As some of you know, I am currently looking for a job. I am lucky in that I can afford to take some time and look for the right one, at least for a while. In the last few months, I have thought a lot about what that is. After dozens of calls with people who have helped me explore the healthcare universe, I have decided that I want my next step to be something where patient advocacy and public policy intersect. It’s a bit of a niche right now, but based on what my new network is saying, patient involvement in a lot of aspects of healthcare is on the verge of having a moment.
Read moreGrowing Up Is Hard To Do
My friend and fellow patient advocate, Casey Quinlan, recently wrote an article about preparing to move from minor patient to adult patient. It’s a great article with a lot of good steps to follow in order to go from pediatric specialists to adult specialists, keeping track of and taking responsibility for your records, and planning so all of that takes place deliberately and not bass ackward, as my grandpa would have said.
But as I was reading it, my first thought was that, though I was the target audience, my transition was a lot messier than steps and plans could handle.
Read moreHome Stretch
I voted! As so many have this year, I requested a mail-in ballot. I printed it out as soon as I got it, and as so many have also done, I procrastinated. My dad, from whom I learned procrastination, didn’t. Instead of waiting for a time when it was convenient to drive over to the ballot drop-off box, he made a special trip. He called me right after. He said he cried when he put the ballot in the box. I understood, but thought it was a little silly. Until I finally made my own trip to drop off my ballot. I was not expecting that lump in my throat.
Read moreWorst in A While
I am an experienced diabetic. It will be 30 years on April 1, 2021. (No joke. I was released from the hospital on April 1st, 1991, so I count that the start of my journey, and it feels appropriate.) I am also a bit of a boundary pusher, so I am pretty good at anticipating the results of my own behavior. That does not mean that I am not thrown for a loop every once in a while.
That loop came in the worst way last night.
Read moreUpside Downside
This is an unusual election season. Beyond the politics, the logistics have been a nightmare. With just months of warning, every state has had to make accommodations for the guidelines dictated by the pandemic, so there has been expanded mail-in voting (same as absentee voting) and expanded early voting, both of which would be necessary to alleviate the packed poling places that usually occur during a presidential election year. They are even more necessary with voter turnout expected to break records this cycle. As I write this, 20 million people have already cast their votes.
Read moreFear Out Loud
A couple of weeks ago was Yom Kippur, the most serious of the Jewish holidays, a time of contemplation and repentance. We take time for reflection, acknowledgement of our shortcomings and express our hope that the coming year will be a better one.
Aside from a truly brave and uncommon self-assessment of one of the rabbi’s biggest lifelong shortcomings, the services and the sermons focused on finding new ways of coming together as a community, web-based and socially distanced activities you can participate in to maintain your connections, and how important that is in a pandemic reality
Read moreBracing for Shoes
I was recently talking to a friend who asked me about something. I knew immediately what this person was talking about. It’s a subconscious state of mind that has slithered into my life outlook. I am sure patients with other chronic and autoimmune conditions deal with it, too: I don’t trust my body.
Read moreS.O.S.
Ruth Bader Ginsburg, fierce opponent of injustice, has died. She was 87, had survived three kinds of cancer, but finally succumbed to the same thing that took my mother, metastatic pancreatic cancer. When I found out 80 minutes into our New Year, at 8:01 p.m. (Jewish New Year starts at sundown), my optimism died.
Of course I mourn her, but not just as I would any iconic octogenarian who had lived an extraordinary life. I mourn her as our gatekeeper. Not always, but often, the courts have been the last line of defense against the wilder policy spasms of this administration, and the Supreme Court is the ultimate stopper. Upon learning of her death, my immediate thought was, what happens to us now?
Read moreTime Out: Part Two
I recently received an email from a friend who is part of the chronic pain community. In one of her Facebook groups, someone had posted the text of a bill that had been introduced in the U.S. House of Representatives. She sent it to me and asked how she should respond. When I looked, I knew immediately that it was a ridiculous bill and that it wasn’t going anywhere, but my friend’s comrades were, to use a phrase, freaking out.
Read moreTime Out: Part One
I think all of us know this election year is not like other election years. It already feels like we’re on a runaway roller coaster – we know if we just puke up the last four years we will all feel better – and we still have weeks to go before there will be even a hope of relief. But even our hope of relief is going to be a test of patience as we wait for mail-in ballots to be counted.
As our anxiety mounts, my own side seems to be making it worse through hysterical (and not the good kind of hysterical) fundraising texts and emails. That’s right, this is what you get for a generous contribution in the midst of an economic crisis – the beneficiaries are setting your hair on fire.
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