My walk through the Valley of Shadow started in October 2009, with pain and loss of my vision. I had heard a voice reassuring me that my vision would be restored, so I expected that after surgery to release the pressure on my eyes, my vision would soon come back fully restored.

Although my vision improved far more than the doctors had expected, it was nowhere near as significant as I had expected. November marked the beginning of my struggle with my identity now that I was no longer fully sighted and independent. It also brought depression and, perhaps inexplicably, implicit trust in the voice that had promised me restored vision.

 

You can watch my YouTube video (link below) or read chapter 12 below. You may want to bookmark either page, as this chapter (and thus video) is long.

 

12. November 2009

“When I suffer/I make myself strong.” —Otomí song

 

Monday 2 November 2009

Since the visit to Dr. L last week, I’ve seen steady improvement in my vision. It’s been small, to be sure, but it’s been just a little better each day. …

So today, it’s been rough because my vision has been dark, almost like just a couple of days after the surgery, at least that’s what it seems like to me. I’m sure it’s not quite that bad, but the panic hits me, because it’s definitely worse than yesterday. Especially my right eye. Last night at [a book store], Mike showed me a ball that had two different liquids in it so that one swirled around like clouds in an atmosphere. That’s what my right eye’s been like today—it’s been like clouds swirling across my vision all day, darkening everything I can see, but there’s constant shifting and darkening in that eye.

Mike mentioned yesterday or today something he had read about the brain rewiring after amputations and such, and so we think maybe there was some permanent damage in at least the right eye and my brain is basically rewiring itself to see properly—or better, at any rate.

But today’s vision drop is worrisome, and particularly so because of how good my vision was yesterday. … After all that, to have a day like today, when I had to struggle to really see ANYTHING clearly, with either or both eyes, was really disheartening, and I had to put a lot of energy into not panicking and not slipping into thoughts of despair.

And that’s been really difficult because we took [Mike’s mom] to the airport today, and she was a great emotional support for the brief time she was here. Since we got the news [of my potential lifelong blindness], we’ve had parents here or the promise of having parents here, and now, we don’t. So there’s that despair. And I have this month an appointment with the optometrist and an appointment with Dr. H (the neurologist) and on Dec. 2 an appointment with Dr. L. But the pregnancy Medicaid runs out 6 weeks after the end of the pregnancy, so very, very soon. And then we have to cover these doctor visits on our own. Along with my medications. And I can’t yet edit as much as I was, so I can’t even earn enough to pay the bills, much less cover all that. So, yeah, not letting my thoughts turn to despair is rough. Very, very rough. …

 

Undated [between November 2 and November 6, 2009]

“The difficulty in life is the choice.”  —George A. Moore (1852–1933), Irish writer

Especially the choice to be happy, to be optimistic, to be hopeful, despite all the challenges provided…choosing to turn oneself to God, to trust the voice.

 

Friday 6 November 2009

My vision has declined again, I think. I need wisdom. … I realize the runes are a conduit for the power that speaks directly to my mind, but I have an easier time trusting the runes & cards because they do not speak in my voice.

Algiz (Protection; Boundaries)

Control of emotions. During accelerated self-change, important not to collapse into your emotions, highs or lows. New opportunities and challenges are typical.

Observe & stay with the pain. Don’t try to escape it.

You will progress; knowing that is your protection.

“In the Circle of Runes, healthy boundaries always bear witness to the fact that someone has courageously undertaken their journey from Denial to Honesty.”[1]

“Your protection lies in the Divine, in God as you understand God. Let no false boundaries separate you from the Will of Heaven.”[2]

My vision seems to have gotten steadily worse over the past few days. … I was worried, so yesterday morning, as soon as I got up, I called Dr. L’s office to ask about it. …

We went back and forth all day with them trying to fit me in to the office between surgeries … so finally, he consented to see us at 4 PM today, after all of his surgeries were over. He wanted to see me because he didn’t think the pressure from the cold [I have] could cause my vision to change, but he wanted to take a look to be sure.

We drove in, and Dr. L couldn’t see us because of an issue with one of his surgeries, so Dr. T, a freckled Irishman with a beautifully lilting accent, was called in to come see me. … Between Dr. T and the assistant, we learned that my vision [acuity] has improved by two lines (on the chart) in both eyes since my visit just last week. Dr. T told us that if we weren’t drinkers before, that alone should be cause for us to go out and have a drink. I nearly cried when he told me how good my vision was—nearly a perfect 20/20 in my left eye and 20/70 in my right. … That gives me hope.

When I mentioned that my big concern was the “cloudy” vision, he did a few more checks on my eyes and said that there’s a bit more swelling yet in the backs of my eyes, and a bit more in the left than the right, but not much, but he thinks the “darkness” is just visual-field defects, which aren’t likely to be fixed. … I can’t wait to see the next doctor and see what he can do to fix my vision.

When I said it’d be really nice if I could just see “here” (I indicated the large area around my right-eye periphery), Dr. T said the visual-field issues can’t be fixed, really. Mike, quick as ever, commented on the fact that my vision supposedly wasn’t going to get any better, either, but did, so this was just going to be the next impossible thing to do.

As Dr. T left the room, Mike asked me if I feel better, and I told him yes and no. I feel better that my vision is improving. That’s wonderful. But on my end, it doesn’t SEEM like my vision is improving. …

When all this started, I heard a voice telling me over and over again that my vision would be restored, that my vision would be fine. And I believed it. But then it drug on and on. And then I stopped hearing the voice. And recently, I just keep hearing, “It will take a while to recover, but it will return,” but I doubt [that message], thinking it’s what my brain wants to hear. And so I did a rune reading this afternoon, knowing that it’s the same voice that speaks in my head that speaks through the runes and the cards, but it’s easier to trust it when it comes through an object than into my own head in my own voice. And the message was, essentially, “peace, trust, protection, your health is important to us, you will be restored.” …

I really, really want my periphery back. It seems like I’m getting greedier and greedier, though, when I hope for that. I keep catching myself getting glum and bitter. I mean, just a week ago at Dr. L’s office, I was high as a kite, then I have three days of downturn with a cold, and I’m terrified, and I turn into sad Stephie again, crying and trembling and snapping at Mike … and turning pitiful and forgetting that I can do many, many things on my own, despite limited or even no sight. It’s a pity party, and it sucks. And I don’t know how I slip into it. So I’m trying to resolve to let go, to “let God,” as it were. To leave my care to God. To let my healing take place in the fullness of time. To focus on the positive instead of the negative. Instead of focusing on what I can’t see, focusing on what I CAN see—that is SO VERY much. When the sun is out, I can see many, many things that I couldn’t see just two weeks ago … and I rarely have to be led anywhere, except when my eyes are extremely fatigued.

And I have to remember that this has been stressful on Mike, and I have to treat him like my husband again, and not like my caregiver, not like my servant. I need to stop unloading the weight of ALL of my troubles on him; he has enough to deal with, just trying to take care of the needs that I can’t currently take care of on my own. And I need to get back to doing as much work as I possibly can and doing other things—whatever I can—whenever my eyes get tired of work. But I need to quit moping. It would help if I could get out more, but I can’t dwell on that. I need to just move and do things. Of course, I can’t quite exercise just yet … but I need to start trying to help Mike prepare food, even if I need to stay away from the knives and stay out of his way. I have great vision, I just have spots in it…something that, apparently, Dr. A and some corrective lenses may be able to help. I’m going to pray so. Again and again and again. And I’m going to be, as always, thankful for what I’ve got. But I’m going to try to be so VERY thankful for what I’ve got that I forget to be sad and disappointed about what I no longer have, and maybe someday those things will come back to me.

Maybe someday my visual field will return [to normal]. … I still believe in miracles.

***

Just found this information online. The last sentence fills me with dread, but at the same time, I’ve already recovered vision, so I shouldn’t be too upset. Hey, I’m all for glasses! And if limited periphery means I can’t drive and I bump into a few more things, that’s far better than a lot of other things, right? (Yes, I’m crying on the inside, but I’m trying to resist crying on the outside. Deep breaths. Trusting to God. The Divine will protect me. The Divine will heal me.)

Optic nerve atrophy (ONA) is caused by tissue damage in the optic nerve resulting in either partial or profound loss of vision (Douglas, 2002). The causes of ONA vary widely. … Optic nerve atrophy reduces central vision acuity resulting in an inability to see detail. It also reduces the field of vision, causing images in the periphery to be lost. Finally, there will be a decreased reaction of the pupil to light sources. As ONA progresses, the pupil will cease to react to light altogether (Douglas, 2002). Once vision is lost through ONA, it cannot be recovered.[3]

Dr. T did say that there were three things they check after an issue like mine—pupil response to light, visual acuity [when they test how far you can read], and field of vision. He said my pupils respond very well—normally, in fact—to light. So there’s no loss there. They feel strange to me. But perhaps my pupils reacted faster than normal to light changes before. Who knows. But by all accounts of everyone in that office, I’m doing far better than I “should be.” That’s good from that perspective. Now to decide whether I can get myself to accept that frame of mind and be at peace or be frustrated by the lack of periphery that I have (but, of course, trust the Divine to see me through). I DO still believe in miracles. I’ve already experienced more than one.

Thank you, God, for restoring the vision that you have. When I begin to feel sorry for myself, please help me remember this wonderful gift of restoration you have given me, and let me be grateful for it and not sorry that I don’t have more.

***

I just realized (logically) why this fear, panic, terror grips me more at night. It hit me when I heard Mike somewhere off to my right, and I turned my head away from the computer screen and could not see him at all. Couldn’t see much, in fact. Then it hit me—it’s primal, instinctive. We already fear what’s in the dark, trying to ward off the dark or trying our hardest to see what’s in the dark, and with these vision changes, I really can’t see so well in dim light. Which means that in our house, unless it’s sunny out and our curtains are open, it’s fairly hard for me to see. … The light is dim. And I couldn’t find Mike, even though I heard him. And it made my heart skip a beat. …

Now I know why the twilight and darkness cause me to dwell on and cry over this issue—decreased ability to identify friend or foe in the dark, decreased ability to flee in the dark—so now, how to get past it. Wow, it’s a day of revelation. If only I could move on to healing. But every time I think I’ve healed and moved on, I have, several days later, a day or so full of panic and sadness and pain—either about the miscarriage or the vision. But I know this is how healing happens—slowly and sometimes painfully. I’m just not used to being so sad for so long. It’s not like me at all.

I think I need to smudge the house again. I think I’ve filled it full of oppressive thoughts. I just don’t want to be here anymore. I love this place, but I don’t want to be here any longer. Maybe it’s just because I’m tired of sitting here for so long, unable to do much to distract myself—cabin fever. I can’t wait to see Mom and Dad again. If it weren’t for [my upcoming appointment], I’d have begged Mike already to take me to Mom and Dad’s so I could spend the month there. I just feel so much more comfortable there, and I know that when I need to get out of the house, I can just walk around outside. I can do that here, of course, but for some reason, it’s more enjoyable there. Maybe because there’s more land or because there’s trees and bushes and other things. Or maybe because the weather is friendlier. Or maybe because I can just go for a walk and visit family. Or maybe it’s just the hurt little girl inside me calling for home, longing for the panacea that is her girlhood home.

 

Saturday 7 November 2009

From an e-mail to Dana:

I’m on the mend and mostly hopeful but have a few backsliding days. It’s scary, but tough. Decided this morning to write a book about it. Popped up out of bed with whole paragraphs already written. Have 5 pages already. … Calling it Year of Shadow and Light.

Love ya!

Steph

 

Sunday 8 November 2009

I seem to feel my mortality more closely now. Before, it would come on me in waves, at particular times of day or night, if I was particularly tired or had a particular surge of hormones. My own mortality faces me a lot near my period, and I caught myself thinking about it often early in my pregnancy, before I knew I was pregnant. But this is different, somehow. It’s not that I keep thinking about how easy it is for humans to die, how fragile human life is, but that I just feel how closely death walks with us. It’s also not that I feel like I’m going to die at any minute (though it sometimes makes me feel that way, and I shudder), but just that the companion is right there, standing just behind my shoulder. Maybe I DID die for just a second or two in the ER when I passed out from blood loss that night. Maybe I did, but I don’t recall feeling this way until the darkness hit me… Maybe I just feel its approach.

Gah. Or maybe it’s frustration after remembering last Sunday, when … I sat in our living room and I looked at the sun shining on my legs and saw in such fine detail … the hairs on my legs … true, I could only see it in the sunshine, but I could see it. I haven’t been able to see such detail this week. …

Sometimes I think that’s what drives me crazy the most—the loss of the details. I’ve always been a detail person, and to not be able to see the details clearly … is maddening. Of course, every couple of days, there’s another thing to “drive me crazy the most,” so who can tell? Sometimes I feel like I’ll go crazy from trying to watch the changes too closely, but then I feel I’ll go crazy if I don’t watch them closely enough.

The good news is that the cold seems to be starting to clear up. …

And I did actually have a dream last night/this morning involving sexual desire with my husband. … That means my body and psyche are starting to recover a bit more. … It’s been so long (since … early September or late August) since we’ve made love. … But the dream last night made me hope…at least my mind and hormones are still ready…just other parts aren’t yet quite up to the task.

 

Tuesday 10 November 2009

Today is a dimming day. The natural light has dimmed since about 9:30 this morning, and my vision has dimmed since not long after. I think I overdid it with my eyes the night before last, and yesterday. … Combine [the eye fatigue] with the dimming outside world today, and you have dimming inside my world. And … I’m tired and still dry [feeling dehydrated], so my eyes are still dim. So it’s one of those blech/blah winter/fall Indiana days that are already apt to send perfectly well-adjusted, even happy, people into the doldrums. Not that I’m sad. But today is a struggle. A struggle against the dimming.

***

In the shower, I was crying over how dark it was. It’s not dark, of course, but it is several watts dimmer in my right eye than my left, if you use a lightbulb analogy, and neither eye takes in light at full strength just yet. As I stepped out of the shower and dressed, it hit me (with a lot of help from my guardian spirits/spirit guides/whatever you want to call them): I don’t have to worry about how to strike the correct balance between grieving and hoping. Rather, I can grieve fully now. Grieving now for the vision I don’t currently have isn’t denying the gains that my vision has made or rejecting the possibility of hope for my visual field to recover. Rather, it’s simply grieving what I don’t have at the moment. It’s like having a puppy run away and grieving for the puppy. You can still put up posters and offer a reward and go out looking for the puppy, and that’s hoping that the puppy will return, but you can still grieve that it’s gone, [that it’s] not sharing in this very moment with you. You can still worry for it while it’s not with you. I can grieve the loss of my unborn child while also knowing that I will get pregnant again, and I can grieve the loss of my vision and visual field while knowing that it will eventually return. I can grieve IN this moment FOR this moment without showing a lack of faith or hope in the future.

Now I just need to be willing to let myself give in to the grief. I feel silly grieving … for my sight. …  And I know that the grief I need to feel right now is for far more than just my eyesight. I just haven’t been able to open myself up to very much of it at a time yet because it will overwhelm me. And I certainly can’t do it with Mike around because it will terrify him. It will make me howl and storm and rage and whimper, and though he might have understood that when I was grieving for Grandma, … I think he wouldn’t know what to do or think now. So for now, I’m condemned to suffer a long, slow, quiet grief, a simmering, slow-escaping, steeping grief, until I can find a soundproof room.

 

Undated

[A] couple of weeks after the surgery, … I had [a dream, which I] described … to [Mike and his mom]. … [S]he said, “Oh, Steph, you hold on to that dream!” I didn’t need her to tell me. I think it’s a dream I’ll remember to my dying day. In it, my husband and I are sitting at a table in a sidewalk café. It is late spring or early summer, as the trees are all fully bloomed, and everything is green. The sun is shining, and there is a comfortable breeze. We are in a large area, more like a plaza than a sidewalk, open except for the other round, 6-person outdoor café tables with umbrellas. We are in Fort Worth [Texas], sitting across from the Stockades. We are just sitting together, chatting, and then realization hits me. “Mike,” I exclaim, “I can see again! Everything is back to normal!” The joy that filled my heart was indescribable. Even though I was supremely disappointed when I awoke that morning to find that it had all been a dream, that vision of my husband sitting under an umbrella at a table with bright green trees in full sunshine behind him will forever remain my vision of hope. (Mike later said he had no idea why on earth we would ever go back to Fort Worth but if that’s what it took to get my vision back, we would go back right away.)

 

Wednesday 11 November 2009

Found this poem in a magazine today, submitted by a reader who had found it clipped out in a few places:

Drinking from My Saucer

I’ve never made a fortune
And it’s probably too late now.
But I don’t worry about that much,
I’m happy anyhow.
And as I go along life’s way,
I’m reaping better than I sowed.
I’m drinking from my saucer,
‘Cause my cup has overflowed.

I don’t have a lot of riches,
And sometimes the going’s tough.
But I’ve got loved ones around me,
And that makes me rich enough.
I thank God for his blessings,
And the mercies he’s bestowed.
I’m drinking from my saucer,
‘Cause my cup has overflowed.

I remember times when things went wrong,
My faith wore somewhat thin.
But all at once the dark clouds broke,
And the sun peeped through again.
So God, help me not to gripe
About the tough rows that I’ve hoed.
I’m drinking from my saucer,
‘Cause my cup has overflowed.

If God gives me strength and courage
When the way grows steep and rough,
I’ll not ask for other blessings,
I’m already blessed enough.
And may I never be too busy
To help others bear their loads.
Then I’ll keep drinking from my saucer,
‘Cause my cup has overflowed.

—John Paul Moore

 

Tonight, my vision seems to be better than it has been in days. Of course, that means that it must be  the best it’s been since the surgery. Today, I read a magazine … and I even read a few short articles entirely with my right eye. Of course, I had to verify a few words with my left eye … but I managed to do it! …

I’m getting headaches periodically, and I’m trying to tell if they’re from the eyes or the CSF. … But then there’s the back pain that I have, too, and I had back pain after a while of the CSF headaches, but this back pain could be caused from the coughs from my cold or the strange way I have to sit to read sometimes. …

So I’m trying not to get worried about anything, and I’m mostly not, but when I’ve got so much going on, it’s really hard to figure out what’s causing what…or even what’s potentially causing what.

But yay, vision improving!

 

Friday 13 November 2009

Had a visit with Dr. H today. Because my headaches have been okay and my eyesight has been okay, he says no further follow-up is needed with him for now. …

While we were there, he looked at my eyes, though, and said that the disc (the retina, I think he said was the “disc”) was slightly discolored in my right eye. He said it’s normally a little pink, because of the bloodflow to the area, but in my right eye, it’s a little more whitish-yellow, probably because of the cut-off bloodflow and how that had been cut out for so long. … Dr. H said that the issue may correct itself or may not, and he likened it to lying on your arm and cutting off circulation to it for a couple of hours versus a couple of weeks and how long it takes for sensation and circulation to come back. Of course, if you lie on your arm for two weeks, you may never get proper circulation back, but you may. And we don’t know how long and how severely the circulation was cut off to my ocular nerve and retina.

As we discussed the vision with Dr. H, he also mentioned that it’s possible that the retina atrophied a bit because of the lack of bloodflow, but, again, only time will tell. And any time bloodflow is cut off, the blindspot that naturally exists automatically gets a little larger, he explained. Normally, you don’t notice it much because you have two eyes, so the other one picks up the slack, but given my situation, the two eyes are both a little weak. So overall, I came out feeling a little better, but also feeling a little trepidation. Better because I don’t have to have any shunts right away and because Dr. H does seem to have heard about the eyes getting better…though, of course, this isn’t his specialty and he hadn’t seen eyes get this bad before. And trepidation because I had forgotten that it’s possible that those little slits that Dr. L made in the sheaths over my optic nerves can heal back and this could start all over again, and because I sort of feel cut adrift.

But, of course, I was bound to be left “alone” eventually. It’s just a scary thought.

Dr. H said he thought it would still be okay to try to get pregnant if we chose, as most of the risk would be on me, and there’s no guarantee that the pressure issue would happen again. He said it sometimes resolves completely and sometimes doesn’t and there’s no real way to tell for sure who’s going to be aggravated again and who it’s going to resolve in.

 

Sunday 15 November 2009

Still have visual field disturbances, but I could view text on the computer screen at only 100% this morning! I’m blowing it up a bit to not overtax my eyes, but I was able to read it without squinting or leaning forward or anything! Constant improvement! And that was even today, with a gloomy, overcast day, so no bright light from outside to help. Woohoo! …

***

Even now, when I think I’m doing okay [vision much improved] and have learned how to live okay and cope with my limited sight, I have breakdowns. They happen when I think of going home … my parents’ house. I think of my childhood memories and of how I know every inch of that house and of all the times I’ve seen that house, in light, in dark, in shadow, in full sunlight. I think of the kitchen. … And I think of my bedroom and how the sunshine pours in and makes the room absolutely glow on the white ceiling and one white wall and the shimmering blue wallpaper. And then I think of looking out the windows from my bedroom and the kitchen at the buildings and the vivid green grass, the dark, turgid shadows cast by the trees on the backyard in the glare of summer sun. I think of the summer days I spent as a teenager just sitting on the picnic table next to the house in the shade of the maple trees and staring across the road at the two trees standing sentinel in the field across the way. … They were so lovely. And I remember as a child when I would ride up with my parents to the top of the hill on Mammaw’s property. We’d go from there down to cut trees or to check their tree stands for hunting, but I loved to sit there and look out over the vista—Mammaw’s house, the fields, the road, our house, those fields, the backwater, and, sometimes on a clear day, I’d swear, even a glimpse of the river.

All those images rush together, blink through my mind in an instant, and make me break down in tears. I had a literature professor in college who, in some discussion of some work, liked to make his point by whispering “the horror! The HORROR!”[4] And now, that whisper whispers to me. If I can never see those beautiful things again, what am I to do? Yes, I have the memories, but what good are memories compared to the real thing? Ah, the horror!

***

Came across this comment in a work of fiction today that summed up my feelings perfectly: “Light was like anything else—when he had enough, he didn’t give it a second thought, but when he craved it, it stayed in his mind.” That’s been my sight. When you have it, you don’t realize how many things you do require your vision. And I had always played the game as a kid where I walked through my house with my eyes closed to see if I could find my way around, but as an adult, I never stopped to think about what it would be like to lose eyesight to cataracts or glaucoma or detached retinas. And, of course, with the loss of sight, I also lost light—so it was a double loss. But an incomplete one, and a frustrating one, when you can see what’s right ahead of you but not what’s right beside you.

From the same book, a main character, a surgeon, noticing headaches and holes in his right eye, like a curtain being drawn, even: “The body ticks on through chaos and sickness, and health flits around us like a butterfly, defying all the best intentions and predictions. Although he was thousands of feet up in the sky, he felt as if he were marooned on a small island in the middle of a river, between the proverbial rock and a hard place. He descended into an even deeper depressive state while thinking of people whose eyes could no longer focus on the printed page, and a feeling of terror washed over him. He glanced out the window as he sipped his drink and meditated, it’s the things you can’t see coming that bring you to your knees.”[5]

This passage captures the feeling perfectly—far better and more succinctly than I’ve been able to in weeks of ruminating, stuck as I am IN the situation. I’m an editor, and I couldn’t read. Terror, indeed.

 

Thursday 19 November 2009

I’ve been proud, through my adolescence and adulthood, of my relationship with my parents, of the openness and closeness we have. I’ve been happy to be on an equal status with them so often … yet grateful—but still somewhat embarrassed—when they’ve helped financially. But through it all, there was still always the feeling of equality, of being helped because I help them, of knowing that even if they help me financially, I (do or have) help(ed) them in other ways—chores or shopping or running errands, etc. But when Mom called the day after I received The News, I cried, I was overjoyed. I was a hurt little child who needed only the comfort of Mommy or Daddy’s presence to make everything better. And I knew it was going to be here soon.

I can’t wait to go to my parents’ house for Thanksgiving, for that complete and total feeling of rightness, of utter comfort, of all being set right in the world.

And I am sad for my parents and all the other people in the world who no longer have their parents or parental figures in this world, who no longer have that comfort to return to. They have to struggle and be that person to other people, but they have no one to be that home for them. Yes, spiritually, for those people who have those beliefs, there is the manifest All, but for that physical comfort, who can they turn to?

For one week while my parents were here, I was recovering, and though my emotions were haywire because of the medication and the situation, it was okay, and I was okay, because Mommy and Daddy were here, and I was that little 5-year-old again, Daddy’s little Hot Rod and Mommy’s little Baby Doll. And when I had to sleep in the recliner to keep my head elevated but couldn’t see to go to the bathroom, my mommy slept curled up next to me on the couch the whole time to lead me to the restroom. She had to lead me, her adult child, who had always been independent and able-bodied, to the bathroom. I was cheerful, grateful, as always for any help I received, because I could do it on my own but it was much easier with help, but inside, I cried a little every once in a while at the thought of it, at the shame of it—needing help to be led through my own home by my mother at a time when I should be leading my child by the hand to help keep him or her from falling [but instead, I’m] childless and led by my own mother.

But I suppose the mark of a truly great relationship is that it can’t be easily categorized. Should a relationship between a parent and child be limited to the parent helping the child only in the child’s infant and, well, childhood, years? Is it so wrong for parents to have to help their children in later years? Doesn’t the role reverse anyway later, if the parties are so lucky to live so long, so that the child has to take care of the parent in the parent’s “second childhood”? But even these are simplifications of complex relationships. True interdependence is the nature of my relationship with my parents. We may live hours apart from each other, but I can’t imagine two weeks going by without speaking to them. I can’t imagine half a year going by without seeing them. I can’t imagine living my life without asking their advice on something. What do I bring to the relationship for them? I’m not sure. I’d have to ask. But that’s an awkward thing to ask in a relationship, and wouldn’t it be rude to ask? I KNOW I bring value to the relationship, or the relationship wouldn’t be so strong and loving and supportive. I know that much about all relationships…you can love all you want, but if both sides don’t offer love AND the kind of support that the other side needs, the relationship will falter. So what, exactly, I bring to my parents, I’m not sure, but I know some of it is joy at my very being, because that is, largely, what they bring to me. I bring them unconditional love. I bring them the promise of doing my best to care for them and to help them in any way I can whenever they will need it, in any way I can.

Mostly, though, I hope that when they see me, they feel even one tenth of the joy and relief that I felt when they stepped into my home that day, that blessed day, when I was a wounded little girl, and the only thing in the world that could even BEGIN to heal me was the presence of my mommy and daddy.

 

Friday 20 November 2009

Aunt W.’s been calling pretty often since the surgery—about once a week or so—and I’ve really appreciated it. I’ve missed her for much of my teen and adult life. I remember enjoying her so much in my childhood. … But I’ve been so glad that she’s been calling. … [I]t’s almost like I have a grandmother to talk to again. I hear about her aches and pains, and I pray for her, and I hear about her grandkids and kids, a branch of the family that I rarely get to hear about any more. And I tell her I love her. Because I want her to know, to remember, and because I want to keep myself in the habit of always telling everyone I love that I do love them, instead of just assuming that they know.

I still can’t quite express what her calls have meant to me—possibly because I still don’t know or understand, myself, but it has been wonderful. … I dedicated myself again to [the Almighty’s] service. I do this [dedicate myself to the Divine] frequently now, not for the Divine’s benefit, but to remind myself that I have promised myself, over and over again throughout my life to the Divine’s work in this world.

Man, my thoughts are all over the place this morning! At any rate, I have truly enjoyed Aunt W.’s calls. I hear her complaints of pain and her joy in her children and grandchildren, and [I] think on both the tragedy and blessing of aging. And I realize that I miss that. My life has been richer for the relationships I’ve had with my parents and grandparents and their friends and siblings, something that we all too often forget, especially as we move on to build our lives and then move in circles with people largely of our own age group. I miss having a close relationship … with both of my grandmothers. … [It’s not] quite the same, of course, because [Aunt W.] is not my grandmother, and she has neither of their personalities, but she is an older woman who knows more of some things in the world than I do and who can teach me many things about what it is to be human and to live with the hardships of life. And dealing with pain and disappointment.

 

Saturday 21 November 2009

Just before falling asleep last night, I heard the reassuring voice again, calmly telling me that my vision would be restored to me, that it would come back almost as good as it had been, and I would drive again, but it will take some time, a year or more.

I know I always doubt the voice. I always think it’s just my own (sub)conscious trying to calm me. But I have faith now, and I don’t doubt it now. I fear that I’m imagining the voice and its truth, but I believe in it and what it tells me. …

I noticed while … looking over at our orchard that I could see more details despite the sun shining down in my eyes. … So I’d say that’s progress. It is, of course, not the kind of progress I always have in mind, but I know almost nothing about how the eyes function, so maybe it’s a step in that direction. So long as I see progress of any sort in my vision, I’m happy and thankful to the Divine for this miracle that has been wrought in my life.

At any rate, it’s still been a rough day today at points, … but … I realize that when I look out the window, I can see the details in the house across the road or in the barn a half mile away better than in the door across the room. So that makes me realize that it’s just another day of my eyes and brain adjusting and trying to figure out how the hell to see things most effectively. And then I close my right eye and open my left eye and remind myself how much of a miracle it is that I can see nearly as well with my left eye now as I could before all this started. … And that gives me some comfort and hope. That, and the dreams. And the voice.

 

Sunday 22 November 2009

From an e-mail to [Mike’s grandmother]

Every week, on the day he sits down to apply for jobs, Mike gets down, because many of the job postings that he finds end up going to broken links, pages that aren’t even maintained any longer—probably because whoever maintained the webpage for the job was laid off.

We are willing to relocate … because, thankfully, now that I work from home, I can work from anywhere with an internet connection and electricity. (…I count my blessings every day that I didn’t lose my sight until I was working from home and didn’t have to drive to work.) We hold out hope that there will be many, many jobs for Mike to choose from in the next couple of years … but until that happens … we’re plodding along with our fingers crossed. …

Love,
Stephanie

***

I decided to look up the doctor that I will be going to on Tuesday [Dr. A] just to find out a little more about him. …

That led me to curiosity about Dr. L, so I moved on to look up a little more about him. I found out that he graduated from Johns Hopkins and did his residency at the Mayo Clinic. Holy cow! … Johns Hopkins AND the Mayo Clinic!

How incredibly, wonderfully blessed I have been regarding these doctors and this care…I can’t even begin to comprehend how—well, lucky isn’t the word, and blessed just doesn’t seem to begin to cover it—I have been in this. Miracles, indeed.

 

Tuesday 24 November 2009

Called IN Neuroscience Association, “home” of Drs. V and H, on 11/23/09 to ask about possibility of refund because visit to Dr. V when she said she wouldn’t charge us anything but we had already paid cash before we could even be seen. The lady in billing looked up my information and said they had submitted the claim for refund already and that refunds go out on Tuesdays so mine should be on its way soon. I was shocked and blessed and surprised…a refund issued without me having to request it? Strange. All the others, I’ve had to request. Yep, we’re definitely being watched over. So, everything we’ve paid out of pocket so far for prenatal care and “headache” follow-up except for some $70 to $100 for medications is scheduled for reimbursement. That’s good, because we may need it for eye surgery fees and my glasses.

***

Saw Dr. A today. His nurse who first did the eye exam told us that we couldn’t have been in much better hands in the area that she knew of, with Dr. L and Dr. A taking care of me.

I actually started crying in the eye exam while trying to decide which lens, “A” or “B,” the first or the second, was more clear with my right eye. With the visual-field disturbances and blind spots, what’s clear one second is unfocused the next, and I didn’t know how to say that one that had JUST been clearer had suddenly become much blurrier than the other. For someone who’s always had “better than perfect” vision, that was tough. Still, my vision was 20/20 in the left and 20/50 in the right, so it had continued to get better—the visual acuity, at least.

Dr. A [discovered that part of the irritation in my left eye was caused by] a bit of thread … left from the surgery when the filmy layer of my eye had been reattached. … He [removed the thread] and said the eye shouldn’t bother me anymore. Yay!

The visual field test that Dr. L wanted done was not to test my peripheral vision, it turns out, but to test the vision in the main cone of sight. I was put in front of a machine with a blindfold over one eye and told to focus on a point of light. Then, periodically, a light of varying length and intensity would flash around my visual field, and I was to push a button whenever I saw a light.[6] … Mike had watched the computer monitor during the test. Finally, he said, he was able to see and understand just how many holes I have in my vision, especially in my right eye. It’s not quite the same as him seeing them himself, I know, but it was nice that he can at least visualize a rough approximation of what I’m dealing with. …

 

 

 

 

 

 

All in all, it doesn’t look like I’ll be driving any time soon (big shocker there, since we know I may never drive again—it still makes my heart ache to put those words in a coherent thought and makes me almost cry to say them). Like I told Mike on the way home, if I have to make peace with my vision the way it is, I will. I mean, it’s a miracle that it improved to this point, and at least I can read and work and don’t usually have to be led by the hand to go anywhere. I still hope and pray that my visual field and periphery will improve, and I believe it will, but that’s going to be a long, slow journey down a potentially winding and bumpy road. But every day, I will be thankful for the sight that has been restored to me that I took for granted only months ago.

 

Monday 30 November 2009

We had a nice Thanksgiving visit [at my parents’]. … We had one evening in which I ended up crying and sort of depressed again because Mike wants physical contact, wants sex, and I just feel broken. I worry about having babies, and I worry about raising children, and I can’t seem to feel aroused for more than just a few minutes at a time, and I don’t really feel any desire at all. I just feel…broken. I don’t know if that’s normal, if it’s temporary depression, if it’s something I should think about getting drugs for, or what. I just don’t know about anything. And I don’t know who to talk to about it. Mike is withdrawing because of it. I need emotional support to draw me out and help me feel comfortable and maybe physical again, but he needs the physical to feel emotionally close again. I don’t feel right demanding that he support me emotionally, knowing what he’s supported me and is still supporting me through, but I don’t know what to do. Even now, while I’m thinking about it, I want to break down in sobs. I don’t know who to talk to or even what to say. Who would understand? …

We visited Aunt K on Thanksgiving Day because she called … and said we should come by. … Just before we got there, I started crying, inexplicably, and was still crying when we got there, trying to get myself to stop. It was horribly embarrassing, standing there on the front porch, with my face buried in Mike’s chest and my back to the door while Aunt K let Mom in and asked Mom and then Mike in a hushed voice, “Is she okay?” But a couple of minutes later, I was better and acting like everything was normal. …

We got home from our visit today to find a huge pile of mail. And in that pile was a bill for my eye surgery for more than $8000. Yippee. I have no idea how we’re going to pay for it, especially since they want it paid by Dec 16. Yeah, we’re going to have to work out a payment plan on that one. Yikes!

***

Thank you for allowing me to share this part of my journey with you. Please let me know what you think so far and if you want to hear/read more of my story.

If this is the first chapter of my story that you’ve read or listened to, you can catch up by listening to all of the episodes on my YouTube playlist, starting here.

 

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Notes:

[1] Ralph H. Blum and Susan Loughan, The Healing Runes, p. 87

[2] Ralph H. Blum and Susan Loughan, The Healing Runes, p. 86

[3] http://www.lowvisionsolutions.com/resources/visual_impairments.html

[4] Kurtz, on his deathbed, in Joseph Conrad’s Heart of Darkness.

[5] Joan Nelson, Final Exit: A Suspenseful Tale of Passions Unleashed, p. 211

[6] The 30-2 test, or the Humphrey Visual Field Analyser, tests the central 60 degrees of the visual field.