After an emotionally charged November full of struggling with my new identity, December 2009 brought depression and anxiety. During this time, I also began revisiting my memories of October’s events and taking a hard look at my desire for a child—where it had led me so far, where it was likely to lead me, and whether it was worth what could happen. I also began to really make my peace with the possibility that my vision might never be restored in the way I had expected or wanted it to.

Watch my YouTube video (link below) or read chapter 13 below.

 

 

13. December 2009

Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure. —Helen Keller

 

Tuesday 1 December 2009

Picked up my new glasses this morning. … It’s amazing how much of a difference they make. It’s a small difference, but a big difference, nonetheless. Really, things were only a little blurry, I thought, and I was coping just fine. I mean, I had thought I’d wear the glasses only to read. But then I put the glasses on and realized that everything had gone blurry without them. Suddenly, I could see the features on Mike’s face sharply again. …  Yes, I still have a lot of holes in my vision and the “cloud” over my right eye, but wow! I hadn’t realized JUST how blurry things were until I had the glasses to make them unblurry. It’s fantastic! …

So, where does that leave me in life? Still extremely sad about all the money that I have cost us and will cost us—$8000 for the surgery, about $350 a month for medicines, all the time and heartache. Man, and I still just don’t feel desire. But I do feel plenty exhausted. … I’m ready to be done having to go to a doctor’s appointment every week or two; I’m ready to be able to get back into a daily pattern so I can get my bodily functions back on track … and maybe get on my way to making a new baby with my husband, my dear wonderful husband. My healing isn’t over, but I’ve started healing. These glasses make a big difference. Or maybe … the change in some of those hormones did. Or maybe both. Only time will tell.

Oh, and God is great. The Divine is wonderful. The All comforts me, enfolds me, warms me, and lets me know I am loved and that all will be well.

 

Wednesday 2 December 2009

Notes from today’s check-up with Dr. L:

• Thinks I should keep seeing a neurologist regularly throughout my life to keep an eye on things. …
• Driving not out of the question. Will require a special driving periphery test when or if I feel I can drive. … Dr. A can set the test up for me.
• Peripheral vision coming back is “not unheard of.” Said it was a “small miracle” that the vision has come back like it has. … (It wasn’t a doom-and-gloom prediction, he said, that he had given me of reading large print on my first visit. It had been a fully realistic expectation based on my condition.) …
• The central vision’s been mostly saved so far, but it’s always possible for relapse, so must be extra vigilant with headaches and vision, my only indicators of the pressure without a spinal tap. …
• When we were scheduling my next appointment, one of the ladies at the front desk said I’m doing a lot better since my first visit there. She was there the first evening Mike brought me in after we left the hospital (I didn’t know that, but confirmed with Mike after we left today). … Most of the people who staff Dr. L’s office are very nice and caring. … There are truly some great people in this world whose paths I have been put in recently.

So, all this is good information, but scary, too. Really, I knew that I had to keep an eye on the headaches and vision forever, because either could change in an instant. And really, I know that everything in life is fragile and that certainty and safety are illusions, but they are coping mechanisms we have, telling ourselves that we are doing well, but when this stuff happens to you, it makes it harder to stop thinking about all the what-ifs. It makes all the possibilities more real and makes me want to hide under a rock. I’m scared again about having a baby. I mean, I don’t want to have a baby only to go blind and unable to take care of the baby. And I don’t want to have to take medicines that might harm the baby in utero. How selfish, if I were to take medicines to keep my headaches and pressure under control but then have a baby with birth defects or other problems that show up later in life that were caused because of my selfish desire to have a baby when I have such physical problems.

Why can’t we just adopt? What’s so wrong with having a “secondhand” kid, as Mike calls them? For that matter, why do I feel the need to have a child, whether it’s my own or someone else’s?

Gah! Always the questions, but so rarely any answers (at least that we want to hear).

***

I’m just having a rough day emotionally. It’s like every little thing is making me cry. And then that’s frustrating me, which makes me cry more. Never-ending, self-perpetuating cycle. It’s so stupid. And all kicked off by that stupid little reminder by the ophthalmologist that we have to keep a close watch on my vision and the headaches to head off further damage if the CSF pressure gets too high again. I knew that already, and I already watch constantly, but today, it just started the stream of worry, about what might happen if we get pregnant again (if I can even get my body to cooperate to even make that a remote possibility without immaculate conception), what might happen if we can never get pregnant, if my eyesight goes again, but for good, having all these bills again but without any kind of insurance, it goes on and on. And I can’t stop the crazy train. God, this is frustrating!

And amid all this are emails dealing with editing problems and phone calls to and from the pharmacy and the doctor and nurse. This is an emotionally vulnerable place I’m not used to sitting in for so long.

 

Thursday 3 December 2009

I spent nearly all day and evening yesterday after we got home from Dr. L’s office crying or on the verge of tears. I agonized over everything related to IIH and this eye issue. Even during date night, it happened. At least then, I could talk through my concerns with Mike and we had SOME conversation, though it was still about Mike wanting to have OUR kids and not adopting.

We went to bed, and then I couldn’t get my mind to slow down, despite how exhausted I was. I had done some research just before bed about IIH in general and about managing it in pregnancy. The two things that worried me most … were that of women who had IIH in pregnancy, 10% went blind and that one-third of patients who have the eye surgery I have and show benefit end up losing their vision (or at least some of it) within 10 months. That’s really not very long at all. … And, of course, the vision can go at any time, and I’ll have to be watched closely my entire life. But I dwelled on that.

I finally fell asleep praying for relief and comfort so that I could get some rest. All through the night, when my dreams would turn toward one of my doctors or IIH or my vision, I would turn them somewhere else. … This morning, the generalized anxiety woke me again—the one that started with my legs moving in bed and my stomach all tied up in knots and with a bit of a headache and shallow breathing. So much for a fresh new day. And I had thought that those fits of anxiety were caused by the pain medicines I had been on. But now I guess maybe they were normal. Or maybe they were related to the hormonal changes. … But my stomach is upset so I feel like I can’t eat or drink anything, I feel nauseated, my head hurts … and I see little spots of light every time my heart beats. And my heart is racing. Just like at bedtime last night. I can’t handle this. This isn’t like me at all, and I don’t know what to do. Even meditating wasn’t working last night very well…I just couldn’t keep my focus on the meditation. I’m terrified, of everything and nothing all at once.

***

Ended up feeling nauseated and vomiting (water and stomach acid only) a few times this morning. Had the shakes. Was afraid it was the same as before, when the headaches were causing the vomiting and such in the morning, along with the empty stomach. Mike thought it was just the anxiety. I was afraid it was the IIH. Finally, he [sat] with me in the hallway and comfort[ed] me, helping calm me and focus me and get me started on the day. My stomach was still unsettled and my headache still there, and my ear still plugged, but he assured me that he has a headache and a plugged ear as well, and it’s because he has congestion, just like me, so the odds of me having a headache that is triggering all of those things are pretty slim. [With] my nerves a little more calm, he helped me up and got me started taking my meds with some crackers.

He sat with me on the couch when I asked, acting as my security blanket because I need the comfort of his presence. I need certain human presence when I’m this upset, it turns out, and it made me remember always going to sit next to Dad, with my head in his lap, when I would get that nervous flutter in my stomach about a fear I thought was so silly or so terrible that I didn’t want to give voice to it. I’m so needy, and I wish I had half the patience for him when he needs me like this. Maybe this will teach me to be that way for him and others. …

Once the medicines were down with most of a 32-oz glass of water and a few saltines, and once my stomach seemed mostly settled, I [took] a shower. A few dark thoughts tried to intrude, but I pushed them away.

Then I called [my Medicaid managing group] about the eye surgery (optic nerve sheath fenestration is the proper term) to see if it was covered. … I learned that the fenestration is not a covered service by Pregnancy Medicaid … but that because the surgery center is a group that accepts Medicaid, they are not allowed to bill me for the service, even though it’s not covered, because I was covered by Medicaid at the time. … It’s up to the provider to find out ahead of time if the service is covered by my Medicaid, and if they don’t do that, they can’t ask me to pay for the uncovered portion. …

As long as I’m busy and focused on a task, I’m okay, but as soon as I stop for just a moment, my stomach gets all twisted up in knots and I get agitated. Or maybe I stay that way and I just notice it when I’m not busy. I don’t like it. It’s not at all like me. Grr. And knowing that I have to deal with this IIH for the rest of my life doesn’t help the anxiety at all.

I just want to be the old, normal me I used to be. But I don’t think I’ll ever be her again.

***

Am I crazy? Am I ever going to feel okay and normal again? Sometimes the sadness just overwhelms me, and I cry so hard, I feel my eyes are going to pop right out of their sockets. I feel like no one can help me and that I’m doomed to living a life of dependence, like I’m old before my time. And I feel like I’ve lost my way. Before, I had a bright future…I knew that my purpose in life was to help others. That was kind of vague, but I found a lot of little ways to do that. But now, I feel like I can’t really do much to help others, because I depend so much on others just to get me places. Of course, I can do most everything else myself…for now. But it’s thoughts of the future that are now disabling me. I’ve never been so terrified of the future. It’s like now, I don’t know how I can help others. On days like this, I wish I had [a disease that was more commonplace and better understood]. With IIH, it’s been so rare in the past that there’s not much known about how to manage it. It’s becoming more prevalent … but still…I’m on the frontier of a medical field, and it’s uncomfortable. Holy crap, is it uncomfortable!

Okay, now I’m thinking a little more clearly, anyway. … At least now I’m thinking instead of just shaking in fear like a [cornered] chihuahua. …

Mike’s fantastic and wonderful, but I feel so guilty about everything I make him do and listen to. I know he’s my spouse and all, but if I were him, I’d have lost patience long before now with me.

***

Enough moping. I’ve focused on work most of the day. I still feel very tired. I still see lights with the pulse of my eyes sometimes, but my eyes are very dry and tired. … I’ve been drinking water, I got very hungry … and was able to eat something. I’ve got a headache right now, but it’s mostly [related to my sinuses]. Still, when I stop working, I get the knots in my stomach, but they are milder, much milder than [this morning]. Sometimes my breathing is still affected, but it’s much easier to get myself to take deep, calming, more even breaths.

It’s possible that I’m experiencing some symptoms of the IIH. But I found a letter in a neurology journal mentioning how, particularly with neurological illnesses, anxiety can mimic the original disease, and the anxiety can strike suddenly and unexpectedly and cause the patient concern. So I went back to the list of symptoms of IIH with a more detached eye and saw that yes, I am experiencing that; no, I’m not experiencing that; I may be experiencing that; etc. And basically, treatment of IIH is to take care of the problematic symptoms, so, largely, the headache and the vision. Sometimes it resolves with weight loss. So I need to do what I’ve been trying to do, which is to get back into a normal daily schedule, with … exercise (4 to 5 times a week), work, recreation, and housework, like I was in before all this happened. That will keep my mind more occupied, get the exercise that will help with anxiety, hopefully help with the weight loss and the side effects of the medicines, etc. Then I’ll have a better place to judge from. Without constant doctor’s visits now … I can get back into a mostly regular schedule. …

So, still some anxiety in my world, but that’s mostly—probably—caused by the lack of rest. … [M]y anxiety is always worst at night and when I … haven’t had enough sleep. … [T]hat was something I noticed before all this IIH business. … [I]t’s just exacerbated by the anxiety that naturally follows illness. (And reading articles late at night when I was already so damn sleepy and anxious was stupid. I knew that, and yet I did it anyway.)

 

Saturday 5 December 2009

Not nearly so anxious today as yesterday and the day before … but the day started with some twisty-turnies in my stomach and some nausea this morning. … But my right eye seems to not be right today. … I couldn’t say why it’s not right, or even what’s wrong with it. … I’m a little extra paranoid because of the article I read the other night that said that you can’t tell just by visual acuity if the eyes are doing okay, so I’m very worried, and it seems to me like I’ve got a new hole in my field of vision on the right side, but maybe it’s just paranoia. But maybe it’s not. I’m terrified at not seeing the doctor for another 5 months.

And then this evening, I realized that I’ve been thinking this week a lot about that weekend in early October when Mom and Dad came to visit, after I had gotten migraine medicine from [my OB’s] nurse and my vision had just started to go. I keep thinking of the what-ifs. Of course it does no good. And even a neurologist or a neuro-ophthalmologist may not have caught it at that stage. But there would have been no real reason at that point to go to a neurologist. And I also realized tonight that until this week, I hadn’t really revisited those weeks of pain and terror that I went through while I was losing my vision and experiencing all this pain. I guess something this week just triggered a similar pain or something, but now, I finally went back to those days. In those days, I was in too much pain to worry about losing my vision and what might be happening long-term. All I could do was worry about the immediate pain and getting it to go away. There was so much pain that I just wanted to sleep to keep it away, so my eyes were closed as much as possible, and I kept the house as dark as possible. How could I have noticed my vision going in those conditions? But remembering it makes me terrified. Rather, I guess I’m reliving the terror. I guess underneath the pain was the terror, and I just didn’t recognize the terror because I was so overwhelmed in dealing with the pain.

I revisited some of those journal entries from just before I went to the hospital, and it hit me. I knew going back to those days to write the book would hurt, and I was right. It hurt now, too, and how. But it’s deep down, so deep that it’s sad and shaky, the injured infant inside of me rather than the wounded woman. But I’ve begun to face it.

I went back to those journal entries and found the places where I talked about making due with things, just wanting things to not be so dark as they were. And largely, I realize, that’s what I was doing. With things blurry, I was okay, because I got so much light back recently. But what really scared me in [reading] those [journal] articles was the thought of losing all of that light again, and having all those blind spots come back. That’s always been the scariest part for me—the darkness. Even in extreme bluriness, I can muddle along, but the darkness imposed on me was terrifying, because if it’s too dark, I can’t do anything I like doing, like reading or watching TV, cross-stitch … or even housework. But I found that place of calm then, and I think I lost it because things have been going so well. Or maybe I had never found the peace but hadn’t felt I really needed to because my vision has been returning so well. But I think the prayer I prayed last week for God to heal me because I’m broken has started to be answered. Of course, it’s healing in a different way than I was thinking of, but likely in the deeper way I need. Still, I wish the anxiety didn’t have to happen. It’s so very painful. And that sounded far less childish in my head. …

[I’m trying to look at changes in my vision in a positive light.] I prefer to look on the bright side, so to speak. I’ve had enough of the gloom-and-doom thoughts. I’m ready to be my old, cheery self with only occasional worries again.

 

Sunday 6 December 2009

I talked to Mom … today, in our usual Sunday chat. … Just before we were going to hang up, she stopped me and asked if I’ve talked with any of the doctors about the possibility of getting pregnant again. I explained that Dr. H had mentioned that the only real … risk would be to me but that I hadn’t really gone into much detail with any of the doctors because it’s not a real concern yet because…and then I stumbled for quite a while, trying to figure out how to tell her that I haven’t been able to make love to my husband since September. She apologized for making me upset [but] … how was she to know that I haven’t felt whole or normal or desire since all this happened? She’s still surprised when she hears that I’ve experienced anxiety or depression, saying it’s unlike me. Yes, it is, but it’s not like I’m recovering JUST from a miscarriage or JUST from loss of vision and a diagnosis of IIH…I’m recovering from all three piled right on top of each other in only a couple of months.

Still, admitting to my mother that I haven’t been able to be a wife to my husband in so long was very difficult. I still don’t know if I actually managed to say it or if she just figured it out. She’s the only one I’ve been able to “tell.”

 

Wednesday 9 December 2009

Last night, while going over some of my concerns (again) with Mike, I stopped and … thanked him once again for being wonderful and patient and kind and asked him how he’s dealing with all of this, and he said that he faced the worst that night he took me to [the hospital] when I was bleeding so badly. When I fainted, he was sure he had lost me. So for him, he’s already faced the worst.

That humbled me. And I haven’t really been upset with him at any point in all of this for not being more concerned for me, because I know he has no idea what I’m seeing (or not seeing, for that matter). But for him, the worst fear has passed. For me, it’s ongoing. But at least now I can understand why he’s so very calm when I’m so upset by things that are going on—he still has me, no matter how much pain I’m in, or how much that might threaten to impair me, as far as he’s concerned, at least, he still has me.

Sometimes I try to look at it that way, like well, at least I’m still alive. But I wasn’t really afraid for my life at those points. I’ve even, in the past few weeks, caught myself thinking, Well, at least when I die, I won’t have to deal with worrying about this anymore. I won’t have to worry about being blind. That almost freaks me out more than anything else, because never in my life have I thought myself better off dead. I’m a fighter. I’m not someone who holds back from acting in life because I’m afraid of the consequences. I might try to make wiser decisions, more well-informed decisions, but I usually don’t let it hold me back from experiencing things I want to experience. But here I am, thinking about not wanting to even try to get pregnant because I don’t want to run the risk of going blind…. So right now, I’m caught in the middle of indecision, praying that God helps me lose weight quickly … and that he will turn Mike’s heart toward adoption if it is impossible for me to have a child without harming my vision. I want to be a mother badly, but not at the risk of going blind. I’m still doing research, of course, and need to have more conversations with the doctors, but I was already running out of time. [Being older than] 35 bumps a woman into high-risk status for pregnancy. My weight already sort of put me there, although it was possible to not be in high-risk. But now with IIH, I’m definitely high-risk. … [W]ith IIH and with the vision issues I’ve already had, I’m very scared. Some women with IIH never have vision problems, and some go blind. …

I long for a child. But even more, I long for my vision to be restored. But I have to move on with my life. I can’t heal if I’m stuck waiting for the past to happen again. But I’m stuck in the molasses of pain, of sadness, of FEAR, of winter, of being a shut-in. If it weren’t for my Misha, I would be a shut-in. If anything happens to him, I will be a shut-in. I am dependent on others for transportation, for help shopping, for any kind of detailed housework. I may not even be able to mow in the spring and summer, which means poor Mike will have to do even more. I still try to hold out hope that my vision will keep improving, but it is difficult when winter sets in and it is so dark and I am stuck in this dark house and the lights, even when all on, are strange and hard on my eyes. If my eyes continue to improve, it is so slowly that I don’t notice as much. It is the most difficult part now, the waiting, the observing, the having faith. I continue to pray [over and over]—for comfort, for healing, for restoration, for comfort, for healing, for restoration, for comfort, for healing, for restoration. And all the while, I shed tears and ask the Lord to please, please, please, help me. And then I find some Catholic prayers and throw some of them in for good measure when I really need extra comfort.

Angel of God,
my guardian dear,
To whom God’s love
commits me here,
Ever this day,
be at my side,
To light and guard,
Rule and guide.

Amen.

 

Lord help me
to remember
that nothing
is going to happen
to me today
that You and I
together can’t handle.

Amen.

 

Friday 11 December 2009

My Misha is so stressed, so angry, so upset with the world. And I don’t know what to do to help him. Or even if I can do anything to help him. He mentions some things regarding my spending and how he has stopped saying no because he hasn’t had the strength in the past month, but I don’t know what spending he’s talking about. … When I ask like what, … he can’t remember … because he buried the anger. I don’t know how to help him with those things, and I can’t address things I don’t remember, I told him, so he needs to not bury them and instead bring them to my attention when he is worried about them. …

I think he’s worried about everything and nothing at all, if that makes any sense. I’m not sure it does. But I think he buries all his feelings and doesn’t give voice to them, so they just swell and swell and feed off each other until there’s a giant hole of fear about anything and everything in his stomach. My poor Misha. …[He] seems like a powder keg, a poor, powerless, wet powder keg. I wish I could help him see the beauty in life, in people, the joy in the world. I pray that he can find purpose and joy and love in the world again.

He says he feels cheated by the world. And he doesn’t seem to hear me (though I’ll keep trying to say it in several different ways) when I say that sometimes you have to look at being cheated out of something as having a new opportunity offered to you. He’s falling into a blame and victim mentality, and that worries me, because it’s not healthy.

 

Saturday 12 December 2009

I’ve been wondering over the past couple of days, as I’ve observed my right eye, if it’s not that my right eye is getting “dimmer”—that is, that the obscurations are growing—but that my left eye is getting “brighter”—the obscurations growing smaller. … But I’m not worried. I’ve prayed and prayed and prayed and still pray every day that God will make sure I go to the doctor if I need to. It’s not that I’m going to assume that everything is okay unless I receive some heavenly sign, but when I was bleeding after the miscarriage, I had the feeling that told me I needed to go. Nothing had changed after more than an hour, and nothing happened differently for about an hour after that, but the feeling told me I had to go. That’s what I’m hoping for if necessary—that feeling that tells me I need to go, I need to call. …

 

Monday 14 December 2009

[E-mail to the dietitian I had been seeing prior to getting pregnant]

Hi, Ty! It’s wonderful to hear from you! …

I’m trying to be my usual happy, resilient self. … Basically, though, I nearly always have a very low-level headache, though I can’t tell if that’s because of the IIH or the strain on my eyes or because I always feel dehydrated because of the powerful diuretic they have me on to help keep my spinal fluid production kind of low (we hope).

So, sorry I’ve been a little down here 🙁 You apparently caught me in a down moment. I’m a little down sometimes, which seems natural, given what I’ve been through the past few months, but one of my medicines also can aggravate both depression and anxiety, so if I start feeling a little anxious, the medicine just amps it up a bit more. …

And now, one of the medicines I’m on also affects my appetite, but not consistently, so some days, I have almost no appetite, and other days, I have a normal appetite. It makes it difficult to keep my strength and energy (and emotions, for that matter) at consistent levels.

Thank you for thinking of me, and if it’s not too much to ask, I’d like to ask you to pray for me, especially for the restoration of my vision and the resolution of the IIH. I have no doubt that the incredible improvement in my vision was because of all the people I had praying for me before I went in for the surgery and just after the surgery.

Stephanie

 

Saturday 19 December 2009

[T]oday when I prayed, I didn’t ask for my vision to be restored. I expressed to God my regret that we had lost our baby and that this happened as a result of it, but then I didn’t ask for my vision to be restored. It’s not that I don’t want it restored, of course, just that I know it will be. (And then there’s the nagging quiet voice in my head that says I can’t know that for sure, and so I say, “Okay, fine,” to it and then say, and even if my vision isn’t restored, that’s okay, I can deal. Somehow, I will deal.) …

[A neighbor] called yesterday morning just to chat and check in with us because it’s been so long since we’ve seen each other and chatted, so I brought her up to speed on everything. The last they knew, we had lost the baby, but that was it. So I told her about everything, and she was really supportive and told me to be sure to let her know if I needed anything, and that when Mike gets a job, if I need a ride anywhere, she’d be glad to drive me. … So it further reinforced my feeling that we’d be okay, that although we don’t have a big support network up here, we have one very important set of contacts. … Such a relief. And that is how I know we’ll be okay.

One last, somewhat random thought—death really doesn’t hold the panic for me that it once did. Almost makes me wonder if I really did die or have a near-death experience that night in the hospital when I passed out. Or during one of the operations while I was under anesthesia, even just for a second or two. As I was falling asleep last night, I had one of the thoughts of no longer being “here,” one of the thoughts that used to make me have to get up, walk around, do something physical, in the fight-or-flight response, and it just didn’t happen. Or maybe I’ve suffered enough (so little, really) that I know death isn’t an enemy. Not that I wouldn’t fight to stay alive if it came down to it, though. Or maybe my faith is now strong enough that it isn’t overpowered by such fears any longer, though I still don’t have the “traditional” belief of an afterlife. Just interesting things I note…internal changes that I’m not sure even register externally. Of course, I still have my fears…they usually revolve around living with impairments and the possibility of worsening my current impairment. But that fear of living I was experiencing for a while? That one’s gone finally, I think. And about time, because it was making me crazy.

Now I just have to make sure I don’t fear worsening vision so much that it keeps me from living the way I should or the way I want to. After all, as Helen Keller said, “Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure.” And she should know. I mean, really, I had this quote as an email signature from a blind and deaf woman before all of this happened to me. And the funniness of it didn’t hit me until a couple of weeks ago—one of my greatest fears is being blind, and I had a quote from a blind woman there. … Now, put in a new light, it brings me a new calm, a new…well, not a new purpose, but a little less fear about getting pregnant. I just need to be a little better informed, and then I think I’d like to try to get pregnant again. But I need to make a few steps first…weight loss, reading a few more journal articles, talking with my OB, talking with the neurologist, talking to the ophthalmologist, maybe even talking to a neuro-ophthalmologist. Taking control of my life again…well, as much control as it is possible to have over one’s life…

 

Monday 21 December 2009

[E-mail from former dietitian]

Hi my dear Stephanie,

I am so sorry to hear that you are going through difficult times. Wow- a few times decided to write to you but I could not finish my e-mail- No words to explain.

But as you said you are a very strong and spiritual woman and hopefully be able to handle whatever comes on your way. Sure you and your husband are on my prayers. Thank you for sharing your situation with me. Hope by now your vision is completely back. This is my favorite prayer that I would like to share with you

“O GOD Refresh and gladden my spirit, purify my heart, illumine my powers. I lay all my affairs in Thy hand. Thou are my Guide and my refuge. I will no longer be sorrowful and grieved; I will be a happy and joyful being.

O God; I will no longer be full of anxiety, nor will I let trouble harass me. I will not dwell on the unpleasant things of life.

O God Thou art more friend to me than I am to myself. I dedicate myself to Thee, O Lord.”

This prayer has helped me a lot during my difficult times of been refugee and traveling with such difficulties in many countries.

Please take care of yourself and let me know if anything I can do.

 

[Response to her]

Thank you so much for the beautiful prayer. …

Today is a mixed bag of emotions. …

Right now, I’m just hoping to get through [the rest of] 2009 as quickly, quietly, and uneventfully as possible, trying to “sneak through under the radar,” as it were.

May God’s glory bless you, may His love surround you, and may His grace bring you peace and happiness.

Stephanie

 

Friday 25 December 2009

Last Thursday, I finally was “in the mood.” I made that clear to Mike, and we made our way to it. … I was incredibly emotional. I started crying. … I know some of it was relief that I was finally able to be intimate with my husband again and happiness at bonding with him in this way again.

I just wish I hadn’t cried.

 

Sunday 27 December 2009

Went … today to visit (Great) Aunt A. She is sweet, but she has definitely gone downhill. She’s 98 or 99 and in a wheelchair and can’t see very well. Apparently can’t hear very well, either. Sweet, but still with the Seifert spunk. … Sweet all the way through the visit, a little nosy, a lot confused, and just a tinge of sass.

At one point, we were taking pictures, and she asked if she’d get to see the pictures while she was still living. Then I heard her turn to Dad and tell him that she prays to God sometimes … that if he wasn’t going to take her soon, He should send her somewhere she can do some good. … [B]ut then she said, “But I’m still here, so I guess there’s still work to be done.” …

Then as we were leaving, she was telling Mom and Dad and the others to visit again and told me and Mike to visit soon, too, but then she said … she might be dead before that happened again. … I think [she] is ready to go. I think she’s at peace with it. She doesn’t say it like she’s trying to get attention, or even like she’s looking forward to it. It seemed to me almost like she’s just looking at it and kind of looks at each day like, “Huh, I’m still here, go figure….”

Not long after we got there, Mike was uncomfortable, so I knelt in front of him for a while and talked to him a bit. He said he always gets depressed a bit by this sort of thing, especially, I guess, by the “old folks’ home.” … But this didn’t seem that sad to me. Aunt A. didn’t have dead eyes like she had given up. She was happy we were there. I tried to help him focus on that, but I think without having seen the worse, Mike didn’t really have something to judge against. And I guess I’d rather leave him thinking this setting was sad (though it was a good visit) than describe in detail the other things I’ve seen that I thought were more depressing. …

 

Wednesday 30 December 2009

I’ve noticed over the past several days (maybe even weeks) that in my dreams, more and more, my vision is clouded like it is in real life. At first, it happened only a little, and I thought it was just a way for my brain to cope with the issues. … But now it seems to happen fairly often, if not all the time. It makes me sad, in a way, because I didn’t want my dreams to be touched by this. I wanted my dreams and memories to be left untouched, so I could still see some things clearly, if only the past or imaginings. …

True, early on, I had been a bit sad a few times to wake up from a dream in which everything was crystal clear to find that things were still cloudy here in the real world, but I moved past that. …

The one thing I do know is that sometimes, just to feel like nothing at all has happened and my vision is still good, I squint my eyes so it’s like I’m looking through my eyelashes. When I do that, it’s a reference point that’s the same, with my “cloudy” vision [like the] perfectly good vision before. Then, for just a little while, I can feel normal again, like nothing’s wrong, like I don’t have to depend on others for travel or for help in the dark or in very dim light, like I don’t have to move my eyes four or five times as much as everyone else to see stuff around me, like I don’t have to be scared of blindsiding someone in a crowded room or standing in someone’s way and never, ever knowing.

 

***

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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