I walked the halls of the rehabilitation facility, trying to put my finger on the emotions that flooded over me. The smells of sterility and medicine, the bed alarms and squeaking of the nurse's carts, and the open doors showcasing the elderly as they stared blankly at their t.v. screens combined to create a feeling of sadness and a slight pit in my stomach. I weaved in and out of the different hallways, walking slowly and attempting to focus equally on my outward senses and my inward feelings.
I stopped in front of room 208. The nameplate said Roderick. I knew nothing about her other than that she looked to be about 80 years old. She sat quietly in her chair, probably seeking much needed rest between therapy sessions. Or maybe she was waiting for a nurse to come and wheel her to the dining hall for lunch. I wondered what type of pie they would be serving today. That's the best thing about lunch. Though the differences between us were huge and obvious, I could see myself in her posture, her eyes, and the expression on her face. I felt connected to her. I wanted to go in and tell her a story, a story that had happened in that room.
*************************************************************************************
I watched my husband and babies walk out of my room to head home for the night. I already felt guilty for the relief that washed over me with their departure. It had been a nightmare of a day, and ending it with 4 small children cooped up in a 10x10 room and crawling all over my hypersensitive, aching body as I sat in my wheelchair was a recipe for disaster.
I was struggling to acclimate to my new home at Health South Rehabilitation facility. When I arrived on a gurney at 9:00 p.m. a couple of nights before, the on-duty nurse's assistant gave me the run down in a far too cheerful and upbeat voice. I would have an ultrasound each time I went to the bathroom to ensure I was emptying my bladder completely. Standard procedure. An alarm was set on my bed any time I was in it, day or night. If I wanted to get out without triggering a panic, I had to ring for help. Standard procedure. I would attend 6 sessions of physical and occupational therapy everyday. Standard procedure. As she attached a neon bracelet that said "fall risk" to my wrist, she told me about my schedule for the next day. Dawn, my occupational therapist, and her student Kelly would be by in the morning to observe and grade me on my showering and dressing abilities. Standard procedure. Oh good, I thought. That will be a nice opportunity for me to get to know them. Though she didn't say it, I also learned that she or the nurse would come in approximately every 30 minutes throughout each night to administer drugs, assess vitals, take out the trash, or offer me string cheese. Standard procedure. For the love!
After my family left, I only had the energy to stare at the wall for quite some time. I had pushed myself very hard during the many hours of therapy that day. I figured that was the only way I was going to get out of this place. It was amazing how much energy it required to lift 1 pound weights and pick small objects out of a mixing bowl filled with rice. On top of that, I had had 9 hours of amazing, self-less visitors that day. I was grateful to them from the bottom of my heart, but the energy required to be cheerful and converse for that long had brought me to the edge. I eventually summoned the energy to call for my nurse, but I couldn't do much more. She had to help me to the bathroom, into my pajamas, and into my bed for the night. She filled my requests for an ice pack, a yogurt, more drugs, .....and a suppository. I decided to forgive her for coming in to my room so much each night. Nurses are angels in disguise.
Once in bed, I took stock of myself and my situation. Though I was more physically tired than I had ever been in my entire life, that was just the beginning. I had looked forward to my surgery as the welcome end to a year of weakness, numbness, and excruciating neck pain. But this I had not bargained for. No one had told me. I couldn't turn my head even a few degrees in any direction. My neck and shoulders hurt so badly that I was sure the neurosurgeon had left a surgical instrument behind when he sewed me up. The entire left side of my body was just off. I have no better way to explain it. It seemed that during the surgery, they took my old left side and replaced it with something that belonged to someone far less fortunate than myself. It didn't work, and I couldn't feel it. Well, I couldn't feel it except for the intense burning that constantly plagued my hand and foot. Tasks that were once routine now took a monumental effort, or were completely impossible. This was hard. So very, very, very hard.
Each day when Ryan visited, he would ask sweetly and hopefully "So, is it feeling any better? Is your function coming back? Do you feel like you're getting back to normal?" And each day when I answered him, I felt like a small child who is sure she is falling short of her parents expectations. "No. It still feels the same. There still isn't much I can do with that side." I felt like a walking disappointment. I knew that our goal was to get me out of here, to get me healthy, and back to a functioning lifestyle. I knew that my husband was in the bishopric, working a full-time job, in school, struggling to keep a household running, and caring for 4 children while I sat and sorted beads from rice and tried to learn to put my bra on all by myself. I knew my children were being farmed out to various saints every single day. They filled my children's every need while I sat and watched HGTV at night and ate an unholy amount of peanut M&Ms. I could only come to one conclusion.
I was useless.
I felt the solid lump in my throat as I swallowed the truth I had been considering for several days, but wasn't able to digest until they took me off the morphine drip and anti-depressants. The truth hurt, like a punch to the gut. I had one job in this world, to take care of my family, and I couldn't do it. Not only couldn't I do it, but no one had any idea how many weeks, months, or maybe even years it would be until I could. My entire identity was wrapped up in this job, and at its loss I began to mourn like I would the death of a loved one. Sobs racked my body as I made my bed of mourning and pulled the blanket of self-pity over me. I paid no mind to the cracked door and the nurses outside who I was sure were audience to my tantrum.
I felt sorry for me, but mostly I felt sorry for my husband. I felt like he had been strapped to a bag of sand that he was going to have to carry around for a long time. I knew he was getting tired. I could see it in his eyes, and I knew it was only going to get worse. I wondered how much he regretted marrying me. This pathetic, messy, incapable baby was not the woman he had married. Was he sorry that I had pulled the bait and switch on him? I picked up my phone and fired off a hasty text:
I love you. I'm sorry. I'm sorry I can't be there for you when you need me to be. I'm sorry this is a months long process, and not days. I'm sorry that I might never be the same. I' sorry you have such a heavy load to bear and I can't do anything about it.
I was crying so hard that I couldn't breathe when my phone rang 30 seconds later. He told me I was beautiful. He told me that I was the only woman for him. He told me I was enough. Through his own tears, he told me I was being stupid. He told me that my role right now was to sort beads and that I was killing it. He told me that sometimes 100% effort looks different from a spouse in a marriage, but that doesn't mean they aren't pulling all the weight they are capable of, and that that is all that matters. I went to bed wanting to believe him.
I woke up in the morning to sun streaming through my window and onto my bedspread. I sat still for awhile, thinking about the night before. I realized how easy it was to feel sorry for myself, and that I probably deserved to feel sorry for myself, given my circumstances. I thought about other trials I had endured in my life, some that I was sure would take me under at the time. I had learned to endure mental and emotional struggling like a champ. I came away stronger, and even proud of my accomplishments. As time passed, the struggle sifted away, and all that remained were the lessons I had learned. It was like panning for gold in sand. And the gold I always came away with was priceless. I had been taught how to deal with the mental and emotional, now was the season to learn how to overcome the physical and to develop humility.
I made a call that morning to my good friend and asked her to make several signs for me, all saying the same thing: NOW IS NOT FOREVER. She hung them up all over my room where I would see them at all times. Everyone who came in my room commented on them, with varying levels of insight and sarcasm. No one truly understood what those words meant for me. They were a life preserver, thrown to a soul who was sure she would drown. A thin rope connection between her and life. They said simply, and unassumingly "I know you're going through hell right now, but hang on, because it won't last forever. When you get to the end, you'll look back with gratitude for what you learned".
Sometimes the lesson isn't in the overcoming, or the triumph. It's in the late night tantrum, or the lack of progress. It doesn't come at the end of a long road or lesson, but right smack in the middle when it's ugly and painful and perspective is the hardest. It doesn't come from choosing the higher road, but choosing the wrong road and learning from the bumps along the way. It comes from your only achievement being that you have acknowledged that you are a mess. This space can be holy, too.
**********************************************************************************
As all of this went through my head during the short second I stared into room 208 at Ms. Roderick, I wanted to step in and tell her the power of this room. But chances were, she already knew.
Friday, October 28, 2016
Friday, June 17, 2016
Preparing for Battle
"write hard and clear about what hurts"
-Ernest Hemingway
A few months ago, I was out for a run by myself. Despite the oldies rock n' roll beating through my ear buds, I was still able to do a good deal of thinking. I think about a lot of things while I run, most of it passing thoughts. But, on this particular occasion, I had a single thought that stuck with me till today. I reflected on how truly grateful I was for how fantastic my life was going at the time. I felt completely fulfilled in every aspect of my life. Though it kept me VERY busy, I loved my church calling as stake girls camp director. I had amazing friends that I knew I could count on for anything. I had children who were happy and healthy and brought me so much joy. I had a home that I loved and a ward that was friendly and inclusive. My marital relationship was stronger than it had ever been, and we were learning very important things together that blessed our family. In fact, if it wasn't for the pesky neck pain I had been experiencing for awhile, I would think I had died and gone to heaven.
The neck pain.
It always sat in the back of my thoughts, trying to peck its way to the forefront. I woke one day in July of 2015 with a bad crick in my neck. I didn't think anything of it, assuming I had slept on it wrong. A few days later, I awoke with the same pain. There were several intermittent days in the following month that I experienced the now familiar pain, but it always faded after I got up from my bed. I decided that I needed a new pillow, a new mattress, or possibly a new sleeping position. I experimented with all of those things, with little luck.
A few weeks later, I began to notice that my fingers on both hands were feeling very tingly, and often even numb. After a couple of weeks of this, I mentioned it to Ryan. He insisted that I see a doctor. I went to my primary care physician, who ordered blood tests and a nerve test on my hands and arms. Both came back completely negative. I figured I probably had mild carpal tunnel due to an increase in typing. I never connected the pain in my neck with the numbness in my fingers.
That fall and winter, the pain increased and spread. It seared through my muscles like a hot iron and was in my head, my neck, my back and shoulders, and down my right arm. It was no longer reserved for the night, though that was the most hellish time, and began to affect my functionality on a daily basis. The numbness traveled from my fingers into my hands and arms, and began to make its way down my torso. If I was being honest with myself, I was scared out of my mind. I was losing strength in my extremities. I could no longer pick up my 3 year old. My fine motor dexterity was going downhill fast. I could no longer type with any accuracy. This affected my very favorite thing to do, write and blog. So I stopped. I struggled to button up my own sweater, my handwriting reverted back to when I was 8 years old, and I was constantly dropping things.
I tried to figure out what was wrong. I really did. I visited multiple chiropractors, primary care doctors, did physical therapy, and got an x-ray. I felt like each new person I saw was just guessing at my problem, or putting a band-aid on it and showing me on my merry way. Eventually, I went on prescription pain relievers, something I had tried to avoid, but which ultimately saved me from going insane. By May, my pain was controlled with medication, but the weakness and numbness increased all the time. I knew I needed to do something different. So, I changed up my family doctor. I opted to got with a physician assistant in my ward. I needed someone who felt some accountability to me. Someone who would see me as a person, and not just something to be swept under a rug.
He ordered an MRI for me immediately. I could have kissed him. By this point, I had self-diagnosed my problems as a horrible herniated disk. I felt like I needed an MRI to show this so I could get it taken care of. My MRI was scheduled for Memorial Day, May 30th. I skipped into that office full of hope and happiness on a day that usually carries heavy emotional stress. I was on cloud nine, finally feeling like I was going to get somewhere. This was going to be the beginning of the end of my problems. The procedure went off without a hitch, and I moved on to my BBQ for the day. My greatest fear was that nothing would show up on the images, and that I would be labeled as crazy.
The next day was a Tuesday. I was going to girls camp the next day, something that was occupying every brain cell that I had. I got a call from the P.A.'s office late in the afternoon. She told me that they had received the results from my MRI and that they were going to need me to come in for a follow-up appointment the next day. I told her I was going out of town and wouldn't be available. She asked me what time I was heading out of town. Could I come in before? My stomach did a little flippity flop. I told her that I was going to be tied up from 6:15 a.m. She asked when I would be back. When I told her Saturday, she proceeded to make me an appointment for 7:30 a.m. on Monday morning. I was glad that they had found something, but I couldn't shake the feeling that her urgency gave me.
For the next four days, I was so busy that I could hardly think. I had to coordinate 250 people, give talks, teach classes, go on hikes, counsel, troubleshoot, play games, dance, learn, and laugh until I thought I would explode. It was a whirlwind gift from God that didn't allow me to think of myself for one minute. I felt true happiness and joy. On Friday night, I had the chance to sit for a minute with my journal and think. I wrote down the things that came to my mind, and what began to flow sent electricity down my spine. It wasn't in my voice, but another that I had come to rely on with even greater assurance. It told me about how much my Savior loved me. It told me about how strong I was. And then it told me that things were about to get really, really hard and that I needed to remember the feelings of love I had felt on that night. I was told that I needed to trust in the plan that had been laid out for me from the Beginning, and to remember that all things are consecrated for my good. And then I knew. I didn't KNOW, but I KNEW. I stuffed that feeling deep down inside of me and tried to keep it from welling up in my throat over and over again as I finished off my duties for girls camp.
The rest of that weekend was a blur. A new bishop was put in place in our ward, and Ryan was called to be in the bishopric. I tried to focus on the logistics, excitement, and increased load that placed on our family, but through all of that, I couldn't shake the feelings surrounding the knowledge I now had. I became withdrawn and sick to my stomach. I tried to sleep that night, but only managed a few hours as my mind raced a million miles an hour. Ryan planned to go in to work late so that I could go to my early doctors appointment. I had no appetite and left the house without eating. I arrived at the office 15 minutes before my appointment, and it was still locked up. I didn't like that at all. I walked to the gas station next door to buy myself a juice. My hands were shaking and I could feel my face contorting against my will. As I walked back to the medical complex, it came as clear as a bell. "I AM IN CONTROL. TRUST ME". Over and over again.
When I finally sat down with the physician assistant, the words he said brought no surprise.
"We found a mass on your MRI".
My immediate thought was that there was nothing in this world I wanted to do LESS than call my husband and tell him that. I broke down shaking and sobbing, but there was no fear for myself. Only for my family. A family that understands loss and uncertainty all to well. I had to gather up every ounce of strength I possessed to call him. And then we clung together for the rest of the day, shutting out the outside world and relying on each other and our understanding of God's plan to keep us from going to pieces.
We spent a good week and a half in no man's land. We waited impatiently for our appointment with a neurosurgeon to give us the details of what we faced. I didn't like it one bit. I am a fighter, by nature. But you cannot fight an enemy that you do not know. I struggled to eat, sleep, and accomplish anything of any value. It was pure torture, except for the part where we got back to what really matters. We sang to "The Gambler" on high volume in our van, eating chocolate chip cookies and laughing. We went to the park with our kids and let them feed the ducks for hours. I held my baby for an extra long time each night before I put him to bed. Our kisses were more sincere, less hurried. I cuddled in bed with my kids in the morning, stroking their hair and listening to their chatter. It was heaven.
We met with the neurosurgeon on Wednesday. I heard him say, "You have a tumor in your actual spinal cord, and its a big one. What took you so long to get in here? Its nothing short of a miracle that you are not completely incapacitated". We looked at images and talked statistics and procedures and risks. He performed tests on me. I learned a new word. Ependymoma. It is a rare cancerous tumor that shows up in the brain or spinal cord. Mine looks like a hot dog in a hose and has completely filled up my spinal cord. I learned that usually it is low grade and non-aggressive, and that, barring something unusual, they shouldn't have to follow surgery up with radiation or chemotherapy. I learned that the survival rate is high, but the risk comes from the surgery itself. They will open up the back of my neck, take off my vertebrae, and cut into my spinal cord to remove the tumor. This scares me. A lot. Then they will bolt and screw my spine back together and call it good. I learned that the odds are fairly small of sustained neurological damage due to surgery, but not small enough for me. I learned that I will probably never live a life free of numbness, pain, and weakness again. But I will be alive. I learned that past experiences that have required me to dig deep down inside of myself just to make it through the day have sufficiently prepared me for another test.
Knowledge is power.
I am ready.
He ordered an MRI for me immediately. I could have kissed him. By this point, I had self-diagnosed my problems as a horrible herniated disk. I felt like I needed an MRI to show this so I could get it taken care of. My MRI was scheduled for Memorial Day, May 30th. I skipped into that office full of hope and happiness on a day that usually carries heavy emotional stress. I was on cloud nine, finally feeling like I was going to get somewhere. This was going to be the beginning of the end of my problems. The procedure went off without a hitch, and I moved on to my BBQ for the day. My greatest fear was that nothing would show up on the images, and that I would be labeled as crazy.
The next day was a Tuesday. I was going to girls camp the next day, something that was occupying every brain cell that I had. I got a call from the P.A.'s office late in the afternoon. She told me that they had received the results from my MRI and that they were going to need me to come in for a follow-up appointment the next day. I told her I was going out of town and wouldn't be available. She asked me what time I was heading out of town. Could I come in before? My stomach did a little flippity flop. I told her that I was going to be tied up from 6:15 a.m. She asked when I would be back. When I told her Saturday, she proceeded to make me an appointment for 7:30 a.m. on Monday morning. I was glad that they had found something, but I couldn't shake the feeling that her urgency gave me.
For the next four days, I was so busy that I could hardly think. I had to coordinate 250 people, give talks, teach classes, go on hikes, counsel, troubleshoot, play games, dance, learn, and laugh until I thought I would explode. It was a whirlwind gift from God that didn't allow me to think of myself for one minute. I felt true happiness and joy. On Friday night, I had the chance to sit for a minute with my journal and think. I wrote down the things that came to my mind, and what began to flow sent electricity down my spine. It wasn't in my voice, but another that I had come to rely on with even greater assurance. It told me about how much my Savior loved me. It told me about how strong I was. And then it told me that things were about to get really, really hard and that I needed to remember the feelings of love I had felt on that night. I was told that I needed to trust in the plan that had been laid out for me from the Beginning, and to remember that all things are consecrated for my good. And then I knew. I didn't KNOW, but I KNEW. I stuffed that feeling deep down inside of me and tried to keep it from welling up in my throat over and over again as I finished off my duties for girls camp.
The rest of that weekend was a blur. A new bishop was put in place in our ward, and Ryan was called to be in the bishopric. I tried to focus on the logistics, excitement, and increased load that placed on our family, but through all of that, I couldn't shake the feelings surrounding the knowledge I now had. I became withdrawn and sick to my stomach. I tried to sleep that night, but only managed a few hours as my mind raced a million miles an hour. Ryan planned to go in to work late so that I could go to my early doctors appointment. I had no appetite and left the house without eating. I arrived at the office 15 minutes before my appointment, and it was still locked up. I didn't like that at all. I walked to the gas station next door to buy myself a juice. My hands were shaking and I could feel my face contorting against my will. As I walked back to the medical complex, it came as clear as a bell. "I AM IN CONTROL. TRUST ME". Over and over again.
When I finally sat down with the physician assistant, the words he said brought no surprise.
"We found a mass on your MRI".
My immediate thought was that there was nothing in this world I wanted to do LESS than call my husband and tell him that. I broke down shaking and sobbing, but there was no fear for myself. Only for my family. A family that understands loss and uncertainty all to well. I had to gather up every ounce of strength I possessed to call him. And then we clung together for the rest of the day, shutting out the outside world and relying on each other and our understanding of God's plan to keep us from going to pieces.
We spent a good week and a half in no man's land. We waited impatiently for our appointment with a neurosurgeon to give us the details of what we faced. I didn't like it one bit. I am a fighter, by nature. But you cannot fight an enemy that you do not know. I struggled to eat, sleep, and accomplish anything of any value. It was pure torture, except for the part where we got back to what really matters. We sang to "The Gambler" on high volume in our van, eating chocolate chip cookies and laughing. We went to the park with our kids and let them feed the ducks for hours. I held my baby for an extra long time each night before I put him to bed. Our kisses were more sincere, less hurried. I cuddled in bed with my kids in the morning, stroking their hair and listening to their chatter. It was heaven.
We met with the neurosurgeon on Wednesday. I heard him say, "You have a tumor in your actual spinal cord, and its a big one. What took you so long to get in here? Its nothing short of a miracle that you are not completely incapacitated". We looked at images and talked statistics and procedures and risks. He performed tests on me. I learned a new word. Ependymoma. It is a rare cancerous tumor that shows up in the brain or spinal cord. Mine looks like a hot dog in a hose and has completely filled up my spinal cord. I learned that usually it is low grade and non-aggressive, and that, barring something unusual, they shouldn't have to follow surgery up with radiation or chemotherapy. I learned that the survival rate is high, but the risk comes from the surgery itself. They will open up the back of my neck, take off my vertebrae, and cut into my spinal cord to remove the tumor. This scares me. A lot. Then they will bolt and screw my spine back together and call it good. I learned that the odds are fairly small of sustained neurological damage due to surgery, but not small enough for me. I learned that I will probably never live a life free of numbness, pain, and weakness again. But I will be alive. I learned that past experiences that have required me to dig deep down inside of myself just to make it through the day have sufficiently prepared me for another test.
Knowledge is power.
I am ready.
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