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.

Auto-immunity, calendar concerns, Celiac, Christian, Chrohn's, Chronic Illness, food allergies, Invisible Illness, Lent, Orthodox Church, Spoonies, Theological Reflection

Rend Your Hearts and Not Your Intestines

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I remember blinking into the bright window at the allergist’s office as he handed over the prescription for my Epi-pens. “Anaphylaxis is a train leaving the station. We have to catch it before it gets going,” he said. I had gone to him after my throat started swelling closed on an ordinary morning. I thought maybe I had developed a peanut allergy because of how dull my breakfast had been: toast with butter and strawberry jam, tea with sugar and milk, and a bite of the peanut butter Lara bar my son handed me. But the allergist was holding a readout with a very strange set of answers. I was allergic to wheat.

The first thing I thought about when I got home was how I was going to commune at church. I inquired of the Lord and immediately heard a word of comfort: Man does not live by bread alone, but by every word that proceeds from the mouth of God. 

I was going to have to overhaul all of my habits and diet and, when the sensitivity got too strong later, my family’s diets. But at least I knew that I was not saying goodbye to God when I said goodbye to bread.

After months of trying to manage with Benadryl and near misses on throat swelling, my priest and I found a way for me to receive communion that allows me to participate in God and stay alive. I have to come to the chalice like one severely ill and have the wine-dipped spoon just touch my lips.

I find it humbling in a good way to come to the hospital for souls and receive communion like someone in the hospital for bodies. In fact, the differences forced on me by food allergies do not cause any spiritual obstacles to me at all. They are a gift, reminding me of the deep love of God who made me and has arranged the challenges and gifts of my life for our salvation.

But there are also external challenges from people who have a hard time believing that food allergies are a big deal. Here are the most common misconceptions and how I’ve navigated them prayerfully through the tradition.

Either God Or Bread–Oops! Casual Heresy

  • The most basic push back when I tell people I cannot eat bread, including the Holy Gifts, is that I am wrong. The Holy Gifts, according to this logic, are either bread and wine OR the Body and Blood of Christ; I cannot have it both ways.
  • #nope: Time warp with me back to St. Irenaeus (or even St. Paul, but Irenaeus is clearer). The gifts of God are given by Him, and we offer them back to Him, and we see that this means that the material world is good. With me? The reason that matters is because…
  • There is no either/or when God comes to us. Our Lord was both fully man and fully God, and the Holy Gifts are both fully God and fully bread. 

***Take-away: You can be allergic to bread without being allergic to God.***

“Marytrdom” and the St. Polycarp Side-eye

  • “Eating blessed bread or Holy Gifts in the Liturgy when you have celiac/allergy can be thought of as a form of martyrdom.”
    • Teensy bit of medical info before the theological importance: Celiac damage is cumulative, so the idea that no harm is done is, well, false. Allergies to wine or wheat have more immediate consequences. All of them cause harm when a person with the condition is exposed to the allergen/gluten.
  • #nope: Time warp back to St. Polycarp. Yes, the beloved and aged bishop who, once he was finally caught, denounced an entire coliseum of Romans as “athiests.” Let’s look at his story and see how many times he deliberately turned himself in for martyrdom. That would be none. And in fact, in the prelude to his martyrdom, we find an illustrative story about how people who zealously went forward to prove themselves by trying to become martyrs wound up chickening out and renouncing the faith when it came to it.
  • Martyrdom is not self-harm. Martyrdom is witness to the truth of the Incarnation and Resurrection. Self-harm undermines witness.
    • Hey, Ms. Early Church Examples Person, what about Ignatius of Antioch, who told people not to rescue him from martyrdom? 1)He was already captured when he wrote his letters, and he wanted his flocks to understand their role in bearing witness with him. 2)He was going to offer himself in language remniscent of the Eucharistic offering in order to bear witness to the Resurrection, not intentionally off himself by eating poisons.

***Take-away: Hurting yourself is not martyrdom. It actually diminishes witness.***

Just Believe the Anaphylaxis Away

  • If you have faith, God won’t let you be hurt by Holy Communion.
  • #nope: Time warp back to our Lord in His 40 day temptation. Yes, that temptation, the model for our own fasting. What did He say about just having faith and doing something you know is harmful? Do not put the Lord your God to the test.
    • Look, I’m an Orthodox Christian. Like most of you, I’ve seen miracles with my own eyes, besides reading about the multitude of miraculous stories in the lives of saints. I’ve even added my “amen” to the Church’s request for them, and seen the energies of God the Holy Spirit change things.
  • The miraculous is normal for us. But that does not mean that we know better than God. If we tell a member of Christ’s Body that they have to prove their faith by asking God to save them from an attempt at harming themselves, we are not being faithful to God. We are not encouraging the brother’s or sister’s faith. By telling other people that they will not be harmed if they do something they know is harmful, we are not showing faith at all. We are being self-centered and trying to comfort ourselves by endangering another. We are saying, “Am I my brother’s keeper?”

***Take-away: Demanding that your brother or sister test God shows lack of faith, and it’s not faithful to God or neighbor.***

Allergy sufferers are not the only Orthodox Christians facing troubles with holy food. Medically fragile persons, persons with feeding tubes, persons with muscular issues, special needs, and mobility issues all might need modifications in how they celebrate with Orthodox cultural foods and, importantly, how they receive the Holy Gifts.

This blog category–Always Lent– is for those of us who, due to medical needs, cannot partake of many of the traditional foods of the Orthodox Church, and for their communities. Some of us cannot even share _in the usual way_ in the Holy Gifts. We are always fasting. It is always Lent for us.

As my husband likes to remind me, some were born eunuchs, and some were made eunuchs. Some were born fasting, and some learn to fast as a discipline.

We who have this gift of being born fasting have two needs that this blog will address: 1) To celebrate the spiritual richness that comes with limited diets. 2) To find ways to participate in the fellowship of the Church in a way that does not harm us. 

Follow this blog for modified recipes and reflections on life when it is Always Lent.