Holding Still

Happy belated birthday

I turned 43 on Tuesday, and it was kind of, well, great.  Not in the surprise party way.  Not in the "my husband bought me a Lexus!" way, and not in the "I've got no cellulite!" way.  None of those things happened upon me.

What did happen was that I was pretty chill.  Pretty serene.  Happy and feeling like I used to feel.  Hard to pinpoint when that was -- "how I used to feel."  I have been searching for when that was.  I go back to when I was in my 20's and lived in Baltimore.  When I first moved to NYC.  When I went to Italy and fulfilled a lifelong dream.  When I was 11.  There was no sudden shift, no clear before and after of feeling good and then feeling bad.  It kind of snuck up on me.  However, my illness and subsequent "recovery" is a sort of marker.  It most certainly has something to do with that, my first "child."  

I've always considered my illness and especially my recuperation period to be like a very prolonged, difficult pregnancy.  I have never been pregnant, at least not that I know of, not in this particular lifetime.  But I remember that when I was "better" (ie, able to leave the apartment and see people), I was weak and tired easily.  Needed to sit down a lot.  Many foods disagreed with me.  I couldn't drink.  I was very emotional.  And I was self conscious about the way I looked.  In this I was the opposite of the pregnant friends I seemed to be surrounded by.  They were getting larger, whereas I had gotten much, much smaller.  Small to the point that at first, my family and some friends were convinced that I was anorexic.  Legs so thin that they didn't appear to be mine at all -- whose bones were those jutting out of the pale, thin skin?  Not mine.    

A memory that stands out for me is from a party I attended with at least two pregnant friends.  They and I all felt a bit nauseous and very tired and ready to call it a night.  One friend was describing her symptoms, and I commiserated -- they were not much different from mine.  The difference was that she was carrying new life within her, life that admittedly made her feel pretty awful.  I wasn't carrying anything special like that.  Instead I was host to some overactive white blood cells and some weird granulomae that apparently caused quite a ruckus to my immune system.  I sighed.  My baby was my illness.  I had to tend to it, hate it as I might.  Because I did despise this unwelcome visitor who I determined had destroyed my life.  Had dissipated my body out of all recognition.  The baby who wouldn't let me have another, less destructive baby.  

 For about 8 years now, I've been waiting to feel like I used to.  I wanted to go to sleep and not wake up coughing or with a raging headache or ear infection.  Wake up refreshed and not trembling, heart racing.  Wanted to laugh -- laugh readily and often, like I used to.  Not snap at loved ones because I didn't get enough sleep.  I have known for a while that I have been protecting myself in a little cocoon from hurting more.  I didn't care, I was sick, wasn't I?  Too bad for you, you just have to deal with my illness peculiarities.  It is only recently that I have been able to step back and watch myself fend off life.  I have been afraid of this baby.  She turned my life upside-down.  Slowly, not without resistance, I have forced myself to accept her.  "She might not ever leave, you know," I told myself.  There is also a good chance I might not ever get off of prednisone.  Prednisone is the pacifier that keeps her from throwing my body back into the sickness spiral.  

I have learned a few tricks.  If I do yoga regularly, she doesn't feel as achy and she sleeps better.  As woo-woo as it sounds, cranio-sacral therapy works.  So do chanting Buddhist monks and nuns.  Having two boys, as challenging as it is, is good exercise and makes her sleep well, too.  

With this acceptance, the fear has lessened.  I'm not throwing raspberries her way or dissing her or anything, of course.  I must respect her.  The illness, my first child, has allowed  me to lessen the prednisone pacifier.  She has allowed me to go from the five milligrams I've been on for so long, gradually, painstakingly down to 2.5 milligrams.  To those of you who've tapered prednisone, you know of what I speak.  It is extremely difficult to taper once you get down to the lower numbers.  Some say it is impossible once you've been on them so long, your adrenal glands become addicted to it and can't work on their own.  I tapered by 1.25 milligrams in March, and it has taken me until now to not feel completely exhausted.  I'm still not sure it'll stick, but I feel pretty good lately.  I weigh the same as I did before the illness.  Even a couple pounds more.  

And for a week or so now, I've been pretty ok.  Pretty chill.  More mindful.  More like I used to feel.  And for as long as it lasts, I am grateful.  Thank you for this birthday gift, you illness you.  My first baby.   

The one who made it possible for me to have my second two babies -- my boys.
 

wandering pains and a VIP

I've had some weird ailments these past two weeks. That's not too unusual for me, since my auto-immune excitement years ago. My body likes to "go rogue." I am definitely getting more objective about it, though it's no less annoying. Last Monday I took a yoga class with a different teacher. It was tiring, a real workout, but I felt fine afterwards. I actually felt great as the day wore on. Then the next morning I awoke with a twinge in my right shoulder, which has happened before. It's a leftover from previously mentioned auto-immunity. It worsened as the day went by, and by evening, I was in intense pain if I tried to move my arm. Which I do quite a lot. So there was that. Resting and a yoga class with my regular teacher this Saturday have almost completely put that pain to rest. But pain must relocate and travel with an auto-immune disorder, so now my neck and ear are p-ing me off, and I'm losing my voice. That happened sometime between last night in bed and this morning when I awoke. I sound a little like Jessica Rabbit, except I produce more phlegm. Mmmmm, phlegm! Enough comedy jokes! Onto the boys! Habtamu is VIP this week in his class. Each child gets an opportunity to be VIP. The kids can bring in a favorite book, food, activity, music, etc. to share each day with their class. Their family members are also invited to visit and talk about the VIP. The first day he brought in an I SPY book. It's not his favorite (that would be the Bible. I'll do a separate post about that one!), but he rightly thought it would be a fun book to share. Today he brought in a loaf of Ethiopian honey dabo (bread) that he and Lire and I baked yesterday. It's from this wonderful cookbook, which I highly recommend, even if you have no ties to Africa. He also brought in Sorene, the Ethiopian children's folk CD we have. He didn't tell me whether or not they listened to it today, and I kept meaning to ask but then he lied to me about the gum he illicitly chewed before dinner, so I got distracted. Any-who, tomorrow I'm going to visit his class with his brother. We are going to do a craft project (his request), and look briefly at his lifebook again. We are going to focus on different houses -- those we saw in Ethiopia, the one we live in here, probably a few others from other areas of the world. Then we will make a simple origami house which the kids can later decorate with collage paper and colored pencils. It's a cute project, and the kids like to decorate it inside and out. Maia, as for the reception of his lifebook last week -- I have almost no info. His teacher was absent that day, and when asked about it, Habtamu replied, "I forget." Did anyone ask any questions? "I forget." Do you remember which pages you looked at? "uhm, no." We're not sure if it's a true loss of memory or a self-defense mechanism. He is definitely more self-conscious about being Ethiopian and adopted than he was last year, so we're watching as he feels his way around. I'm hoping to see how he feels about it tomorrow and even more hopefully that we'll talk about it. It was his idea to bring it, so we'll see. On Thursday he will take the day off to go to NYC with us, and then on Friday Dad will visit school and look at a book about NYC with the kids and talk about our trip. If my cold progresses unfavorably, I may stay home, as I tend to experience extreme illness unless I rest at the beginning of it.

And now for some eye candy from this past Sunday's flurry-licious frolics! Brothers and C3PO (that is a tongue-twister for Habtam, btw! -- he says "3CPO")

yellow gooey liquid mother's day

Last weekend I developed an ear infection in my right ear. It subsided to a dull ache with a little homeopathy, but I still called the ENT on Monday for a visit, because it felt like it was here to stay. By Tuesday I was begging for an appointment, and got one for... Friday. Hmm...

Excruciating agony wasn't a convincing enough description, I guess. I had a few antibiotics left over from a course that was changed midway, so I was told to take them as I waited for Friday. By Wednesday morning I wasn't able to hear out of either ear very well. That's right, the left ear decided to join the party!

I've had fluid in my right ear for a while (residual damage from my auto-immune fun), so the hearing there hasn't been stellar. It got worse with the infection, and then somehow I managed to get fluid in my LEFT ear while irrigating the old nose. Wonderful. The left ear doesn't work so well now, the ringing was INTOLERABLE, and I cried myself to sleep twice waiting for the Advil to kick in. By Thursday the meds started to help, the pain wasn't as intense, and I actually went to TWO Mother's Day events at the boys' school AND I taught two pre-K origami classes. Believe it or not, the near-deafness improved my teaching (and my parenting!). If you can't hear what they're saying, you just have to let go. You focus on the important missives (More glue, blue pencil please and unbuckle my belt so I don't pee my pants), and forget the rest (she hit me, he won't share, I can't do this). You are more careful with your visual instructions, you slow down and cause the kids to slow down in the process, and you notice how visual little kids who can see ARE. I always knew I talked too much when I taught, now I'm a convert to shutting my trap and using my silence and body movements more.

With the boys it's been helpful, too. I just can't hear them complaining. It's lovely. If something is important, they know enough to come to me and speak clearly into my ear. It slows down the drama.

An unexpected Mother's Day gift of near-deafness!

Seriously, though, it has sucked a lot. I did make the best of it, but when I went into the office I begged him to do what I've wanted and been denied for years -- tubes. Let them drain, dammit! He did it in the office, and boy did it hurt. I writhed. I whimpered. Yes, he used a numbing agent, but because both my eardrums are swollen to five times their size and scabby, the numbing agent could only go so far into the drum. As he pushed the tubes in farther, the pain began in earnest. I chanted my newly learned meditation chant in my head and yoga-breathed like a yogini on speed (if there is such a thing).

Ouch.

Interestingly, once the tubes were in, the pain stopped, my hearing improved an iota (now everything sounds just far away and not far away AND underwater). I have pain intermittently, but I slept through the night last night (without crying, as far I know), and my hearing pops in and out as the fluid drains. And boy does it ever! It is one of the most disturbing things I've seen and experienced, if you want the fluidy-good details. Mmmmmm! I wear cotton in my ears just so as not to gross out the innocent strangers I pass at the grocery store.

The boys have rolled with it all. Habtam was worried when I was in pain and kept checking in on me, sweetie that he is. Lire kept asking me, "Dead?" I tried to determine if he was asking if I was dead now, or if I was going to die. It was the latter, so I assured him I wasn't going to die anytime soon. "Yeah?" he asked matter-of-factly. Yeah. Hopefully.

They are intrigued by the yellow liquid flowing like golden sunshine from my ears, since H. had this early on with his perforated eardrum. Now we both must wear wax plugs in our ears whenever we swim or wash our hair. Like mother, like son.

Wish me better hearing soon. And I will wish all of you a Happy Mother's Day, whether still waiting for your child(ren) or already ensconced with them as I write. Hope your day was easy and free.

pretty polyps

I'm going to have nasal polyp surgery this Wednesday. I'm sort of in denial about it. It is something I've been thinking about doing for a while now, and after a particuarly uncomfortable autumn/early winter, I've made the plunge. My mom had it done, my aunt, friends of friends, and even one of the nurses who interviewed me at the hospital. They all are very glad they did, and said it cut back dramatically on the number of sinus infections they suffer from each winter.

If that is a result, I will be happy. We're also all hoping it will mean less antibiotic consumption and not needing to increase my old pal prenisone as often.

Apparently, the pain and discomfort after the surgery are intense, and the length of time of recuperation varies. I'm sure I'll be one of the slow-healing ones. ACK!

I must make soup, and buy more crackers so I can eat crackers in bed with Chauncey. He is a good home therapy dog, and he does appreciate a good saltine.

Sometimes I wonder if my nose were bigger, would I have more room for polyps to cohabitate peacefully?

journal sifting

Today I was rummaging around for an old journal of mine, looking for poems by May Sarton. I can't remember why I thought of her. But I wanted to reread a late poem of hers about getting dressed. Well, I found it, and I started rereading the entire journal. It started in June of 2002 (that is the spring/summer after I was diagnosed with Wegener's and began treatment/convalescence). The last date is November 11th of the same year. I also found notes about a septum in my uterus and that my left ovary was bigger than my right. I wasn't in any condition to consider pregnancy, but I guess I was talking about it future-wise with my gyno.

I was pleasantly surprised by some of the clarity I found within the journal, then alternatively embarrassed when I read my desperate rantings about how awful I felt and how I wanted to chop my head off (one aspect of my illness is INTENSE sinus/head pain). Mostly, I was glad to read it again, and the parts that stuck out the most were the small moments. Beckmann and I were still living in NYC, but I had moved out to the "country" for the summer, and he was shuttling back and forth between the two places. I spent a lot of time alone, which I craved. I was on a heavy dosage of prednisone at the time, and if any of you have ever had the pleasure, you might know how MOODY one can become on this magical steroid. Boy was I bitchy! That on top of not feeling well most of the time makes for someone who should be given a wide berth.

Back to small moments. I listened to catbirds. I saw beauty and appreciated it. I was grateful for my tea (still am!). What I sensed from the entries was that gratefulness people have after a crisis. Like being happy that walking a block to the park didn't wind me anymore. Stuff like that. I discovered May Sarton that summer, and read every book our little library had by her. I liked some of her poems, but I especially identified with her journals.

Sarton was very ill at the end of her life, suffering from lung, heart and stomach ailments. She was interviewed about that time, and here's part of what she said:

* "At the end I talk about -- or she asks me -- what this time of illness has meant, whether it has been all negative. I'm sorry to say that I answer yes, it has been. There is no point in pretending that it has been a lesson in anything except endurance and trying to believe that someday I can get better. But when illness goes on so long and there is apparently no hope, it is hard to believe. I've been a very depressed person."

Now that I'm feeling better, it's easier for me to find the positives from that time. But I felt exactly like Sarton for a good time afterwards. I still do have flashes of depression and anger about it. But they happen less and less. I think I forced myself to look for the "silver lining," because I had to move on past my anger at not ever being the same again. Plus, I prefer the way I feel when I'm being grateful. Or even the way I feel when I remember having been grateful.

I'll end with the poem I was looking for. I empathized with this a ton at the time, because I was so frail and unsteady, too:

**Getting Dressed

These days
Everything is an effort,
Getting dressed
An adventure.
I may lose my balance
Pulling on jeans,
Buttoning my shirt
A trial of patience,
Pulling on a sweater
I get lost inside it.
When I am dressed
At last
It is a small triumph
And I am rather tired
At the very start of the day.

* didn't note where quote came from, but maybe Endgame
** from Coming into Eighty

slooowwwwly...

I would say that the biggest effect my illness had on me was that I slowed down. A lot. I naturally talk and move rather quickly, so this was new. When I was in the throes of the illness, I think my mind protected me by becoming an outsider to the pain in my body. An observer to every increment of improvement or deterioration. I worked at becoming patient with the pain, because the only thing that impatience accomplished was to cause me to despair, which caused me to cry, which increased the pain, ultimately.

Of course, my patience exercise was not always successful, since pain is something that can overcome you pretty easily. So there was a lot of anger and taking things out on whoever happened to be nearby (sorry, Beckmann!).

I was waiting for the whole thing to end (not my life, the illness!) I had my reasons for expecting it to end, one of which was, "geez, it's got to stop sometime, right?" Another was a talk with an uncanny astrologer months earlier who had not only predicted that I would become "vulnerable, like a baby," but had told me I'd be feeling more like myself in April. So I patiently waded through February and March, symptoms ever-changing, weight ever-dropping, waiting for April to come. I was finally diagnosed and medicated on April 2nd. The morning of April 3rd I felt like I had been brought back from the dead, literally.

I wasn't "cured," (you go into remission with autoimmune illnesses), I still had a lot of ground to cover in my recuperation. But I had learned to slow down. Which may sound like a piddling result for such an extreme trial, (which I did think at the time, mind you). But nowadays when I start to speed up and rush through work, a conversation, a judgement about something/somebody, I try to remember how slowly I functioned back at the beginning of my convalescence.

I considered everything very carefully. Would I take a shower or a bath? Which shoes would more easily enable me to walk to the store and back (I had residual nerve damage in my feet which caused my feet to feel like Monsieur Heavyfoot (Kids in the Hall, anyone?), which tea should I choose to drink? I would sit like an octagenarian on the park bench and feel the sun warm my frozen hands and feet. I kind of felt like I was at my own personal spa. It felt so good to do all of these things by myself again, and to be able to luxuriate in them.

My slowing-down also enabled me to notice other people more. Especially the octagenarians I mentioned previously. Where I would previously have rushed past a slow-walker to make the bus, now I walked behind, or alongside him/her, wondering what part of them hurt, or if they just couldn't move any faster. The one time I forgot my heavyfeet and tried to run for the bus, I literally fell flat on my face. On the sidewalk. Ouch.

I guess what I'm trying to hold onto from this time is the patience and the slowing down. I get so caught up in accomplishing tasks, impatient to become a mom, worrying about how we're going to handle being a transracial adoptive family. When I let my mind go at warp speed it just hamster-wheels over the same ideas until I feel fried. Must. Slow. Down.

choices

I think like most people, our path towards building our family was not a straightforward one. And in the middle of things, I think I became more acutely aware than ever that choice is a heavy word.

We make choices every day. They effect every bit of our lives, some much more than others, some much less. Like what I decided to have for lunch. I don't want to bore you with the choice to buy local, raw-milk cheese versus another brand shipped from Wales, or the effect the milk product would have on my sinuses (grr...). But that choice's effects were pretty minimal, I guess. As opposed to the big decisions/choices we make that effect lots of other people besides ourselves.

When I became ill, I laid aside any thoughts of becoming a mother, even though I was smack dab in the middle of when one is supposed to be "trying." I really did not have a choice, my body decided to make the choice for me. When I started taking the medication necessary to put me back on the road to feeling like a normal person again (whatever that is), the doctors and I talked about the fact that I could not try to get pregnant while on it, and that it actually would compromise my future fertility considerably. I was sad, to say the least. It's funny, because I never had thought about grieving before -- I had grieved, like most people do, when loved ones died. But I had never been conscous of it before. My grieving for the child(ren) we wouldn't have biologically really took me by surprise. I had stopped working long before this because of my health, so I was removed from small children professionally (I taught preschool art), but I found I couldn't be in the presence of anyone under the age of 3 without either becoming angry or incredibly sad. I stuck to the elementary grades, it was emotionally safer for me.

I know that other people have experienced this, I've read innumerable accounts by women much more articulate than I. But I just never expected it. A bit like a punch in the stomach. And my vocation, the job I loved, involved being around small children.

Strangely, I think it ended up making me a better teacher. Detachment was necessary to allow me to function, and that detachment allowed me to view my students more objectively, which I realize is so important in order to accept them for themselves, reserving judgement.

Not quite 5 years have gone by since my diagnosis and recuperation, and now we are in the process of adopting siblings from Ethiopia. Our path here has been circuitous, for sure. We started intending to adopt a child from China. We assumed it would be a girl, we assumed we would wait 6 months after DTC, then travel and become a family. Just when we started the paperwork, China started to slow down. And our agency never responded to our secondary paperwork. Always fearing to be pushy, to go with the flow, yadda, yadda, we let time go by. And found they had just overlooked sending us the next batch of paperwork. By that time I had started to read about other adoption options, and domestic adoption seemed like something we would like. We liked the idea of keeping in contact with the first family; our child would know his/her roots, would have more tools to understand his/her relinquishment. We reconsidered our initial choice. And then the gravity of having the privilege to choose at all struck me to the core. It seemed unfair that we should be able to pick and choose our children's country of origin, when they had no choice at all. When most likely their parents had very little choice when it came to deciding whether or not to parent.

At our agency, we became another family too many. We were discouraged mightily from even applying. I was rudely asked, "well, how long have you been trying?" in the middle of an adoption intro meeting by a sw who I thought should know better. I stammered, "I, I can't try. I'm on medication, I..." And then I realized that I didn't need to lay my body bare in a public forum. Mainly because another sw looked horrified at the other's question. The resulting emails back and forth let us know that we weren't going to be doing this together, we and this particular agency. I was on medication, there were already too many families in the book, ..."have you considered China?"

Too much choice, not enough options. A fresh start was needed.