Last Friday

I’m lying in the infusion center drifting in and out of sleep.  This is good.  It means that the previous day’s four-hour infusion of magnesium sulfate has helped keep the migraine and nausea from the IVIG sufficiently under control so that the drugs we use for controlling these side effects are working well.

Sometimes I’m so miserable from the side effects that nothing much penetrates.  I felt that way yesterday during the magnesium sulfate infusion. But today is different.  Today I feel held, almost cradled.

Three weeks ago I started attending our church’s healing Eucharist in the middle of the week.  The first time I went directly from Olga’s office to the service.  And I discovered horses that were almost zebras.  Everyone there needed healing of some sort.  Some of us had life-threatening illnesses, while others had anxieties or life changes that loomed large.  And each of us needed to feel relief from our sense of isolation, to feel in some way connected to others.

After Eucharist is over each week we move to the healing part of the service; the asking for prayers for specific needs, and the laying on of hands.  Many hands and many hearts.  The first week I felt so terrible that all I could do was cry and ask for prayers.  I just moved from crying and praying in Olga’s office to crying and praying during the service. The other weeks I felt stronger and could participate in praying for others.  And those weeks I found that I was connected to the others in the group even more strongly.

And this past Wednesday was good.  So many of us with needs and wanting to be there before Olga left for her three-month sabbatical.  And so many of us who could pray for others and be active participants in their healing.

There were several whose struggles mirrored my own, past or present, and for whom I could give voice to prayer with deep empathy.  The woman whose physical injury was taking a long time to heal, the gentleman who was struggling with forgiveness, and the mother with her young infant who was facing medical problems and was concerned about her baby.  I’ve been to every one of those places, and I know how hard it is to be there.  So I could pray and assure them that they were not alone.

And that’s the key for us zebras, I think: knowing that we are not alone.  Those of us with one of the various Primary Immune Deficiencies are faced with a world in which even our doctors, other than our immunologists, have never head of our disease until we arrive.  It is wearying, explaining to each one of my other specialists what Common Variable Immune Deficiency is.

But I am lying here, this Friday, under the care of my fabulous nurses, feeling nurtured, both from their care and Wednesday’s prayers.  My prayer shawl is long enough to not only drape securely around my shoulders and legs when I’m sitting up, but to cover me when I’m lying down.  My heart remembers wrapping it around both myself and the new mother and her baby on Wednesday after the service and assuring her that she was not the first person to walk this path, and that I knew how difficult it was.  I remember all the people from the service who said they would carry me in prayer on Friday during the infusion.  I touch the prayer shawl as it covers me and no longer feel isolated, but held. And the medications, for once effectively controlling the side effects of the infusion, together with the sense of being carried, allow me to drift in and out of an exhausted sleep, in which I know that I do not have to do this alone.

4 thoughts on “Last Friday”

  1. Hi, I’m new to the CVID community. My 11 year old son was just diagnosed after years of him being sick and just not bouncing back like the other kids. I’m trying to figure out where the term zebras come from in relation to CVID. Where did it come from? We’re wading our way through learning about the condition, weighing the options, dealing with the insurance company, and most difficult of all, dealing with the middle school he will be attending next year. His immunologist provided them with a detailed letter explaining his conditions and how they impact his life, as well as his need for accomodations, but they refuse to provide any accomodations. As if it’s not enough to deal with the illness, the school district throws up hurdle after hurdle in my efforts to create a safe environment for him to learn in. Thanks for having a place to connect. Would love to understand the zebra thing.

    1. Hi Rhonda. I’m glad you found the site and hope you will find it helpful.

      First, the zebra thing. All first year med school students in the country are told, “If you hear hoof-beats, think horses, not zebras.” In other words, if a patient presents with symptoms, the cause is almost always the obvious one. Don’t first look for all the rare causes. Upwards of 90% of patients are horses. The rest of us with rare conditions are zebras. My primary care doctor even says, “You’re a zebra.” For a little more info on it, look at my first post. Look at the top of the home page and click of the “About” tab. It will give you information on me as well as a link to my first post.

      Secondly, dealing with school districts can sometimes be difficult. It helps if you have some clues on how to navigate it. California has laws in place that say accommodations must be made not only for students with learning disabilities but for students with physical disabilities as well. I do not know how much of that is state law and how much of it is federal law. I would recommend Googling something like “students with disabilities” and also doing a search for the same thing on your state’s website. Also, you could seek out info on the Americans With Disabilities Act. Finally, you might try contacting your city’s public health office. I do not know what help they will be able to give you, and I’m pretty sure it might involved several frustrating hours on the phone, but it will probably be worth it.

      I would also recommend going on to the Immune Deficiency Foundation’s website They provide a wealth of information, as well as forums to chat with other immune deficient folks. They also have a magazine which is free.

      This journey is a long one, and one that changes. I’m glad your son has finally been diagnosed because now you can seek treatment. Welcome to the website and please feel free to comment anytime.

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