Joy seemed to come and go, dancing and flirting with me in April. I sometimes bounced between sorrow and joy. Despite the seeming uncertainty of these emotions, however, hope grew steadily throughout the month—especially about my ability to cope with the new hand that life had dealt me.

Watch my YouTube video using the following link below, or read chapter 17 below.

 

17. April 2010

 

Sunday 4 April 2010

Mom and I took turns hoeing and breaking up clumps [of soil in the garden]. I feared I might get a headache afterward from the “exercise” because that was the heaviest physical labor I’ve done since last fall . . . but so far, not so much as a little twinge of head pain. . . . . So either I didn’t work as hard as I thought . . . or . . . I’m getting better and don’t have to fear physical exertion now. Either way, praise be to God! I figured even if I was in pain afterward, I had to at least try…I can’t know my limits really without testing them, and it’s just not practical to always sit around and never try to do any physical labor…it’s just not who I am. . . .

Beautiful day today. Fabulously beautiful day. . . . Springtime. I get to start mowing . . . again! If I can’t drive a car, at least I can mow. . . .

I’m forcing my eyes (my brain?) to keep working when I have a hard time seeing things, like outside, when I can’t pick out one of our little trees from among the grass—which was always challenging, anyway. . . . I force myself to focus on finding and seeing them. And if I start to want to panic, or whimper inside that this is something I simply can’t do, I force myself to calm down and remind myself that this is our land, and our ground, and I know where things are planted so all I have to do is find one thing I CAN see and then find the others in relation to the things I can see. Then the panic ebbs away and I can better see what I’m looking for. And then I can see the details a little better. I don’t catch them quite as easily as I did before . . . but that may come in time. That I can see the contrast now is a step in the right direction. I continue to heal, as I have been promised. I’m reminded of one of the little songs we used to sing in church every Sunday… “Praise God, from whom all blessings flow. Praise Him, all creatures here below! Praise Him above, ye heavenly host! Praise Father, Son, and Holy Ghost.”[1] Although I don’t really see a tripartite all-male god as ruler of the universe, it’s a fabulous uplifting song that fills my heart with joy and reminds me of so many things all at once and that I have been inspired to sing over and over again these past few months, along with a little snippet of a pop song that I think came out in the late ’90s: “Goddamn right, it’s a beautiful day!”[2] Yeah, I love the irony of my brain, juxtaposing the sacred and the profane. But such is life . . . how would we truly value the one without the other? They require each other to thrive, really. Such is life. It is what it is.

I am filled with joy. I am a joyous being at this moment. I feel joy so much more often now than I did before our baby was taken from us and before my vision was damaged. So much sadness, but so much joy I’ve somehow managed to find. Before, I was happy, but now I am joyous.

 

Tuesday 6 April 2010

Mostly happy today, but a lurking sadness in the past half hour or so. Editing a book with a small chapter discussing the purpose of dreams, the idea that dreams [the ones we have while sleeping] are nothing more than a way to achieve fulfillment of our deepest desires that we know we cannot have in real life. And so I thought of the dreams I have in which my vision has returned. And that made me melancholy, and that led me to a memory of earlier today, when we were standing at the sink and Mike tried to point out some birds flying by but I didn’t see them. I was looking at something in the sink and the birds were flying quickly, so it wasn’t because of my vision that I missed them, but it’s the idea of the thing. Maybe before, I would have caught a glimpse of a flutter in some periphery. But Mike is often pointing things out that are moving quickly by, as he used to do, and I am forever missing them, not because I am not paying attention, but because I can’t look and focus fast enough. I want to cry for the sadness he expresses at those times. It’s hard enough for me to deal with such limitations, but I am constantly testing my limitations, and I have dealt with them 24-7 for, God!, nearly 6 months now. He has not had the same experience of them, so sometimes he can forget, and in some cases, he has never really internalized just what I can and cannot see. He’ll point at something and tell me to look, but he’ll point while he’s next to me, so I have to look at his hand to see where he’s pointing and then look off to whatever he’s pointing at. But the problem is, by the time I look back at his hand, he’s put it down, and the thing he was pointing at has moved. He gets so frustrated—whether with me or the situation, I can’t always tell—[because] I don’t respond like I used to, that we can’t share the private joke of whatever he’s pointing out like . . . we used to do. And sometimes I sense the sadness in him, the sadness when he realizes all over again . . . that I can’t see like I used to. . . .

I do still hold the belief, the faith, that my visual field will return, at least mostly . . . but it is so disheartening to wait, and to know that it could all go again at any minute. And worst of all is knowing that my poor husband has to be constantly reminded that the woman he loves is not nearly as strong or as capable as she once was, and knowing the ways that impacts his life, makes his life so much harder and more challenging, hurts me deeply.

 

Friday 9 April 2010

I posted yesterday’s journal entry [about dealing with a collections agency, Medicaid, and a doctor’s office about a large bill] on my blog (and thus on Facebook) and got this post from [a friend]:

Steph, I have to say, you are handling this marvelously and with so much more grace and responsibility [than] *most* people would. I’m a little shocked that you aren’t totally insane dealing with all of this – I know I would be! I’ve always admired that about you – you are SO patient and wonderful in general! Just want you to know I genuinely feel for you, but I am also so proud of how you are handling this!

So I felt it important to reply. and, of course, the quick reply I was going to give turned into something much deeper, something I want to record for posterity’s sake for my family, friends, and future children:

[T]hank you very much for your praise. I’m humbled. I have to say, though, to be fair, that my posts are a bit self-selective. I don’t go on much about the days where I hang up the phone and start bawling because I feel so powerless and stupid and useless from all this.

But yesterday, with the strength and power of the Divine, I was able to get through it, and even resemble a little the cognitive powers I used to have before all this stuff happened. …

Really, though, my husband and wonderful friends and family … are what really matter, and I know that this debt collection stuff is a ridiculously painful process and it’s serious business for what it can do to our credit and our life, but in the grand scheme of things, I have to keep reminding myself, it’s just not THAT important. It’s a challenge to be faced, dealt with, learned from, and moved on from in whatever ways possible to help make me a better person, better able to help and love the people in my life, and hopefully even all the people I encounter.

Monday 12 April 2010

Mike’s been giving me lots of hugs since last night, when I had another mini-meltdown. Too much to worry about, too much going on, headaches. …

[After researching our rights regarding bill collections and some “dirty” bill-collection practices], Mike talked with [the collections agency] today. . . . [They’re] still adamant that we need to pay . . . [and the representative] got really flustered when Mike explained that we are seeking legal advice. But he did at least find out that [the collection agency] doesn’t own the debt, so we can actually request that they not contact us any longer … and that we communicate only with [the owner of the debt]. That may or may not work to our advantage in all this mess, who knows. At least it will remove one more cook from the kitchen and one more level of confusion from this mess. This really is crazy.

My life has become a comedy of errors. I never was much a fan of them. Now I’m even less a fan, living in one.

But it’s beautiful here [today]. I’m going to go work on the porch.

 

Wednesday 14 April 2010

Half my “year of shadow and light” has passed. And I’m terrified. I’ve forgotten what it is to see normally, without obscurations, without having to slide my eyes to the left or right to get a “good” look at something, to have peripheral vision. The mowing over the weekend, rather than making me feel happy to be driving again, made me sad, because I felt that it reinforced in me the fact that I should not be driving. I couldn’t see things out of my periphery. If Mike had walked up on me, I wouldn’t have been able to see him. If we have children and they walk up while I’m mowing, I won’t be able to see them. How will I be able to properly watch kids without being able to see them?

I’ve just spent a half hour crying and praying aloud to God, pleading, crying out my fear, my sorrow, my desire to be in love with life again . . . to want to have a baby again, to feel good again. I had a taste of it a few weeks ago, but it slipped away. This is such an awful disease, and it hurts people so deeply, scars them so much. I want to stop being like this. I want to be like I was before. I want to be “normal” again. I want to see. I want to be self-sufficient so I can better be a spouse to Mike, so I don’t have to have him and other people drive me everywhere when I need to go to the doctor, to the grocery store. I want, I want, I want. I want to not be ill anymore. I want to be normal.

Yesterday, when I needed comfort, I opened the Qur’an and read a passage that I’ve heard in many forms all my life: the Lord does not give us more than we can handle. I’m humbled that the Lord believes I can handle so much. Only through the strength provided me through the Divine could I possibly make it through all this, but I don’t want to do it anymore. I don’t want to do this anymore, this being sick. Only six months in, and I’ve forgotten what it’s like to see normally. Not a day goes by that I don’t wonder if this or that twinge or pain or flash of light isn’t caused by my illness. I fear deeply for my vision, for my life, for my health. This is such a nasty disease in the effects it can wreak on people. So truly nasty. And so little we can really do to control it. Even if we think we have it under control, it works on us and harms us. Maybe we don’t experience headaches or vision changes, but the pressure hurts our bodies in other ways, without us knowing, because the headaches and vision changes, and maybe some other telltale sign are the only things we have to tell us that something is wrong, the pressures are high. And by then, it may be too late, the damage may have been irreparable. How insidious.

I used to wonder how I could be so lucky, to be so blessed in my life without having suffered any hardship. Now it feels like a joke. I still have the truly important things, but, oh, to have my health with them!

I pray, and I have no doubt that the Lord is out there, listening to me, hearing me. I cry out loud to God for help, for strength, for succor. I pray without words, before I can find the words, simply crying, “Oh God, oh, God, help me, please!” And then I beg and plead and cry and tell God everything I want, everything I wish, everything I dream. I reminded the Divine over and over and over again that I don’t want to go through this anymore, that I want it to be over, this pain, this fear, this inability to see normally, to behave like me (this person surely is not me, not the me I grew to know over 29 years). I don’t want to keep waking up every morning to the letdown that comes just before I open my eyes, when I realize that I’ve awakened and that when I open my eyes, nothing is going to look the way it should. Nothing is going to be sharp and clear. Nothing is going to NOT be distorted. The beginning of every day is a disappointment. I want nothing more than the Lord to take this affliction from me.

And yet it persists. And though I know God has promised me that I will be healed and that my vision will be restored, I also know that God works in God’s time, not in ours. And so when I was done praying tonight, I asked the Lord to make sure that some good comes out of this for someone else. If I must suffer, if I must endure this, then someone else must surely benefit, please. This I prayed with my whole heart, my whole being, as much as I pray for my vision to be restored and this affliction to leave me.

This is my halfway point of my “year of shadow and light,” the year that I used to envision as ending with the total restoration of my vision. I pray that such is the case, but I remember that God works in God’s time. In the meantime, I seek care when I can afford it, pray for strength and healing every day, and try to remind myself that my husband is beside me even when I can’t see him, and that out of sight should never mean out of mind.

I miss the joy that used to light up in me at the sight of certain things: my husband’s smile, my husband’s eyes, the full moon on a clear night, the first buds on the trees in the spring, a butterfly or hummingbird flitting just at the corner of my eye. Now I have to work so hard to see these things, and I realize it was the tiny little details that made them really come alive and made them better from memory, and it’s those details that I can’t see now and that I can’t remember visually—the tiniest creases and wrinkles in my husband’s cheeks and around his eyes, the subtle color flecks in his eyes that made them look like sunflowers against the bluest sky or the greenest grass, the way almost-invisible wisps of clouds played across the face of the moon, the way the moisture beaded on the tips of the tree buds and caused the light to bend and cast the slightest shadow across the green, the iridescent blue-green of the hummingbird catching the sunlight so I could glimpse it from my periphery. All escape me now. I tried to watch a spider hanging from a superfine web yesterday and blowing in the breeze. But every so often, the spider would disappear . . . because it would enter a blindspot . . . and then maybe if I was lucky, it would reappear, almost as if it had moved three inches to the left. . . . [B]eauteous things in the world . . . now close their doors to me as soon as they catch me looking, as if to remind me that I am no longer allowed the privilege of their company.

I continue to hope and pray that the Divine will fulfill the promise to me sooner rather than later, but each day, a little more despair wells up inside me that perhaps I’m not deserving of such a gift and will not receive it in this lifetime.

But then again, perhaps that’s the Topomax talking…

 

Friday 16 April 2010

I keep reading all sorts of information that says retinal damage can’t be repaired (not yet, anyway…they’re doing stem cell research right now), so it’s permanent. That’s disheartening, but I know I’ve been promised by the Divine that my vision will be restored. Of course, then the question is, Is that my time or God’s time… If I could regain enough vision to drive again, and to feel confident about driving again, I wouldn’t be quite so upset and scared, except about losing that vision again. But for now, all I can do is hope and pray and remember that I’ve been given a great promise (and know that some people are going to think I’m crazy if I tell them that the voice of God has promised me restoration of my health, restoration of my vision, and a child with no further physical damage to me).

All I can do, I suppose, is keep my faith, which is hard, in a way, because I’ve always been spiritual and found my path to God through reason, knowing that miracles happened, but never “blindly” holding on to a belief, to a promise. But sometimes now, it’s the only thing that gets me through.

***

Had a long chat w/God, smoked tobacco.[3] As soon as finished, [was] told to read the cards [because] a message was had for me. . . .

[The interpretation:]

I am being offered gifts but ignoring them and the ones I have at my disposal. I’m focusing—at the expense of current happiness—on an idealized concept that does not exist. But also [be sure to] not let go of healthy ideals that guide & shape my life [to accept] shabby substitutions. . . .

Know when & what to sacrifice. Be clear abt who I am & let my actions be based on that. Be true to myself even if it feels clumsy or out of sync with others. Do what I believe is right, not just what others think is best or “not foolish.”

This is an opportunity to help myself and others reach for their best and add to the collective good. An opportunity to grow and help others grow. (Keep praying & striving to do God’s will.) Do not seek an unfair advantage by cheating. (Is praying for vision restoration cheating? Yes? [It’s asking for cheating.])

Do not give up the fight out of fear. Use challenges to better define & explore my beliefs. . . .

Keep watch for obsessions in my life (w/ my vision returning—obsession will lead to pain, to excluding other aspects of my life, including helping others) . . .

Take time to reflect, to learn from the situation and resume the battle. Beware despair. Don’t give up. Withdraw not to escape life but to heal & learn.

Everyone sees the domestic bliss, the happy home life full of satisfying activities & comforts. Don’t neglect the family. Everything is fine because of the way we’ve treated each other—[Mike and I] can’t stop those behaviors.

What I most fear—[the woman in the card is] blind & in the dark. What I most hope? At peace, despite the conflict between intellect & intuition. I’m faced with a decision & am not sure what to do. I must decide—must remove the blindfold and look squarely at the situation. Cannot do nothing. Most likely, I know what to do but am afraid. . . .

Have everything monetary, but left all alone. Have forgotten what my gifts are for. [I] face a lonely, unfulfilled future unless [I] face [using my] resources wisely.

Seeking further clarification, I drew cards singly until “satisfied.”

Message I seemed to get was “Everything is as it should be, you are where you belong. Take comfort in it, and know you are stronger than you think. Part of your strength is your intuition. Trust it. Do not be afraid of it. Things will happen as they are supposed to happen.”

 

Friday 23 April 2010

[Blog post:]

“We are—all of us—blind beggars, with genuine hurts and handicaps”[4]

* Stringham high: Rain!

* Stringham low: Still no driving.

* Stringham super-high: Hope

Well, today’s post is a bit of an updater. We think we have resolved the debt-collection issue through a couple of fronts. The lovely Ms. L at my doctor’s office (and the doctor) and Ms. C at my Medicaid company did their work, and they pulled through on the same day. We should hear no more about that big surgery debt…at least unless the surgery center wants to be reported to the state.

I went earlier this week to [a different doctor, for a special] test on my eyes. . . . I had also wanted to be given the test that determines if your overall periphery is large enough for driving in Indiana. The doctor there didn’t do any . . . tests [other than the 30-2]; he just walked up to me after [that] test and, not really looking at me, said I wouldn’t be able to get a driver’s license anyway so there was no point in doing the test. He said something about me hitting a kid before I’d even realize the kid was there, and then he walked off. I was disappointed, and a little peeved. And I’ve been more peeved since then, realizing he didn’t even give me a chance to ask questions, he didn’t give me the courtesy of speaking to me in an exam room (he stood in the hall to tell me this), and he assumed that … I would be … irresponsible. … But that’s enough of that. . . . Although I hoped to be able to drive . . . I really wanted the test this time for a baseline measure of my overall periphery. . . .

Yesterday, the best news of all thus far showed up to cheer me along. …

In one of my support groups for IIH (PTC), I saw a message from a woman who said she was completely blind for an entire month in the summer of 2005 before she was diagnosed, and now she has 90% of her vision in one eye and 50% in the other. It has come back very slowly, but it has come back.

Let’s stop and really think about this. She was completely blind for a month; I was mostly blind for two to three weeks. It has taken four and a half years, but a great portion of her vision has come back. I know to those of you who think about these numbers, 90% and 50% still seem very low, but for someone like me who currently has partial vision in about 38% of her good eye, 90% and 50% are tremendous numbers. So, how does this give me hope, and what does it have to do with that promise of restored vision?

In every way, and everything. It gives me hope because it lets me know that there IS a precedent out there, even though the literature may not mention it, even though it may be an outlier. It reminds me that although we like to envision miracles as happening suddenly, miracles are everywhere. We like to overuse the phrase sometimes, and often we use it so much that we don’t realize how much it really means—like the miracle of pregnancy and the miracle of birth. They are tremendous miracles—just ask anyone who works in reproductive health. It’s a miracle that the human race is able to propagate, honestly. And the promise I have been made is reinforced—my faith in it is reinforced again—as I am reminded that although I was made a promise, that promise is on God’s time, not my time. And because this promise is confirmed, I know that the other promises that have been made will also be kept—yes, they will require effort on my part, but what better way to truly appreciate a gift than to work toward it and on it and know how hard it is to attain on your own? Whether the miracles are for ourselves or others, shouldn’t we all be instruments in the miracles that are worked in the world?

 

Wednesday 28 April 2010

I don’t want to face the challenges of having IIH and pregnancy together, but it seems inevitable if I ever want to have a child. No matter what happens, I’m . . . ready to face it.

 

 

Notes

[1] “Doxology,” by Thomas Ken, published 1709.

[2] “Goddamn Right (it’s a beautiful day),” the Eels, 2000.

[3] At the time, this was one of the ways I “communed” with God, and calmed and centered myself.

[4] Quote from http://www.religion-online.org/showarticle.asp?title=993

 

***

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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