Dear World,
I have not handled the last few months very well. After my hospitalization and the frightening diagnosis, I tried to take everything into my own hands. I followed doctor’s instructions to the ‘tee’ and tried so hard not to be angry or depressed or afraid.
When talking to people, I’ve shared about my triumphs over the weakness and pain, rarely opening the window enough for anyone to see a glimpse of who I’ve really become. I’ve let people know that it’s been hard, but only my parents saw me at my physical worst, and only God has seen the truth.
I am so angry that the last few months have been stolen from me. Even as I type that it hurts to write it. I’ve been incredibly judgmental of the people on my message board who complain about everything and everyone in their lives. I’ve chosen to act as Pollyanna, with the desperate hope that if I pretended I was okay long enough, it would be true.
But it’s been 5 months. The uncharacteristic anger I felt when my car was smashed showed me that I haven’t been as peaceful as I’ve led anyone, including myself to believe. The hours I spent sobbing apparently weren’t enough---there’s emotion in there that I’ve done a very good job of keeping under.
My theology tells me that I can get mad at God, but not too mad, because I know logically that he’s not at fault. Yes, he’ll still love me if I rail at him, but…
And I stop there—something has been holding me back from truly pouring out my feelings to God, and I am afraid of knowing what it is.
God, I’ve been telling everyone that I know you still love me---wissen know, not kennen I guess. I’m so very hurt and angry that my life isn’t going the way I’d like it to. I’m disappointed that I haven’t been able to do things I’ve planned, and more disappointed that I don’t want to do many things. I’m tired of being tired, but I’m afraid that if I go back into my regular life I’ll get sick again. I’m afraid that you are punishing me, or that this is some sort of sick exercise in helping me learn. I say it’s a sick exercise because I don’t think it’s fair that I should have to go through this when no one else I know does. I’m afraid that it’s a punishment because I know how awful I’ve been---I know that I deserve worse. I’m afraid that all of the spirtual-ish things I’ve been saying aren’t true---that I turned my back on you and doubted your love and have just been lying for 5 months. I need your reassurance that you still think I’m beautiful, even now, even when I’ve been so foolish
I still don’t know why you gave me this particular journey. I’m so good at spiritual talk with mom—but I really have no fucking clue. And it pisses me off. I want to know. I want to understand it so I can seek to control it. But instead you’ve made this something that I just don’t get, can’t get, can’t ever control.
I need you to remind me that you’re trustworthy. The covenant and the promise. I don’t know what I’ve lost hold of in the last couple of weeks, but it’s something. Ever since my car, maybe even before that, I’ve just been so angry, so afraid, so sure that it’s just going to get worse. And it has. And I’ve dealt with it. But I’m tired of dealing, of coping, of pretending that I’m okay. I’m not okay. This situation is not okay. I’m tired of people looking up to me and being proud of me because you and I both know that if they were in my head, they wouldn’t feel the same way. But I don’t want to lose that, because I feel like it somehow justifies what’s going on in my life, somehow makes this crappy few months worthwhile in the grand scheme of things.
I refuse to fall into nihilism. I know that there’s something more out there. I know that I was meant to seek meaning, and I know that at some point, I’ve found it in you. But I also refuse skepticism—saying that your way is only good when life is rosy. I want to know, but I’m afraid to know. You are indeed God—Almighty, Invincible, Omnipotent, Omniscient, Omnipresent. Remind me of that, would you?
Sunday, July 20, 2008
Saturday, July 5, 2008
On Being a Victim:
When I was diagnosed with Minimal Change Disease, I searched everywhere to find a reason why it was me. It’s one of those idiopathic diseases---meaning they haven’t quite figured out what makes it tick or why someone would get it. I wanted to have someone to blame—even if it was myself for working too hard or not sleeping enough. I desperately wanted to find some evidence that a vitamin or medicine I was taking had caused it. I read medical journals and the stories of other people like me. And I had nothing to blame.
My pain, weight gain, hair loss, emotional roller coaster and other side effects can all be blamed on Prednisone. Perfect. A culprit to take the blame.
When I walked out of my sister’s house to find my car smashed and about 50 feet away from where I parked it, I had someone to blame. The stupid 17 year old girl driving a mini who was going too fast and looked down because she thought her dog was choking. It was great. I had someone to blame.
When I discovered poison oak on my arm, I could trace it back to my dog probably rolling around in it and then transferring it to my highly allergic skin. Someone to blame.
For the past 5 months I’ve done a fairly good job of dealing with everything. Sure, I’ve had long conversations with God asking for help to find a reason why, and I’ve been lonely and depressed, but all in all, I’ve coped. But through it all, I was terrified that I wasn’t dealing with it well, that the fear and anger would eventually explode if I couldn’t find someone to blame.
I couldn’t blame God for my disease—I know that he is good and doesn’t cause pain, so I didn’t buy it when people tried to help me justify my situation by saying God had given it to me to help me grow. I didn’t buy it. I accepted the idea that disease is a part of the brokenness of the world, and worked on thanking God for the good hours, gritting my teeth through the pain and surviving.
But all the other things—the drugs, the car, the poison oak---I had a culprit—I finally had something to be angry at. I let myself revel in that anger for a few days—finally aware that my emotions might not be purely rational.
That girl who hit my car? She’s a 17 year old kid---just like my Young Life girls. Suddenly, I knew that anger at her or her insurance wouldn’t make me feel better.
The prednisone? It’s keeping the poison oak from spreading and making my entire body puffy and itchy. I’ve hated it so much, but it’s still helping me,
The poison oak? Hard to have a good attitude here—I mean it’s a stupid itchy plant that, as far as I know, does nothing good for anyone or anything. But as I mentioned, it’s not spreading nearly as fast as it has in the past.
It’s hard to feel like a victim when you’re thankful. It’s even harder once you learn how to forgive. Sure, I wish my brand new car was still as flawless as it had been before the accident—but I forgive that girl---she’s just like I was and my girls are now, a teen driver who makes mistakes. Sure, I wish Prednisone had no side effects, but I’m glad it’s effective. Sure, I wish I hadn’t gotten poison oak, but considering how bad it’s been in the past, I’m glad it’s under control.
And then I come full circle. I have no one to blame for this disease. The people on my message board lash out and are so angry about the months and years this disease has stolen from them. They go from doctor to doctor, hoping that one of them will be able to give them something other than a faceless disease to blame. I don’t want to be like that. I don’t want to be barely containing my anger all the time. I want to live my life leaning on the one who has seen my every thought and emotion in the past 5 months and still thinks I’m beautiful.
My pain, weight gain, hair loss, emotional roller coaster and other side effects can all be blamed on Prednisone. Perfect. A culprit to take the blame.
When I walked out of my sister’s house to find my car smashed and about 50 feet away from where I parked it, I had someone to blame. The stupid 17 year old girl driving a mini who was going too fast and looked down because she thought her dog was choking. It was great. I had someone to blame.
When I discovered poison oak on my arm, I could trace it back to my dog probably rolling around in it and then transferring it to my highly allergic skin. Someone to blame.
For the past 5 months I’ve done a fairly good job of dealing with everything. Sure, I’ve had long conversations with God asking for help to find a reason why, and I’ve been lonely and depressed, but all in all, I’ve coped. But through it all, I was terrified that I wasn’t dealing with it well, that the fear and anger would eventually explode if I couldn’t find someone to blame.
I couldn’t blame God for my disease—I know that he is good and doesn’t cause pain, so I didn’t buy it when people tried to help me justify my situation by saying God had given it to me to help me grow. I didn’t buy it. I accepted the idea that disease is a part of the brokenness of the world, and worked on thanking God for the good hours, gritting my teeth through the pain and surviving.
But all the other things—the drugs, the car, the poison oak---I had a culprit—I finally had something to be angry at. I let myself revel in that anger for a few days—finally aware that my emotions might not be purely rational.
That girl who hit my car? She’s a 17 year old kid---just like my Young Life girls. Suddenly, I knew that anger at her or her insurance wouldn’t make me feel better.
The prednisone? It’s keeping the poison oak from spreading and making my entire body puffy and itchy. I’ve hated it so much, but it’s still helping me,
The poison oak? Hard to have a good attitude here—I mean it’s a stupid itchy plant that, as far as I know, does nothing good for anyone or anything. But as I mentioned, it’s not spreading nearly as fast as it has in the past.
It’s hard to feel like a victim when you’re thankful. It’s even harder once you learn how to forgive. Sure, I wish my brand new car was still as flawless as it had been before the accident—but I forgive that girl---she’s just like I was and my girls are now, a teen driver who makes mistakes. Sure, I wish Prednisone had no side effects, but I’m glad it’s effective. Sure, I wish I hadn’t gotten poison oak, but considering how bad it’s been in the past, I’m glad it’s under control.
And then I come full circle. I have no one to blame for this disease. The people on my message board lash out and are so angry about the months and years this disease has stolen from them. They go from doctor to doctor, hoping that one of them will be able to give them something other than a faceless disease to blame. I don’t want to be like that. I don’t want to be barely containing my anger all the time. I want to live my life leaning on the one who has seen my every thought and emotion in the past 5 months and still thinks I’m beautiful.
Thursday, July 3, 2008
Tears in a Bottle
I’ve never understood why Psalm 56:8 was in the Bible. The idea of God keeping all of my tears in a bottle never seemed all that exciting to me. It’s one of those poetic things that never really sank in---much like the idea that God can number the hairs on my head. I can’t even number the hairs I clean off my brush each day, but that’s besides the point. The point is I’ve cried a lot in the last 5 months, and I think I’m beginning to see why God views our tears as so precious. It’s easier for me to write this in third person, so bear with me.
She couldn’t see the screen anymore. It was late and the tiny font on her iPhone was hard to decipher. But she knew that it was bad. Even though she couldn’t understand all the medical mumbo-jumbo, every site that included the words “nephrotic syndrome” and “acute tubular necrosis” also included very scary predictors of what had happened to other people. It hadn’t sunk in that those words now described her, but the beeping of her monitors, the buzzing sounds of a hospital and the shooting pains coursing through her body now that the last shot of morphine had worn off were a reminder that this was serious. So she cried, tears of pure fear.
She buried her head in her hands a week later, reacting to the shock of her reflection. Her face and eyes were so swollen she looked like she had Downs Syndrome. There was so much water in her skin, everything hurt, everything was swollen. It didn’t seem like the medications were helping, v As she rocked back and forth, crying that she didn’t like who she was anymore, her mother cried too, tentatively rubbing the girl’s back, afraid to say that everything would be okay. They both knew that this, whatever it was, was hard. So they cried, because there didn’t seem to be anything else to do.
She tried to understand. People had visited, sent flowers, called, texted and wrote emails for the first month. Slowly the outpouring of love from friends and colleagues dwindled to a trickle. She tried to understand that other people had lives to live, things to do and jobs to take care of. She tried to understand without jealousy, without desperately wishing that she could be out of the wheelchair when she left the house, without desperately wishing that she felt good enough to leave the house. She was thankful for her family and the moments when people did contact her, but she didn’t really understand. So she cried.
She sat against the wall in her closet, long after diagnosis. She had collapsed after staying in the hot tub too long, pressing her face on the cool wood floor and refusing help to make it up the stairs. With each step, she faced a new demon, crawling at a snail’s pace, convinced that if she could just make it up the stairs, she’d be okay. Sitting on the floor, she knew that she wasn’t okay. It had been so very long, and she still wasn’t okay. At that point, after weeks of not sleeping, weeks of crawling up the stairs, she wasn’t sure she would ever be okay. So she cried.
Months passed. She got very good at blaming her tears on the medication. Sure, she cried watching music videos and reading textbooks, but the tears weren’t her fault. It was the medication. She held her breath for the results of every blood test, relieved when she didn’t relapse, but halfway hoping that something would show a miracle cure that would make her better tomorrow. Always tomorrow, because the daily pain reminded her that she still wasn’t okay. But when tomorrow brought more pain, more disappointment, she cried.
She got very good at finding glad moments in her days. Tutoring, seeing her Young Life girls, talking on the phone with a friend, adding a minute to her routine at physical therapy. Although any activity left her wasted, lying in bed trying to get her heart rate down, drinking fluids to replace those lost, she desperately needed those moments. She was good at convincing herself that one good moment each day made it okay. But then it would rush at her, all the things she missed because most of her days were spent recovering: the play one of her girls performed in, her niece’s 1st birthday, a long planned camping trip, her grandmother’s 75th birthday, graduation with the rest of her class, the last Young Life camp with her girls. So every once in a while, she cried, because life just seemed too hard.
She went to church one night with a childhood friend. She sang well known songs and listened to a familiar sounding sermon. But then, her childhood friend, who had been more consistent in her care and attention during the long illness than any others, despite their long separation, prayed. The girl felt the tears slide down her cheeks and hit her hand. She was overcome by a feeling of such peace, of such love. It was as if the hundreds of people around the world who had told her they were praying were standing there, as if the thousands of angels who watched over her daily were able to, for an instant, let themselves be seen. So she cried, because it was so beautiful to be so loved.
I can find such joy in the knowledge that my tears are precious. Not because there is something intrinsically good in tears, or because crying is cathartic or whatever people try to tell me. But because through every one of those moments that I re-lived as I typed my story out, I was not alone. From the moment I entered the hospital to the drive home from church tonight, I have not been alone in my battle with kidney disease. I’ve tried so desperately to justify to myself and others that there was a reason for my disease, a reason that all of this happened. Yes, it’s given me an empathy I’ve never felt, and yes, it’s opened doors in conversation that would have been previously closed, but those aren’t good enough reasons to keep me going on days like today, when it all seems so hard, so unfair.
But, friends, Jesus was there with me the whole time. He was the only one who was with me the whole time---the only one who has watched every flux in faith, every rollercoaster of emotions. Not only does He know my name, my every thought, but He knows my tears. I believe that Jesus not only wept when His friend Lazarus died, but He weeps when we weep. God didn’t give me this wretched situation, He walks with me, and gets close enough to me when I cry to capture my tears in a bottle.
She couldn’t see the screen anymore. It was late and the tiny font on her iPhone was hard to decipher. But she knew that it was bad. Even though she couldn’t understand all the medical mumbo-jumbo, every site that included the words “nephrotic syndrome” and “acute tubular necrosis” also included very scary predictors of what had happened to other people. It hadn’t sunk in that those words now described her, but the beeping of her monitors, the buzzing sounds of a hospital and the shooting pains coursing through her body now that the last shot of morphine had worn off were a reminder that this was serious. So she cried, tears of pure fear.
She buried her head in her hands a week later, reacting to the shock of her reflection. Her face and eyes were so swollen she looked like she had Downs Syndrome. There was so much water in her skin, everything hurt, everything was swollen. It didn’t seem like the medications were helping, v As she rocked back and forth, crying that she didn’t like who she was anymore, her mother cried too, tentatively rubbing the girl’s back, afraid to say that everything would be okay. They both knew that this, whatever it was, was hard. So they cried, because there didn’t seem to be anything else to do.
She tried to understand. People had visited, sent flowers, called, texted and wrote emails for the first month. Slowly the outpouring of love from friends and colleagues dwindled to a trickle. She tried to understand that other people had lives to live, things to do and jobs to take care of. She tried to understand without jealousy, without desperately wishing that she could be out of the wheelchair when she left the house, without desperately wishing that she felt good enough to leave the house. She was thankful for her family and the moments when people did contact her, but she didn’t really understand. So she cried.
She sat against the wall in her closet, long after diagnosis. She had collapsed after staying in the hot tub too long, pressing her face on the cool wood floor and refusing help to make it up the stairs. With each step, she faced a new demon, crawling at a snail’s pace, convinced that if she could just make it up the stairs, she’d be okay. Sitting on the floor, she knew that she wasn’t okay. It had been so very long, and she still wasn’t okay. At that point, after weeks of not sleeping, weeks of crawling up the stairs, she wasn’t sure she would ever be okay. So she cried.
Months passed. She got very good at blaming her tears on the medication. Sure, she cried watching music videos and reading textbooks, but the tears weren’t her fault. It was the medication. She held her breath for the results of every blood test, relieved when she didn’t relapse, but halfway hoping that something would show a miracle cure that would make her better tomorrow. Always tomorrow, because the daily pain reminded her that she still wasn’t okay. But when tomorrow brought more pain, more disappointment, she cried.
She got very good at finding glad moments in her days. Tutoring, seeing her Young Life girls, talking on the phone with a friend, adding a minute to her routine at physical therapy. Although any activity left her wasted, lying in bed trying to get her heart rate down, drinking fluids to replace those lost, she desperately needed those moments. She was good at convincing herself that one good moment each day made it okay. But then it would rush at her, all the things she missed because most of her days were spent recovering: the play one of her girls performed in, her niece’s 1st birthday, a long planned camping trip, her grandmother’s 75th birthday, graduation with the rest of her class, the last Young Life camp with her girls. So every once in a while, she cried, because life just seemed too hard.
She went to church one night with a childhood friend. She sang well known songs and listened to a familiar sounding sermon. But then, her childhood friend, who had been more consistent in her care and attention during the long illness than any others, despite their long separation, prayed. The girl felt the tears slide down her cheeks and hit her hand. She was overcome by a feeling of such peace, of such love. It was as if the hundreds of people around the world who had told her they were praying were standing there, as if the thousands of angels who watched over her daily were able to, for an instant, let themselves be seen. So she cried, because it was so beautiful to be so loved.
I can find such joy in the knowledge that my tears are precious. Not because there is something intrinsically good in tears, or because crying is cathartic or whatever people try to tell me. But because through every one of those moments that I re-lived as I typed my story out, I was not alone. From the moment I entered the hospital to the drive home from church tonight, I have not been alone in my battle with kidney disease. I’ve tried so desperately to justify to myself and others that there was a reason for my disease, a reason that all of this happened. Yes, it’s given me an empathy I’ve never felt, and yes, it’s opened doors in conversation that would have been previously closed, but those aren’t good enough reasons to keep me going on days like today, when it all seems so hard, so unfair.
But, friends, Jesus was there with me the whole time. He was the only one who was with me the whole time---the only one who has watched every flux in faith, every rollercoaster of emotions. Not only does He know my name, my every thought, but He knows my tears. I believe that Jesus not only wept when His friend Lazarus died, but He weeps when we weep. God didn’t give me this wretched situation, He walks with me, and gets close enough to me when I cry to capture my tears in a bottle.
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