Archive for March, 2018

Born Again

Monday is my official birthday, but one year ago today, I had a medical crisis. Although it was an extremely scary ordeal for my parents and me that we hope never happens again, it was also an interesting spiritual experience in which I felt like I had a re-birth of sorts. I have heard this feeling is common for people in medical crises, but now I understand it first-hand.


On Wednesday March 22, 2017, I had just finished my typical work-day breakfast of oatmeal, a banana and an apple with peanut butter, when I suddenly felt sick to my stomach. Because of underlying medical conditions, we had learned that stomach bugs are riskier for me than the average person. I have had to go to the emergency room by ambulance twice in the past when I would pass out from sudden dehydration. So I called in sick to work so that I could rest and drink plenty of fluids. My dad had an important meeting for work that day, and my mom was supposed to leave for Indiana after dropping me off at work. Four months earlier, my grandma on my mom’s side had been in a bad car accident and Mom and her sisters took turns accompanying her to many doctor appointments. I felt bad inconveniencing them but they understandably didn’t want me staying home alone given my past history with stomach bugs. Grandma’s appointment was not until Friday, and Mom was going to go down early to visit, but instead, she stayed home with me that day. After taking it easy all day just watching television and eating Mom’s home-made chicken soup, I felt much better by evening. Mom made up some bland chicken and rice, and some egg salad for me to have on hand, and if I had no more stomach issues by the next morning, we all felt comfortable with her leaving for Indiana. With my part-time schedule, I was now off on Thursdays, so the plan was for me to take it easy one more day and by Friday I would be fine.


Thursday morning, I woke up with a headache, but headaches are not unusual for me. I took some Excedrin, went back to bed for a little while and before long it had gone away, so we all felt comfortable with Mom leaving for Indiana, especially since Dad would be able to work from home most of the day. Looking back I remember being a little less energetic than usual, and my appetite was slightly diminished. I could barely finish a can of Amy’s French Country Vegetable soup I had made myself for dinner, something I can usually finish without a problem, but I chalked it up to the fact that it had beans in it. Maybe that wasn’t the smartest food choice so soon after a stomach virus, but I kept it down and a couple hours later even felt well enough to do my usual exercise routine on the treadmill before going to bed. I fully intended to be recovered and ready to go back to work the next day.


But the next morning when I woke up, I just didn’t feel right. I was tired beyond just the usual “it’s cold outside and I don’t want to work today” tired that is natural for working adults when the alarm goes off at 5:30 in the morning. When I stood up, I felt dizzy and chilly, and I had no appetite at all. My dad offered to make me scrambled eggs, but all I could stand the thought of eating was a banana. I felt terrible missing work again now that I was on a part-time schedule, but after a phone conference with Mom, she convinced me I needed to stay home. So I called in sick, and thinking I just had a fever, I took a higher dose of cortef, a stress hormone that my body does not make naturally due to Panhypopituitarism. Usually when I have a fever, this medicine is like a miracle pill. I feel so much better in a relatively short amount of time. But that day, it wasn’t the miracle cure it usually is. In fact with each passing hour that day, I felt worse. My dad cancelled all of his work appointments for that day and worked from home while I slept off and on. At some point, I remember him running out to Walgreens to buy a thermometer. I cannot remember if we didn’t have one, or if he just couldn’t figure out how to work the one we had. At any rate, when he got back with the thermometer, it showed I had no fever, even though I felt like I did. I also just felt like I was in this weird fog I never experienced before. My dad would ask a question and I would be really slow to respond, and I kind of remember watching coverage of the unsuccessful attempt by Congress to repeal the Affordable Care Act, but later I would ask if it really happened or if that had been a dream. My dad called Mom regularly but since neither Dad nor I knew what the heck was going on as I had never felt that way before, we probably didn’t give her the best description of the situation. Sometime in late morning or early afternoon, I had a bowl of applesauce, but water and applesauce were the only things I could stand the thought of consuming. Thinking maybe I was just dehydrated, I took a few water bottles back to bed with me and drank water every time I woke up. But I kept felling worse. Around 3:00, my parents and I came to the conclusion that something more was going on. I remember Dad giving me the phone, and despite being in this fog, I was able to call my primary doctor’s office to see if I could get in last minute. I remember being told by the receptionist that there were no appointments until Monday, but the next day, I would not be able to remember if I actually scheduled an appointment for Monday. (When I told my sister about this over the phone in the hospital the next day, she laughed and said that now I kind of know what it is like to be drunk) At any rate, since I could not get into my primary doctor, Dad was going to take me to urgent care. I remember him giving me my purse and a pair of shoes which I put on in my fog, and then I stood up from the couch in the livingroom, walked a few steps, and then in the blink of an eye, I was lying in a hospital bed.


Here is where I felt as though I had been born again. When I had passed out in the past, I would lose consciousness for a few minutes, but when the paremedics arrived, Mom and Dad had gotten some water and medicine into me so I was extremely sleepy and weak, and my blood pressure was low, but I was aware of everything. This time when I woke up, I knew I was in a hospital bed. I could feel the familiar monitors, especially the oxygen monitor on my finger, but that was literally all I knew about myself. It was as if my mind had gone completely blank. I literally forgot who I was, how old I was, even what month it was. I felt like in some distant life long ago, I had a job, but for the life of me I couldn’t remember what it was. I felt like in some past life, it was March, but that seemed like years ago. In an effort to make sense of things, I remember having some crazy thoughts. Maybe Buddhists and Hindus are right. Maybe I was a newborn baby about to start a new life but was the rare case where I felt like I had lived before. Of course now that my brain has recovered, I realize that such thoughts made absolutely no sense. Babies don’t have words yet, so they aren’t even aware of the word hospital. Then I wondered if this was all just a really vivid dream an at any moment, the hospital room would dissolve and I would be back in my own bed. But when I opened my mouth and groggily asked “what day is this?” and a nurse answered that it was Friday, I knew this wasn’t a dream as in the past, I have woken myself up from dreams by talking. Now I know that in medical terminology, I was disoriented, a common occurance with people who lose consciousness like I did. Probably because emergency room staff are used to such behavior, I remember the staff didn’t seem concerned that I didn’t know what day it was. Instead, they told me my dad was there, and he came to my bedside. I knew something serious must have happened because I could tell he had been crying. But I don’t know if there was a spiritual presence with me those first few moments, or if I was just too foggy and weak to care what happened to me, but I felt a strange sense of peace about me.


It turned out that I had a grand mal seizure due to low sodium. All of my life, I remember my endocrinologists mentioning they were testing my sodium levels, but had never given it much thought. When my mom found out what had happened, she had said this was the cause of my seizures as a baby during treatment for my brain tumor. But since my dad was at work when I had these seizures as a baby, and I was too young to remember them, neither of us knew what was going on. I was admitted into intensive care Friday evening because sodium has to be increased slowly and under doctor supervision or else the brain could swell. I didn’t sustain any brain damage, but that evening, I remember my processing was slow. I still had all my data saved deep in my brain, but like a computer that crashed and needs to re-boot, it took me longer to search my memory and answer basic questions the staff had such as if I had any vision at all. When Dad said he had talked to Mom and she was on her way home, it took me a few minutes to remember why she had gone out of town. The emergency room nurse had told me it was Friday, and I remember that it was a Friday when I was at home, but that seemed like so long ago I couldn’t believe it was the same day until my dad casually mentioned that he was going to watch college basketball with the sound muted. Slowly, I connected college basketball with March madness and realized that way that it really was still March.


By Saturday morning, my appetite had returned to normal, and gradually, my sodium level returned to normal as well and with it my energy and cognitive function. I was released from the hospital on the afternoon of my birthday, but for the first couple weeks after I was released from the hospital, I was struck by two things. Other than a bitten tongue, a common injury with people who have seizures, and some sore muscles as if I had overdone it at the gym, I felt great. Perhaps because my immune system was kept busy healing me from my seizure, I didn’t have any headaches for a couple weeks, and I felt well rested. I also noticed that I didn’t want to sit still and sometimes had a hard time staying focused on things like reading. At first I feared that I had sustained some brain damage, but I think my dad’s theory was more accurate: I was just antsy. It was as if my body got a re-set, and I had a new lease on life. In addition, I found myself striving for a spiritual re-set to match the body re-set I was enjoying. I found myself appreciating the love and kindness of family and friends more than I used to, and took renewed delight in simple things like fresh spring air or a good song on the radio. I found myself striving to speak more kindly to and about people, even when I was upset with them, and feeling more guilty when I was unkind. I returned to work on Wednesday March 29, and while I used to get all worked up over office politics and gossip, I found that I had no desire to be part of petty matters like that anymore. And that peace and calm I had when I regained consciousness in the hospital lingered weeks later so that little things which used to aggrevate me didn’t ruffle me at all, as if I were in a persistent meditative state, enveloped in impenetrable calm.


By no means has this spiritual re-set been perfect. Just as all newborn babies lose their innocence and fall into sin, so even people like me who are blessed with a new lease on life slip up, especially since time has a way of dulling the powerful emotions surrounding a significant event and the resolve that came with them. And in my case, I noticed that when my crisis had passed and a new family trial took its place, I forgot about the peace and calm that I thought I had acquired. But while I am still far from perfect, I have definitely made progress in my spiritual maturity because of this event. While I often fall short of being the person I would like to be, I find that I am more self-aware when I do fall short, and strive to make things right by being quicker to apologize to someone I snapped at, or taking a deep breath when something petty is about to ruffle me, and put it into propper perspective. I hope that I never have another seizure or other life-threatening situation again, but I meditate on this event often and strive to live as someone who recognizes what really matters in life, and appreciates how fragile and precious life is


Lessons Learned: Humility

One weekend when I was in high school, my dad and I went to our state’s convention of the National Federation of the Blind. I enjoyed seeing some friends and chatting with vendors selling the latest technology to assist the blind. But Dad and I were both turned off by the pride exhibited by some of the blind people there. Now I am all for independence. I think people with any disability should strive to be as independent as they can be, and parents and teachers should set realistic, yet high expectations for children with disabilities. But at the convention, I realized that it is a slippery slope from reasonable independence to pride. At the time, my Christian faith was not as developed, so I didn’t give any thought to the sinful nature of pride, but I remember thinking how the pride of these blind people added unnecessary difficulty to their lives.


For example, people would be wandering around the hotel, tripping people with their canes, clearly lost, but when someone offered to help them, they would get upset. Blind people can, and should travel independently in their everyday lives. In addition to being blind, I am also directionally challenged, which my mom says is genetic, so I need a little more instruction and practice even compared to other totally blind people. But eventually, I learned every new school that came my way, and I can confidently navigate my office with a dog or a cane. But for a convention where it is extremely crowded, and you have never been in that particular hotel before, and likely won’t visit again, at least not for a long time, there should be no shame in accepting offers of assistance. No reasonable person would doubt your capability as a blind person if you sought help in this unusual circumstance.


One of the speakers was a blind parent who proudly stated that she travels with her children on the city bus and declines offers of a ride home from sighted friends, even if it is pouring rain. I live in a suburban area where there is no bus service, but if I lived in an urban environment, I would make every effort to learn the bus system. Blind people in urban environments use city buses and even subways successfully every day. If I lived in an urban environment, I think I would strive to use public transportation as often as possible so as not to impose on people, but also because I am the type of person that needs to practice routes regularly or I will forget what I need to do. But every now and then if it is especially cold, or the rain is coming down in buckets, I would absolutely accept a ride from a sighted friend, and again, no reasonable person should doubt my capability as a blind person for doing so. My dad and I discussed these events on the drive home, and we both laughed about the ridiculousness of such attitudes. Little did I know back then that when I got a little older, I would fall into prideful attitudes myself.


In hindsight, I think much unnecessary emotional suffering could have been avoided had I not been so prideful. My boss is a kind and fair person. I am sure that had I possessed the humility to sit down with her months sooner and been more forthright about how much anxiety the job was causing me, and how it wasn’t feasible for a blind person, I might have started my current position much sooner. But I knew of blind people in far more demanding positions. I personally know blind teachers and social workers and have heard of blind people being successful in law and medicine. So I thought my inability to handle this job was due to a problem with me. I was a loser, a failure. When I was rejected for every state government job I applied for, it only re-enforced these feelings. It seemed as if God had given everyone talents and callings for their lives except me. Everyone in my family had experienced challenges in their jobs too, so the fact that I really wanted to give up and quit made me feel like even more of a loser because I couldn’t handle the realities of being an adult. But quitting and telling the boss I wanted to “pursue other opportunities” sounded better at the time than showing weakness by telling the boss I couldn’t handle my current position.


But now I realize that just like impatience, pride impedes rational thought. If I ever find myself in a similar situation again, I pray that I will remember this experience and show humility by not being afraid to express what I need. I also pray that anyone else who may stumble on this blog who is going through a similar situation will do the same. From bible studies I have done, I know there are verses in the bible warning against comparing oneself to others, and now I have a first-hand understanding and appreciation for these verses. Blindness is only one of many factors in someone’s identity, and the blind community is comprised of people with varying degrees of blindness. I am totally blind, but some people are considered legally blind but have some vision. This doesn’t mean they don’t have challenges compared to a fully sighted person, but even a little bit of vision goes a long way sometimes, as well as when someone lost their sight. For example, someone who loses their sight later in life has more difficulty learning braille. But these people often have an easier time grasping orientation and mobility skills like crossing streets and navigating sidewalks because they have seen, and therefore have a better conceptual understanding of what an intersection is than someone like me. There are also other factors having nothing to do with blindness such as personality, educational opportunities, genetics which my parents say has more to do with how directionally challenged I am than my blindness, or other medical issues and disabilities. All this is to say that Jesus is right in saying we shouldn’t compare ourselves to others because every person and situation is unique and where God may have limited me in some areas, I know he has gifted me in others. If we live our lives stuck in pride and seeking to prove ourselves in situations that aren’t appropriate for us, we may be missing out on the unique life God wants for us.


Once God had developed in me the wisdom to fully understand this, I also had an easier time accepting the fact that by switching to part-time employment, it would not be financially feasible for me to live on my own. I had dreamed of living on my own since college because as is the case with all young adults, my parents were starting to drive me crazy. But it would be a lie to say there wasn’t also an ulterior motive of wanting to prove to others in the blind community that I could figure things out on my own. Most of my life, I have felt judged by teachers of the visually impaired and other blind people because I wasn’t as proficient in orientation and mobility or daily living skills like cooking. I was comparing myself to others as I only recently became secure in myself enough to realize that my situation is unique. I am totally blind, have other medical issues and grew up in a suburban environment where I didn’t have as many opportunities to practice orientation and mobility because there is no bus service or access to sidewalks.


But if I had put the goal of living on my own above all else, I would have no choice but to forego work/life balance to pay for it. I would not have had the time, nor the space that I have living with my parents to host a bible study group on Monday nights which is now the highlight of the week for me and several other members going through difficult circumstances. It so happened that when I volunteered to host a group in September, I was told that the church had been looking for a house in my area because until I came along, there were no bible study groups in my particular neighborhood. If I had insisted on living on my own, I would be preparing my own dinner, which would have been a frozen dinner after a long day of work rather than the wonderful casseroles my mom puts in the oven before leaving to pick me up, and I would have been eating this dinner alone rather than the conversation and laughter I enjoy with my parents every night. If I had insisted on living on my own, I would not be back to singing in choir again because in addition to being exhausted from full-time work, it would have been a tremendous expense to get transportation from my apartment to the site where the choir rehearses.


In college I felt like a failure when due to many circumstances, I could not handle living in the dorm and became a commuter student. But then, I would meet fully sighted students who told me they lived with their parents as this worked better for them too, and saved them a lot of money. When I recently confided feeling like a failure to one of my friends in bible study because I still lived with my parents, she said she still lives with her parents and has felt the same way too. From there we had a beautiful conversation about the importance of doing what was right for our unique circumstances despite contrary social pressure, after which I think we both felt less alone. A lot of my co-workers tell me I am lucky as they wish they could still live with their parents. I am still a work in progress, but I think I am gradually developing the maturity and confidence of these amazing friends from college and bible study as I realize that by living a humble life accepting my unique circumstances rather than trying to fight them and prove myself in situations that aren’t appropriate for me, I am in a better position to use the many gifts God has given me, and embrace a far more rewarding life than I would have had if I had given into pride.

Lessons Learned: Patience

When I was in college and my mom and I started attending a new nondenominational church, which I talked about in this post, I noticed that the sermons regularly emphasized how God uses our experiences to shape us and grow us. But until recently, I hadn’t fully appreciated how this applied to my own life. Looking back on the events of the last five years however, I am now realizing how God has used these experiences to develop in me two important virtues, also called fruits of the spirit, that had been sorely lacking in my personality: patience and humility. In this post, I will talk about patience, and in the next, I will talk about humility.


Patience was required from 2012 to 2015 in which time I graduated with my Bachelor’s degree in Journalism, was unsuccessful in landing a permanent job so resigned myself to the fact that I would have to go back to school and study something else. When I earned my Paralegal certificate and had a job just three months later, I was glowing with joy. At last I felt like there was a purpose for my life, and a reason to get up in the morning. And of course, I was also looking forward to getting a paycheck! My mom even commented to me a couple weeks after I started this job that she noticed I held my head a little higher and had a happy glow about me.


For a few months, there was a honeymoon phase. Right away I knew there would be some accessibility challenges, but I think at the time, I was just so delighted to have a permanent job that I didn’t think about the logistical problems these accessibility challenges would cause later. In addition, while my co-workers were, and still are extremely kind and helpful, I felt guilty asking them for help, especially after some restructuring took place which meant case managers had additional responsibilities. Now for example, case managers file appeals over the phone with their clients, and helping case managers with appeals is my exclusive job, but when I started, appeals and hearing requests were filed in a different department, and all case managers had to do was schedule the appointments.


On top of that, I found out a few months into the job that there were things I was supposed to follow up on that I wasn’t aware needed to be done. The other case managers had task management software to help them keep track of these things, but it wasn’t fully accessible with my screen reader. I tried to improvise my own organization system, and the other case managers and my boss were kind and would remind me of things, but even so, things would be missed, and it wasn’t long before anxiety about this took over my life. In January 2016 after a particularly overwhelming staff meeting where I realized there were even more responsibilities of my position that I had overlooked, I made the decision that this job was not blind-friendly and decided to start looking for something different. I decided a job with the state of Wisconsin would be best because benefits would be great, and I remembered from when I did an internship with the governor’s office that the state is on top of their game when it comes to providing accessibility.


Most job postings were discouraging as they required someone with a lot of experience, but there were several with no such requirements that seemed promising. One job especially, a job with the title Equal Rights Officer sounded really exciting. I was invited to Madison for three interviews, including one for the Equal Rights Officer position, but things never went further. To add insult to injury, I got the rejection letter for the position I wanted most, the Equal Rights Officer position, on Memorial Day weekend, which is usually my favorite weekend of the whole year, but Memorial Day weekend that year was spent crying.


When Thanksgiving came and I still had not found anything, I really felt as though God had abandoned me. I still prayed, and tried to think positive thoughts and thank God for the blessings I did have, but it was getting more and more difficult. I seriously considered just quitting, but my family urged me to think long and hard before doing that because that doesn’t look good when interviewing for future jobs. I was also overcome with guilt about quitting after all the effort from the state and the job developer to help me land this job.


Then, just before Christmas, my boss approached me and proposed changing my position so that instead of having a caseload, I would file appeals for other case managers. I agreed to give this a try, but in my mind, I was dreading the prospect of doing appeals all day because although the Social Security website where appeals are filed is fully accessible, the form was so involved that after just one appeal, my brain would be fried and sometimes I would have a headache. But after just one week in this new position, it occurred to me that this change in position was the answer to my prayers! My anxiety disappeared as I knew exactly what I was supposed to do when I clocked in each morning. I had an accessible spreadsheet with my appointment schedule each day on Google Docs, and the more appeals I did, the less intimidating they became. The form is overwhelming when you are new to it, but like many things, it becomes second-nature with practice, and now I could fill it out in my sleep. I have also figured out ways to be more efficient with this form, so much so that when I started, I was only comfortable scheduling four appeals per day, but now I can easily do six appeals a day.


Then in February, my prayer for work-life balance was also answered when it occurred to me to ask about working part-time. Since these changes took place, I have enjoyed a wonderful sense of peace and contentment in my life that I may have missed out on if I had fully given into my impatience and quit this job. By forcing me to practice patience, God also showed me that what I thought I wanted wasn’t really what I wanted. When you are gripped by impatience, you don’t think rationally. I believe this is why people do dangerous things like drive too fast in snow or run red lights. They become so consumed by the short-term goal of getting somewhere on time that they don’t stop to consider the devastating long-term consequences their decision could have. In my case, I just wanted my current anxiety to end so bad that I was wooed by job titles that sounded different and exciting like Equal Rights Officer, never stopping to think about the fact that if I got that position, I may have merely traded one set of anxieties for another.


Another byproduct of being inpatient and not thinking rationally, I now realize is that I had inaccurately ranked my priorities. When it occurred to me a few months into the job that except for major holidays, I, like most full-time adults had not really had a week day to myself since I started working, I remember thinking that if I just had that perfect job that I loved and that fit me perfectly, the lack of work-life balance would no longer matter. But the indescribable joy I felt that weekend after asking to be part-time and the peace and contentment I have felt ever since has shown me that I needed this balance more than I realized when in the grip of impatience.


Through this experience, I truly appreciate now the significance of that saying, “Patience is bitter but its fruit is sweet.” We wouldn’t truly appreciate the sweetness of the fruit if it was just handed to us without practicing patience. My prayer is that this experience might help someone who may stumble on this blog who may be struggling to be patient and trust God. I also pray that if I face hardship in the future that causes impatience to well up in me, that I will think back on this season of life and remember the rewarding outcome I ultimately enjoyed by not making irrational decisions out of impatience, so that hopefully I will trust God even more than before, and practice patience again.