Of vision and visions . . .

I have a disease called pseudotumor cerebri, and was recently hospitalized because of it. I had the most horrible, and then the most incredible experience, and I have really felt that the Lord wants me to share it with everyone I can. I feel I have been made "to sing the song of Redeeming love". I hope you won't mind me sharing it here. It is VERY long, but I hope you will find it worth the read . . . I see a fabulous Neuro-Opthalmologist at the Moran Eye Center at the University of Utah. She really knows her stuff, and she works with one of the leading Neuro-Opthalmologists in the world, who also follows my case because it is so interesting, from their point of view, at least. They are among the best in the world at what they do, and have all written loads of papers on PTC. Anyway, for the past month or so, my symptoms were getting way worse, so I finally broke down and went in to see my Doc. She said "wow, that's bad, we need a spinal tap." I have had real trouble with spinal taps in the past (spent 3 days sedated in the hospital following the last one), so we wanted to be very careful. She suggested admitting me to the hospital for the tap and keeping me for 24 hours for observation, to make sure everything was ok. So, on Tuesday night, I guess that was November 2, yeah, it was election day, I was admitted to the University of Utah Hospital. I got a heplock, which for everyone but Becky, means an IV that isn't connected to anything. They do it in case of emergency, and for IV drug administration. That night, a herd of young residents came in, accompanied by a young doctor, maybe an intern, and they proceeded to attempt my spinal tap. Now, Randi can tell you this, but they hurt, and I don't mean in the nice and manageable pain way, but pain that comes from deep inside you, wells up and works its way out in an audible, deep groan. That kind of hurt. Anyway, they practiced on my spinal column (tap, tap, tap . . .) for a few minutes and decided they couldn't do it. They gave me pain meds and left, having decided a real doctor could try it under fluoroscope (guided by radiology) the next day. The medication they gave me for pain is called Diladed (sp?, and pronounced like 'allotted'), and I highly recommend it if you are into opium dens. I had told them about the meds I'm allergic to, and one resident responded by telling me they were going to give me this, as it was the most pure opiate out there, and they didn't mess around. I was pretty happy about this, as I was really hurting. So, I got my drugs and went to sleep. Every couple of hours I would wake up and ask for more drugs, with which they were very kind to oblige my every request, and then I would go back to sleep. In the morning, I had my spinal tap, which showed my CSF pressure at approximately double what is normal - no wonder everything was going down the tubes so fast. They drained my CSF down to normal, and the headache was gone. Two hours later it was back. CSF completely replaces itself approximately every 45 minutes. The tap went fine, and I should have been discharged at that point, but it didn't work that way. They sent me back up to my room and I took drugs and slept and took more drugs and slept. I didn't eat, and I didn't drink. I didn't care about those things. Darrin just sat faithfully by my side, the devoted husband that he is, and prayed, waiting for someone to tell him he could take me home. That was Wednesday. On Thursday, they told me my doctor wanted to see me on Friday morning. I took drugs and slept. Darrin sat by my side, his worries growing. He is my best friend, and the love of my life. On Friday, before Darrin arrived, I saw my doctor. Someone from somewhere wheeled me over, as the buildings are connected, but unaffiliated. My vision was dramatically worse, in fact, I was going blind. I was told there was no time to lose, and that I had to do something immediately, or go blind altogether. I chose the optic nerve sheath fenestration, and was scheduled for it immediately by the man who invented the technique currently performed everywhere. That sounded as good as it could, I supposed. I was scared, but drugged, so ok. They sent me down to the surgical center where I was being "prepped" when Darrin arrived. He just about blew his stack. This is a very drastic procedure, and quite risky, and he just wasn't prepared for it. I sent him upstairs to talk to my doctor, and he came back confident that it was the right thing to do. I have really bad veins. If I'm lucky enough for a needle to find my vein, the IV always infiltrates within a short time, which was the case at this point. The nurses couldn't get a vein after several tries, so they called in their veteran, who turned out to be Nurse Ratchet. If I saw her today, I would spit in her eye, she hurt me so bad. She was really rough, and threw the blood pressure cuff onto my chest and manhandled my already black and blue arms. She made me cry a lot, and I just wanted to go home. After she jabbed at my flesh a couple of times and failed (HA!!, oh, but wait . . . ouch!) they sent in the anesthesiologist himself, who got me on the first stick. I should feel a bit vindicated about that, but my arms, which are still bruised, still just ache, and its been nearly 2 weeks now. The surgery only lasted about 15 minutes. As my mom explained, they cut a slit in my eyelid (right on the crease, very discrete, I think) and squished my eyeball aside. Then they drilled into my optic nerve sheath somehow, I'm not real clear on it all, it was so sudden. Afterward, Darrin was planning to take me home, but the people at the surgical center said I had to go back to the hospital because I was still checked in there. It was late in the day, I think, although because I had been going blind it seemed like evening or nighttime all the time, so I'm not positive how late it was. Darrin really just wanted to get me out of there. A resident came in and asked the same question they had been asking me every day, "So, what do you want to do?" All week I had been waiting for someone to tell me what to do, and all week they had said, "Ok, then, we'll just keep you another night for observation." Darrin told this guy he wanted to take me home. The guy said ok, and that he would get things in order. Three hours later, nothing was in order, so the resident said maybe it would just be better to keep me over another night, and have everything ready to go in the morning. Completely frustrated, and not knowing what to do, Darrin said ok. He was getting really scared. My affect had completely changed since Tuesday. I was grouchy, mean, and demanding, which is seriously just not me. I hadn't eaten or drunk anything appreciable since Tuesday and I was hardly able to pee (nobody seemed to care but Darrin). My left eye was purple and swollen shut, I had needle tracks and bruises up and down both arms, and I hadn't bathed in 4 days so my hair was sticking out wildly in every direction. I looked and acted like someone he didn't know. He was just plain scared. I took my drugs and went to sleep. Saturday morning, I expected to go home. I had talked to some friends, and they dropped by to see me. They couldn't have been there for more than 3 or 4 minutes when a gaggle of residents waddled in, led by their supervising doctor, a neurologist who had dropped by 2 other times during my stay (I had concluded that he was on "pep" pills upon our 2nd visit). I told my friends they didn't need to leave, because they were there to talk about my brain, and how deeply personal could that be? The big man in charge began to speak. "First of all," he said, "your MRI looks ok." No news there - with PTC an MRI is characteristically normal, otherwise, it isn't PTC (remember the pseudo). Then he began to accuse me of being a dope-head, basically. He was under the impression that I had come to the hospital for drugs, and had stayed all this time just for the drugs. I'm not sure how my physical appearance escaped him, ie. the purple, completely swollen shut eye complements of my surgery the day before. I was really confused. On top of the drug-induced haze I was in, this man, who was supposed to be one of my caregivers, was accusing me of something which completely mortified me! I was utterly befuddled. The man was standing there, berating me, yelling at me, and the little residents were lined up at the foot of my bed, standing shoulder to shoulder with their arms crossed, like the brute squad. My friends were just standing there with their mouths open, flabbergasted and not knowing what they should do. Fortunately, they know me well, and know what nonsense this doctor was spewing. I looked over, and Darrin was standing in the doorway. My hero! Most of you have met Darrin, I think. He is a substantial individual. He is 6'7" tall, and appears as a towering mountain at times. I wanted to cry when I saw him in the doorway. He takes care of me. First thing, he ushered everyone out of the room but the doctor. He then began to put things in order. He explained to the doctor that I had not stayed because I wanted to, and that every day he had tried to take me home, but that every day they just kept me there. All of a sudden the peppy doctor sang a different tune. Oh, he was so sorry, and he had been told that I was asking to stay. He hadn't realized I had WANTED to go home, and of course I could go home. I was so mad, I was shaking. Why was he talking like that to my husband, so obsequiously, when he had just been yelling at me and accusing me of drug abuse? He even put his hand on my shoulder, like he was so compassionate toward poor little me. I looked at him and said, "Ok, the first thing you are going to do is get your hands off me." I shoved his hand away, he almost made me shudder. So, it took them a good while, but they got orders for meds together and I signed release papers. Oh, and this is really funny - The first several days I had been on the cardiac floor, because that was the only bed available when I checked in. The nurses were really good, but mostly just left me on my own because I didn't really need anything from them but drugs. On Thursday they had transferred me to the orthopedic floor, because they needed to give the space I had been occupying to someone else, and ortho was where they could fit me in. Evidently the orthopedic floor is full of patients who don't need good nursing, because every nurse I encountered there spoke only broken English. At one point I had to fight with my stern, male Indian nurse to get what I needed. Anyway, this is relevant because I was trying to get my nurse at that point, who was Asian and only spoke broken English, to take my IV out. She was too busy standing around watching the PT in the next bed, along with her aide ("OK, I come take out when finished with this, OK?"). I was angry and impatient, and finally just pulled it myself, applied pressure and used the cottonball and tape from the last failed IV lower down on my arm. She was frantic when she found out. Frankly, I just didn't care. I was going home. Are you needing a stretch? This is a good place for it, because just ahead is where the story really gets interesting. So stretch your legs a bit, and come back. . . . Ready? ok. From that point I remember almost nothing until early Sunday morning. I have a very fuzzy recollection of Josh and Kassie being here (One of Bill's sons and his wife). I just remember that I wanted a blessing from Josh. I went downstairs and asked for a blessing, but didn't specify the giver. Darrin had the same impression, and he suggested Josh. I vaguely remember receiving a blessing. That is all. There is nothing else until I found myself waking on Sunday morning. I found myself about 2/3 of the way down the stairway, with Darrin, Jim and my dad trying to wrangle me down the rest of the way. Wrangle is the right word, because I was really mad. They kept hurting me, and I just wanted them to leave me alone. I couldn't figure out what was going on, and I was so mad at them I was yelling. I think I told Jim "Get your hands off me!" He just laughed and said, "Ok, then, get up and walk down!" I couldn't. My dad and Darrin assured me they weren't trying to hurt me. They explained that I was very sick and that the ambulance was coming. That didn't make any sense to me. I had just come home from the hospital. I was supposed to be getting better, and I didn't remember getting worse. What was going on? In the end, I decided they loved me and I would just have to trust them. Darrin tells me that we came home and I went right to bed. He woke me up at some point and got me to take my painkiller (the loon at the hospital had sent me home with Oxycontin, if you can believe that one! Maybe he was just trying to keep the druggie happy so she wouldn't sue him?) and I went back to sleep. Darrin said I moaned all night. Around 6 or 7 the next morning, he rolled over and looked at me, and saw that I was completely grey. He tried and tried to wake me, yelling at me and shaking me. He even made a sharp knuckle and ground it into my chest, thinking the pain would rouse me. Nothing did. He knew I was alive, though, because I was still moaning softly. My poor Darrin, it must have been a nightmare for him. He told me later he thought I had had a stroke, based upon his experience with his step-dad. He called for dad and Jim, and they got me into a wheeled office chair, and rolled me over to the stairs. The office chair has sharp corners on the arms, and I bumped one getting in. I don't have any memory of it, but it must have really hurt, because they said that was when I started to wake up. When they got me downstairs finally I think I was back in the office chair. I decided this was a good time for a potty break, so they wheeled me into the bathroom and waited, then wheeled me out to the front, where the ambulance was waiting. After all the wrestling on the stairs, after all the yelling I did at Jim, after maneuvering onto the toilet and back again, then onto the gurney, the EMTs checked my oxygen level and it was at 72. I know this because Darrin told me. I was not aware of anything enough to be concerned about it, but I was really, really scared. There were two really nice ladies in the ambulance who took great care of me. They were so kind, they took one look at my black and blue arms, and took pity on me. They decided to not gouge me any more, and waited until I got to the ER to get an IV in. I love them for that. I think it was one of the most merciful acts I have ever had bestowed upon me, particularly after Nurse Ratchet's special treatment. When we got to the hospital, they hooked me up with IV fluids and got blood drawn immediately. They really, really took care of me, and I really believed I was going to be ok. It turns out my liver was failing. They called it drug induced hepatitis. In a nutshell, the rocket scientists at the UofU Hospital had WAY over drugged me, and it had caused my liver to be overloaded - so overloaded, in fact, that it was just shutting down out of complete frustration. There are two liver enzymes they test for. I can only remember one, but its normal level is a high of around 50. Mine was over 2300. Their remedy was just to watch overnight, and see what happened. If things weren't going well, they would give me a kind of anti-drug drug. So, what did happen? A miracle. There's no other word for it. The level dropped by nearly 900 points overnight. The doctor was astounded and just incredulous. He was almost giddy. The next night it had dropped another 400 points, so they decided I was well on my way to recovery. I asked if I could go home. He answered with a resounding "Yes!" (Remind me later to tell you my ghost story, because this is already way too long and I'm not done yet!) I took my first shower in a week, and went home on Tuesday morning, exactly one week from when I had left home to go see my doctor in Salt Lake. Ok, that is really the end of the medical story for now. I say "the medical story", because there is quite a bit more that is a story of an incredible spiritual journey that took me to the threshold of "the tunnel" and back again. For those who are not inclined to have their hearts *****ed by the absolute certainty of the testimony I am about to give which pertains to the Good News of the Gospel of Jesus Christ, simply know that my doctors expect my liver to recover fully and that I am continuing in my struggles with PTC with a fresh resolve to lose the weight I'm told will take away my symptoms. You will want to move on to the next email now, but please know that I dearly wish you would stay and read on. I can promise you that what lies ahead will bring you nothing but happiness. For those who have chosen to stay, I hope you aren't cursing my long-windedness. I find that there is simply no short way to adequately tell this story. I could simply say "I got really sick and spent a week in the hospital. I almost died, but I'm doing lots better now, so no big deal", but that just wouldn't cut it, particularly in light of what I'm about to tell you. This is deeply personal, as are all truly spiritual journeys, so I know the risk I take in sharing it - will it be received? Will they think I'm silly? Will they understand? But this feeling is far too significant not to share, and the Lord has made it clear to me that this is a story for sharing. You see, I saw the tunnel. You know the one - it is infamous, the one with the brilliant light at the other end. I didn't see the light, because I was prevented from entering the tunnel. But I'm not telling it right. I need to start from the beginning. I can't be sure when it took place. Remember I told you I have almost no memories of the space of time between getting ready to leave the hospital in Salt Lake and awaking on the stairs? I have no concept of space or time. I actually thought Josh's blessing had happened the week before. It is a memory so out of place, like the Lord raised me from my bed so I could have that blessing, and then gently laid me back down again without really disturbing my slumber. I have vague recollections of terrible visions, brief snapshots so frightening and horrible I wanted desperately to wake up and leave them behind. If I had to choose one word to describe the way it felt it would simply have to be "hell". I believe now, based upon what I know of my health at the time, that there was so much medication stored up in my system (remember my liver was not processing it so it had nothing to do but collect) that the horrible visions I received were nothing but the result of several days of pure opiate use. The last of my visions, however, was different. I can see it quite clearly even now, even without closing my eyes. I think everything is in black and white, like an old photograph. I am standing on a pathway. The pathway is non-descript and has no detail in my memory other than that it leads a short distance ahead. At the end of the pathway is a tunnel, which is clearly the focal point of the scene. Non-descript like the pathway, this tunnel is my goal, it seems the natural progression, afterall this IS a pathway, and it DOES lead to that tunnel. Besides, I kind of just want to see what's inside. The tunnel is dark, and a bit foreboding, and I feel a bit of hesitance, despite my desire to go on. This is when I notice them. On either side of me, lining the pathway is a single row of people. I don't think I know them. They all seem also to be physically non-descript, not necessarily devoid of characteristic, but almost just insignificant as to detail and characteristic. All except one. I can describe her to you in some detail: She appears as a young woman, yet she seems ageless. If I had to guess, I would say she is somewhere in her early 20s. She has dark hair, shoulder-length, worn in big, loose curls. She is attractive, with a pretty face. She wears a white shirt under a dark, button-front sweater, which is open, and the rounded collar of her white shirt is embroidered and worn out over her sweater. Judging by her style, I have the distinct impression that she is from the 1930s or 40s, and oddly that makes sense to me because everything is black and white like a picture from that era. I want very much to please her. It is important to me. However, she is very stern in her expression, like a mother showing disapproval and warning to her young child. I know that I have not made her happy, and I am very confused by this. I want so much to just do what would make her happy, although I can't say why. It seems like she isn't at all pleased with me for being there on that pathway. But why? Why shouldn't I be there? Why can't I go on? Why won't she speak to me and just tell me what I should do? I would gladly do it, if only I could understand. It is all so confusing, and it feels like my heart is being torn in two. There are only two people on each side of the path beyond her. I am aware of the fact that no one would stop me from going on. There would be no one to bar my way, and I could choose to just walk on. However, there is that persistent, nagging feeling that I would be letting her down. In fact, I am now aware of the feelings of all of these people. They simply don't want me to go any further, not a single step. This is so bewildering. There is the tunnel. No one will bar my way. I can choose to go on, but oh, it makes me ache to think of hurting these people, especially her. The scene begins to fade, to blur. And I am awake on the stairs, and why is Jim hurting me? I am so confused. When I woke up in Sanpete Valley Hospital (I think it is called) on Monday morning, I was scared. I knew what had happened, and I had so many scary things in my head. I know that I slept from the time shortly after arriving at the hospital there on Sunday morning until Monday morning, and my thoughts were still a jumble of confusion. By Tuesday morning, my head was clearing and I was starting to think in a more ordered fashion. I was going home, and that was all I really cared about. When I got home, I slept for most of the day. I had no appetite, and I had to force myself to drink. When I was brought food, I choked down a few bites because I knew I should, and promptly went back to sleep. Slowly, my body was working on getting all of those awful drugs out of my system. For the next two nights, I went to sleep afraid that I would not wake up to the husband and children I love and cherish more than my very life. I was still feeling that terrible physically. I did not tell Darrin. He had been through enough. He was exhausted and desperately needed rest. On Thursday, though, I was amazed to awake feeling a marked improvement from the day before. On Friday, I awoke feeling almost normal. On Saturday, we took the kids to the movies. I was astonished! In just a few days, I had gone from feeling so terrible I still feared for my life to feeling well enough to take my kids to the movies! The doctor at the hospital had told me it could take up to two months for me to recover from this. How could this have been accomplished? I was filled with wonder and complete awe. On Sunday, I went to church. We were late, and as we walked up to the church the Bishop came out. He was so surprised to see me, he almost couldn't believe it. I told him my story. I was filled with the Spirit in a way I had never before been. I told the Bishop, without equivocation, that the Powers of Heaven had been called down upon me through the power of the Holy Priesthood, and that I had been returned from the very threshold of death itself. I felt this then, as I feel it now, with such absolute certainty that there is simply no debating or denying it. It is as clear to me now as anything ever has been that the Lord has looked down upon me and has seen my pain. He has heard my cries and has rescued me from the most dire of cir****tances. It was electrifying and I felt like my whole soul was on fire. I told him that I was feeling this with such certainty, I had awoken feeling sorry it wasn't Fast Sunday because I so much wanted to share this with everyone. I went in to the end of Relief Society and sat down. Believe me when I tell you that I received many double-take glances and outright stares. Many, many people had been mobilized in faith on my behalf. One of the great things about my mother is her ability to call on those around her for their faith and prayers in times of need. I think I will never know exactly how many people were praying for me, extending their faith to the Lord on my behalf, but I can tell you for certain that I have felt the influence of every single one of those prayers. I think half of our ward must have been praying for me. I know of at least 4 temples where my name had been submitted to the prayer list, and the faith of all those temple goers was calling down the blessings of our Lord upon me. As I sat down, a scripture came into my mind. It was one I had fallen in love with before, but at that moment it struck a new chord in me. It was so perfect, so poignant, so appropriately written for this precise moment in time. "I waited patiently for the Lord: and he inclined unto me, and heard my cry. "He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings. "And he hath put a new song in my mouth, even praise unto our God: many shall see it, and fear, and shall trust in the Lord." I just wanted to stand up and shout for joy! I do try to be a little more restrained in church, though, so I stayed in my seat, and just kept all these things and pondered them in my heart. When it came time for sacrament meeting, the Spirit told me that the Bishop would call me up at the end of the meeting to bear my testimony. I just knew. Guess what, he did! I was so excited, when he asked me to come up I left my scriptures in my seat, even though I had intended to bring them. I borrowed some from a member of the bishopric, and was going to quickly flip to the 40th Psalm and read my new favorite scripture, but if you can believe it, it seemed as though his scriptures didn't have the book of Psalms or any of the books near it that would have allowed me to flip right to it. I finally gave up, and recited it, from the heart. It wasn't a flawless recitation, but it was the best I could do. I gave it all the emotion I was feeling inside, and I hope it was a gift fit for the Lord, adequate to show Him my gratitude. Right then and there I proclaimed to all the ward that I will sing a new song. I told them my story, abbreviating it the best I could and I wept openly as I told them of the wonderful grace of the Lord, of the great power of the Priesthood, and of the glorious and sweet power of faith and prayers. I bore witness to them that the power of the Priesthood is so strong as to be almost tangible, so real a force that we could almost reach out and touch it. I bore my testimony of the infinite love and sacrifice of our Savior in a way I had never before done. I told them without hesitation that he not only knows our grief and our sorrows, but he walks with us every step of the way. I know this all to be true. I know it so firmly, so strongly that no power on earth could convince me it is not true. The truthfulness of it courses through my veins as surely as my own blood. It fills me with a fire of such conviction that I want to shout it from the rooftops. I want all to hear about it, and know its wonder. I want everyone on this earth to know God and his Son, Jesus Christ in the way I do right now. I want them to feel this joy, so exquisite and sweet, it resonates through my body like a song. I have never known anything more surely than I know this, right now, at this moment. It is pure light, and song, and knowledge, and all that is good and praiseworthy. It makes me have such pure love and delight that I want everyone to have this, to know this and feel this. Men are that they might have joy, and at this very point in time I am filled with such rapture, I can tell you that my joy is full! Oh, how I want to share this feeling. Have I done so at all? Has your heart been touched? Have you felt Him near you as I have shared this? I want so much to sing my New Song, a song of Everlasting Love, a song to glorify our Loving Father and his beloved Son, my Savior, Jesus Christ. Do you know that the Grace of our Savior is sufficient for you? Do you know that the blood of the Lamb has been shed for you, and that you can be bathed in it and become spotless in Him? Do you know that the bridegroom awaits you, and that all you must do is simply come unto Him? Do you know that he doesn't expect you to be perfect, but that he just wants you to do the best you can, and that he will make up the difference; that we can get through the door to exaltation with Him, even though we can never be good enough on our own to even set foot across the threshold? Right here, right now I know these things, and I testify of them to you. I feel like I have to shout this message out loud, quickly before the things of the world get in the way and I lose the luster of the moment. The experience will always be there for me, but the brilliance of here and now will fade and my zeal and resolve will melt slowly away, like a great, glorious sunrise that fades into the coming day. What I will be left with will be fond and special memories, and the remembrance of something lovely, a gift of grace as only the Lord could give it. Oh, how I want to share this with you. With all my love, and faith in Christ, Ruth

Wow Ruth, Wow! Thank you for sharing this special experience. I am glad you are doing better. Please take care of yourself. Grins, Kaye

Ruth that is awesome! What a special blessing! When we ask in faith all things are possible through the Lord. Your goal was met. I was truly uplifted and inspired to know that our Father in Heaven knows our needs and answers our prayers of Faith. Thanks For Sharing! Hope your recovery continues to go well. Jane Lewis

Hi Ruth. I just stumbled upon your story and was so moved. I was recently diagnosed with PTC and I no longer have insurance and im scared and in pain. I also live in Utah. In Orem. I was hoping maybe we could chat one on one via email. My email is [email protected]. I look forward to hearing from you.