The next few days were like a nightmare, full of pain, anxiety, fear,confusion. I barely remember them, having to rely on my journal entries to makes ense of them. One of the few things I was able to do was type (even when I couldn’t see), so I kept a running commentary on what was going on, mostly to distract myself, I think. Only a few things stay prominently in my mind without the journal entries’ reminder. One was that Mike tried everything he could tocomfort me, but eventually, just before I saw a neurologist, things were so bad that I was unable to fall asleep, even to lie down, because of the intense pain in my head and neck if I tried. Second was how my prayers, which had becomemore frequent while I was pregnant, metamorphosized into pleading, begging selfishly for my own care as my sight went dark.

You can watch my YouTube video (link below) or read chapter 9 below.

 

10. Darkness

It is better to light one small candle than to curse the darkness. —Confucius

Diseases can be our spiritual flat tires—disruptions in our lives that seem to be disastrous at the time but end by redirecting our lives in a meaningful way. —Bernie Siegel

Everything is a miracle. We just have to recognize it. —Federico Fellini

 

Again in this chapter, I present the journal entries with all the typos, mistakes, and winding thoughts, though I’ve trimmed them down a bit when they wandered too far afield.

Saturday seventeent october two thousand nine

Dr. a’s office tried to get us an appt with a neurologist but couldn’t make one directly for us becasuase we were cash patients so we had to call and make an apointment. Wednesday morning rigth after eight o’clock, I got a call from the neurology group explaining that I yhad to pay ahead. … I paid immediately and then asked for an appointment immediately. They couldn’t get me an appointment in [our town] on that day, but they could get me one fro [for] eleven thirty that morning in castleton. I told them I’d take it then woke mike up and took a shower and got dressed.

So off we rushed after Mike showered without breakfast. We got there just in time. The neurologist looked at my eyes and immediately said that we had to leave immediately for the hospital. … We were fresaked out . She simply said we had to go to save my vision. She didn’t even say why or what was wrong. After a few minutes, she came back in the room with the orders, and I asked her to stop [slow] down and talk to us, and she said she wasn’t trying to write us off but that this was important to sae [save] my vision. I asked why we were going to gthe hospital, and she said because we had to do tests to find out what was wrong with my vision. That, I said, was all I needed to know.

So we rushed to the hospital as quickly as we could, given that it was eighty-sixth/eighty-second street in indianapolis in the middle of the day. We took quite a while to get checked in, put into a room, etc. We got put into a room finally around two o’clcok in the afternoon.

Finally, around eight or nine o

‘clock we met with another neorologist who checked me out and said I was going to have an MRI that night and a spinal tap the next morning to find out what was wrong. He explained a whole host of things that could be wrong and what was likely wrong and we immediately felt not so bad and not so afraid that this was an immediately threatening situation. The doc was very knowledgeable. …

Mike stayed with me until about 10 or eleveen, after the MRI was done, [and] then he went home to take care of the cats—we had been gone all day without expecting to be more than an hour or two. The next morning, they woke me up around seven to take me down for the spinal tap. I had spent a miserable night in the room. The ward had been busy, and one or two patients in particular had been very noisy and problematic and had been making noise and causing problems all night, so along with my still-uncontrolled pain, it had been a rought [rough] night. The nurse that night, though, Pam [yes, another one], had been very sweet—a middle=-aged cut=up who seemed to be on my wavelength a lot, though a little quieter, and she was very seet [sweet] and attentive. She had done everything she could to try to make me comfortable in that haze of discomfort. …

Anywaym, the spinal tap was done to withdraw some fluid to be dteested and to draw off any excess fluids that might bec causing excess pressure that would cause the pain in my head. Turns out normal fluid pressure is about fifteen to twenty—when they went to measure mine, it spiked up at fifty-seven. They drained it down to eight. Wow. Anyway, my vision cleared up a little bit afterward, btu not much. My headache also got a little better. What really felt better, though, was my neck and back. Incidentaly, that night, we were able to keep my headaches and pain under control with just Excedrin Miraine, and I was ble to sleep through the night with well controlled pain and without the feeling of getting beat down by the world and run over with a steam roller like the darvacet had made me feel the night before.  Hours later, we still hadn’t heard anything about the tests, and I had had a bitch of a headache, which apparently often hits after a tap—we had had to hit it with a darvocet and a codeine and somethine else, I’m wanting to think. LL I KNOW IS THAT WITHIN ONE HOUR, I HAD TO TAKE THREE MAJOR PAIN RELIEVERS BECAUSE I WAS IN SO MUCH PAIN. FbUT Mike showed up around three or four that afternoon with my pajamas, so I was able to wear “normal” clothes and sit in a CHAIR, so I sat and was able to talk to him and sit up and not in a BED for hours and hours, and it was wonderful.

Still, we were anxious to learn what had been found, but no sign of Dr. H [the neurologist] yet. He showed up around seven pm, I think, and we had a nice chat with him. He said that the MRI had revealed nothing wrong and that the spinal tap ahad also revelaedd nothing wrong other than the pressure. The problem was that the vision hadn’t been better improved by the tap relief of the pressure, however. So…We knew at least that the headache pain was caused by the spinal pressure, and we were going to treat that by giving me a medicine to help reduce the creation of CSF and another –Topomax==to help treat migraines and seizures which also sometimes helps trweight loss.  This condition sometimes takes weeks, even months and even longer sometimes, to treat but does get better once the hormones equal out and often when weight loss has occurred, as it occurs fmost frequently (Iif I remember correctly) in women who’ve had miscarriages who are heavier than recommended). So, there’s thatl But again, the vision prolbems, although often caused by the pressure problems, should have been clared up better than they had been, so he wants to have us see an neroopthamologist [neuroophthalmologist].

Now, the fun part. He told us he wanted to discharge me around noon on Friday and have an appt scheduled for me to see an opthamologist fo [to] figure out what was going on with my vision because that was worrisome. Mike had set up everything so he could tstay at the hospital with me thaFThrsday night [that night, Thursday], so he did. We hung around all day Friday at the hospital, and noon came and went. I woke up feeling cheery, but not long after was extremely burned out and sad and disappointed. And then my vision darkened a lot I grew very worried. We alerted the nurse, who said that Dr. H was on the ward that day, so she would tell him.

Anyway, after HOURS of sitting around, we saw Dr. H around two thirty or three thirty. He said he had been calling eye doctors all day and had had a hard time finding anyone who seemed to understand the severity of the problem or who would really discuss the issue with him. Finally, he had found a [Doctor] L, who wanted to see us that afternoon, as son as we were released from the hospital. We were to talke a copy of all my records and files over with us and  so on and then vifollow up with Dr. H on Nov thirteen.

We drove over to Dr. L’s office and got there just at five, as his office normally closes. He did a fairly cursory examnation and said he had already set up a time for me to have surgery on Tuesday morning at seven in the morning. They are going to make a small incision behind each eaye to relieve the pressure and to keep the pressure from building up further. But he doesn’t know if it will fix the damage that has already been done.

He said he thinks the BEST prognosis is that I will have to read large print for the rest of my life. BEST case scenario. I sobbed.  I couldn’t think about it. Of all my fears, Alzheimer’s and blinedness are my two biggest ones, and this one floored me.

Stunned by Dr. L’s revelation, I let Mike lead me out of the office to drive me to the pharmacy before going home. As my insides trembled, I did my best to put aside my fear and give Mike clear directions to the nearest pharmacy—which I had used when we had lived in the area just after we were married—through the combined darkness of the evening, my blindness, and the despair that was threatening to overtake me. Mike had to lead me into and around the pharmacy while I groped his arm like a lifeline. It was Friday night, and the place was busy. I had to use the restroom, which at this pharmacy was in the warehouse section, so he had to be led by an employee through the gauntlet of boxes, and I clung to him, terrified to let go, seeing nothing but the occasional looming shadow in the dimness. In the restroom, I fumbled around, trying to find the stall. After I found the stall, I began to panic—I couldn’t find the sink to wash my hands.

Finally, I made it out of there and nearly cried for relief as I clasped my husband’s arm with both my hands like a castaway who had just been tossed a life preserver after hours of being pummeled by a stormy sea.

He led me back through the maze of boxes. I have a hazy recollection of someone offering me a seat in the waiting area. I heard several people talking, including a child. It was all I could do not to collapse on myself, to keep myself from sobbing in front of all these strangers who I already felt were watching me, wondering why I was just staring at the floor.

The pharmacist explained to Mike that one of the medicines I had been prescribed was out of stock there but another pharmacy down the road had it. We headed for that pharmacy, which neither of us had been in before. I tried to remember where it was from the few times I had noticed it in passing while we had lived in the area, and then I tried, with my failing vision, to help my nervous and anxious husband maneuver through the very confusing parking lot.

Again, he had to lead me into the store.

This pharmacy was even more packed than the first. After we turned in our prescriptions, the pharmacist said that Mike could lead me to the waiting area while Mike gave the necessary information. I was tired, but I wanted to be by Mike, for the sheer comfort of his presence. I didn’t want to be alone in my dejection, my misery. I was doing everything I could to simply EXIST in the moment, to not think about my diagnosis, to just BE.

Mike set me down in a chair and walked off to supply the pharmacist with information. People ebbed and flowed around me; children muttered; people ran into my shoes. I tried to make myself as small as possible.

Mike had been gone for what felt like ages. I strained to see him, but anything beyond my knees was shrouded in nearly impenetrable darkness…I could see only a hazy glow, and shadow forms occasionally moving within it. I could not distinguish my husband from a stranger.

My heart pounded. I thought I would suffocate from the weight on my chest, or at the very least, hyperventilate. Fear started filling my head with crazy ideas: my husband had been mugged, or he had decided I was too much effort and had simply walked out of the store, leaving me to fend for myself. I knew these things were impossible, but my panic, my fear, my utter desolation drove me to the edge of insanity. I forced myself not to cry. I began praying…I think it was out loud. I didn’t care that I looked crazy, with my hair messed up from lying in a hospital bed for several days, that I probably smelled bad from not having showered, that my face was probably tear-streaked and my eyes puffy, that everyone in the area probably thought I was a homeless schizophrenic who had wandered in off the street for the warmth and had begun talking to herself. I didn’t care. I simply prayed. I don’t remember what I prayed. Probably something like “Please, God, please, save me, please make this all a bad dream, please, God, please!” over and over again. I poured out my soul in whatever few words I could utter, all while trying not to cry in front of strangers, trying my best to hold it together—that’s what the praying was, my attempt to hold myself together.

Even when I remembered the scene years later, think about it, my stomach twisted in those knots—which had become so familiar to me—and I saw only the darkness, with a bit of glow in front of me, the queuing ropes up and my husband nowhere to be seen…at least not by me. For years, it terrified me and I cried in remembrance of those feelings of utter helpless and humiliation, raw fear, and sheer TERROR.

The next day—the day on which I’d written all this in my journal, I was not quite so afraid:

Still, in my head, I hear the promise [that I had heard in response to my prayers during my days in the hospital]: “Your vision will be fine. Your vision will be restored.” I want to believe it, but I’m terrified. Part of me says that Dr. L doesn’t know enough about the situation and that he thinks because … I’ve had tunnel vision before with my migraines before that this is a chronic condition that … was bound to happen…

I’m still torn. I couldn’t think about it at all last night. I was inconsolable. I couldn’t think about it. It made me panic. My life, my work, who I AM…destroyed.  But still, my vision may return just as well as now. But even if it’s large print, so long as things don’t stay as dark as they are now, … I can make it. I’m strong and resilient and have a loving family and a wonderful husband. But wow, the identity and change issues such an issue would bring to mty kife [life].

But I believe that although it may take a long time, my vision will be laregely restored, through the weight loss and the pressure reduction and hormone balance and this surgery. …

Mike and I discussed it and think that at the very least, this [surgery] shouldn’t hurt Iunless, of course, we have the possiblej chance of the optic nerve being snipped), but then maybe something else can always be done. TDr. L had even dictated a letter while we were there to Dr. H that recommened that we see a neurosurgeon, so it’s possible that there’s more that needs fixed. So, who knows. At that point…at this point, for that matter, I’m so exhausted, still, from the ordeal of the past few weeks, that I’m trying to question intelligently diagnoeses that are made but also just want to accept almost any possible suggestion that comes our way.

Today has been a mixed bag of emotions. Mike called Mom at work last night and told her what we had learned, and she had said that they [she and Dad] would be here Monday evening to com for the surgery. But this morning, she called to say that she had spoken with Dad and they were on their way. They are going to stay with us a few days. I am so glad. But with these pain meds, my nervous system is so afected that I vacillate between being happy one second and anxious and terrified the next. It’s rough. Of course, it’s natural that I’m scared because this is one of my biggest fears, but I also know that I can make it. I’m strong. And if I go blind, I go blind. Son of a bitch, that’s hard to even contemplate. But people do it every day, live with blindness. And we don’t think this will be that bad. Right now, the uncertainty is the worst. I just pray and reassure myself and surround myself with my blessed family . And try to remember that the medicines are exacerbating some of my emotional responses. They aren’t causing my anxiety, of course, but they certainly aren’t helping relieve it, either. Maybe tomorrow will be better.

Maybe.

After seeing Dr. L and letting everything sink in for a few hours, I realized there had been warning signs for several years, and I sometimes wonder what if… about those days when the signs got all blurry and I couldn’t read them on my way to work so I turned around and went back home, those days when I had bought reading glasses because I thought my eyes were messing with me. On those days, I had always thought I’d had too much sugar or salt, that my eyes were just tired, or that I had a migraine. I felt a knot form in my stomach—one that would grow and become familiar to me over the next few months—any time I began to think, What if I had gone to a doctor?

My parents arrived later that day, and I immediately felt better. My sweet, sweet parents, always supportive and caring. With medicine and the draining of my CSF, I was feeling better and seeing a bit better, but it was still not great, and it was hard for my parents. My parents’ natural tendency is to help around the house when they visit, especially during times of trouble. It was autumn, so it was time for the lawn to be mowed, the lawn decorations to be put away, and the garden to be prepared for winter. I tried my best to help Mike and my parents with these things, but I was unable to do much effectively, blind as I was. As I tried pulling a cart full of empty two-liter bottles from the garden to the garage, one of the bottles blew out of the cart; I heard it but was unable to see where it had gone, though it was only a few feet from me. I think that really helped solidify in my parents’ minds how bad my vision had become.

I remember looking out the front window and barely being able to see my father on the mower, thirty feet away. Eating dinner one night, I didn’t know I had food all down my front until my family told me. What I could see was my parents do whatever they could to stay busy while they were here—mowing, running errands, doing housework … anything, I thought, so they didn’t have to worry about how badly I was doing. If I walked outside while everyone was busy, the fussed over me because they were afraid I would trip.

On one occasion, being unable to help, I took a snack (an apple and a muffin) outside and sat on the tailgate of my parents’ pickup truck so I could enjoy the sunshine—the light because it made my vision as bright as it could get, and especially the warmth to ease my muscles, which were still sore from the days of uncontrollable tremors I had endured. In general, I looked forward with hope to my upcoming surgery, though my moods continued to fluctuate with my grief and the cycles of my pain medicine.

 

Monday 19 October 2009

Dana sent me flowers today. … Of course, I can’t see the flowers really well, but I buried my face in them and smelled them. They don’t smell strongly, but they do smell gently, of a flower shop, of a funeral parlor, even of a church00of all those peaceful places that you walk into and smell and immediately relax at the gentle flower smell. I cried a little. I made sure to find the camera and take a picture so I can enjoy the flowers more fully when [I] can see better in a few days.

Today has been a better day for e seeing. I woke up this morning starting at five thirty with general irritating feelings of anxiety in my stomach, tying it in knots, and I kept going back to sleep until eight, when I just couldn’t stand it any longer. I got up at eight and called [a couple of friends]. Yes, I could actually READ y cell phone screen, it was amazing! It was a lot of work, but it was amazing! … I left [voicemails] and … [one friend] called back right away. He, of course, said I could call and talk whenever I needed to. Bless him. I knew he’d be one of the poeople I’d need and who would be there when I needed him. …

I’ve [had] no pain meds yet today. None since about seven thirty or eight o’clock last night, I think. Woo hoo!

After I got off the phone with [a friend], there was some anxiety, so I did spend some time praying—a long time thanking the great spirit for all of the blessings in my life, for all of the wonderful caregivers, both professional and nonprofessional, in my ife in the past few weeks, asking for their protection in the days and weeks to come,; asking for help for the team that will be performing my seurgery tomorrow; asking that the recovery I experience be even greater than the doctor has estimated; etc.

This morning and earliey this afternoon, my vision have been very good compared to the past few days. They have been nowhere near their normal levels of course, but very good. They [My eyes] are finally starting to get worn out, I think, though, because I pent [spent] a couple of hours outside with Mom and Dad and Mike, doing some garden work, getting the lawn and garden ready for winter, things that we should have been doing in the past few weeks but haven’t gotten around to becuause of recent circumstances. It was a little cold for me once [and] I was unable to kep [keep] helping … as I’m kind of tuckered out. And my head is now finally starting to hurt. But wow, it’s been a while, and I like that. J I felt good enough today to make all of the phone calls to everyone I wanted to update about my condition and ask to keep my [me] in prayers. … TI had to leave breief messages for [some], but I expect I’ll be able to speak with them before the evening is out.

On the morning of my surgery, I prayed for God to guide Dr. L’s hands and to guide the actions of every member of the surgery team on every surgery that day, to help them remember every bit of information they needed to know for any situation that might arise that day, so they might give the very best surgery and care to every patient they had that day. Yes, of course, I wanted to be included in that number. There was more than enough to go around, as far as I was concerned.

***

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: https://www.youtube.com/watch?v=DrRp3gfAJFE&list=PLZ_gyVAJxzK_2sbvu951Hnc46btk9n7hm.

 

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