Christian, Invisible Illness, Orthodox Church, Patron Saints, Uncategorized

Guest Post: St. Ksenia

Every time I talk with another Orthodox Christian who has lived with an extreme health concern, I wind up discovering that a saint seems to step forward to help the person through the struggle. I’ve already written a summary post of some of the Patron Saints of AutismThis is the first in an ongoing, occasional series of real-life stories of saints that were there when they were needed.

Please welcome my friend Ksenia Paraskeva Ross as she shares the story of how she came to know today’s saint, St. Ksenia of St. Petersburg (whose feast it is on the New Calendar).

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In 2015 I was pregnant with my tiny little straggler, five years younger than sister #3. I had never really dared to hope for her, since we came so close to losing Anastasia in 2010 to severe alloimmune hemolysis. (This is the thing they try to prevent with the Rhogam shot given to Rh- women whose husbands are Rh+. In my case, I got the shot after my oldest daughter was born, but we both had bled too much and the dose was insufficient so I was sensitized nonetheless. Long story short, all future pregnancies would be increasingly risky and unlikely to succeed.) I had also become suddenly and severely ill with preeclampsia, necessitating Annie’s early birth at 33 weeks, and a long and fraught hospital stay.

Things were going surprisingly well that summer, as I neared the end of the first trimester. I was established with a Maternal Fetal Medicine specialist at OHSU who was optimistic about our prospects and reassuringly cocky about his medical and surgical skills. However I remembered too much to be at ease, and I knew too much to expect things would stay smooth. I found myself looking to a future that would, optimistically, include a lot of time in the hospital getting risky but life-saving in-utero blood transfusions to get the baby to term. I started collecting things to take with me. A blanket, a book, that sort of thing, to arm myself. I wanted a little folding icon–we were Byzantine Catholics, at the time–and in searching for one I found a diptych on Amazon of two Russian female saints that I was not familiar with. Nonetheless I found it fascinating. I bought it, and put it on my desk. Eyeless Matrona of Moscow and intensely staring Ksenia of St. Petersburg looked out at me with their hands raised both in blessing and in warning.

My name was not Ksenia, then. I suppose I should have started with that.

I didn’t know she was considered a sort of patroness of women, or anything like that. I felt sort of sheepish even having the icons. Who were these people to me, anyhow? But I liked them, I felt I needed them.

About a week after the diptych arrived, everything started to fall apart. I hemorrhaged badly, and while the baby survived, her little protective sac had ripped away a little bit, and she was not given good odds of getting much farther. Then they did the first scan to check for anemia from alloimmune hemolysis and found that at only 16 weeks she was already gravely ill and anemic, and needed a blood transfusion to save her life. Well, they can do that now. Only one problem–putting the life-saving transfusion needle through her damaged sac would almost certainly kill her instead of save her. I was sent home to decide in which manner I would like to expect her to die.

I don’t remember much of that week. But at some point my doctor and I both stumbled upon the same paper on MedLine and he called me just as I was about to call him. There is a treatment called IVIG, intravenous immunoglobulin, that can sometimes block the maternal antibodies that attack the fetal blood cells, allowing the baby to generate enough new blood to recover without a transfusion, or at least to postpone the transfusion a few more weeks. I was admitted to the hospital to try this treatment. I can’t even describe the agony–it’s pretty brutal to anyone but the nurse messed up and accelerated my infusion to twice the speed it was meant to be. I had aseptic meningitis from it, the most ungodly intense pain I have ever felt. I would black out from the pain just trying to lift my head in bed.

And then I got another treatment the next day.

And then there was a scan, which showed it might be working.

So I went back the next week. And the week after that. And so on, for four months. For 22 successful IV placements (and more than twice as many failures) and a weekly dose of benedryl and the feeling of incipient flu and migraine. But it kept working. It worked better than anyone had ever seen it work before. And she went from being expected to die within a week, to being expected to be born healthy at term. Oh yes at great cost–every Sunday my family would head to liturgy at the Byzantine Catholic church, and I would head to the infusion center in NW Portland and hope that a vein would hold for the full 6 hours. But it worked, and that’s all I cared about, of course.

And then I got sick again. A few days before Christmas I woke up feeling like I could barely breathe, with a pounding headache and a sense that death was upon me. My blood pressure was 179/105, flat on my back. I was sent to the hospital and kept begging the nurses to put me in a room with a window that opened. I could feel death sitting on my chest, choking me out.

But my baby was born that afternoon, pink and healthy, though very small. Perfect and soft faced and strong, with a loud, beautiful cry. And while she had to live there at OHSU for a couple of weeks, and get some fresh blood and strong lights, she thrived. She was never really in peril after her birth, as poor Annie had been. I had taken the blows for her, and thank God for that.

I was grateful but relief is not forthcoming after having so many close shaves. You never know, anymore, when the next one is coming. I could not go back to my old ways. I had been fundamentally changed. And then I saw her again.

It was a painting this time, not a traditional icon. Old and wrinkled, tired and worn, she looked out from a snowy landscape and saw what I had seen. I couldn’t stop thinking of her. I sought out other pictures. Here, she curls up and sleeps in a graveyard. This made sense to me. “To God, all are living”–and she, somehow, must have seen this. She must have been there and touched these things as well. I read of her life. She had loved, she had been a wife, surely she had expected to be a mother, and then it all shattered in her hands. And she couldn’t just go back, after she learned what she learned, she had to always, then, be on the outside of things, be to the side, weeping, staring, saying the wrong thing or the thing that was just too right. I was crushed with depression and still so weak and ill, depleted, I could hardly drag myself across the room. She reached out and produced a cane, identical to hers, and handed it to me.

And I took her name. A lot of people thought I was outright crazy, or consumed by some kind of odd nostalgic Russomania. I took it not even knowing that I would become Orthodox. I took it even though it made, in a lot of ways, absolutely no sense at all to take it. I couldn’t tell anyone why except, weakly, that xenos means foreigner and I like the ks sound. I took it knowing, quietly, to myself, that it was going to take me somewhere I needed to go.

And then she took me by the elbow and we set off on the next part of the pilgrimage.