May 27, 2016
The Cost of Money
My first six months of treatment alone cost me $80,000.
Over the course of my treatment, the five years, easily was a million dollars out of pocket. People say, “Man, if I had a million dollars!” I had the best health care coverage during the worst of my sickness – Blue Cross, Blue Shield – which covered a little bit of everything, minus a couple things.
It cost over a million dollars to keep me here.
The Cost on Dreams
I wanted so bad to be a writer.
I toyed with going to New York and getting a masters and being a writer – anywhere. At this point, I do write and I'll continue working on it, but, I need to pay bills. I needed to get my head out of the clouds and do what needed to be done. The cost was the large dreams, the time and then the understanding that there are more important things than merely what I want to make me happy. The world is bigger than that.
I dreamed of going to New Zealand and Zanzibar. Europe. All these dreams died. Beyond dying, they are probably not going to be coming back. Plane rides can be painful and make me feel like I am spinning in circles. The sound can bother me. And I can't eat most foods, so, how am I suppose to sustain a vacation to another country? I will never sample rich, exotic cuisine. I'll never hike through mountains or do anything like that which seems to make my friends very happy.
Knowing your limits is not so much a cost - but, I know my limits. And I will never see or do half the things I wish I could before I got sick.
The Cost on Education
My brain was infected when I was in high school and college meaning, on paper, I’m a really dumb kid. I'd like to think I'm not a really dumb kid, but, I have lists and list of proof of failed tests and subjects and classes. Of years of "making up" grades to Ds all summer in summer school.
I could never take any challenging class. While I would have loved - LOVED - to be in science, technology, engineering and mathematics, my brain was far to compromised to understand these concepts. I could never study, I had no memory. However hard I worked, I had a teacher pull me aside to tell me how I needed to apply myself more because I was failing. I even had teachers laugh at me thinking I was trying to do as badly as I was.
The challenge of merely getting myself together - easy feats for any of my peers - meant I would never take challenging classes. I would never succeed academically in anything I tried. The best I could do was hope I was funny and someone would let me pass a class.
I graduated college by .02 points of a grade.
I was sitting on my couch the day they call people who can walk but can’t graduate, waiting for the call. I have nothing to prove I'm intelligent.
And I certainly hated how hard I had to work to be just a dumb kid.
The Cost on Career
I am stunted in my career growth. My fight doesn’t translate into anything.
It’s not that I compare myself to others – I am genuinely super-happy when someone I know is successful. I know how much work it takes. I am sad for myself because I feel like I had some real potential. Maybe if I wasn't sick, I really could have changed the world.
Ok, maybe not the world - but I could have contributed something. I could have been more than a grunt. I just never could get a hold of those things that makes people professional successful. I can't care about corporate culture - I can't care about fake awards for being popular and extroverted and work-life-balance and drama when I know none of it matters. Deeper things matter. And all of those things can go away in a heartbeat.
But I will always be many steps behind others much younger than me. I just don't get it. I'm not the person who has anything to offer the corporate world. And I never will.
I will always have to work harder to be normal. I will always have doubt first even when the other side of my brain tells me I'm doing good.
The Cost on Things
I am happy to be alive and to just build things. I find - espcially as I watched more TED talks from survives or things - I'm not one of those near-death millionaires giving speeches about how material things don't matter or the people who tell you to blow your money on travel and experiences over things.
Things matter more to me. I take care of my things, I want things like pretty shoes and clothes. I can wrap my body in these things and be pretty and healthy looking.
It's like victory.
Memories can leave my brain like the trips (three international) my family took together that I don't remember. I don't remember people. I don't remember things I said. I don't remember all that.
I like tangible things. I like looking for them. Finding them. Possessing them. Touching them and applying memories to them. These things that people say don't matter - they are real. They can't die or be taken away. Not in the same way my who person can.
The Cost on Spirituality
I always believe in God.
Maybe it’s just because I got infection in my brain – I had many experiences reported from people who died and came back or almost died. It made me aware there were forces and elements beyond understanding and that were stronger than me.
But, that’s not what it was for me. I don't feel a deep connection to my religion or even God. I have this neutral understanding of greater things.
I feel closest to God outside on my bike because I am alone there. I can’t explain it. God doesn’t talk, God doesn’t protect people, God doesn’t see good or bad. God doesn’t save or destroy. God is like the soul of ever cell and atom in the universe. God made it possible for me to move in the direction I move – to think what I think to believe what I believe. God doesn't "listen" to my wants or demands - God is and that's the end of the statement.
God is.
There is no plan or saving because - God is beyond that. You can’t rely on God for what you want anymore than I could rely on myself to not get sick.
When you think about that – you want to do more, be more and help and love MORE. You stop asking, hoping, wanting and questioning God based on what has effected you - and you understand this is just what it is and one day it will not be and we are all connected.
I was watching a program on the 1972 Andes flight disaster (I had read the book: Alive: The Story of the Andes Survivors) and he said something along the lines of God being closer when they were on the mountain because you had less.
But that’s it. You can’t pray or ritualized yourself into something. You are already there. Here is sort of what that sounds like from Roberto Canessa.
When I was sick and went to church – it was torture. The pews hurt. The kneeing hurts. You bet communion wafers hurt my tummy - and still do. But I was a young person and disrespectful for all my complaints or not taking communion. How stupid and silly. These rules of man matter nothing to God.
Church hurts even now. It feels disconnected to me. It a memory box of physically hurts and reminders of how I just never added up in the eyes of a myth.
The Cost on Body-Stuff
I will never donate blood. Who knows what's in my blood, hiding away. Most of the blood supply is contaminated. I know many Lymie who donated blood before and after treatment. So, there are a lot of tick-borne illnesses floating around in the blood supply ready to be administered directly to the sick and injured.
I will also never donate my organs. I was once called out for this - how I was a bad person for not donating. Again, they are damaged. I have material in my system that almost killed me - what chance do you think someone else would have with them.
You have to remember, too. Let's say someone got my donated blood and immediately broke out in babesiosis - that person would have to live with a host of non-meaningful diagnosis because this person never got a tick bite. And it's impossible to get babesiosis. . .right?
Cost on Family
I will never have children. I mean, I could get pregnant as far as I know and I actually do not want children - so, that was always there. I really never, ever want to children. I don't even like being around them, really. I'm not maternal.
As someone with all this infection, I could pass all of this onto a child in my womb or to anyone accepting my organs.
Imagine passing this on to someone else or even your child knowing it's an automatical chronic life-stealer if not death sentence.
For a long time, I wondered how many people I killed when bugs bit me and moved to someone else. I wondered if I could ever make that up. .somehow.
The Cost on Nature
F**k nature.
I am not going on a hike. I am not going on a picnic. I am not going to even walk on grass, sometimes. I am probably going to have DEET on me somewhere in a can. I am probably going to freak out at your BBQ.
And, yes, when you try to make it "ok" by telling me something about how it's not "tic season" or how fun it is or how it's not that far - YES, I want to punch you in your god-damn motherf**king face. Take your walk or hike or tell me I need to get out more and work out or something - I paid a giant fee for my love of the outdoors.
And I will god-damn punch you in your ignorant face.
Kidding. As with everything of my 15+ year story. I'll do it quietly. I shouldn't upset anyone with things they don't know or believe. I shouldn't scare people. I should just nod and smile and say "no, that's ok."
So, you, yeah, you - Stop telling me how pretty whatever nature related thing you want to walk through. It's like telling someone who just survived cancer if s/he wants to do or consume the thing that caused it in the first place. No. No. NO.
When I got married, our photographer had some places in Valley Forge Park picked out to get photos. And I was like, "Well, uhh. Maybe we go real fast? IDK, just, LOLZ, things happened. Hehe. No, it's cool."
And here I am - outside. On the grass.
Sorry for any minor meltdowns or oddness, Daniel Fullam. You see, Valley Forge Park is a hotbed of vector-borne and tick-borne illnesses. In fact, due to the deer population there are actually very unique strains of many illnesses.
But, it was really pretty and they were really pretty pictures. And I wish I didn't slightly cringe every time I saw the outdoor ones. As with everything, you must endure it quietly and not upset the boat. You go into "I'm normal" mode and walk through the fear that was once a reality.
The Cost on Relationships
Relationships. No relationship can survive this.
As strong as you think you are, as much love as you think you have – they will be no more by the end if this sickness went through them. I was dating a guy I was going to marry when I got diagnosed. I had a ring and everything. We had known each other since 1992 and started dating in 2003. By 2008, it was no more. We never even talked again. My best friends at the time faded away – to this day, we never talk.
The friends who I maintained relationships with were far enough away from this sickness that it didn’t touch them. One was off in grad school in another state. I think I had a fight with the other one and we drifted away before coming back after I was sick.
If I was ever more thankful for a falling out with someone, it was with my BFF, Melissa. If she had been around during my sickness, I would have 100% lost her.
This is not because people are shallow or weak or anything. People are amazing if you just give them the space to be amazing.
This is a lot to deal with. A lot. I was a lot to deal with. It’s not a sign of weakness to walk away. I would have walked away from me. I had a plan to kill myself rather than live this way which is the equivalent of walking away from myself.
I do believe if I had cancer or an acceptable sickness, there would have been a better chance of these people staying around. Then maybe the old additive of “your real friends hang around” would apply.
With tick-borne illnesses – no. They were all real friends. And they are all real humans. They cannot endure this. Not for this long. Not with these unknowns.
I would gladly welcome back any friends I "lost touch" with. I just worry that maybe they will remind me of what it was like when I was sick. What if them leaving then marked them with what all of this feel like and I will see them and it will all come back in my mind and I won't be able to say anything but, "You see, I was just really sick."
Heh. . .heh.
And. . .
I work very hard. I have a husband. And a house. And a cat. And a blog. I'm so lucky. Even with my lack of what I should have been or would have been or could have been - even if people telling me about how I need to travel to places or do things that I can't - I am so amazingly lucky.
I have so much more than most Lymies will ever have. In a very real well, I am someone else’s dream.
I am the embodiment unattainable future for most people infected with tick-born illnesses. I am very rare for anyone who went through what I have. Most never got this far. To most, I am the dream they will never obtain.
I can make new dreams. That's what separates me for those who were never sick and those who will never get better.
My first six months of treatment alone cost me $80,000.
Over the course of my treatment, the five years, easily was a million dollars out of pocket. People say, “Man, if I had a million dollars!” I had the best health care coverage during the worst of my sickness – Blue Cross, Blue Shield – which covered a little bit of everything, minus a couple things.
It cost over a million dollars to keep me here.
The Cost on Dreams
I wanted so bad to be a writer.
I toyed with going to New York and getting a masters and being a writer – anywhere. At this point, I do write and I'll continue working on it, but, I need to pay bills. I needed to get my head out of the clouds and do what needed to be done. The cost was the large dreams, the time and then the understanding that there are more important things than merely what I want to make me happy. The world is bigger than that.
I dreamed of going to New Zealand and Zanzibar. Europe. All these dreams died. Beyond dying, they are probably not going to be coming back. Plane rides can be painful and make me feel like I am spinning in circles. The sound can bother me. And I can't eat most foods, so, how am I suppose to sustain a vacation to another country? I will never sample rich, exotic cuisine. I'll never hike through mountains or do anything like that which seems to make my friends very happy.
Knowing your limits is not so much a cost - but, I know my limits. And I will never see or do half the things I wish I could before I got sick.
The Cost on Education
My brain was infected when I was in high school and college meaning, on paper, I’m a really dumb kid. I'd like to think I'm not a really dumb kid, but, I have lists and list of proof of failed tests and subjects and classes. Of years of "making up" grades to Ds all summer in summer school.
I could never take any challenging class. While I would have loved - LOVED - to be in science, technology, engineering and mathematics, my brain was far to compromised to understand these concepts. I could never study, I had no memory. However hard I worked, I had a teacher pull me aside to tell me how I needed to apply myself more because I was failing. I even had teachers laugh at me thinking I was trying to do as badly as I was.
The challenge of merely getting myself together - easy feats for any of my peers - meant I would never take challenging classes. I would never succeed academically in anything I tried. The best I could do was hope I was funny and someone would let me pass a class.
I graduated college by .02 points of a grade.
I was sitting on my couch the day they call people who can walk but can’t graduate, waiting for the call. I have nothing to prove I'm intelligent.
And I certainly hated how hard I had to work to be just a dumb kid.
The Cost on Career
I am stunted in my career growth. My fight doesn’t translate into anything.
It’s not that I compare myself to others – I am genuinely super-happy when someone I know is successful. I know how much work it takes. I am sad for myself because I feel like I had some real potential. Maybe if I wasn't sick, I really could have changed the world.
Ok, maybe not the world - but I could have contributed something. I could have been more than a grunt. I just never could get a hold of those things that makes people professional successful. I can't care about corporate culture - I can't care about fake awards for being popular and extroverted and work-life-balance and drama when I know none of it matters. Deeper things matter. And all of those things can go away in a heartbeat.
But I will always be many steps behind others much younger than me. I just don't get it. I'm not the person who has anything to offer the corporate world. And I never will.
I will always have to work harder to be normal. I will always have doubt first even when the other side of my brain tells me I'm doing good.
The Cost on Things
I am happy to be alive and to just build things. I find - espcially as I watched more TED talks from survives or things - I'm not one of those near-death millionaires giving speeches about how material things don't matter or the people who tell you to blow your money on travel and experiences over things.
Things matter more to me. I take care of my things, I want things like pretty shoes and clothes. I can wrap my body in these things and be pretty and healthy looking.
It's like victory.
Memories can leave my brain like the trips (three international) my family took together that I don't remember. I don't remember people. I don't remember things I said. I don't remember all that.
I like tangible things. I like looking for them. Finding them. Possessing them. Touching them and applying memories to them. These things that people say don't matter - they are real. They can't die or be taken away. Not in the same way my who person can.
The Cost on Spirituality
I always believe in God.
Maybe it’s just because I got infection in my brain – I had many experiences reported from people who died and came back or almost died. It made me aware there were forces and elements beyond understanding and that were stronger than me.
But, that’s not what it was for me. I don't feel a deep connection to my religion or even God. I have this neutral understanding of greater things.
I feel closest to God outside on my bike because I am alone there. I can’t explain it. God doesn’t talk, God doesn’t protect people, God doesn’t see good or bad. God doesn’t save or destroy. God is like the soul of ever cell and atom in the universe. God made it possible for me to move in the direction I move – to think what I think to believe what I believe. God doesn't "listen" to my wants or demands - God is and that's the end of the statement.
God is.
There is no plan or saving because - God is beyond that. You can’t rely on God for what you want anymore than I could rely on myself to not get sick.
When you think about that – you want to do more, be more and help and love MORE. You stop asking, hoping, wanting and questioning God based on what has effected you - and you understand this is just what it is and one day it will not be and we are all connected.
I was watching a program on the 1972 Andes flight disaster (I had read the book: Alive: The Story of the Andes Survivors) and he said something along the lines of God being closer when they were on the mountain because you had less.
But that’s it. You can’t pray or ritualized yourself into something. You are already there. Here is sort of what that sounds like from Roberto Canessa.
Q: Was there any change on your religious beliefs after the accident?I don’t want to go to church. Church hurts. It’s an autopilot situation of the same stuff over and over. The God or concept I feel the closest to is not in my religion and not in church – thusly church, ritual and sacrament is a waste of time. I don’t want to be around people in a church, I don't want to be around people in some way of finding God.
A: Well, I think there are two types of Gods, one which is shown to you at the School, sitting in heaven and sending rays to the people who are on earth, and another one who is the one we knew in the Andes, we practically lived with him and we asked him [to] help constantly. You get closer to the idea of the death and you think you are just passing through life, and that life is an accident in which the only real thing is that you’re going to die. With those parameters we learnt not to care about our possibility of dying because we were in peace with both our souls and God. In that constant talking with God we begged him the salvation to be difficult but not impossible. You were there and saw a friend dead, a friend who ten minutes earlier was alive.(Roberto Canessa January 2002)
When I was sick and went to church – it was torture. The pews hurt. The kneeing hurts. You bet communion wafers hurt my tummy - and still do. But I was a young person and disrespectful for all my complaints or not taking communion. How stupid and silly. These rules of man matter nothing to God.
Church hurts even now. It feels disconnected to me. It a memory box of physically hurts and reminders of how I just never added up in the eyes of a myth.
The Cost on Body-Stuff
I will never donate blood. Who knows what's in my blood, hiding away. Most of the blood supply is contaminated. I know many Lymie who donated blood before and after treatment. So, there are a lot of tick-borne illnesses floating around in the blood supply ready to be administered directly to the sick and injured.
I will also never donate my organs. I was once called out for this - how I was a bad person for not donating. Again, they are damaged. I have material in my system that almost killed me - what chance do you think someone else would have with them.
You have to remember, too. Let's say someone got my donated blood and immediately broke out in babesiosis - that person would have to live with a host of non-meaningful diagnosis because this person never got a tick bite. And it's impossible to get babesiosis. . .right?
Cost on Family
I will never have children. I mean, I could get pregnant as far as I know and I actually do not want children - so, that was always there. I really never, ever want to children. I don't even like being around them, really. I'm not maternal.
As someone with all this infection, I could pass all of this onto a child in my womb or to anyone accepting my organs.
Imagine passing this on to someone else or even your child knowing it's an automatical chronic life-stealer if not death sentence.
For a long time, I wondered how many people I killed when bugs bit me and moved to someone else. I wondered if I could ever make that up. .somehow.
The Cost on Nature
F**k nature.
I am not going on a hike. I am not going on a picnic. I am not going to even walk on grass, sometimes. I am probably going to have DEET on me somewhere in a can. I am probably going to freak out at your BBQ.
And, yes, when you try to make it "ok" by telling me something about how it's not "tic season" or how fun it is or how it's not that far - YES, I want to punch you in your god-damn motherf**king face. Take your walk or hike or tell me I need to get out more and work out or something - I paid a giant fee for my love of the outdoors.
And I will god-damn punch you in your ignorant face.
Kidding. As with everything of my 15+ year story. I'll do it quietly. I shouldn't upset anyone with things they don't know or believe. I shouldn't scare people. I should just nod and smile and say "no, that's ok."
So, you, yeah, you - Stop telling me how pretty whatever nature related thing you want to walk through. It's like telling someone who just survived cancer if s/he wants to do or consume the thing that caused it in the first place. No. No. NO.
When I got married, our photographer had some places in Valley Forge Park picked out to get photos. And I was like, "Well, uhh. Maybe we go real fast? IDK, just, LOLZ, things happened. Hehe. No, it's cool."
And here I am - outside. On the grass.
Sorry for any minor meltdowns or oddness, Daniel Fullam. You see, Valley Forge Park is a hotbed of vector-borne and tick-borne illnesses. In fact, due to the deer population there are actually very unique strains of many illnesses.
But, it was really pretty and they were really pretty pictures. And I wish I didn't slightly cringe every time I saw the outdoor ones. As with everything, you must endure it quietly and not upset the boat. You go into "I'm normal" mode and walk through the fear that was once a reality.
The Cost on Relationships
Relationships. No relationship can survive this.
As strong as you think you are, as much love as you think you have – they will be no more by the end if this sickness went through them. I was dating a guy I was going to marry when I got diagnosed. I had a ring and everything. We had known each other since 1992 and started dating in 2003. By 2008, it was no more. We never even talked again. My best friends at the time faded away – to this day, we never talk.
The friends who I maintained relationships with were far enough away from this sickness that it didn’t touch them. One was off in grad school in another state. I think I had a fight with the other one and we drifted away before coming back after I was sick.
If I was ever more thankful for a falling out with someone, it was with my BFF, Melissa. If she had been around during my sickness, I would have 100% lost her.
This is not because people are shallow or weak or anything. People are amazing if you just give them the space to be amazing.
This is a lot to deal with. A lot. I was a lot to deal with. It’s not a sign of weakness to walk away. I would have walked away from me. I had a plan to kill myself rather than live this way which is the equivalent of walking away from myself.
I do believe if I had cancer or an acceptable sickness, there would have been a better chance of these people staying around. Then maybe the old additive of “your real friends hang around” would apply.
With tick-borne illnesses – no. They were all real friends. And they are all real humans. They cannot endure this. Not for this long. Not with these unknowns.
I would gladly welcome back any friends I "lost touch" with. I just worry that maybe they will remind me of what it was like when I was sick. What if them leaving then marked them with what all of this feel like and I will see them and it will all come back in my mind and I won't be able to say anything but, "You see, I was just really sick."
Heh. . .heh.
And. . .
I work very hard. I have a husband. And a house. And a cat. And a blog. I'm so lucky. Even with my lack of what I should have been or would have been or could have been - even if people telling me about how I need to travel to places or do things that I can't - I am so amazingly lucky.
I have so much more than most Lymies will ever have. In a very real well, I am someone else’s dream.
I am the embodiment unattainable future for most people infected with tick-born illnesses. I am very rare for anyone who went through what I have. Most never got this far. To most, I am the dream they will never obtain.
I can make new dreams. That's what separates me for those who were never sick and those who will never get better.
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