September 2010 began the month of anniversaries, including of discovering our baby had no heartbeat and of my trip to the ER because of the miscarriage. A lot of healing had happened already, but this was not to be an easy month. I wrote, “Some days, I’m sad. Some days, I’m pissed off as hell. Some days I’m ecstatic to be alive. Some days, I’m terrified of what is going to happen, of how I’m going to live the rest of my life like this. Some days, I feel all of those things. But I go on because life is worthwhile, because it simply is, and I exist and the sun is shining or the storm is raging. Life is beautiful.”

This month was an emotional roller coaster, so I’ve broken the text into two pieces to make it a little less overwhelming. You can watch the YouTube video for the first part of this chapter using the following link, or read the text below.

 

22. September 2010

“Like a photo album, gratitude gets more precious through the years. Memories, like pictures, hold life still long enough for us to savor it; they record changes and preserve time. Gratitude frames our experiences so we can think about them in different ways at different times as our understanding grows new meanings. Gratitude keeps alive the gifts and blessings from the past and feeds hopes for the future.” —Linda Prince Jones, Devoted Love[1]

 

Friday 3 September 2010

[I felt a] couple [of] big waves of sadness over the past few hours. This time last year, we were getting ready to go in for our first ultrasound to look at our baby. And then to find out that we had likely miscarried. [I’m feeling] melancholy. Our poor baby. … Poor us. [We were] still hoping maybe we were wrong about the dates and were just behind. [I was] still able to see and drive. No massive loss of blood. No massive headaches. No massive loss of vision.

I’m left wanting 2 things in life—to be a mom and to be able to see. A few days ago, I wondered, if I could have one or the other—vision or driving—which would I rather [have?] That’s tough, but it comes down to vision, ultimately—for safety and practicality.

Just one year ago, things were so different.

I carried a baby for so few weeks, and yet my life—the lives of all my loved ones—are changed permanently because of it. I hate the unfairness of it, the injustice.

***

[Some friends] were here [at my parents’ house] with [their] kids today, and I got to watch Mom interact a little with the [family’s] baby. … There was happiness in her voice as she talked to him, and she made him laugh and giggle. I got close to crying at that a couple of times. But at least she has the chance to be “grandma” to this baby even if I can’t give her a grandchild. …

Life is just so damn fragile.

 

Saturday 4 September 2010

Today is when we’ll be setting up for the party. I’ve never given it a second thought, jumping in and helping move things and set up. But now I’m worried. We’re moving tables 6’–8’ long, and handling tent poles [taller] than me. And me without my peripheral vision. I’m so worried I’ll hurt somebody, smack someone in the head or something. I don’t want to sit out, but I’m worried about working too hard and getting a pressure headache. But I don’t want to use that as an excuse. I want to be able to do normal, everyday things again without fear. I’m just so worried about hurting someone. And kind of worried about navigating the crowd on Sunday without running into people or objects. I know the only way to conquer the fear is to face it, but I just wish I didn’t have the occasion for fear. And I worry about breaking down in tears while talking to people Sunday. I’m worried about people being afraid to say the wrong thing and just saying nothing instead.

Of course, I know worrying about it does no good, and for the most part, it’s not been a problem when I’ve come home [to my parents’ house] before—except when I was still on Topomax and dealing with the big depression and anxiety in November.

Still, I had to get the worries written down so they won’t spin so actively in my head. I’m exhausted, but they were keeping me awake [and] crying into my pillow. I want comforting arms around me and the assurance that, somehow, everything’s going to be all right.

I just need to find my courage and hope. They seem to be the first two things to go to sleep when I’m exhausted, leaving just me, anxiety, and tears to party together with insomnia [at 3 AM].

***

Well, I didn’t injure anyone today (that I’m aware of), other than smashing [one person’s] fingers a bit when we were stacking chairs. But nearly everyone gets a smashed or pinched finger when we move chairs, so that’s not bad. Of course, I didn’t get to help a lot, but I think it was only a little less than last year. Sometimes it was because I hung back a bit, and sometimes because there were just so many people that things got done very quickly. …

At one point during one of the breaks, [an uncle] asked me if I had applied for disability or if I could. I explained all that stuff [to him] and to [two other friends] who had shown up a little earlier. [One of them] didn’t know what we were talking about, so I explained briefly about the miscarriage, IIH, vision loss, etc. [My uncle and the other friend] seemed to listen pretty intently, too, so I’m guessing they hadn’t really heard so many details of it.

I held it together. I seem to be able to talk about that experience generally, with little discomfort. But that was the only time I had to talk about it today. I don’t know if that’ll work tomorrow.

 

Wednesday 8 September 2010

Feeling a bit guilty, a bit worthless. Mom always buys bottled water for me and Mike to drink. I’ve been drinking a lot of it this week and a half. In the “old days,” I would have driven to town to replace the water, but last night when I was out with Dana, I had the chance and forgot.

I remember Mom & Dad used to tell me how helpful I was, how helpful it was for me to just get groceries for them. Now, after experiencing how challenging it is to get basic errands done around Mike’s [work] schedule, I understand just why it was so helpful. … I feel like a freeloader, eating their food and drinking their beverages without helping. Ugh.

 

Thursday 9 September 2010

My “Message from God”[2] on Facebook today:

It’s time you stopped hiding from life, and said yes to the adventure of being alive. Enough of the routine already. Go on, have an adventure—do what you always wanted deep within your heart. Do what brings you alive, and the universe will open doors where there were only walls.

It’s great advice for any day, of course. But what’s sad is that I know what the routine is but I don’t know what “qualifies” as an adventure. Worst, I can’t think of what “brings me alive.” How can I not know such a thing? …

I used to go on walks around Mom and Dad’s property when I [lived] here, but now I never venture out on my own—is that what always makes me feel alive? I haven’t been out on “the grounds” since last summer. Now I feel I should walk to where we had our wedding ceremony. But I’m scared of holes, snakes, a storm, an emotional realization. I never used to be so scared … it’s awful.

***

I’m here now, sitting where we had our [wedding] ceremony, and I realize it was fear of confrontation keeping me away from here: Not wanting to confront my feelings for a place so special to me for so long before my vision was damaged. …

I cried when I got to this spot. I can feel it; it’s sacred. Perhaps it’s sacred only because it’s meant so much to me and [because] my attentions and meditations and rituals have “made” it sacred, but I think it is the sacredness that has always called to me. I sit here and am humbled, and my eyes fill with tears, as when I approach the altar of a church built and maintained with reverence and filled with love.

The bugs chirp—cicadas, crickets—the crow caws, the cows low, branches rub and snap (deer are near). The leaves form a canopy of dappled light above; the grass, a soft carpet and cushion below. In the distance, song birds call to one another. The damp, cool soil of the creek bed fills the air with a perfume dancing alongside and sometimes joining with the smell of newly brown fallen leaves. The whisper of a breeze hushes, slips past with hints of licorice (anise?) and then something I can’t identify (beech?), and clouds crawling over high above.

Several years’ worth of a thick, woody vine’s stem wrap around a mostly dead tree trunk and previous years’ vines, forming an intricate knot of dun, chocolate, moss green, everyday brown. A chill creeps into the air. Cows low and moan, dogs bark, frogs call one another, and the sound of [something] falling begins sporadically, then becomes more frequent as the breeze increases—walnuts? Leaves? Raindrops? Birds jumping from branch to branch?

How can this spot not be holy?

***

[As I was] standing before the creek, near several walnut trees, in a spot of nearly bare earth, the lines came from my mouth: “Two roads diverged in a wood and I took the one less traveled on…and that has made all the difference.” Yes, that seems to be my theme lately. But I wonder what that difference really is. “Why is my life meant to be different?” I wonder. And then I hear the hum of hummingbird wings nearby. But I cannot see the bird.

Am I forever destined to hear but never to see?

I hear the birds, the clatter, a chitter, the hum, the crash, but I see nothing but green all around. And when I cry, I can’t see even that. But now, in my crying, I’ve moved a step or two, and right where I was standing when I spoke of roads diverging is a turtle bone, picked clean. A leg bone, I think. It’s not a unique object, a turtle bone, so near the spot where the remains are left after turtles are butchered for soup. But it is completely clean, stands out clearly against its bed of earth and debris, and is exactly where I was standing a few minutes ago. It is for me, at least for a while.

***

I drew [the rune] Berkana, reversed.

[The text says I’m experiencing] interference of the growth of new life (most likely because of personality characteristics). I do feel dismay at failing to take right action, but rather than dismay, need diligence. Examine everything. Am I putting my wants before the needs of others and myself? Strip away until I can [identify] the obstacles to growth. May be required to do preparation all over again, but through correct preparation, growth is assured.

So…I stepped off the path, even the less-traveled one, and I need to find my way back. This turtle bone … was … a sign. A sign of stagnation, the “opposite” of life. It was drug to its place, cracked open for the marrow, its life force exhausted. I must guard against this.

 

Friday 10 September 2010

I remember when we were trying to find the neurologist’s office that morning that we had gotten me in for an emergency appointment. Mike was driving all over a medical complex, and I was trying my hardest to see signs and [to] read and help him, but I could barely see anything. I think it was cloudy and rainy that day, but it could have seemed that way only because I could barely see. Finally, I had to pee terribly, and Mike figured he needed directions, so we went into a building. He had to lead me in. He walked me over to the door of the restroom, and I walked through the door. I was completely panicked. I couldn’t see the stalls. I simultaneously hoped no one was in the restroom to see me and that someone was there to help me. I bungled around, bumping into things, until I found a stall. Then … [after I came out of] the stall … I couldn’t find the sink. Or the door. My heart started pounding. I don’t remember if I bumped into anything. I don’t remember much, just a gray haze. I exited the door and looked closely for Mike. I don’t remember if he found me and grabbed me or if I had to call for him, but I remember I had troubles finding the door.

At some point, Mike commented on this building and the people in it. It was a cancer treatment center, I think, and we were the youngest people there. I think he said he felt a bit embarrassed about leading me through a building full of people so very old and sick. But we weren’t exactly moving quickly through there, as I clung to his arm, having to be told if we came upon a step or a door. We asked directions from the ladies at the registration desk, and I did my best to gratefully say thank you to them with a large smile and without fear as we walked away. It’s September 2010, and my intestines still knot when I think of that day, of that intense darkness, that shadow, that grayness.

I am incredibly blessed to no longer be that blind or in that much pain, but it still harbors so much pain for me. I am full of dread. My heart hurts with it, my bowels clench, my breath catches. Why this memory this night? I’m not sure, really, but I am taking this time to face it, to acknowledge it, to recognize that it is over, it has passed, it doesn’t have a great power over me any longer, except to teach me. Even in my darkest moments, I had support, and I was cheerful. Even in my deepest pain, I had hope, and I didn’t cry; I had hope and faith that things would be better soon. I was able to make jokes with my husband and love him. We were able to recognize that others had problems just as big as ours.

Yes, [at the time] we thought this would be a temporary thing, that my vision would return as soon as we figured out what was going on to cause my headaches, because we were sure that the vision loss was caused by the headaches. Still, why lose my hope, my faith, my trust in myself? That was before the Divine had spoken to me, had promised me all would be well, my vision would return. That was before so much. That was back when I trusted the medical field to be a helpful tool, a great resource, but to not know everything, and yet now I sometimes believe what they tell me about my condition and what’s best for me even though I know they barely know anything about this condition. Have I gained faith in something larger than myself but lost my faith in myself? What a lousy thing for me to do. I definitely need to work on that. Becca told me about that on that night in June at her house, and Tina reinforced it. I am important in some way. I need to have faith in myself, trust in myself. The Divine does, and so must I. Who am I to question the Divine in this? Questioning it gets me nowhere except with a reminder to trust in the Divine.

***

I only just remembered that my tarot … for yesterday/this morning was the Hanged Man reversed, and it spoke of getting back on the right path again, of getting focused once again.

I may be back on the right path (the one I chose when “two roads diverged in a wood”), but I don’t yet feel focused again. I still feel scattered, like I’m trying to collect pieces of a couple [of] paper dolls blown about by the wind and [to] assemble them all correctly while being blindfolded … as a fan is aimed at the pieces.

***

The only person holding me back is me. No situation is holding me back—only my response to the situation. Success is mine—its definition is ultimately up to me.

***

I’ve always loved the movie Wild Hearts Can’t Be Broken, but I haven’t watched it in years. I keep thinking about it this year, but I can’t bring myself to watch it. But I think I have to. I have to face it, to bear it even if it seems unbearable now. How can I face my fears of living like this if I can’t watch a movie that should be inspiring?

 

Undated Fragment (assumed some day in 2010)

Some days, I’m sad. Some days, I’m pissed off as hell. Some days I’m ecstatic to be alive. Some days, I’m terrified of what is going to happen, of how I’m going to live the rest of my life like this. Some days, I feel all of those things. But I go on because life is worthwhile, because it simply is, and I exist and the sun is shining or the storm is raging. Life is beautiful.

 

Saturday 11 September 2010

Mom brought me back [home] this evening. I’m glad to be back with the kitties (and Mike [when he gets home from work]), but I miss Mom & Dad’s house, the lawn, community, Mom & Dad, all of it. I sleep better there, and I don’t have the headaches (even when the rain came in). I got a headache almost as soon as we walked into our house.

 

Sunday 12 September 2010

It’s September, and up here, the corn’s been harvested and “there’s a certain slant of light”[3]—we’re getting nearer the date[s] when Mike had to take me to the hospital, when I fainted, when I had the D&C, when my headaches and vision loss started. It twists me up in knots if I stop to think about it. This house has too many memories haunting me. I need to do a cleansing of it. I don’t want to feel sadness set in every time I come back to my house.

And Mike just left for work. I saw him for an hour. I’m really glad he has tomorrow and Tuesday off. I really do miss him.

***

The sadness has gone for a while. … I opened the front door. [The] warmth [from outside] and the cool air inside … mixed to give the day a middle- or late-autumn feel. … I could hear the birds and bugs and neighbors … and then autumn worked its usual magic on me. I was refreshed, cheerful, full of hope.

***

Just sitting here, and the thought occurred to me again that if we ever conceive again, it will never be “completely” joyful. Because of what’s happened before and my IIH and vision loss, we will always be incredibly worried—far more than when I was fat but healthy and we had … no health insurance and the possibility of gestational diabetes and [blood pressure] to think about. Of course, because we know about the condition, we can monitor it closely, but still, the worry. This is another moment when I want to rail at the world for having this terrible thing happen to me without the benefit of a baby to show for it. I want to shout, “Where is our CHILD?!” at the world. I know many opportunities have been opened to me, but they sometimes seem very small consolation for disability and non-parenthood.

***

[M]y … tarot card for the day [is the Seven of Wands], and although earlier today, I thought of it only applying to my work and [to] staying focused, I see on a new read that it also applies to my feelings today & [to] life with IIH. [It tells me to head off problems before they happen, that I need to be aggressive in staying on track and not allowing distractions to influence my path. It reminds me that it is possible to get overwhelmed in the thick of things but that I should steel myself against negativity and against distraction so as to not get lost or feel burdened. I need to grit my teeth and bear it, do the hard work that is required of me to maintain my integrity and move forward while keeping my purpose in mind.]

 

Monday 13 September 2010

I hate the way sadness and tears and perfectly horrible memories can pop up in the middle of an otherwise good day now. I’ve never been prone to depression, and if these small bouts are this distracting for me, I am beginning to really understand why those people prone to depression might turn to drugs or alcohol.

I’m so fucking tired of this, yet I see no end in sight for as long as I have my health and vision woes. I pray for strength and fortitude and hope, and for peace, for that’s all I can really do.

[One of my friends] has some rather big woes right now, but she still seems to keep a brave face on and to stay calm about them, for the most part. I remember being that way, back before the miscarriage and my vision loss, and I don’t think I’ll ever be able to truly be that way again. Still, though, I sometimes wonder if that’s because of this depression or the vision loss—or, far worse, because of the depression if it is caused by the vision loss. [Sometimes] I dread the thought of being so sad for [the rest of my] life as much or more than I dread the vision loss and its effects on my life.

 

Notes

[1] This was a thought that guided me through this month, as I looked back and continued to feel gratitude. I wrote in an entry, “Although there is sometimes sadness over what I have lost, there is immense gratitude for what I have NOT lost, and for what I have gained.”

[2] As far as I can tell, run by alldevotion.com.

[3] From a poem by Emily Dickinson.

***

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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