~ Anne Frank
I remember on Wednesday, it was late afternoon and I was in the kitchen probably trying to figure out if I could eat something since I had felt so sick all day long. And then my suffering was just too much for me to deal with and I started crying and screaming hysterically. I finally just laid down on the kitchen floor and wouldn't move.
As I laid on the floor I remember that I tried to get my mind into a deep mental state. I wanted to go to a place where I didn't feel sick anymore. I kept my mind focusing on going deeper and deeper into a darkness, but I wasn't having success. I kept hearing things around me that brought me back to where I was.
When one of my sisters (I have three) - the one who now lives an hour away - came by and I was so unresponsive to her she wanted to call 911, but my mom told her that it wouldn't do any good. I wanted to scream at her how stupid she was, how did she think after four years of just about every test imaginable did she think taking me to a generic hospital would help me in any way, but I kept silent. I just wanted her to go and leave me lying on the kitchen floor. It felt good to be lying there. I didn't want to be moved. I didn't want to go lie on my bed. My nausea seemed less pervasive as I laid there on my side.
But before my sister left to go to her yoga class she told my mom if I didn't get up she was going to call 911. My mom begged me to get up from the floor because she couldn't lift me, and it was only because I didn't want to cause any more stress for my mom that I got up and went in her room to lay on her bed. But it just didn't feel the same; I could feel my nausea more on the comfort of that soft bed than I had on the hard floor. So, I slid down off the bed and lay on my mother's hardwood floor.
My sister was concerned (but not concerned enough to miss out on her yoga class), but left me there. However, I still felt the nausea so terribly that I got up and went back to lay down where I had been when this all started: on the kitchen floor.
I couldn't get back to that place I had been before my sister disrupted me; that place where I was feeling less and less of my nausea. As much as I tried to meditate again, I couldn't keep my feeling of utter sickness at bay. Then I started to feel the pain of lying on the hard floor. I was on my left side and I could feel pain at the bone in my left shoulder. I could feel pain where my hip and knees were. And I welcomed the pain. I concentrated on the pain, because anything, at that point, was better for me to feel than the nausea.
I continued to lie there for so long that my arm and legs started to feel numb and I was glad for that, too. Anything that helped my mind be taken away from my sickness felt like a blessing. Finally, after over an hour, I knew that my sister would be coming back from her yoga class and, for the sake of my mom, I didn't want her to still find me lying there. I got up and went to lie on the couch downstairs. I was in what I call, "survival mode" and that day I had survived.
The next morning I still didn't feel well, but I just kept trying to function at the level I need to in order to make it through the day. I guess it was around 7:30 PM or so when I thought that I should try to eat something. And usually my go to item is a fruit smoothie; probably the healthiest thing I eat - it has a cup of blueberries and cherries each, soy milk, a nice, big dollop of Greek yogurt, a cup (or more) of regular vanilla yogurt, a tablespoon of dark chocolate cocoa and then blended thoroughly - and I put the berries and the soy milk in the blender and at that point that nausea that I had been staving off for so long just couldn't be blocked out any longer.
I went kind of crazy.
I started screaming at the top of my lungs. I don't know if words came out or not, I just know that I screamed. I threw over kitchen chairs and was glad that they hit the floor hard. I knew I wanted to throw and break things... glass things. But even in my state of rage I was rational enough to know that I didn't want to break those glass things in the house.
So, I ran to the cupboard where we keep glass jars, mason jars, and I grabbed one and then ran to the kitchen's sliding glass door which leads out onto a balcony, went out on it and threw the glass jar as hard as I could at an old oak tree about thirty feet away. I missed. I ran back in the house and went to the cupboard again, this time grabbing as many jars as I could. I ran back out to the balcony, set the jars on a bench, and one by one picked them up throwing them at the tree. On my second throw I hit the jar against the tree and it was like the glass blew up. I liked the sound of shattering glass and I liked that fragments of it flew all over our grassy backyard. I had four more jars and each one I threw at the tree as hard as I could, but I missed with everyone of those. I ran back inside, and mind you, all the while I was screaming, and went to the cupboard only to find one more jar left. I grabbed it and went to stand on the balcony and face that oak tree one last time, but the jar flew just a foot or so to the left.
Our backyard was now littered with glass jars, and I even saw one which I had thrown so hard at the tree but missed, way down the hill in our neighbors yard. I think at the point, the only thing I cared about was that I had missed hitting the tree and didn't get to hear more of the shattering shards of glass. I wanted to break things.
By the time I had gone out on the balcony the second time my mom had come out of her room and was picking up the wooden kitchen chairs I had thrown down. And when she did that, picked them up, I threw them down again. "What are you doing?" she wanted to know. "I can't take it anymore. I can't take feeling so sick." "Stop it!" she said. "Would you rather me get in the car and go drive it into a wall?" I asked, as I grabbed the keys. I knew that getting in a car was not what I should do so I did the only other thing I could do with my anger. I threw more things.
I ran into our living room and threw over the big settee, the beautiful fabric chair, the iron fireplace poker and tools, and then I threw my phone against the blue-tiled floor. When my phone hit I saw pieces of it fly in different directions, but I didn't care. I was just glad I had one more thing I could break.
I couldn't quit screaming. My mom followed me frantically as I tried to wrought some form of destruction and I yelled at her to call my sister - the one that lives down the street. She didn't want to do it. "Call her!" I screamed, "I need help!" She still didn't want to do it. I think she didn't want my sister to see how crazy I had gone, but all that was going through my mind was, I needed someone to stop me, to calm me down, to hear my cry for help.
I ran back into the kitchen and screamed at my mom that if she wouldn't call my sister I would. Just give me her number I imploringly begged. "People always wonder at the funeral what they could have done to help. They never understand the why. Do you want that?" Finally she called her. I heard her say, "C. come over here. L. is going crazy." and she hung up.
I went back into the darkened living room, with its furniture tipped over or laying on its side, and I sat on the couch, now just crying. I was crying, but I was also calming down with the thought of my sister coming to help me.
It took her little more than five minutes to get to our house. When she came in the room she told my mom that maybe I needed to go to the hospital because my other sister had told her of my actions the night before. Both my mom and I said almost simultaneously, "A hospital can't do anything!" She thought they might be able to. I told her I had the best doctor in the area trying to find out what was wrong and help me get better and no hospital near us would be even close to as good as she was. I said, "The only way a hospital could help me is if they gave me a morphine drip and knocked me out so I wouldn't have to feel my nausea any longer." I wailed at her, "I can't take feeling so sick anymore! I just can't take it." I told her that it felt like I was dying. "It feels," I continued, "like what I imagine death feels like." She asked me if my doctor, Dr. M. knew all of this; had I told her all of it? Yes, I said, she knew.
I told her what she could do to help me in the moment. And what that was, would be to go to the website of a center that deals with Chiari malformation patients and find the patient application and help me fill it out. And that's what we did. She asked me all of the, on a scale of 1-10, questions, I answered her, she filled in the blanks and when we finished she went and got an envelope, put a stamp on it and wrote the address to send the form in. I told her it couldn't be sent until I got a copy of the MRI to go with it and she asked what that required and told me she would help to get it done.*
I had quit crying not long after my sister had arrived and I just sat there quietly on the couch, but just as sick as I ever was. I think I had exhausted my anger.
She wanted me to call my counselor, but it was 9:00 pm at night and I told her she wouldn't answer, it would just be calling her answering machine. But my sister got me to call her anyway and she answered. I really couldn't get words out and so I just handed the phone to my sister to let her explain what was happening. They talked for some time and finally I heard her scheduling an appointment for me. She then handed the phone back to me.
When my counselor talked to me she said, I wasn't having a breakdown, I was having anger. I told her that it was hard enough on me, but I hated the stress it put on my mother. And to that, she jokingly said, "It's not like you were running around chasing after your mother with a knife!" No, I thought, at least I wasn't doing that.
During the next few days I was better - and my better isn't really "better" it's just not my death feeling - and even feeling nausea, but without feeling like I'm dying from it, is a functional place for me to live. It's the place where my Zofran (anti-nausea medicine they use for chemo patients) works and I get some kind of relief.
Last night I was fortunate to have enough relief to celebrate my mom's 84th birthday. Sometimes I feel like the stress I have - the stress that I put her under - will be the cause of her death, but other people tell me it is more likely the cause for her to live.
Really, all I know how to do right now is try to survive, and sometimes I do it better than at other times.
*Although an MRI of my brain has shown that I have a condition (genetic) called a Chiari malformation, there are different levels of it... Chiari 0 - 4. I am a Chairi 0. A neurosurgeon where I am would say, has said, that me being a Chiari 0 is nothing, not causing my symptoms, but there is a center that I have read about that explains today's technology as not being good enough - because we are talking in millimeters - to say whether or not a Chiari 0 could be the problem or not. Their website explains that patients go for years with symptoms such as mine because they have a Chiari malformation, but that it isn't a 1 or above. They talk about last resort stuff - as in brain surgery - when your quality of life suffers. Well, my quality of life has been suffering for over four years now and so I am willing to find out from this center what they think and if they can help. Just a few millimeters of relief may be all that is keeping me from living normally. I don't know... but things have been set in motion to see.
The next morning I still didn't feel well, but I just kept trying to function at the level I need to in order to make it through the day. I guess it was around 7:30 PM or so when I thought that I should try to eat something. And usually my go to item is a fruit smoothie; probably the healthiest thing I eat - it has a cup of blueberries and cherries each, soy milk, a nice, big dollop of Greek yogurt, a cup (or more) of regular vanilla yogurt, a tablespoon of dark chocolate cocoa and then blended thoroughly - and I put the berries and the soy milk in the blender and at that point that nausea that I had been staving off for so long just couldn't be blocked out any longer.
I went kind of crazy.
I started screaming at the top of my lungs. I don't know if words came out or not, I just know that I screamed. I threw over kitchen chairs and was glad that they hit the floor hard. I knew I wanted to throw and break things... glass things. But even in my state of rage I was rational enough to know that I didn't want to break those glass things in the house.
So, I ran to the cupboard where we keep glass jars, mason jars, and I grabbed one and then ran to the kitchen's sliding glass door which leads out onto a balcony, went out on it and threw the glass jar as hard as I could at an old oak tree about thirty feet away. I missed. I ran back in the house and went to the cupboard again, this time grabbing as many jars as I could. I ran back out to the balcony, set the jars on a bench, and one by one picked them up throwing them at the tree. On my second throw I hit the jar against the tree and it was like the glass blew up. I liked the sound of shattering glass and I liked that fragments of it flew all over our grassy backyard. I had four more jars and each one I threw at the tree as hard as I could, but I missed with everyone of those. I ran back inside, and mind you, all the while I was screaming, and went to the cupboard only to find one more jar left. I grabbed it and went to stand on the balcony and face that oak tree one last time, but the jar flew just a foot or so to the left.
Our backyard was now littered with glass jars, and I even saw one which I had thrown so hard at the tree but missed, way down the hill in our neighbors yard. I think at the point, the only thing I cared about was that I had missed hitting the tree and didn't get to hear more of the shattering shards of glass. I wanted to break things.
By the time I had gone out on the balcony the second time my mom had come out of her room and was picking up the wooden kitchen chairs I had thrown down. And when she did that, picked them up, I threw them down again. "What are you doing?" she wanted to know. "I can't take it anymore. I can't take feeling so sick." "Stop it!" she said. "Would you rather me get in the car and go drive it into a wall?" I asked, as I grabbed the keys. I knew that getting in a car was not what I should do so I did the only other thing I could do with my anger. I threw more things.
I ran into our living room and threw over the big settee, the beautiful fabric chair, the iron fireplace poker and tools, and then I threw my phone against the blue-tiled floor. When my phone hit I saw pieces of it fly in different directions, but I didn't care. I was just glad I had one more thing I could break.
I couldn't quit screaming. My mom followed me frantically as I tried to wrought some form of destruction and I yelled at her to call my sister - the one that lives down the street. She didn't want to do it. "Call her!" I screamed, "I need help!" She still didn't want to do it. I think she didn't want my sister to see how crazy I had gone, but all that was going through my mind was, I needed someone to stop me, to calm me down, to hear my cry for help.
I went back into the darkened living room, with its furniture tipped over or laying on its side, and I sat on the couch, now just crying. I was crying, but I was also calming down with the thought of my sister coming to help me.
It took her little more than five minutes to get to our house. When she came in the room she told my mom that maybe I needed to go to the hospital because my other sister had told her of my actions the night before. Both my mom and I said almost simultaneously, "A hospital can't do anything!" She thought they might be able to. I told her I had the best doctor in the area trying to find out what was wrong and help me get better and no hospital near us would be even close to as good as she was. I said, "The only way a hospital could help me is if they gave me a morphine drip and knocked me out so I wouldn't have to feel my nausea any longer." I wailed at her, "I can't take feeling so sick anymore! I just can't take it." I told her that it felt like I was dying. "It feels," I continued, "like what I imagine death feels like." She asked me if my doctor, Dr. M. knew all of this; had I told her all of it? Yes, I said, she knew.
I told her what she could do to help me in the moment. And what that was, would be to go to the website of a center that deals with Chiari malformation patients and find the patient application and help me fill it out. And that's what we did. She asked me all of the, on a scale of 1-10, questions, I answered her, she filled in the blanks and when we finished she went and got an envelope, put a stamp on it and wrote the address to send the form in. I told her it couldn't be sent until I got a copy of the MRI to go with it and she asked what that required and told me she would help to get it done.*
I had quit crying not long after my sister had arrived and I just sat there quietly on the couch, but just as sick as I ever was. I think I had exhausted my anger.
She wanted me to call my counselor, but it was 9:00 pm at night and I told her she wouldn't answer, it would just be calling her answering machine. But my sister got me to call her anyway and she answered. I really couldn't get words out and so I just handed the phone to my sister to let her explain what was happening. They talked for some time and finally I heard her scheduling an appointment for me. She then handed the phone back to me.
When my counselor talked to me she said, I wasn't having a breakdown, I was having anger. I told her that it was hard enough on me, but I hated the stress it put on my mother. And to that, she jokingly said, "It's not like you were running around chasing after your mother with a knife!" No, I thought, at least I wasn't doing that.
During the next few days I was better - and my better isn't really "better" it's just not my death feeling - and even feeling nausea, but without feeling like I'm dying from it, is a functional place for me to live. It's the place where my Zofran (anti-nausea medicine they use for chemo patients) works and I get some kind of relief.
Last night I was fortunate to have enough relief to celebrate my mom's 84th birthday. Sometimes I feel like the stress I have - the stress that I put her under - will be the cause of her death, but other people tell me it is more likely the cause for her to live.
Really, all I know how to do right now is try to survive, and sometimes I do it better than at other times.
*Although an MRI of my brain has shown that I have a condition (genetic) called a Chiari malformation, there are different levels of it... Chiari 0 - 4. I am a Chairi 0. A neurosurgeon where I am would say, has said, that me being a Chiari 0 is nothing, not causing my symptoms, but there is a center that I have read about that explains today's technology as not being good enough - because we are talking in millimeters - to say whether or not a Chiari 0 could be the problem or not. Their website explains that patients go for years with symptoms such as mine because they have a Chiari malformation, but that it isn't a 1 or above. They talk about last resort stuff - as in brain surgery - when your quality of life suffers. Well, my quality of life has been suffering for over four years now and so I am willing to find out from this center what they think and if they can help. Just a few millimeters of relief may be all that is keeping me from living normally. I don't know... but things have been set in motion to see.
