall into the right range, the first symptom was exhaustion. Who wants to go out when you can barely make it through the work day?

Time and energy aside, I had another issue many parents – and chronic patients – experience. When parents’ focus changes to their kids and when people who weren’t sick before suddenly are, sometimes people disappear. They don’t know how to fit in to their friends’ new reality, whether it is a baby or a condition. They don’t know what to say. I didn’t really notice when I needed all the time I could get to wrestle myself back in the right direction. But as I have gotten better, I have realized that several people I used to see regularly have disappeared -- complete radio silence for six months or more. I can honestly say that’s never happened before.

Turns out I’m the communicator. With a few notable exceptions, I’m the one always reaching out to friends to see how everyone is doing, to initiate plans to hang out, and even verify that they are still free for whatever event it is. As I struggled, I had even less time and energy than usual, and my outreach fell by the medical wayside and I lost touch with many of them. I reached out to the ones I missed and let go of the ones I didn’t.

Perhaps it was a blessing. As with everyone else who consider themselves spoonies, my time and energy are very limited. Maybe I was wasting it on people who weren’t true members of my support network when I needed them. But that left me with just a handful of options to get myself out of my apartment, and social isolation can feed the negative emotions I was pulling myself out of.

For parents of human babies, this kind of gap is often filled by other parents, with whom they now have a lot in common. It’s a little harder to find the other parents of monster-babies. Can’t really tell by who’s pushing a stroller, and I know most of my existing friends don’t have one. I’m working on that, trying to expand into my local patient advocate community. Until then I will stick to the ones who are willing to support me while I try to corral my tantrum-throwing monster-baby and trek back to my life.