Last night I considered deleting my blog all together. I had it pulled up and thought about just printing everything so that I didn't lose my work, but also just taking it down because I didn't want it out there anymore. And I almost did it. I was so close to just clicking delete.
See, when I originally started blogging, I thought it would be so helpful--for me, for my Lyme friends, and for the other people in my world who needed more explanation about Lyme. I thought I could just casually write the way I was feeling, or the things that came up, or the thoughts that I had. I thought it would be easy.
I was wrong.
It has turned into way more than that. It has connected me to a lot of people who probably wouldn't have known my story otherwise. It has made my journey more than my own. It has given me support that I wouldn't have gotten without it. The thousands and thousands of views of the things that I have written have made me feel like I'm not alone.
But, it has also made me vulnerable. Having my words--and essentially my heart--right out there, is hard sometimes.
So, I'm not deleting my blog like I almost did last night. But I'm taking a break. I'm taking a break because I need to take care of my heart without it being out there for everyone else to see.
I am taking a break because I need to be selfish for a little while.
And, for once in my life, I think that's okay.
Thursday, September 8, 2016
Tuesday, September 6, 2016
I don't want to.
I've been going back and forth about whether or not to write this post. I know that it's going to be a touchy one, but I also know that it's an important one. So, I'm writing it. I'm doing it. Here we go.
I am the luckiest girl. I have really great parents. I have a beautiful home that they worked hard for. It's in a beautiful place on the water. I have the cutest dog ever. I have great friends (even though I'm kind of sure some of them are only friends with me because of said cute dog.) I was fortunate enough to go to college. I have my degree in something that really matters to me. I am working a job right now that, even though it isn't in my field, makes me happy. I have a car. I have all of the material things that I need and a whole lot of the things that I want.
I am happy.
But I don't want to live this life anymore.
I don't want to wake up in the morning and feel the first twinge of pain before I even open my eyes.
I don't want to reach for my phone to hit my snooze button only to realize that my hand is already touching the phone...I just can't feel it. I don't want another day of not being able to feel my hands or feet. They're there for a reason; I need them.
I don't want to scoot to the edge of my bed and stand up, hoping with everything that I have that my legs are ready to do their thing and I'm not going to just collapse back down onto the bed. Because, it seems simple--"just stand back up," you're probably thinking--but it's not. Starting your day like that is not simple. It's a mobility failure first thing in the morning that is a big reminder of the fact that you are not, in fact, okay. Mobility is taken for granted until it's tested.
I don't want to walk into the bathroom and see my swollen body in the mirror. I don't want to see someone looking back at me that I don't recognize anymore. I don't want to see my swollen eyes that aren't just swollen from sleeping or crying, but are swollen just because they're part of my body and being swollen is what my body does best these days. I don't want to see my swollen hands as I reach for the toothpaste and as I hold the toothbrush. I want to see the rings that used to be on my fingers. My fingers are naked and sad now. I guess at least their sadness fits in, right? I don't want to take off the clothes I went to bed in and see the places where they have cut into my skin overnight. And I don't want to put on new clothes onto the sore, swollen skin that is already mad at me.
I don't want to have to ask for help to open things because my hands can't do it. Sometimes they just drop things. Sometimes they feel like they aren't connected to my body at all. Sometimes they shake. And sometimes they do all of those things at the same time, making it nearly impossible to use them at all.
I don't want to forget my words. I don't want to forget the things that I absolutely should be able to remember. I don't want to get lost in a place that I know by heart. I don't want to stare at something as familiar as a cup and not, for the life of me, be able to remember the word to call it. I don't want to stare at a keyboard of letters and not know which ones to push to make the words I want to write. I don't want to lose the one way that I can truly get out what I'm trying to say.
I don't want to end my day with upwards of twenty pills that may or may not be even making a difference. I don't want to stand in the bathroom, staring at the medicine that I have to swallow, and wonder if the struggle is worth it.
I don't want to have to continue to go to bed at night hoping and praying that tomorrow will be the tomorrow that gets better. I don't want to have to keep going with the "I'm making it" and the "I'm hanging in there" and especially the "I'm doing okay!" lines that I continually say as if I'm a robot.
I don't want to do it anymore. I don't want to live this life anymore.
But I will.
I will because outside of this ugly, messy, awful Lyme life is the beautiful life that makes me the luckiest girl. I will because there are a lot of people that haven't. Either from the hands of this disease or by their own hands, because of this disease. I will live this life because they can't live theirs anymore.
I will live this life because I can. I will live this life because I'm lucky to have it, as hard as it is, as messy as it is, and as scary as it is.
I will live this life because you don't always get what you want.
And sometimes that's the best thing in the world.
I am the luckiest girl. I have really great parents. I have a beautiful home that they worked hard for. It's in a beautiful place on the water. I have the cutest dog ever. I have great friends (even though I'm kind of sure some of them are only friends with me because of said cute dog.) I was fortunate enough to go to college. I have my degree in something that really matters to me. I am working a job right now that, even though it isn't in my field, makes me happy. I have a car. I have all of the material things that I need and a whole lot of the things that I want.
I am happy.
But I don't want to live this life anymore.
I don't want to wake up in the morning and feel the first twinge of pain before I even open my eyes.
I don't want to reach for my phone to hit my snooze button only to realize that my hand is already touching the phone...I just can't feel it. I don't want another day of not being able to feel my hands or feet. They're there for a reason; I need them.
I don't want to scoot to the edge of my bed and stand up, hoping with everything that I have that my legs are ready to do their thing and I'm not going to just collapse back down onto the bed. Because, it seems simple--"just stand back up," you're probably thinking--but it's not. Starting your day like that is not simple. It's a mobility failure first thing in the morning that is a big reminder of the fact that you are not, in fact, okay. Mobility is taken for granted until it's tested.
I don't want to walk into the bathroom and see my swollen body in the mirror. I don't want to see someone looking back at me that I don't recognize anymore. I don't want to see my swollen eyes that aren't just swollen from sleeping or crying, but are swollen just because they're part of my body and being swollen is what my body does best these days. I don't want to see my swollen hands as I reach for the toothpaste and as I hold the toothbrush. I want to see the rings that used to be on my fingers. My fingers are naked and sad now. I guess at least their sadness fits in, right? I don't want to take off the clothes I went to bed in and see the places where they have cut into my skin overnight. And I don't want to put on new clothes onto the sore, swollen skin that is already mad at me.
I don't want to have to ask for help to open things because my hands can't do it. Sometimes they just drop things. Sometimes they feel like they aren't connected to my body at all. Sometimes they shake. And sometimes they do all of those things at the same time, making it nearly impossible to use them at all.
I don't want to forget my words. I don't want to forget the things that I absolutely should be able to remember. I don't want to get lost in a place that I know by heart. I don't want to stare at something as familiar as a cup and not, for the life of me, be able to remember the word to call it. I don't want to stare at a keyboard of letters and not know which ones to push to make the words I want to write. I don't want to lose the one way that I can truly get out what I'm trying to say.
I don't want to end my day with upwards of twenty pills that may or may not be even making a difference. I don't want to stand in the bathroom, staring at the medicine that I have to swallow, and wonder if the struggle is worth it.
I don't want to have to continue to go to bed at night hoping and praying that tomorrow will be the tomorrow that gets better. I don't want to have to keep going with the "I'm making it" and the "I'm hanging in there" and especially the "I'm doing okay!" lines that I continually say as if I'm a robot.
I don't want to do it anymore. I don't want to live this life anymore.
But I will.
I will because outside of this ugly, messy, awful Lyme life is the beautiful life that makes me the luckiest girl. I will because there are a lot of people that haven't. Either from the hands of this disease or by their own hands, because of this disease. I will live this life because they can't live theirs anymore.
I will live this life because I can. I will live this life because I'm lucky to have it, as hard as it is, as messy as it is, and as scary as it is.
I will live this life because you don't always get what you want.
And sometimes that's the best thing in the world.
Friday, September 2, 2016
Five.
Today I read back through some old blog posts.
(And by old I mean like, the last few months, not old like 1927. Come on now, let's not get crazy. There were no computers in 1927. And even though my body feels like it was around in 1927, my birth certificate says otherwise.)
And, in reading those blog posts I realized a few things...1. I'm kind of funny and 2. I didn't tell you about the-great-tick-incident-of-2k16.
So, let's get started with the-great-tick-incident-of-2k16, shall we? Mostly because I don't want to keep writing "the-great-tick-incident-of-2k16" because that's a lot of hyphens and that's hard on an iPhone. Anyway, let's take it back to July. I was minding my own business--as most great-tick-incident stories begin--sleeping on the futon couch with my dog. I woke up in the middle of the night and my arm felt like it was completely on fire. I could feel the bones in my arm and they were in searing pain. I tried to pick my arm up off the bed and I couldn't. It felt like it was nailed down. But honestly, I didn't think much of it. As crazy as that probably sounds. Weird things like that happen to me on a semi-regular basis with my Lyme, and I figured I would check it out the next morning. Little did I know what I was in for. So, the next morning rolled around and once it was light out and I could survey the situation I realized what the issue was--I had a tick attached to my arm. A tick. Attached to my arm. My arm. The arm that belongs to me. And thus began the-great-tick-incident-of-2k16.
So, I woke up, in complete panic, as one who was already sick from these little blood sucking demons would be. And I called my mom. Now, I'm 26 years old. And I blog on a regular basis about what to do when you have a tick. But, when I had one, suddenly I didn't have any idea what to do. Suddenly I had no idea how to human at all. So, I got the tick off. Put it in a ziplock bag (always remember that step!) and called the next day to make an appointment with the doctor. I should have made an appointment sooner. But I was stubborn. I didn't want to believe what was happening to me. And I wanted to believe that it was just going to be fine. Even though that clearly wasn't the case. Do as I say, friends, not as I do.
So, anyway. Went to the doctor. By this time, not even 48 hours later, I could barely lift my arm, I could barely hold my head up, my hands were shaky, I had a fever of 102, and my heart rate was slow. All from that tick bite. That fast. (Didn't believe me before? Believe me now. It happens that fast. That tick was on me for maybe 6 hours. Maybe. Not the 24 hours that they tell you. 6 hours.) I was diagnosed that day with Rocky Mountain Spotted Fever. The kind of tick that bit me did not carry Lyme, but it carries Rocky Mountain--another tick-borne disease. Bringing the grand total of tick-borne diseases in my body up to 5. Five. That is five more than should be in my body. Five more than I went there. And five more than I EVER want you to have to experience.
So please. PLEASE. Be cautious. Be vigilant. Be aware. I didn't get this tick from being in the woods, from being in the grass, or even from being outside. I didn't get it from anything that "they" tell you you can get ticks from. I got it from sleeping. As dramatic as it may sound--you aren't safe anywhere.
And now it's September. Two months after the-great-tick-incident-of-2k16. I'm seeing incredible doctors. And I'm incredibly fortunate. But I'm also very sick. And as true as it is, and as true as it has been for quite some time now, that's not a sentence I like to say. But I'll say it a thousand times if it helps to get the point across.
Please. Care about YOU. You deserve better than this. You deserve better than five tick-borne diseases. You deserve better than even one. Take the steps. You matter.
(And by old I mean like, the last few months, not old like 1927. Come on now, let's not get crazy. There were no computers in 1927. And even though my body feels like it was around in 1927, my birth certificate says otherwise.)
And, in reading those blog posts I realized a few things...1. I'm kind of funny and 2. I didn't tell you about the-great-tick-incident-of-2k16.
So, let's get started with the-great-tick-incident-of-2k16, shall we? Mostly because I don't want to keep writing "the-great-tick-incident-of-2k16" because that's a lot of hyphens and that's hard on an iPhone. Anyway, let's take it back to July. I was minding my own business--as most great-tick-incident stories begin--sleeping on the futon couch with my dog. I woke up in the middle of the night and my arm felt like it was completely on fire. I could feel the bones in my arm and they were in searing pain. I tried to pick my arm up off the bed and I couldn't. It felt like it was nailed down. But honestly, I didn't think much of it. As crazy as that probably sounds. Weird things like that happen to me on a semi-regular basis with my Lyme, and I figured I would check it out the next morning. Little did I know what I was in for. So, the next morning rolled around and once it was light out and I could survey the situation I realized what the issue was--I had a tick attached to my arm. A tick. Attached to my arm. My arm. The arm that belongs to me. And thus began the-great-tick-incident-of-2k16.
So, I woke up, in complete panic, as one who was already sick from these little blood sucking demons would be. And I called my mom. Now, I'm 26 years old. And I blog on a regular basis about what to do when you have a tick. But, when I had one, suddenly I didn't have any idea what to do. Suddenly I had no idea how to human at all. So, I got the tick off. Put it in a ziplock bag (always remember that step!) and called the next day to make an appointment with the doctor. I should have made an appointment sooner. But I was stubborn. I didn't want to believe what was happening to me. And I wanted to believe that it was just going to be fine. Even though that clearly wasn't the case. Do as I say, friends, not as I do.
So, anyway. Went to the doctor. By this time, not even 48 hours later, I could barely lift my arm, I could barely hold my head up, my hands were shaky, I had a fever of 102, and my heart rate was slow. All from that tick bite. That fast. (Didn't believe me before? Believe me now. It happens that fast. That tick was on me for maybe 6 hours. Maybe. Not the 24 hours that they tell you. 6 hours.) I was diagnosed that day with Rocky Mountain Spotted Fever. The kind of tick that bit me did not carry Lyme, but it carries Rocky Mountain--another tick-borne disease. Bringing the grand total of tick-borne diseases in my body up to 5. Five. That is five more than should be in my body. Five more than I went there. And five more than I EVER want you to have to experience.
So please. PLEASE. Be cautious. Be vigilant. Be aware. I didn't get this tick from being in the woods, from being in the grass, or even from being outside. I didn't get it from anything that "they" tell you you can get ticks from. I got it from sleeping. As dramatic as it may sound--you aren't safe anywhere.
And now it's September. Two months after the-great-tick-incident-of-2k16. I'm seeing incredible doctors. And I'm incredibly fortunate. But I'm also very sick. And as true as it is, and as true as it has been for quite some time now, that's not a sentence I like to say. But I'll say it a thousand times if it helps to get the point across.
Please. Care about YOU. You deserve better than this. You deserve better than five tick-borne diseases. You deserve better than even one. Take the steps. You matter.
Sunday, August 28, 2016
"Burbank, Leigh"
There are a lot of different reasons that I blog.
-I blog because something comes up that I want to remember.
-I blog because I have something to say that I think other people might want to hear or might get something out of.
-I blog when I can't sleep.
-I blog on particularly special or meaningful days.
-I blog during times when I'm lonely because, if nothing else, my blog will listen.
-I blog when I feel like awareness about something really needs to be shared.
-I blog when I want you to feel like you're not alone.
-I blog when I want to share something happy.
-I blog when I'm just feeling creative.
And I'm sure there are even more reasons. Those are just what I came up with off the top of my head right now.
Today I am blogging for a mix of those reasons.
Things have been weird lately. I'm in a really weird spot in my life and in some really weird relationships with people in my world. And I just feel very weird. Everything is just weird.
(Say weird again. Weird.)
And, I don't even want to talk about my Lyme stuff. Nobody wants to hear about my Lyme stuff anymore. And to be completely honest, I don't even want to hear about my Lyme stuff anymore. It's the same story every day. Except when it isn't. And then it's just scary. And I don't really want to face that either. And when something new and scary happens, I find myself wondering who to even talk to. Because, honestly, we're at the point where it's been going on so long that everyone has filed (pardon my language) "Lyme bullshit--Burbank, Leigh" into the back of their minds. Or even out of their heads completely, into the back file room for the files that they forget are there until they clean out at the end of the year. And I really can't blame them for that.
The problem though is that I can't file it away. So when something new happens, or something scary happens, it's front and center for me. Right in front of my face. Not only screaming at me from wherever it is inside of my body, but also screaming at me from the outside--"hey Leigh! Look at me! I'm making you worse! Suckaaa!" (I really picture Lyme as little green spiky monsters that run around being super destructive. And I hear them with little British accents. Which makes me want to love them because, come on now, British accents. But then they're just so mean that I can't love them, despite their British accents.)
So really, I guess what all this 1:30am rambling comes down to is this--I am jealous. I am jealous that you can choose to file me away. I wish that I could just take the "Lyme bullshit--Burbank, Leigh" folder and shred it completely. But I can't. I can't do anything but live with it. I can't do anything but wake up every morning and hope that nothing new is coming. And I can't do anything but live with that fear without letting that fear stop me from living. I can't do anything but have my mom read the medicine paperwork for side effects because I don't want to know anything and I don't want to convince myself of anything. I can't do anything but cry it out when I feel alone and terrible and it's a Friday and I can't call my doctor's office until Monday. I can't do anything except continue to push through. I can't do anything but put a smile so big on my face and a kimono so colorful on my body that people can't help to tell me that I look good even when I'm feeling the absolute worst. I can't do anything but to win my days even when I feel like my brain is slowly killing me.
And please, please just know that I am trying.
If I text you and remind you that I love you, that is trying; that is reminding you that I couldn't fight this fight without you. That means I'm thinking of how thankful I am for you. That text may be little, but it really comes from my heart. Every time. It means I know that you're trying too.
If I text you and ask you if I can talk about my Lyme, that is trying; that means I really need someone but I don't want to spill it all on you at once. That means I've been holding it back but I just can't anymore. That means I trust you. That means I just need a couple minutes to not be okay and then I'll pull myself back together.
If I ask you to hang out, that is really trying; I haven't been able to do a whole lot lately. But if I'm asking to hang out, that means I really appreciate you and our time together. (That also means I just want to sit on your couch. Let's not get crazy here.) Thank you for being in my world and for trying with me, too.
If I tell you how I'm really feeling, that is definitely trying, and that is what I'm doing with you right now. Thank you so much for continuing to do this crazy, weird, life thing with me.
I may be feeling super weird about a lot of things right now. I may be in a place that I've never been and I may not be quite sure how to navigate it. And it may be a little lonely. But I'm trying. And I'll get there. Somehow.
And, if you've read this far, thank you. Seriously. Thank you. Thank you for reading my messy heart. And if you are feeling something like this right now too, you are not alone. I promise.
-I blog because something comes up that I want to remember.
-I blog because I have something to say that I think other people might want to hear or might get something out of.
-I blog when I can't sleep.
-I blog on particularly special or meaningful days.
-I blog during times when I'm lonely because, if nothing else, my blog will listen.
-I blog when I feel like awareness about something really needs to be shared.
-I blog when I want you to feel like you're not alone.
-I blog when I want to share something happy.
-I blog when I'm just feeling creative.
And I'm sure there are even more reasons. Those are just what I came up with off the top of my head right now.
Today I am blogging for a mix of those reasons.
Things have been weird lately. I'm in a really weird spot in my life and in some really weird relationships with people in my world. And I just feel very weird. Everything is just weird.
(Say weird again. Weird.)
And, I don't even want to talk about my Lyme stuff. Nobody wants to hear about my Lyme stuff anymore. And to be completely honest, I don't even want to hear about my Lyme stuff anymore. It's the same story every day. Except when it isn't. And then it's just scary. And I don't really want to face that either. And when something new and scary happens, I find myself wondering who to even talk to. Because, honestly, we're at the point where it's been going on so long that everyone has filed (pardon my language) "Lyme bullshit--Burbank, Leigh" into the back of their minds. Or even out of their heads completely, into the back file room for the files that they forget are there until they clean out at the end of the year. And I really can't blame them for that.
The problem though is that I can't file it away. So when something new happens, or something scary happens, it's front and center for me. Right in front of my face. Not only screaming at me from wherever it is inside of my body, but also screaming at me from the outside--"hey Leigh! Look at me! I'm making you worse! Suckaaa!" (I really picture Lyme as little green spiky monsters that run around being super destructive. And I hear them with little British accents. Which makes me want to love them because, come on now, British accents. But then they're just so mean that I can't love them, despite their British accents.)
So really, I guess what all this 1:30am rambling comes down to is this--I am jealous. I am jealous that you can choose to file me away. I wish that I could just take the "Lyme bullshit--Burbank, Leigh" folder and shred it completely. But I can't. I can't do anything but live with it. I can't do anything but wake up every morning and hope that nothing new is coming. And I can't do anything but live with that fear without letting that fear stop me from living. I can't do anything but have my mom read the medicine paperwork for side effects because I don't want to know anything and I don't want to convince myself of anything. I can't do anything but cry it out when I feel alone and terrible and it's a Friday and I can't call my doctor's office until Monday. I can't do anything except continue to push through. I can't do anything but put a smile so big on my face and a kimono so colorful on my body that people can't help to tell me that I look good even when I'm feeling the absolute worst. I can't do anything but to win my days even when I feel like my brain is slowly killing me.
And please, please just know that I am trying.
If I text you and remind you that I love you, that is trying; that is reminding you that I couldn't fight this fight without you. That means I'm thinking of how thankful I am for you. That text may be little, but it really comes from my heart. Every time. It means I know that you're trying too.
If I text you and ask you if I can talk about my Lyme, that is trying; that means I really need someone but I don't want to spill it all on you at once. That means I've been holding it back but I just can't anymore. That means I trust you. That means I just need a couple minutes to not be okay and then I'll pull myself back together.
If I ask you to hang out, that is really trying; I haven't been able to do a whole lot lately. But if I'm asking to hang out, that means I really appreciate you and our time together. (That also means I just want to sit on your couch. Let's not get crazy here.) Thank you for being in my world and for trying with me, too.
If I tell you how I'm really feeling, that is definitely trying, and that is what I'm doing with you right now. Thank you so much for continuing to do this crazy, weird, life thing with me.
I may be feeling super weird about a lot of things right now. I may be in a place that I've never been and I may not be quite sure how to navigate it. And it may be a little lonely. But I'm trying. And I'll get there. Somehow.
And, if you've read this far, thank you. Seriously. Thank you. Thank you for reading my messy heart. And if you are feeling something like this right now too, you are not alone. I promise.
Wednesday, August 10, 2016
Sorry.
If you've ever asked me, or wondered, if my blog is about you, the answer to this one is yes.
To you--I'm sorry.
I'm sorry that I'm sick.
I'm sorry that it's not always easy to be my friend.
I'm sorry that sometimes I have to cancel our plans.
(And I'm sorry that sometimes I should cancel our plans and I don't and then halfway through what we're doing we both end up realizing why I should have canceled our plans.)
I'm sorry that I'm time consuming.
I'm sorry that I'm distracting.
I'm sorry that it's easier to talk to your other friends.
(And I'm sorry that you don't feel like you can talk to me anymore.)
I'm sorry that I come with a lot of baggage.
I'm sorry that baggage is heavy sometimes.
I'm sorry that sometimes I just have to sit down. (And I'm sorry that sometimes it happens in awkward places.)
I'm sorry if I've ever been an embarrassment to you because of my health.
I'm sorry that sometimes I can't remember my words and it takes me a long time to think.
I'm sorry that I can't do the things you want to do all the time.
I'm sorry I have to go home at night to take my medicine.
I'm sorry I can't keep up.
I'm sorry I don't look the way I used to.
I'm sorry I have scars and I'm sorry people stare at them when we're in public.
(And I'm sorry if you've ever heard them whisper. The people. Not my scars.)
I'm sorry I'm not who I used to be.
I'm sorry I'm not who you want me to be.
To me--I'm sorry.
I'm sorry I push you too hard sometimes.
I'm sorry I expect more of you than you have to give me right now.
I'm sorry I get mad at you for not being able to keep up.
I'm sorry you've lost so many friends because you're sick.
I'm sorry you have to sleep so much. (I know you want to live your life outside of your bed.)
I'm sorry that you can't even trust your own body anymore.
I'm sorry that being sick has left you feeling so lonely sometimes.
I'm sorry that you feel like such a burden.
I'm sorry that you feel like you're 126 instead of 26.
I'm sorry I have to fill you with so much medicine just to get you through the days.
I'm sorry you feel like you can't win.
I'm sorry I can't win for you.
I'm just really sorry.
To you--I'm sorry.
I'm sorry that I'm sick.
I'm sorry that it's not always easy to be my friend.
I'm sorry that sometimes I have to cancel our plans.
(And I'm sorry that sometimes I should cancel our plans and I don't and then halfway through what we're doing we both end up realizing why I should have canceled our plans.)
I'm sorry that I'm time consuming.
I'm sorry that I'm distracting.
I'm sorry that it's easier to talk to your other friends.
(And I'm sorry that you don't feel like you can talk to me anymore.)
I'm sorry that I come with a lot of baggage.
I'm sorry that baggage is heavy sometimes.
I'm sorry that sometimes I just have to sit down. (And I'm sorry that sometimes it happens in awkward places.)
I'm sorry if I've ever been an embarrassment to you because of my health.
I'm sorry that sometimes I can't remember my words and it takes me a long time to think.
I'm sorry that I can't do the things you want to do all the time.
I'm sorry I have to go home at night to take my medicine.
I'm sorry I can't keep up.
I'm sorry I don't look the way I used to.
I'm sorry I have scars and I'm sorry people stare at them when we're in public.
(And I'm sorry if you've ever heard them whisper. The people. Not my scars.)
I'm sorry I'm not who I used to be.
I'm sorry I'm not who you want me to be.
To me--I'm sorry.
I'm sorry I push you too hard sometimes.
I'm sorry I expect more of you than you have to give me right now.
I'm sorry I get mad at you for not being able to keep up.
I'm sorry you've lost so many friends because you're sick.
I'm sorry you have to sleep so much. (I know you want to live your life outside of your bed.)
I'm sorry that you can't even trust your own body anymore.
I'm sorry that being sick has left you feeling so lonely sometimes.
I'm sorry that you feel like such a burden.
I'm sorry that you feel like you're 126 instead of 26.
I'm sorry I have to fill you with so much medicine just to get you through the days.
I'm sorry you feel like you can't win.
I'm sorry I can't win for you.
I'm just really sorry.
Saturday, August 6, 2016
"You can just forget about it."
There are a few different ways that I blog.
1. I think long and hard about it. I make sure the words fit together perfectly. I make sure it sounds exactly the way I want it to. This one doesn't happen very often, but when it does, it's a process.
2. I'm somewhere like the shower or driving and something comes to me. I get home and write it really quickly and post it without even reading it again.
3. I hear something that someone says. I say to myself..."self, you should write about that." So I do.
Today I'm doing #3.
I overheard a conversation today. First I was super grossed out because they were talking about chiggers burrowing in their skin. Then they said "honestly though, I'd rather have a tick than chiggers because once you take a tick off you never have to think about it again, you can just forget about it."
Oh.
Oh how I wish that were the case.
Of course I'm not faulting the person talking about it. They have no way to understand how wrong their comment was. If they understood, they never would have said it. I'm glad they don't get it. I just wish I didn't get it either.
She said when you take off a tick you can just forget about it.
But you know what else you forget about?
The words you are trying to say. The names of people you've known forever. The password to your phone. Your social security number. Which medicines you're supposed to be taking at what time.
What it feels like to be okay.
So yes, maybe she was able to take off a tick and never think about it again. Maybe she could just forget about it. But not everyone is so lucky.
So, if you have the ability to do so, remember. Remember to check yourself for ticks. Remember to be aware of what you're saying and who you're saying it to. And remember to remember how lucky you are.
1. I think long and hard about it. I make sure the words fit together perfectly. I make sure it sounds exactly the way I want it to. This one doesn't happen very often, but when it does, it's a process.
2. I'm somewhere like the shower or driving and something comes to me. I get home and write it really quickly and post it without even reading it again.
3. I hear something that someone says. I say to myself..."self, you should write about that." So I do.
Today I'm doing #3.
I overheard a conversation today. First I was super grossed out because they were talking about chiggers burrowing in their skin. Then they said "honestly though, I'd rather have a tick than chiggers because once you take a tick off you never have to think about it again, you can just forget about it."
Oh.
Oh how I wish that were the case.
Of course I'm not faulting the person talking about it. They have no way to understand how wrong their comment was. If they understood, they never would have said it. I'm glad they don't get it. I just wish I didn't get it either.
She said when you take off a tick you can just forget about it.
But you know what else you forget about?
The words you are trying to say. The names of people you've known forever. The password to your phone. Your social security number. Which medicines you're supposed to be taking at what time.
What it feels like to be okay.
So yes, maybe she was able to take off a tick and never think about it again. Maybe she could just forget about it. But not everyone is so lucky.
So, if you have the ability to do so, remember. Remember to check yourself for ticks. Remember to be aware of what you're saying and who you're saying it to. And remember to remember how lucky you are.
Saturday, July 16, 2016
Here.
This is another one of those posts that I'm pretty sure applies to more than just me. I'm writing it because right now I'm feeling it. But I know I'm not the only one. I know that my other Lyme friends can feel me on this one. And I know that if you don't have Lyme, but are struggling with something else--be it another illness or maybe just another struggle in your life--you may have felt this way at some point too. So if you're reading this and you understand, I am sorry. I am so sincerely sorry that you've felt this way. Because, there is no other way around it, it sucks.
---
Just so you know, I can feel it. I can feel it as you slip further away from me. I feel it as your texts stop coming, and it's longer between answers, and then suddenly I'm the only one texting you and I'm not getting anything back at all. I feel the silence between dings on my phone getting more and more heavy. I feel the weight of the problems I'm coming to you with getting heavier too, in that silence. You don't feel it as your life goes on without me. But I feel it. Oh boy do I feel it.
Just so you know, I can feel it. I can feel the punch in the stomach when I come to you crying and you can't even look me in the eye. Like I'm some kind of diseased creature. I am diseased. But I'm also a human. I'm also your friend. You're supposed to love me through it. Don't you? Don't you love me through it? I thought you told me you'd love me through it.
Just so you know, I can see it. I can see it when you are not talking to me but you are online talking to other people. When I tell you something but you just can't find the time to talk to me about it. But you're finding time to go out with your other friends. Your healthy friends. Your friends that are at the same place in life as you. Your friends that aren't me.
Just so you know, I can see it. I can see you forgetting about me. I can see you moving on with your life while I sit here feeling like I'm rotting in this life that isn't moving on with me. I can see the dust settling as you disappear in the distance. And once it settles I can see everything a lot more clearly. While I'm standing here alone.
And just so you know, I can hear it. I can hear you when you say that you're here for anything. Whenever I need it. No matter what it is. Yet I'm feeling it. And I'm seeing it. And nothing is changing. Nothing is different. And here I am.
I am still me. Here.
And I just need you to be here too.
---
Just so you know, I can feel it. I can feel it as you slip further away from me. I feel it as your texts stop coming, and it's longer between answers, and then suddenly I'm the only one texting you and I'm not getting anything back at all. I feel the silence between dings on my phone getting more and more heavy. I feel the weight of the problems I'm coming to you with getting heavier too, in that silence. You don't feel it as your life goes on without me. But I feel it. Oh boy do I feel it.
Just so you know, I can feel it. I can feel the punch in the stomach when I come to you crying and you can't even look me in the eye. Like I'm some kind of diseased creature. I am diseased. But I'm also a human. I'm also your friend. You're supposed to love me through it. Don't you? Don't you love me through it? I thought you told me you'd love me through it.
Just so you know, I can see it. I can see it when you are not talking to me but you are online talking to other people. When I tell you something but you just can't find the time to talk to me about it. But you're finding time to go out with your other friends. Your healthy friends. Your friends that are at the same place in life as you. Your friends that aren't me.
Just so you know, I can see it. I can see you forgetting about me. I can see you moving on with your life while I sit here feeling like I'm rotting in this life that isn't moving on with me. I can see the dust settling as you disappear in the distance. And once it settles I can see everything a lot more clearly. While I'm standing here alone.
And just so you know, I can hear it. I can hear you when you say that you're here for anything. Whenever I need it. No matter what it is. Yet I'm feeling it. And I'm seeing it. And nothing is changing. Nothing is different. And here I am.
I am still me. Here.
And I just need you to be here too.
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