As September 2010, the month of not-so-happy anniversaries, continued to be stormy, I prayed for help in always finding that part of myself that is steady and true and unwavering, the part that can find happiness when there is happiness to be found and that manages to find peace even in the maelstrom.

One night while praying, I asked for help in “being the beacon I am supposed to be.” That was when I realized “I’m scared and a little confused, but I see it as truth somehow, no matter how much my modesty and fear want me to deny it. Somehow, I am supposed to be a beacon to others. Rather than deny it or run from it, I am simply trying to accept it and live, as I am trying to live with all other aspects of my life as it has changed from a year ago.

“Who am I to be a beacon for? I have no idea. How? Again, no clue. But as I think about the people who are beacons in my life—lighthouses drawing me onward to better seas of my soul, I realize they probably don’t realize that they’re beacons, either. They simply live the best they can, often unaware of the way they enrich other people. … None of them are perfect, and maybe I’m as much a beacon to them as they are to me.

“We can find our strength in one another, become lighthouses lighting up an entire coastline by working together, or clustering together to make a light source visible from so much further away, helping so many others navigate choppy seas that much more safely. Who says I have to be a lone beacon?”

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

 

Tuesday 14 September 2010

Mike saw me writing and crying when he got out of the shower. … He sat next to me and asked if I was okay. When I said I was as okay as I could be, he patiently asked what had caused this. I explained that it happens fairly often and is sometimes triggered by something very small or sometimes even, seemingly, nothing at all.

I of course sometimes choked up simply because I considered how much he clearly cared. His eyes were red in response to my tears and explanation, and, to his credit, he didn’t try to pep-talk or distract me. He cracked a little joke in the conversation that wasn’t forced and was entirely characteristic of him, and when I smiled, he said, “You missed me because I make you happy…er.”

I don’t think he knew that I am still a bit depressed. Well, I suppose he can’t help but notice, but I think he didn’t realize until I told him tonight, calmly and matter-of-factly, that such crying moments are still fairly common for me.

As we grocery-shopped a little later, he repeatedly kissed and … flirted. I don’t know if he was trying to cheer me up or was just showing affection after not having seen me for a couple of weeks. Sadly, I wasn’t very responsive—more reactive than responsive. But I did appreciate the attention—rather, the clear concern and love and affection. I simply felt preoccupied, something I know I sometimes felt before the depression.

I am truly happy to be back with him. I’ve not felt full of joy to be back with him as I have before, but now it’s more like a deep contentment.

***

[I helped Mike with yard and garden work today.] He said he needed me to mow … a section [of yard], and I did. The car needed moved [in the driveway], so I moved it. … I didn’t stop to think about what I couldn’t do; I just did what needed done. It felt good. I didn’t even realize how I had been acting “different” [by doing, rather than worrying] until it was getting dark and almost time for us to come in. A good day so far. I’m determined to apply a framework to my life again and have more days like this.

 

Thursday 16 September 2010

[I] feel I should be listening to God. That was the message. [I] read an article online [that] suggested praying. I do that. Had the urge to search for new research on retinal repair. Nothing new published since 2007? Well, it was [a] hopeful [search].

So now, one phrase repeats over and over in my mind. Nothing else. I’m going to freewrite, starting with that phrase, trying to let the message of my guide(s) come through unimpeded:

By the grace of God, I am alive. By the love of God I can see. I see the love that fills me. The love that surrounds me, too. The peace comes later, at the end, but this is the path you chose. You question and doubt, but fear not.

[STOP] I’m trying for more. Getting an image of a [certain] intersection in Tell City. …

There is nothing for you to do. Breathe. Live. Hope. Dream. Love. Live. Kiss your man. Hold him. Know him. Be with him. Just be.

[STOP] Trying for more again. I was starting to analyze & think while writing. [That] stopped [the message] in its tracks. This is a strange experience—I’m getting rough (approximate) sounds—esp. the “open” sounds, the vowels, at the ends of phrases first, then almost like the message “fills in the blanks” up to it. Bizarre.

Not a test. Not teasing. Don’t play.

Stop telling us that you are listening, and listen. No need to broadcast your intent.

Leaves falling. Brown. Carpet. Lovely bones. Quit analyzing. Listen. All becomes clear or doesn’t. You listen now. The wind is outside your window. It blows, knocks. Do you answer? Will you let it in, or will you let it pass? The crows are friendly, circling. It knocks again.

Listen to the space that fills the silence, when the wind has ceased and your mind has slowed. (I heard nothing but a sleeping cat & my tinnitus—not even the cars always passing on the highway outside—for what seemed an unusually long time.)

As soon as I stopped writing that, another silence filled the air. Strange. This is when people are driving to work. Many vehicles.

Your husband is on his way. It is his time now. (Time for me to focus on Mike, who just texted to say he is on his way home. I’m going outside to check out this wind.)

***

It is most definitely a transition day—nearly fall, but not quite yet. Several trees have already lost their leaves without turning, though our rain has not been deficient like in Southern Indiana this year.

The wind is out of the west—still the same wind as several hours ago, and I sense the change in it, even if I can’t smell it or feel it.

Dreamt all “night”[1] of flying and school (going back) and reunions with very long-ago friends. … Feel like I received messages all night, though can’t remember them now.

Today’s wind is West. I’m sitting in it, embracing the experience of it, will soon face into it and let it flow over and around me.

In the Lakota Sweat Lodge Cards, Wind (Tate) is Change: “Hear the message in my soft voice. Then I need not become so loud but for my own exuberance. I have much to tell you, for I travel far and wide, high and low. I … return again … with messages for you.” … [Meditation]: “I trust the deep promptings of self that guide me through change.”

My interpretation [of the guidance offered by the book]: Time for some major changes, even if only through a minor shift. Take the steps to cultivate that change.

Also, Wind is Self-Expression: “You need to consider vocalizing your questions or feelings. Use sound as a means of expressing your emotions, either … through yelling, chanting, or singing a particular sound, or perhaps by banging a drum or using another musical instrument. Let the vibrations of the sound you make shake up the tension and anxiety you’ve been feeling inside. Allow the wind to carry the sound waves into the earth where they can be absorbed. The intention is not always to keep quiet but to ‘let it out’ and hear the sound of that release. The release gives you the opportunity to experience the liberating supernatural breath in many ways. If you are angry, express your feelings to the listening Spirit before confronting an individual or situation. … See that your anxiety and anger do not destroy your power to handle and resolve the situation effectively.”

I also see this, because of the west wind: The West—Black (Sapa), Meditate. “I stand at the origin of the West, of darkness, of inner time. I give pause, strengthening retreat from the world of time. Avail yourself of my gift. I bring you a special peace. Seek me in the dark and know comfort, not fear. Seek me in the spaces between words. Seek me between the footfalls upon earth. I am there. And I love you.”

“Strange” and “spooky” come to mind to describe how similar these words (both for Tate and Sapa) are to the messages I received while listening last night. But I know by now that they are messages I’m receiving, not creating. Still, it always gives me a strange feeling to think that I “know” these things (via my guides) before I read them. Part of me tells me I’m nothing special, yet those around me always tell me otherwise. I need to embrace my specialness in all aspects, not just those I’m comfortable embracing. But I’m only comfortable being “special” when it aids someone else. And the message nearly shouted in my brain was “You must care for yourself before others!” How many times have I told that to other people?

I just broke [from writing], spoke to the wind, the sky, the world. It wasn’t a roar, but a whimper, a whine. Essentially: “How dare you take my essence. My baby, my sight, my hope, my everything. My independence. My joy was the basis of my personality, the core of who I was, and it’s gone. My baby was my hope. And I may never have another. What’s left of me if my joy and hope are gone?”

What is left?

Kindness. Love. Self-pity. Fear. Not quite a blank slate. Definitely not my old self. This me is tired, care-worn. Battle-tried. Tested. Broken? Surely not broken, if I can still love.

But it’s a different love than I knew before. More easily expressed, but there’s something different about the way I feel it. It is the joy that’s gone. Utter, exuberant, middle-of-the-day, no-cause-at-all, singing-and-dancing-in-the-car joy. It’s gone somewhere. I want it back. I don’t mind feeling sorrow, adding new emotions, but I don’t want to lose the old ones.

And then, like a petulant child, I squeaked and ordered and moaned to the universe, “Give it back!” over and over again. Give me back my joy, my personhood.

 

Monday 20 September 2010

Spoke with [an old friend] online the other day. It was a good talk … like [our] old conversations. I really had missed him and our discussions.

He mentioned to me that some studies have found a connection, a benefit, to using only the mind to focus on doing an exercise, without physically doing it. A few years ago, he had some debilitating pain that didn’t allow him to do much physical activity. … Unable to physically do exercises, he concentrated mentally on them. The results aren’t as dramatic as when one physically does the activity, of course, but there is still benefit when focus is really good: increased metabolism, decreased fat, lowered heart rate. It just shows the mind-body connection. [He] used these for a while and got himself to the point that he could physically do the activities and get better benefits.

He mentioned all this when I explained my problems with strenuous exercise. I’m going to have to try it, I think. Get to the point where I can (hopefully) exercise strenuously or semistrenuously without headache. Ah, such a dream. But until I can get started on that, I have started again on my visualizations in bed at night to heal myself. I had let that activity drop, but this served as a reminder. I will keep healing…

 

Saturday 25 September 2010

Was just catching up on some PTC support group emails. As usual, I feel a little nervous/down after reading them. Sad for everyone on them, especially those who haven’t been able to find relief from pain or other symptoms. And also nervous because one of the women mentioned that she is steadily losing her peripheral vision despite the fact that she’s had shunts & that the doctors see no swelling in her optic nerves. It is hard to keep faith of returned vision when I read such stories, but I must, or I will sink into despair.

Also in the threads I read today were questions about whether it’s “okay” to fly or to ride amusement park & fair rides. [They are two] of my favorite things—but I have been filled with trepidation. The consensus from people & their docs has been to do it if your symptoms are well controlled and you feel fine, but to be prepared for them to trigger pain immediately or later. In other words, business as usual with this ridiculous condition.

And again I ask “Why?” I know it’s a pointless question—one that brings more frustration and sadness instead of answers, but it pops unbidden into my mind. As with all illnesses & infirmities, no one deserves this. Just, why?

I’m tired of crying, of thirst, of worry, of relying on others for transportation, of stepping on and kicking my cats because I can’t see them in low light, of having to consider whether the food I’m about to eat has MSG or too much sodium, of agonizing over what’s causing each headache and day of blurry vision & whether I should call the doctor, who probably doesn’t have any more clue than I do. Why can’t SOMEONE have the answers?

I have to stop this line of thinking. It’s only making me sob, giving me a headache. Looks like distraction and hope are what I have to aim for tonight…

***

How can I feel so sad when I am so blessed? I do have amazing friends and family who are willing and able to drive me places and listen to me complain. At least I have them and my work, which I truly enjoy. And I am still able to find hope and happiness, even if I sometimes feel they’ve deserted me for a bit. But they always come back. Quiet has settled over my heart again for a while—not sure I can call it peace, but a hush, definitely.

***

[Something on] Facebook … today tells me that forgiveness is necessary because holding on to anger and past hurts hardens my heart and hurts me. But whom can I forgive? The universe? I’m angry, but I don’t think there’s anyone to be angry at. And right now, I’m not sure if I’m ready to give up my anger. I don’t know if I can just yet.

 

Sunday 26 September 2010

I have finally been calm, even cheerful, most of the night. I’ve had a crockpot meal cooking, and several windows open to let the fresh … air in. It smells like fall with the smell of pork & onions filling the house with the fresh air. That’s great and makes me happy. …

I got a pain spike about half an hour ago. It wasn’t terrible, and resolved after a few minutes, but then I felt anxious out of the blue. I was … editing and felt anxious, then started thinking about the hospital. It’s mostly gone now, but a trace of it lingers, like [the way] the feel of a particularly peculiar dream hangs around for a few hours after you wake up.

I wonder if these ups and downs are going to be common for the next few weeks, over the anniversary of…well, anniversaries, I guess…of the hospitalization for the miscarriage, the D&C, the beginning of my vision loss, … my weeks of pain, and my eye surgery. It’s been nearly a year since I’ve driven a car. Nearly a year since I’ve been able to look at my husband’s face and see all its details at once without having to shift my gaze just so.

Normally, I love fall. This [fall] should be an interesting revisit to an interesting combination of bad and good.

 

Wednesday 29 September 2010

There are days I could swear my vision is better—I can see better in the twilight, think I catch movement in periphery that was lost before. And then the next day, it seems the same as it has been … maybe even worse. …

And then I read the support-group posts and see people who are having no swelling on their optic nerves but [are] losing vision anyway. Sure, I’m “stabilized”—no swelling, rarely an unexplained headache. But when can it just suddenly start going bad again? Maybe never. But how can we know? The more I read the posts, the more I am convinced IIH is a symptom resulting from many possible causes and it’s sometimes a catch-all diagnosis. But then again, maybe not. Scary and mind-boggling all at the same time. [I] need a personal doctor, a personal miracle to restore my lost vision, a cure for IIH. That’s not asking for so much, is it? Vision and hearing loss, sometimes with no warning or indicators, headaches with no relief, tinnitus, back and neck pain, seizures, vomiting, depression, disability, living in fear that any food or activity or wrong movement can trigger nasty symptoms—very little hope of symptom regression, though we know it’s sometimes possible. Sometimes I don’t understand how any of us cope—and I’m not suffering symptoms every day…though many who do still can see better.

Ah, well, the grass is always greener…

***

It’s sometimes difficult to offer my thankfulness to God—not because it’s not there, but because it’s sometimes buried so deeply beneath anger, resentment, sadness, or any other number of emotions. But I still try to find … that thankfulness and offer it up, for I do have so much to be thankful for. Chief among those tonight is my lack of jealousy at other people’s parenthood. When we were trying to get pregnant and I heard a friend say she was pregnant, no matter how happy I may have been for her, that green-eyed monster always reared its ugly head. … I can’t recall feeling that jealousy since all of our tragedy. Instead, I am simply joyful for those who are joyful, anxious with those who are anxious. For this, I am thankful today. I hated feeling that jealousy, because it always made my offers of congratulation seem hollow, and my heart always broke, not only because I wasn’t pregnant yet, but because I wasn’t as happy for my friends as they deserved.

Tonight, I prayed for help in always finding that part of myself that is steady and true and unwavering, the part that can find happiness when there is happiness to be found and manages to find peace even in the maelstrom.

And before I even knew what I was asking, I asked for help in “being the beacon I am supposed to be.” When I think about that statement, I’m scared and a little confused, but I see it as truth somehow, no matter how much my modesty and fear want me to deny it. Somehow, I am supposed to be a beacon to others. Rather than deny it or run from it, I am simply trying to accept it and live, as I am trying to live with all other aspects of my life as it has changed from a year ago.

Who am I to be a beacon for? I have no idea. How? Again, no clue. But as I think about the people who are beacons in my life—lighthouses drawing me onward to better seas of my soul, I realize they probably don’t realize that they’re beacons, either. They simply live the best they can, often unaware of the way they enrich other people. … Some of them have been my beacons for a long time, some only recently. Some shine back at me what I always used to think I had. … But the point is that they are all beacons—whether in only one aspect of their lives or in many. None of them are perfect, and maybe I’m as much a beacon to them as they are to me.

We can find our strength in one another, become lighthouses lighting up an entire coastline by working together, or clustering together to make a light source visible from so much further away, helping so many others navigate choppy seas that much more safely. Who says I have to be a lone beacon?

***

Another thing I love about Mike is the way he accepts my beliefs, whether he believes them or not—and his openness to belief, even though he sometimes is so [uncomfortable with religion]. …

As scientific as he is, he still has some childlike wonder. He’s still open and tender.

***

[Reading] a book about a … method of helping athletes get over performance problems by finding and addressing all … traumas stored in the mind & body. The authors mention that every surgery is traumatic for the body, even if we don’t register it consciously.

As [I read] one of the authors’ details [about] his work with one of his clients, … I processed my own memories. My healing guides have been using this process with me.

Somehow, that one month really traumatized me. (I’ve never used that word before—it seems so strong, but that’s what it was—I didn’t get a long, drawn-out illness to start with, but a trauma—a month-long trauma to trigger everything.) And my healing guides have been working with me this whole time—even when I’m not aware of it, I think—in much the same way this psychotherapist uses psychophysiological treatment. I can’t say how, other than all the reliving I do, the writing, the processing of every little detail. When I try to bury the thought or avoid the urge to process the event or pain, my guides send me reminders, make their presence known, like parents stepping in to say, “I know you don’t want to do your homework now, but you’ll be glad you did 5 years from now,” or “I know this medicine tastes terrible now, but it’ll keep you from being sick for weeks or months.”

***

From that sports book: “We have repeatedly observed that the traumatic nature of any experience is determined by the meaning that is assigned to it by the individual him- or herself.”[2]

 

Notes

[1] Mike was working second shift, so I had changed my schedule to match his, and we slept mostly in the mornings.

[2] I can’t seem to find source information. I don’t know if it’s a book I edited, borrowed from a friend, or owned, and I have no idea who the author is, or the book title. If you know, please share that information.

***

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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