Mourning Meredith

Unfair. The only thing I can think is that it’s so unfair.

Meredith Farrell had so much to accomplish and so much to offer the world. Even while horribly ill and suffering terribly, she did so much and touched so many people. Just imagine what she could have done with her full strength!

I met Meredith when I joined Nina and Danny Butler (another family who knows all about unfair) for a Pesach meal a few years ago. Meredith had an immunodeficiency disorder that made her unable to fight off pneumonia, and she was waiting for a lung transplant due to significant, irreversible lung damage. We bonded over medical issues, and became Facebook friends. I followed her story through her blog and Facebook updates, but honestly did not make a significant effort to be more in touch – because I was scared. I’d already lost people I loved to serious medical issues, and I was afraid to go through that pain again, and the frightening foreshadowing of my own future that accompanies it. But I watched, and prayed, and hoped for the best.

Meredith went through such hell, both before and after transplant. She waited so long, and was so, SO sick before finally getting that long-awaited lung transplant. And then eventually she got a second transplant from the same donor, this time bone marrow, in the hopes that it would address the immunodeficiency disorder and increase the likelihood of the lung transplant being successful. With both transplants, she struggled with complication after complication, often painfully, and was repeatedly hospitalized. During the last couple years it seemed she spent more time in the hospital than out of it. I knew things had been getting worse recently, and I had the horrible thought that she probably wasn’t going to make it. I just didn’t realize it would be this soon.

I hate how much she suffered, and for how long, especially for it to end like this. I hate that her bright and loving spirit was snuffed out far too soon. I hate that there are so many more things that she could have done and accomplished and experienced, but never will.

And I fear. I fear the day when I’ll be the inspiring one fighting tooth and nail against an almost hopeless situation. I fear watching my world get smaller and smaller as my life dwindles down to just trying to survive another day. I fear trying everything, pulling out all the stops, desperately holding on in the hopes of a successful treatment or transplant and a new lease on life – only to ultimately fail. If someone could tell me “It will be excruciating, but in the end it will be worth it,” I could probably persevere. Or if someone could tell me, “There is nothing else you can do,” I could accept and cope with that, and die with dignity on my own terms. But no one can tell me either of those things. Instead, I’ll have to fight and gamble and hope, never knowing whether or not it will actually get me anywhere. And that is terrifying.

It’s. Not. Fair.


To learn more about Meredith’s life, visit her blog at friendsofmeredith.wordpress.com

Disabled Life

Being disabled is surprisingly exhausting.

First there are all the appointments. Right now I have 3-4 appointments every week, 2 of which are 2-hour pulmonary rehab sessions. Lately I’ve also been having additional appointments with specialists about twice a month, so I might be running to 5 or 6 appointments in one week. You’d think being disabled would mean my schedule is wide open, but all too often it’s jam packed!

Then there are all the phone calls and applications. To insurance companies, to pharmacies, to patient assistance programs. I spent about 3 hours this week completing and gathering documentation for just 2 patient assistance applications. Fortunately I’m hyper-organized and was able to find all the necessary documentation relatively easily, otherwise it would’ve taken even longer!

Then, of course, I still have to manage all the regular-person activities: groceries, laundry, etc.

Meanwhile, I’m not exactly brimming with energy. Each of these tasks can take a lot out of me, depending on the day. So I do my best to scatter them throughout the week, and I try not to schedule more than 1 big task per day. Also, some activities that most people don’t even think about are actually energy-draining tasks for me that require planning and calculation. For example, most people probably don’t think that much about showering. Either you shower or you don’t! But for me, showering can be an exhausting, energy-sapping task. So I have to calculate: How am I breathing today? Am I up for a shower? If I shower now, will I still have energy for pulmonary rehab later? How much time will I need to recover after my shower? I have to figure out all the variables, decide how much energy I have to spend and how I want to use it. I do these kind of calculations constantly, every single day. And that alone is exhausting.

It’s also very stressful. It feels like there’s always another appointment I need to go to, another call to make, another application to fill out. And then all my limited energy is sucked up by these necessary tasks, and I have nothing left to actually enjoy life with. I realized recently that my chore to fun ratio was severely imbalanced, and it was making me stressed and depressed. I need to do more than just stay alive – the problem is, sometimes just staying alive is a full-time job!

Fortunately, my health has been holding steady the last few weeks. My pulmonary function numbers are the best they’ve been since August 2017, and I seem to be holding it together even with slooowly tapering down the Prednisone. I’m breathing and walking better than I have all winter, and that makes everything so much easier. And I’m SO grateful for it! Hopefully I’ll be able to take advantage of this current round of decent health, for however long it lasts, and fill my tank with good experiences to get me through the next rough patch!

(For a great explanation of what it’s like to live with a chronic illness and constantly make those energy calculations, check out Christine Miserandino’s Spoon Theory: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)