Post-transplant day 364. Frozen.
I've been off the air for almost two months. I've been busy with work, with life, with the end of life. And, I must acknowledge, there are some personal problems that are unresolvable right now and which keep me offline. Thankfully, I have April to keep me steady.
To my dismay, I must start this blog entry with expounding on egregious news. After months of me begging all of you to pray for Ellie, she did not recover. In the afternoon of November 5th, she breathed her last. Her death did not come as a surprise, but it's incredibly painful anyway. A week later, I attended her funeral in Miami. Her last boyfriend, Andrew, and I were the only representatives of the CF or transplant patient communities, as far as we could tell. I wish we could have given Ellie a Viking's funeral; it would have been more fitting for a Warrior.
Now, I've had friends die before, but Ellie's death has impacted me like no other. My world is absolutely shattered. Imagine yourself living in a world as big as ours, but fitting inside a blue glass sphere. Then imagine looking up at the sky and seeing cracks appear, then gaps, then jagged holes as large chunks of the world fall away into nothingness. This is how it has been for me since November 5th. It may not help that her death was hot on the heals of Friend Brittany Wood.
The unholy thing about making friends, especially in the CF world, is that you may have to watch them die. And yet to withdraw from the CF world (such as it is; connected mostly by Internet) is to throw in the towel, give up on part of the fight. I won't do that. How can I abandon my friends?
Speaking of friends, I was reconnecting recently with grad-school colleague David Martin. He and I had been talking about transplant via Messenger. We had tentatively set a day to get lunch, but medical problems got in the way. Not mine; HIS. David had a rare blood cancer, and he was going to get a bone marrow transplant. But for some reason nobody can figure out, he took a sudden dive November 11 and he, too, "stepped behind the veil" as one of his friends put it.
So with Ellie's and David's deaths still weighing me down, I came down to Durham and walked into Duke hospital, where it all happens. My last rehab friend, Heather James, is in the ICU there. (A recap: she finally, after 280 days of waiting, got new lungs and liver. She also had a bunch of other stuff done at the same time, so she won't be undergoing anything more than a sinus cleanout after she recovers.) Recovery is taking a while, but she walks a little bit farther each day and she inspires me with how much strength she displays. Heather got her call a week after Ellie's passing and I can't help but feel Ellie had some kind of hand in this.
And yet...I am lost. When the Duke nutritionist asked how I was feeling, I could only tell her that I'm parked in neutral. I'm not feeling *anything*. Like something inside is frozen. The only exception to that is my feelings toward people I love, but even those are a bit blunted.
Tonight, the eve of my transplant anniversary (I was actually being prepped for surgery right now, a year ago), I am reminded how fleeting our connections are. Love each other while you can. It's a wintery night out there, and I'm thankful that I get to cuddle up to my girlfriend and love her with all of what's let of my heart; keeping the emptiness, the frozen emotional wasteland, at arm's length for another night.
I've been off the air for almost two months. I've been busy with work, with life, with the end of life. And, I must acknowledge, there are some personal problems that are unresolvable right now and which keep me offline. Thankfully, I have April to keep me steady.
To my dismay, I must start this blog entry with expounding on egregious news. After months of me begging all of you to pray for Ellie, she did not recover. In the afternoon of November 5th, she breathed her last. Her death did not come as a surprise, but it's incredibly painful anyway. A week later, I attended her funeral in Miami. Her last boyfriend, Andrew, and I were the only representatives of the CF or transplant patient communities, as far as we could tell. I wish we could have given Ellie a Viking's funeral; it would have been more fitting for a Warrior.
Now, I've had friends die before, but Ellie's death has impacted me like no other. My world is absolutely shattered. Imagine yourself living in a world as big as ours, but fitting inside a blue glass sphere. Then imagine looking up at the sky and seeing cracks appear, then gaps, then jagged holes as large chunks of the world fall away into nothingness. This is how it has been for me since November 5th. It may not help that her death was hot on the heals of Friend Brittany Wood.
The unholy thing about making friends, especially in the CF world, is that you may have to watch them die. And yet to withdraw from the CF world (such as it is; connected mostly by Internet) is to throw in the towel, give up on part of the fight. I won't do that. How can I abandon my friends?
Speaking of friends, I was reconnecting recently with grad-school colleague David Martin. He and I had been talking about transplant via Messenger. We had tentatively set a day to get lunch, but medical problems got in the way. Not mine; HIS. David had a rare blood cancer, and he was going to get a bone marrow transplant. But for some reason nobody can figure out, he took a sudden dive November 11 and he, too, "stepped behind the veil" as one of his friends put it.
So with Ellie's and David's deaths still weighing me down, I came down to Durham and walked into Duke hospital, where it all happens. My last rehab friend, Heather James, is in the ICU there. (A recap: she finally, after 280 days of waiting, got new lungs and liver. She also had a bunch of other stuff done at the same time, so she won't be undergoing anything more than a sinus cleanout after she recovers.) Recovery is taking a while, but she walks a little bit farther each day and she inspires me with how much strength she displays. Heather got her call a week after Ellie's passing and I can't help but feel Ellie had some kind of hand in this.
And yet...I am lost. When the Duke nutritionist asked how I was feeling, I could only tell her that I'm parked in neutral. I'm not feeling *anything*. Like something inside is frozen. The only exception to that is my feelings toward people I love, but even those are a bit blunted.
Tonight, the eve of my transplant anniversary (I was actually being prepped for surgery right now, a year ago), I am reminded how fleeting our connections are. Love each other while you can. It's a wintery night out there, and I'm thankful that I get to cuddle up to my girlfriend and love her with all of what's let of my heart; keeping the emptiness, the frozen emotional wasteland, at arm's length for another night.
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