As the world burns

My country is burning, and I don’t know what to do.

I mostly avoid posting about current events or politics – partially due to mental and physical exhaustion, partially because it feels like an exercise in futility. But the current situation is so profound that it feels wrong to be silent. Silence is complicity, and I refuse to be complicit.

It’s so easy for those of us who are insulated from or unaffected by racial discrimination to point fingers and decry the violence that has erupted. But did we also decry the violence that brought things to this boiling point? Did we also take a stand against lifetimes of inequality and oppression, and one senseless death after the next? Why is it only NOW that so many people suddenly feel the need to speak up and condemn? I certainly don’t agree with violent riots, but part of me definitely understands them. It’s very nice to talk about peaceful protests, but people have been protesting peacefully for decades, and little has changed. When peaceful protests are ignored, violent protests follow. Violence is tragic, but it certainly forces an immediate response.

At the same time, it’s extremely frustrating to watch the narrative get hijacked. I watched the news tonight, and most of the reporting focused on looting and vandalism, while the actual protests and the cause they champion seemed to fade into the background. It’s infuriating that activists who are actually seeking justice are being ignored in favor of individuals who are simply using the cause as an excuse to sow chaos for their own personal gain.

I look at the world, and I feel a terrible hopeless cynicism. The problems are so big, so deeply entrenched, that they feel insurmountable. I despair when I see the chasms dividing our country, how quick people are to villainize and discredit everyone they disagree with, how little effort there is to open real dialogue and attempt to build bridges. Even as the country burns, I still can’t see change happening. I just see everyone backing further into their corners and doubling down on everything they already believe. I watch and I wonder how long we can go on like this, how much more we can withstand before society collapses into irreparable lawless chaos.

The world is sick, and I feel the need to do something to help heal it. But I also feel small and helpless, immobilized by my limitations. I can barely leave my apartment, much less go to protests or join in community work. So I watch, and despair, and pray that someone else will do the work for me. And soon even that will become too much, so I’ll close my eyes again, and turn away from the pain and tragedies that I am currently powerless change.

I will retreat back into silence, but it’s not because I don’t care. It’s because I care too much.

Happy Lungiversary to me!

It’s officially been 1 year since my successful double lung transplant! Happy lungiversary to me!!

The last few months have been emotionally intense. Obviously the whole world is in crisis right now, and everyone is struggling and suffering in various ways. I have the added bonus of being in a high risk category and getting to worry about yet another threat on the long list of things that could kill me. But in addition to that, I’ve spent a lot of time remembering what life was like last year during the months leading up to transplant. Thankfully my memories of what it was like to be slowly suffocating to death are faded, and most of that whole time period is a bit of a blur. But I do still remember that it was horrible to the point that I wished for death just so the suffering would end. During these last few months I kept thinking about where I was a year earlier, and being a little traumatized by the memories. It’s been worse during the last couple weeks, which is when I struggled the most and went into respiratory failure last year. Getting a taste of a slow and painful death takes more than a year to get over.

But on May 12^th the memories were different. I remembered getting the news, and calling Katherine and my mom to tell them. I remembered waiting to be brought down to surgery, and then going down to pre-op. My memories of that day are also hazy, but at some point in the ICU afterwards I asked how long the surgery took, and wrote down all the times. 2:19 PM – into the OR. 4 PM – anesthesia. 6 PM – first cut. 12:17 AM – out of the OR. And 6:15 PM on May 13^th, less than 24 hours after surgery – taken off the ventilator and extubated.

I didn’t have any sort of major celebration right after the transplant for multiple reasons. The immediate aftermath of a lung transplant is a crazy whirlwind of pulmonary rehab and testing and doctor’s appointments. It’s exhausting and stressful and painful, and putting together a party was not on my priority list. Due to heavy immunosuppression I also couldn’t be in crowded spaces, which makes it a little difficult to host anything. But most importantly, I was well aware that the first year after transplant is a critical and tenuous time, and I didn’t feel comfortable celebrating until I saw how things went.

As we got closer to the year mark with relatively smooth sailing, I started considering whether I should have a party on the actual lungiversary, or wait a month or 2 for my immunosuppression to be lowered so I could be around more people. Never did I imagine that all in-person gatherings would be cancelled anyway by a global pandemic! Initially I was too upset to plan any sort of celebration. Having life basically be cancelled and being cooped up in my apartment week after week with no end in sight didn’t exactly have me in a festive frame of mind. But as the date came closer, I started to wonder… Maybe we could do a drive-by celebration, as has become popular these days? Maybe a Zoom party? Maybe both?? So I flung it out to Facebook, and the enthusiastic response convinced me to go for it. And I’m so glad I did!! It was so wonderful to see everyone who turned out, both in-person (at a social distance of course!) and online. The car parade in particular was wonderful fun and really got me into a celebratory frame of mind! I got balloons and streamers, and printed posters for my balcony, and baked my specialty lung-shaped cookies for the occasion. Seeing everyone drive by cheering and honking, waving posters, streamers and balloons blowing in the wind, was absolutely amazing! And then I ended up on the news to boot! What an amazing way to celebrate the incredible gift of life!!

At the same time, I’m also keenly aware that while we’re celebrating, somewhere out there another family is mourning. Somewhere out there another family is coping with death instead of celebrating life, and remembering the tragic loss of their loved one. This is the duality of transplant: my life could only be saved if someone else died. I am so endlessly grateful to my donor and their family, and I will never forget their pain and loss. I will always wish there had been some other way.

One year. It’s amazing how much can change in just one year! I’m still recovering, and COVID-19 has thrown unexpected complications into that process. And of course life after lung transplant is never guaranteed, and I will always live with a certain amount of fear and caution and what-ifs hanging over my head. But, against all odds, somehow at 41 years old I’m still here, still laughing, loving, and celebrating. And hopefully I’ll have the opportunity to celebrate many more lungiversaries for many years to come!

I'm famous!

We did a drive-by celebration for my 1 year transplant anniversary, and Channel 10 showed up! They even interviewed me, and I got to talk about the importance of organ donation. It wasn't the celebration I expected, but we did the best we could under the circumstances and I ended up having a terrific time!

A friend also wrote a lovely article about me for a local paper, the Jewish Community Voice:

Transplant recipient marks her one year lungiversary with socially distanced celebration

I'm officially famous!