The Things That Really Worked (or at least one of them)

The Things That Really Helped (or at least one of them).

My hospital experience this time was very different than my experience two years ago, and I’ve done a lot of thinking as to why.  Objectively it should have been worse, since in 2009 I was hospitalized for three days and this year I was hospitalized for 2 weeks.

But it wasn’t.  It was easier. I think the first reason had to do with my emotions.  Two years ago I had had bronchitis for eight or nine weeks, along with bad asthma.  Then I puffed up like a puffer fish within just a few hours, which had never, ever happened before.  I could barely find my ankles, and my chest was also swelling.  The end result was that I was having severe difficulty breathing.

And I was terrified.  My body had never done this, so I didn’t even know what steps to take, other than the fact that I needed to get to an emergency room   Then I was stupid enough to drive myself to the ER which is about 20 minutes away, getting more and more frightened by the minute.  (Don’t worry, I was severely chastised for that from the triage nurse to the ER doctors.  Something along the lines of “You did what???  Don’t ever do that again.  You could have died!”)

In addition, they were pumping steroids into my IV every eight hours, which greatly heightened my anxiety.  And they had no idea what had caused the swelling.  Nobody, to this day, ever has figured what had caused the swelling.  Which is disturbing since I still have problems with it.

This time the reasons for the hospitalization were completely different.  First off, I could breathe. Secondly, I could breathe…..   And tenthly, I could breathe. This time I was being hospitalized for intractable migraine pain.  And while the pain level was so high that I could not go to the grocery, or cook, or hold a conversation, or drive, I knew that I was in no danger of dying.  That right there is a gigantic, huge, unbelievable difference.  So I could concentrate on making it through each moment and trying to heal, and that reduction of stress definitely helped.

Bottom line:  I wasn’t terrified this time, and for that I am grateful.


Teaching was easier today, and I definitely had more energy left at the end of the day than I did on Monday.  One of the main reasons was that I was less nervous.  Another was that the room that I taught in had a small couch, so I was able to lie down a little during lunch.  I had been a little nervous.  I have spent almost my entire career teaching upper elementary, and today I taught in a first grade classroom.  I learned two really great things today though: I’ve figured out a way to take care of myself when I return to work in the fall,  (get a couch), and working with the little kids was kind of fun.  Not a bad day!

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.

You’ve Just Brought Heaven Home

“I’ve got something to show you that you’ll be interested in,” was the first thing my husband said when he got home last night. I waited patiently (well, maybe not so patiently) while he put down his stuff and got some things organized. Then he pulled out a 5×7 card from his brief case.

Him:  I heard someone talking about a composer in the staff room and I stopped to listen. My husband is a mathematician, but loves music as much as I do.

Me:  Silence

Him:  I heard a colleague mention that there were going to be some Morten Lauridsen concerts locally and I just stopped dead.

Me:  More silence.

Him:  I said, “Morten Lauridsen??  My wife thinks he is one of two of the greatest living choral composers!” His colleague absolutely agreed.

Me:  Morten Lauridsen concerts?  Here, in easy driving distance???

He handed me the announcement card and we just both stood there staring at it for while.  Morten Lauridsen’s music is often quite difficult.  But once you have mastered it you know it has been worth every second of work.

In the midst of singing it I often think that I am the most fortunate person alive.

Me again:  You’ve just brought heaven home!

Lauridsen, M.: Choral Works (Elora Festival Singers, N. Edison)

Monsters Under the Bed

We all have our deep-seated fears, and the ones that are buried the deepest are almost always irrational ones.  They may have a basis in reality, in fact they almost always do.  That’s how they got into our consciousness to begin with.  But then our subconscious does something weird to them.  It turns them and twists them and bends them all out of shape so that sometimes we cannot even recognize the kernel of reality that brought us to this place of unreasoning fear.

These places that we go where our rational mind can recognize that our intense fears are almost groundless but our anxieties refuse to recognize logic, are scary places.  Perhaps that is a statement of the obvious.  But especially for those of us with anxiety disorders, these places can feel like wastelands where we can find neither our way out nor even directions.

These anxieties loom large and feel uncontrollable. Which is, in laymen’s terms, probably as good a definition of an anxiety disorder as any.  I have recently decided to call these anxieties monsters.  I picture a monster drawn similarly to ones in children’s picture books, and that makes them a little less scary for me.

For me one of my most deep-seated fears involves money.  I mean deepest.  It goes way down into places that are difficult to reach.  My older daughter sometimes says,
“Mommy, you are far more worried about ending up homeless and living on the street than I am.”  And she’s completely right.  My therapist asked me recently how many times in the last 10 quarters had I not been able to pay my bills.”  I looked at him with a horrified expression.  “Never!” was my response.  “Exactly.” was his. He went on, “Hannah, even during the years when money was scarce, you always managed to put food on the table and a roof over your head.  So this fear is irrational.”  He was right.

So why my abject terror?  And the answer is, of course, that it’s one of my monsters.  Which is why the money issue with this medical leave has been so scary.  Even with disability insurance payments (thank god I’ve been paying those premiums my whole career), my income is not as high as my regular paychecks.  And which is why, especially at the beginning of this medical leave, I worried a lot.

I would lie awake at night and worry if we would be able to pay the bills.  What if we couldn’t feed ourselves?  What if we couldn’t pay the mortgage?  What if we ended up homeless and out on the street?

And poof.  There is the monster. He is out from under the bed again.  All big and hairy with purple spots and horns. “The world’s gonna end and we’re all going to diiie!” he screams. And I believe him. At least for awhile. But I struggle to have some compassion for this brain of mine that is wired so that within a nanosecond it writes the most horrific ending to a situation it can think of.  So I stop and think.  And breathe.  I ask the monster what the heck he thinks he’s doing, why he is trying to wreak such havoc in my life.  “Because that’s my job,” the monster says petulantly. “To make you afraid.”  And when he says that, he shrinks down to size. He’s still hairy with purple spots and horns. But he doesn’t fill the room anymore. He stands on my night table, smaller than the lamp. And then I can see him for what he is. An embodiment of my fears, sometimes blown larger than life.  But now, for the moment, he is night table size. And kind of cute.  And a little funny.  And I can talk to him, which is perhaps the point.  And instead of telling him to go away, which I know he never completely will, I tell him to make himself comfortable. I tell him that he doesn’t need to sleep under the bed, that the night table is actually quite a comfortable place, and I tell him to spend the night.  Out in the open, where I can see him.  And I think that perhaps that way, he and I can learn to live together.  After all, he is a cute monster. And a little funny.


Yoga. I’ve gone back to yoga.  I figured that I had to start doing something systematically that would build my stamina or I would never get back to work. Serendipitously the Mind Body class that I had just started at Kaiser was also emphasizing breathing as a way of reducing stress, so I was getting double reinforcement, at least in the breathing department.  Yoga told me that practicing the breathing we were doing in class at home was good.  The Mind Body class was more specific: do at least 10 minutes of deep breathing at least once a day.

So… ok. I figured I really did need to do this. At least give it an honest try.  The first week was discouraging.  I never had managed to make deep breathing work as a relaxation tool, and this first week was no different. The second week I was still discouraged and only continued the practice because it was assigned as homework. However I did not do 10 minutes of deep breathing at home on the days when I went to yoga class. I figured yoga breathing was good enough to count.

But sometime during the third week I started to notice something.  In both the Mind Body class and the yoga class we started the breathing with some guidance, and that was beginning to make all the difference.  I still was getting very distracted at home, but at least when I was in class I was able to stay with the breathing and my mind started to be more focused.  That was the point where I began to think, “Maybe I can do this.”  By the sixth week I was finding that not only was the focused 10 minutes of breathing reducing my stress, I was even beginning to be able to use it in stressful situations.  Many of us in the Mind Body class were beginning to experience the same thing.  One friend from class was even beginning to sign off on her emails with the phrase “Remember to BREATHE.”

So I did start to truly breathe because I felt that this was finally beginning to work. And one of the joyous things that has started to happen is that occasionally I become aware of being fully present in the moment.  I sometimes sit or stand in a place and think, “I have spent my whole life waiting to be here. Right here, right now. That is an incredible gift for someone with an anxiety disorder.

PS For those of you celebrating either Passover or Easter, have a blessed and joyous weekend!

A Few Seconds

I am taking a Mind Body class from Kaiser, my health care provider.  It is an eight week class that meets once a week, and explores our mind-body connection.  We learn, we share, and we discover simple practices that build on each other that can reduce our stress and improve the quality of our lives.  That sounds simple, and to some degree it is.  But I can tell you that these simple practices, done over time, can effect changes both subtle and deep.  Each week we are  given “homework,” something specific to do mindfully over the course of the next week.  In the third session we were given the assignment of noticing something during the week that gave us joy and then taking a few extra seconds — just a few – and more fully noticing that joy.  Taking it in.  Standing there and just absorbing how beautiful, or delightful, or lovely that something was.

We are so stressed and hurried in today’s world.  We are always trying to multitask, even those of us with physical or medical limitations.  And the fact that we usually rush right past joy, because we think that we don’t have time to slow down enough to savor it, only increases our stress.  This in turn leads to deteriorating health.  Even for a healthy person, let alone those of us with an immune deficiency.

That practice sounds so simple: take a few extra seconds to notice joy.  Yet in the ensuing week while I was consciously looking for things that gave me joy, I began to notice just how often I rushed past it.  Sometimes I rushed past a joyful moment so quickly that I literally didn’t notice the joy until I thought, “Wait a minute.  Those flowers should give me joy, and I didn’t even notice.”

What I discovered this week was that the very act of looking for joyful moments made me discover so many more.  And most joyful moments are totally free!  No processing fee required.   What were some of the highlights?

*Flowers.  My husband is not a flower kind of a guy, and I am very much a flower kind of gal.  I can literally count on two hands (or maybe even one-and-a-half) the number of times he has given me flowers in over three decades of marriage.  But he is a wonderful, wonderful guy and so early in our marriage I realized that if I wanted flowers I would need to buy them myself.  Unfortunately, they are one of the things I have cut out of the budget since I’ve been on medical leave.  However Valentine’s Day found me stopping at Trader Joes for groceries.  I had made a deal with myself:  if I saw flowers that were truly beautiful, I would buy them.  If they were just average, I would take a pass.

And guess what? I did indeed find one bunch of roses (exactly one) that were breathtaking.  I put them in my cart, and then still was tempted to put them back as a “needless” expense.  But when another customer looked over at my cart and said, “Wow!  Those are beautiful roses,”  it was a done deal.  They not only gave me moments of joy on Valentines Day, they lasted and gave me joy for almost a week.  Sometimes I would sit down in a chair for the sole purpose of looking at them, simply because they were beautiful and gave me joy.

*Liquid filled soft gels.  My vitamin D supplements come in this from.  Not surprising.  What is surprising is how they look.  They are tiny golden spheres that look like miniature suns.  I started taking a moment each night to actually look at them before I gulped them down.  Each time I do that, it seems that they are radiating light and warmth, and I feel happy.

*Dark Chocolate.  I only allow myself 2-3 small pieces a day.  That’s not nearly as virtuous as it sounds.  If I eat much more, my stomach gets unhappy.  Some days I can’t eat any.  So the pieces I do eat are important.  Following an exercise we did in the Mind Body class, I now take smaller bites and eat the chocolate much more slowly, savoring the taste.  That makes me happy too.

*Weather.  There are some days I go for my exercise walk and hardly notice the weather unless it is miserably hot.  I have started to pay attention to how beautiful the day is. (At least when it really is.)  I have been surprised at how much more enjoyable the walk is.

*Light.  I am a light freak and almost always notice a patch of sun, or how the light is filtering through the leaves.  But now I am taking those extra few seconds to appreciate it more fully.

*And finally, the mocking bird that nests in one of our trees every spring.  In fact, we figure that we now have the grandchild , or maybe even the great-grandchild of the original bird.  The cool thing about mocking birds is that their song changes so you don’t get tired of listening to it.  When I heard the mocking bird for the first time this spring, he was singing a song that I had never heard before.  It was particularly beautiful.  So I stopped what I was doing and did nothing except listen.  I was a lovely way to start the day.