Tuesday, October 23, 2012

Calamity makes cousins of us all

Sato is scared of Halloween
October is flying by, and I just got back from a quick visit to Texas (where it was still 80 degrees. Seriously, our jack-o-lanterns have already rotted from the heat.) Shaina is on a new antibiotic that seems to be making her pretty sick. She's not feeling well, some of her liver numbers are rising, and today she received a higher MELD score, but she's somewhat stable for the time being.

As she's spent the last several years going back and forth to the transplant clinic and various stays on the transplant floor at Baylor hospital, Shaina has gotten to know quite a few fellow transplant recipients. These recipients share a special bond, they've experienced something that the rest of us will never understand. They have lived to the brink of death, often more than once, and had a piece of their own body removed and replaced with someone else's. Only these patients know what the transplant process is truly like, how it changes you in both obvious and unspeakable ways. It's an exclusive club that no one joins by choice, only necessity.  

It's the young transplant friends of Shaina's who really get to us. We're glad that she has people her own age who can actually relate to what she's been through, even if they come from totally different worlds and have nothing else in common. They can talk about the pain. Bad labs. Medical procedures. Family drama. They know better than anyone how precious our time is. Transplant recipients love life. They are wise well beyond their years... especially the ones who got sick young. 

Shaina has watched too many of these friends die. She sits by the hospital bed on their final days. She attends their funerals. She keeps in touch with their families after they are gone. I don't know how she does it. This is her fate, staring back at her from their deathbed. This is a reminder of how quickly her life can take a turn for the worse. 

I asked her why she puts herself through this when I was in Dallas. Shaina had just learned that a transplant friend of hers who is our age just suffered a major complication, her hepatic artery clotted off and she would need a new liver. This has happened to Shaina before. Her friend - who had been fine after her original transplant, who had recently met the man of her dreams and just a few weeks ago gotten married (I couldn't help but feel hopeful for Shaina after hearing that story) - was suddenly hospitalized, her liver failing, she was dying. Overnight she was at the top of the waiting list. Just like that. Shaina reached out to her friend when she found out she had been hospitalized. They texted back and forth for a couple of days. When her friend got too sick to respond, Shaina started checking the blog that her friend's family was updating. 

So when I asked Shaina why she follows these people's cases so closely - it must depress or frighten her somewhere deep inside, right, thinking of all the bad things that could happen to her? Shaina said I was wrong. It doesn't bother her, because she knows what they are going through, and it helps her to have people in her life who know what she is going through, so she hopes she is helping them by being there for them when they are going through the worst of it all.

When I got home from Texas, I started asking Shaina for updates on her friend. And I started checking her friend's family's blog, too. (She's in surgery receiving her new liver right now, by the way.) And you know what? Shaina is right. I feel a connection with this family I've never met. I've never spoken to these people, I don't know what they look like or anything about them. But I know what they are going through as they sit in the surgical waiting room right now. Like the patients themselves, our families share an unfortunate yet distinctly unique bond. We know what it is like to sit by, helpless, watching a loved one get more and more sick. We understand the anxiety and the frustration. We have witnessed a person we love come back from death's door. We have witnessed the miracle of life in a way that others will never understand. 

Shaina's situation has changed everyone in our family. For the better in a lot of ways, for the worse in some. It has affected us physically and mentally. It has made us see the world differently, taken us to different places, given us different priorities and different relationships. After having gone through something that changes so much of you so deeply, sometimes its hard to relate the experience to people in the "real" world. Perhaps that's part of the reason why we start blogs.

But it is somehow comforting to know that there are other families out there who are going through the same thing as ours. No matter how alone you feel in this world, chances are someone out there has lived your struggle. And one way or another, they got through it. In one of my favorite quotes, Saul Williams once wrote "calamity makes cousins of us all." In my opinion, you can't ever have too much family around to help you through the toughest times. 

So today, we stand with Shaina's friend and her family. Our hearts and minds are with you all, our extended family, today - sending strength, love, patience and determination. 

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