I know.. its been a while. Things got really complicated for me a week or so agao, really complicated really fast. And I havent had the energy or the willpower to do anything up until now. I don't have much time to post but my friend Carter wants to do a video blog tomorrow sometime or maybe Monday. I will be going in for surgery to have a new tumor removed around 3:30 tomorrow in the afternoon. Wish me luck will you? But trust me, you haven't missed much, but in case you're really wondering, here's how its been:
After Jase died, I wasn't so sure what to do anymore, I felt like I was loosing everyone, even myself, and who knows, maybe I really am. I was irritable to the point where no one wanted to talk to me, I would laugh or cry or rage at the slightest moment. I wasn't in control of myself, I just.... I kind of lost it for a while there. Im not going to lie to you... I really did loose it..... I forgot things, important things, I would forget where I was, I wouldn't sleep, eat, talk, and when I did, I would talk about Nico like he was still here, like he just popped out for a drink or to go to the bathroom....damn... that hurts even to say after the fact......
Anyway, the doctors became concerned and they kept me under close survelliance, I passed out in the middle of one of the classes I had to attend at the hospital, (we have the option to try and continue our education if we wanted, all of my friends and I decided we would try), they told me afterwards that I had started to laugh at something and then just stopped laughing and keeled over. Needless to say I don't remember a thing. But honestly, nothing intresting happened after that, just the normal rounds of therapy, chemo, more therapy, more chemo, friends consouling remarks and doctors complicated answers.
I've been getting questions lately, alot of them actually were to my friends, asking them what it was like to be friends with someone with a terminal illness, or asking how hard it was for them with their struggles and so on and so forth, Carter said that if she does the blog video that she will answer any questions you have for her, about her, or me, or anything, just leave them in the comments. But anyhow, a question which I get surprisingly alot is this "So, are you better yet?" I can't tell you how many times i have gotten that in the past few days, and no, im not better yet, in fact, believ it or not, IM DYING! So yea, its kind of annoying and frustruating to have healthy people ask you if you're better yet when you have a terminal illness, and they ask that like its just a cold or the flu that you can take medication for and be done with it.... hell I wish.. I really do.....
One of Carter's friends asked me to speak live at her school about bullying and about what my life is like etc. I told her I would do it through skype. Im planning on next Tuesday hopefully. Im excited to speak about things that the kids would want to talk about or know about (its a high school/college) but im nervous as well. Anyways, Ive gotta go and sleep, big day tomorrow. I'll update by MOnday at the latest.
Wish you well,
A.G
Saturday, September 5, 2015
Sunday, August 23, 2015
In loving memory of Jase
Its getting worse. No pretenses anymore. No fake smiles, no masks, cover ups or stories. Its gettign worse. You know that nauseous feeling you get on a rollercoaster or if you read in the car? Or if you've worked out after you ate. Thats what I feel like now, but it's different too, I can't keep any food down. When I stand I feel like I'm going to either fall over or throw up, one of the two. When you loose someone close to you... its very hard...... I lost a friend very close to me today. R.I.P Jase Wynchestor. He suffered from schizophrenia. He told me he was getting better. But he wasn't, he wasn't at all. And though this hurts to talk about, espically now, so soon... but I feel like I need to.. to let it out. If I don't.. well...... in memory of him, here is my last moments with Jase.
"How are you feling man?" Jase asks me, leaning back against the wall, fiddling with his hospital band. "Okay I guess" I lied. "You?" He nods but doesn't answer at fist. I frown, "Jase"
"Huh?"
"You okay?"
"Yea, I'm okay."
He smiles at me and I believe him. Maybe I shouldn't have, but I did. "Do you want to go out and get something for lunch?" I nod, hoping I can manage to eat something. I don't want him worrying about me so I say yes. "You want to drive or should I?" Jase grins at me. "What'ya worried about Pegleg?" he jokes "scared I'll start seeing ghosts and run us into a tree screaming Allons-y?" I grin and shove him but can't help thinking that yes, thats exactly what I was worried about. The medicine they had him on stopped him from acting disconnected, but it did little to effect the hallucinations. At the time I did not know that.
Carter jumped in the backseat after us and we headed to a small cafe about a block down from the hospital. "You okay with this Carter?" I looked at her knowing she would tell me the truth. She nervously smiled "sure" she replied "i'll be fine." Jases' fingers drummed on the wheel and he shook himself as if from a doze. "You good?" I asked. "fine." he said, and we pulled in. Carter hopped out and unfolded my wheelchair from the back of the van, I pulled back the sliding red door and caught the staring eyes of a family just leaving. They stared at me for a moment, their eyes traveling down the length of my body and widening. I sighed inwardly, but smiled and waved. The husband stepped out from behind his wife and as I settled myself into my chair he approached me. I looked at him curiously and I could feel Carter and Jase tense behind me. He stuck out his left hand, and I saw his right was missing, the whole arm actually. "Jared Jenson" he said "you my son, are one hell of a fellow." I grinned at him and shook his hand. "And you sir," I replied "are one hell of a man." He grinned and I smiled back at him. happy that he understood. "I've met you before I believe." I said, "you own the antique store down the road." Jensons' smile brightened. "That's right" he said, "you're a good man you know, don't let any judgemental crackpots get you down," he nodded knowingly to the cafe, "new staff" he elaborated. "Well" I said laughing "when they see that they've got two of us in one day I bet you they'll have even more stories to tell." He hooted with laughter, patted my shoulder, and then he and his family left. "See you around kids." Jenson called out of the window. We waved, then headed inside.
It so happens that on this earth there are stupid and inconsiderate people, it is unfortunate but true. I never thought I would be surprised by the conversations I hold with them, but that was before I met Cassie Ann. Cassie Ann was our waitress, and boy was she one hell of a waitress. She walked over to our table, bounced is more of the correct term, and asked what we wanted to eat. She popped her gum and then nearly choked on it as she saw that I was in fact missing the limbs that most people still have attatched to their hips. "You want a side of chicken LEGS with that sandwhich?" She asked me in a nasal voice and then cracked up at her own joke and walked away laughing. "He's vegatarian!" Jase called after her, "but while you're back there you might want to pick up your brains and your decency, I think you forgot them."
I looked at him surprised and then burst out laughing, I have honestly never seen him so angry. After that we just talked, about everything, about nothing, about the sun and the moon and the stars, about us, about home, about rude waitresses, about kind husbands. We were just three normal friends, eating lunch together, as we should be.
I won't say everything because I don't think I can. All I can say is that when Jase was found on the floor of his room, overdosed on pills, we didn't expect it. None of us did. We can't predict these things, we don't know when they will happen or how. All I know is that all around me, I'm loosing everyone I love. This is three out of 6, and I can't help wondering, who will be next........
In loving memory of Jase Wynchestor:
Your spirit will travel the skies in the form it always has, and when the moon is bright and the sky is clear I will look up and see you.
"How are you feling man?" Jase asks me, leaning back against the wall, fiddling with his hospital band. "Okay I guess" I lied. "You?" He nods but doesn't answer at fist. I frown, "Jase"
"Huh?"
"You okay?"
"Yea, I'm okay."
He smiles at me and I believe him. Maybe I shouldn't have, but I did. "Do you want to go out and get something for lunch?" I nod, hoping I can manage to eat something. I don't want him worrying about me so I say yes. "You want to drive or should I?" Jase grins at me. "What'ya worried about Pegleg?" he jokes "scared I'll start seeing ghosts and run us into a tree screaming Allons-y?" I grin and shove him but can't help thinking that yes, thats exactly what I was worried about. The medicine they had him on stopped him from acting disconnected, but it did little to effect the hallucinations. At the time I did not know that.
Carter jumped in the backseat after us and we headed to a small cafe about a block down from the hospital. "You okay with this Carter?" I looked at her knowing she would tell me the truth. She nervously smiled "sure" she replied "i'll be fine." Jases' fingers drummed on the wheel and he shook himself as if from a doze. "You good?" I asked. "fine." he said, and we pulled in. Carter hopped out and unfolded my wheelchair from the back of the van, I pulled back the sliding red door and caught the staring eyes of a family just leaving. They stared at me for a moment, their eyes traveling down the length of my body and widening. I sighed inwardly, but smiled and waved. The husband stepped out from behind his wife and as I settled myself into my chair he approached me. I looked at him curiously and I could feel Carter and Jase tense behind me. He stuck out his left hand, and I saw his right was missing, the whole arm actually. "Jared Jenson" he said "you my son, are one hell of a fellow." I grinned at him and shook his hand. "And you sir," I replied "are one hell of a man." He grinned and I smiled back at him. happy that he understood. "I've met you before I believe." I said, "you own the antique store down the road." Jensons' smile brightened. "That's right" he said, "you're a good man you know, don't let any judgemental crackpots get you down," he nodded knowingly to the cafe, "new staff" he elaborated. "Well" I said laughing "when they see that they've got two of us in one day I bet you they'll have even more stories to tell." He hooted with laughter, patted my shoulder, and then he and his family left. "See you around kids." Jenson called out of the window. We waved, then headed inside.
It so happens that on this earth there are stupid and inconsiderate people, it is unfortunate but true. I never thought I would be surprised by the conversations I hold with them, but that was before I met Cassie Ann. Cassie Ann was our waitress, and boy was she one hell of a waitress. She walked over to our table, bounced is more of the correct term, and asked what we wanted to eat. She popped her gum and then nearly choked on it as she saw that I was in fact missing the limbs that most people still have attatched to their hips. "You want a side of chicken LEGS with that sandwhich?" She asked me in a nasal voice and then cracked up at her own joke and walked away laughing. "He's vegatarian!" Jase called after her, "but while you're back there you might want to pick up your brains and your decency, I think you forgot them."
I looked at him surprised and then burst out laughing, I have honestly never seen him so angry. After that we just talked, about everything, about nothing, about the sun and the moon and the stars, about us, about home, about rude waitresses, about kind husbands. We were just three normal friends, eating lunch together, as we should be.
I won't say everything because I don't think I can. All I can say is that when Jase was found on the floor of his room, overdosed on pills, we didn't expect it. None of us did. We can't predict these things, we don't know when they will happen or how. All I know is that all around me, I'm loosing everyone I love. This is three out of 6, and I can't help wondering, who will be next........
In loving memory of Jase Wynchestor:
Your spirit will travel the skies in the form it always has, and when the moon is bright and the sky is clear I will look up and see you.
Friday, August 14, 2015
Times Like These
Its at times like these when I look back on my life and think, would I have changed anything? Its a question I get alot. And no, to be honest I don't think I would. When I first started this blog, it was more of a past time, just to get my feelings out, to write where no one i knew would see it. But now? Now I want people to see my story. I want people to know what it's like. I want them to learn from me and about me. I want to open their eyes and teach them new things if I can. I know I've been kind of bad about bloggin lately but I'm going to try and get better at it. Its just been difficult recently. So anyway, here goes...
My morning started pretty much the same as always. I woke up, stared at the pale blue ceiling above me for a few moments, then heaved myself into my wheelchair and took a fast shower. Now you see, for most people a shower is one of the simplest things you could do, washing your hair, letting the warm water cascade down your back, easy right? Well, unfortunately, I am not most people. I am 21 now, missing two legs, have half a pair of lungs, questionable eyesight, and a worsening heart.
I swing myself over the small lip of the walk in shower (oh the irony ) and lean back against the special chair they bolted into the white floor. Hot water runs around my ears and trickles down my back and I sigh, content. I close my eyes and my mind drifts to moments like this that I shared with Nico. I shake my head, angry at myself for..... for I dont know what, but angry all the same. I wash quickly, rinse, then turn off the water and slide out of the chair, catching myself before I tip backwards. My heart thumps in my chest from even that slight exertion and I force myself to breathe. Slowly, my heart rate slows and I get dressed, wincing as the stitches from the most recent of my surgeries pulls.
I wheel myslef down the hallway, looking for no one in particular but spotting Carter. I want to go and talk, but for some reason I don't, I hold myself back. What's wrong with you? I ask myself and roll towards her. "What time is it?" I say, because that's the only thing I can think of to say. She jumps, pulling on the ends of her sweater and turns to face me. "around noon I think" she replies, "you just wake up?" I nod. She nods. We both turn to look out the window. Her hand rests easily on my shoulder, "We should go out somwhere" she says softly. I look at her. "Where?" I ask. She sighs deeply, running her thin fingers through her short dark hair, "I don't know" she says, "I just.... I just want to get out." I nod again, for some reason, not knowing what to say. "You okay?" she looks at me with concern. Pain flares in my body and I jerk my head in a nod, "fine" I say shortly. "Are you sure yo-" "I said i'm fine!" my voice rises and Carter's eyes widen in shock. Then her lips purse and she glares at me. "Aden, no you're not. Don't tell me you're fine I can see you're not, I know you well enough by now to know when you're in pain. Why don't you just take pain killers?" I smooth my shirt with a shaking hand and take a deep breath before I answer.
"Because maybe I want to be in pain, maybe I want to feel this ache, the ache that I know full well will never leave me as long as im alive, maybe I want to mourn, to grieve, like a normal person, maybe I want to be alone for a while, or the rest of my life. What if, just for a second, I could cry, and then I think I'd be okay."
Carter says nothing but wraps her arms around me, tucking her head into my shoulder. "Then I'll cry with you." She whispers. And I hug her back, aware of her bones pressing into my stomach, aware of the chair I sit in, of the nurses in the halls, of the sunlight through the glass window. I am aware of everything, and yet, of nothing.
My morning started pretty much the same as always. I woke up, stared at the pale blue ceiling above me for a few moments, then heaved myself into my wheelchair and took a fast shower. Now you see, for most people a shower is one of the simplest things you could do, washing your hair, letting the warm water cascade down your back, easy right? Well, unfortunately, I am not most people. I am 21 now, missing two legs, have half a pair of lungs, questionable eyesight, and a worsening heart.
I swing myself over the small lip of the walk in shower (oh the irony ) and lean back against the special chair they bolted into the white floor. Hot water runs around my ears and trickles down my back and I sigh, content. I close my eyes and my mind drifts to moments like this that I shared with Nico. I shake my head, angry at myself for..... for I dont know what, but angry all the same. I wash quickly, rinse, then turn off the water and slide out of the chair, catching myself before I tip backwards. My heart thumps in my chest from even that slight exertion and I force myself to breathe. Slowly, my heart rate slows and I get dressed, wincing as the stitches from the most recent of my surgeries pulls.
I wheel myslef down the hallway, looking for no one in particular but spotting Carter. I want to go and talk, but for some reason I don't, I hold myself back. What's wrong with you? I ask myself and roll towards her. "What time is it?" I say, because that's the only thing I can think of to say. She jumps, pulling on the ends of her sweater and turns to face me. "around noon I think" she replies, "you just wake up?" I nod. She nods. We both turn to look out the window. Her hand rests easily on my shoulder, "We should go out somwhere" she says softly. I look at her. "Where?" I ask. She sighs deeply, running her thin fingers through her short dark hair, "I don't know" she says, "I just.... I just want to get out." I nod again, for some reason, not knowing what to say. "You okay?" she looks at me with concern. Pain flares in my body and I jerk my head in a nod, "fine" I say shortly. "Are you sure yo-" "I said i'm fine!" my voice rises and Carter's eyes widen in shock. Then her lips purse and she glares at me. "Aden, no you're not. Don't tell me you're fine I can see you're not, I know you well enough by now to know when you're in pain. Why don't you just take pain killers?" I smooth my shirt with a shaking hand and take a deep breath before I answer.
"Because maybe I want to be in pain, maybe I want to feel this ache, the ache that I know full well will never leave me as long as im alive, maybe I want to mourn, to grieve, like a normal person, maybe I want to be alone for a while, or the rest of my life. What if, just for a second, I could cry, and then I think I'd be okay."
Carter says nothing but wraps her arms around me, tucking her head into my shoulder. "Then I'll cry with you." She whispers. And I hug her back, aware of her bones pressing into my stomach, aware of the chair I sit in, of the nurses in the halls, of the sunlight through the glass window. I am aware of everything, and yet, of nothing.
Tuesday, August 11, 2015
OKay so its been one hell of a year
Okay, So its been one hell of a year.
Cyrently im not feeling so great but im forcing myself to type this. This is somethign I thought of while at the other hospjtal, it's something Nico actually wanted to do. Its not anythign really big, but I know it mwant something to him. Our gpal has always been to get our stoty out to the public and to influence poeple's lives, but not only that, we also want people to learn from our story and to better understand people who are going trhrough cancer. We wnated and stil do want people to learm from us. If im spelling anythinf wrong i apologixe, my eyesighhts not very good right now and im also not feeiing my best, bear with mw.
So heres his ides:
#Forever
#Forever means that no dat s your lasy and that you are forever jsut like your memories are forever. #Forever means forever love, forever hope, forever life, forver live, forever be, forever you. It neans dont give up. It neans dont give in. It means there is still hopw, that even though we are fighting cancer, evern though I am fihting cancer, i stiil think there is a forever out there for me. Piease use this hashtag in you bio or somewhere or even just thimk about it. Thid is not just for me and fpr Nico (R.I.P) but also for all those out there who are going through the same thing, as well as their friends amd their families. It would meam alot to me. Your support and your thoughts.... i can not tel you how much i appreciate then. And i know Nico would to.
All we havw ever wanted is too educatr people abouy our conditiom and what we go throuhg. Not only for us but dor the others ouy there who are goimg through th same thing.
~A.G
Cyrently im not feeling so great but im forcing myself to type this. This is somethign I thought of while at the other hospjtal, it's something Nico actually wanted to do. Its not anythign really big, but I know it mwant something to him. Our gpal has always been to get our stoty out to the public and to influence poeple's lives, but not only that, we also want people to learn from our story and to better understand people who are going trhrough cancer. We wnated and stil do want people to learm from us. If im spelling anythinf wrong i apologixe, my eyesighhts not very good right now and im also not feeiing my best, bear with mw.
So heres his ides:
#Forever
#Forever means that no dat s your lasy and that you are forever jsut like your memories are forever. #Forever means forever love, forever hope, forever life, forver live, forever be, forever you. It neans dont give up. It neans dont give in. It means there is still hopw, that even though we are fighting cancer, evern though I am fihting cancer, i stiil think there is a forever out there for me. Piease use this hashtag in you bio or somewhere or even just thimk about it. Thid is not just for me and fpr Nico (R.I.P) but also for all those out there who are going through the same thing, as well as their friends amd their families. It would meam alot to me. Your support and your thoughts.... i can not tel you how much i appreciate then. And i know Nico would to.
All we havw ever wanted is too educatr people abouy our conditiom and what we go throuhg. Not only for us but dor the others ouy there who are goimg through th same thing.
~A.G
Saturday, July 25, 2015
Bitter? Or not bitter?
OKAY. So maybe ive grown senile in the past few months, but I really don't need someone to tell me that loosing a loved one hurts, or how much pain it causes everyday, I dont need anyone to remind me of that. Im relatively annoyed right now... but heres how the conversation went (it was with one of my readers)
Reader: It hurts losing a loved one
Me: i know it does
Reader: And it hurts every day
Me: yes.. i know that as well..
Reader: It's like no matter how hard you try the pain never ever goes away
Me: ........
Reader: so, what are ya up to?
Me: .... seriously?.....
I just dont understand how people can be that insensitive. Sure, I act like im okay, hell ive even convinced myself that im okay. But here's the uncoulded truth.
I miss him, I miss him more then anything in this world, I barely sleep at night sometimes because I keep dreaming..... dreaming that he's back, that he's here with me, and waking up and finding that its not real hurts worse then a thousand shots. I've pushed it down, the grief and sorrow, i've let it sit. But sometimes it refuses to stay silent. Like now for instance. I guess I have good days and bad, but i'd sure as hell love to stop having bad days. I know people only tell me the truth, at least about loosing someone i love. But the matter of point is that I already know it hurts, and I really really dont need anyone to remind me of the fact even if they are just trying to be nice. Normally im fine with talking about Nico..... but not now..... i just.... id like for people to think before they talk. Like yesterday, some guy reader and some other girl reader were talking on my page and they were talking about how it must feel to die, then one of them asked me. I answered him truthfully and he told me i was lying straight to my face, he said it felt nothing like that and that if it felt as okay as i said then hed go ahead and get cancer because dying of cancer is better then dying of old age and in pain.......
If i had actually been face to face with this man i have no doubt in my mind that i would have wanted to hit him, however that display of strength is beyond me at this point so i guess hes lucky.
I just dont get how you can look at a cancer fighter and say things like that. I had hope for humanity, not now. That hope is fading.
Anyways, sorry for the rant, im going to give you guys an update on my friends becaus eyou havent heard about them in a while:
Carter is currently gaining a bit of weight though she still only weighs 90 pounds. Tom visits me once or twice a week, its good to see his face again. Jase and Lane are finding every oppotunity to make me laugh, like any one might be my last, yesterday they jousted eachother with curtian rods and whip cream pies as shields and mens underwear for helmets. As you may imagine, it was Lane who got pied in the face (jase is a tad more athletic). I do have some bad news though, Jake, the blind boy who became like my second younger brother, you remember him? He died a week ago. The doctors told us it was unexpected heart failure, they arent sure exaclty what caused it, and even if they know now they wouldn't be able to tell me, doctor paitent confidentialty. Im worried about my freinds, Jase told me that while i was gone last time, Carter stopped eating so well and Lane started becoming depressed..... I can only dread what would happen if I were to die, if something went wrong and I didnt recover. Im not even worried about myself anymore, im past that, part of me doesnt care, I just want to know that when i explode i wont be taking out more people with me. I want to make sure they'll be okay...... and because there is no positive way to know that, it terrifies me.
Reader: It hurts losing a loved one
Me: i know it does
Reader: And it hurts every day
Me: yes.. i know that as well..
Reader: It's like no matter how hard you try the pain never ever goes away
Me: ........
Reader: so, what are ya up to?
Me: .... seriously?.....
I just dont understand how people can be that insensitive. Sure, I act like im okay, hell ive even convinced myself that im okay. But here's the uncoulded truth.
I miss him, I miss him more then anything in this world, I barely sleep at night sometimes because I keep dreaming..... dreaming that he's back, that he's here with me, and waking up and finding that its not real hurts worse then a thousand shots. I've pushed it down, the grief and sorrow, i've let it sit. But sometimes it refuses to stay silent. Like now for instance. I guess I have good days and bad, but i'd sure as hell love to stop having bad days. I know people only tell me the truth, at least about loosing someone i love. But the matter of point is that I already know it hurts, and I really really dont need anyone to remind me of the fact even if they are just trying to be nice. Normally im fine with talking about Nico..... but not now..... i just.... id like for people to think before they talk. Like yesterday, some guy reader and some other girl reader were talking on my page and they were talking about how it must feel to die, then one of them asked me. I answered him truthfully and he told me i was lying straight to my face, he said it felt nothing like that and that if it felt as okay as i said then hed go ahead and get cancer because dying of cancer is better then dying of old age and in pain.......
If i had actually been face to face with this man i have no doubt in my mind that i would have wanted to hit him, however that display of strength is beyond me at this point so i guess hes lucky.
I just dont get how you can look at a cancer fighter and say things like that. I had hope for humanity, not now. That hope is fading.
Anyways, sorry for the rant, im going to give you guys an update on my friends becaus eyou havent heard about them in a while:
Carter is currently gaining a bit of weight though she still only weighs 90 pounds. Tom visits me once or twice a week, its good to see his face again. Jase and Lane are finding every oppotunity to make me laugh, like any one might be my last, yesterday they jousted eachother with curtian rods and whip cream pies as shields and mens underwear for helmets. As you may imagine, it was Lane who got pied in the face (jase is a tad more athletic). I do have some bad news though, Jake, the blind boy who became like my second younger brother, you remember him? He died a week ago. The doctors told us it was unexpected heart failure, they arent sure exaclty what caused it, and even if they know now they wouldn't be able to tell me, doctor paitent confidentialty. Im worried about my freinds, Jase told me that while i was gone last time, Carter stopped eating so well and Lane started becoming depressed..... I can only dread what would happen if I were to die, if something went wrong and I didnt recover. Im not even worried about myself anymore, im past that, part of me doesnt care, I just want to know that when i explode i wont be taking out more people with me. I want to make sure they'll be okay...... and because there is no positive way to know that, it terrifies me.
The old times and the new
7/25/15
There is hope. I suppose that there is always hope as long as we choose to seek it out, but hope is one of those things which can be easy for one person and hard for the next. And thats what it is to me. When i started this journey, my heart was full, and not of fear, but of hope. I had hope in living, hope in surviving. I still do, just not as much as I once did.
Recently on another website i published a question and answer book, in hope (ther goes that word again) that i could shed light on the dark room that is the world of my illness. I got immediate responses from about fifty or sixty people asking hundreds of questions. A couple of them stood out in my mind.
Q: "After going through all of this, after seeing what you have seen and experiencing hat you have experienced, how are you still so strong?"
A: "Im not."
Q: "What got you through you journey, and what gets you through now?"
A: "Nico, and now, his memory"
Q: "It seems like at a very young age you had to become independent and take care of yourself, do you find it hard to depend so much on others now?"
A: "Yes, for me that is one of the hardest things ive had to do. To force myself to trust others when every instinct in my body is telling me no one can be trusted. To depend on people now, especially now, especially because i am at my most venerable.... to do that and to do it everyday is incredibly difficult."
Q: "If you could, would you go back and change things so this didnt happen to you?"
A: "You might say im crazy, but no, i wouldnt, because this whole experience has made me a better person so far, i have become more then i was before, i can appreciate every breath i take and marvel at every beat of my heart and know that those things could be snatched from me at any second. That is something that i wish i didnt know, but at the same time it is something that i wouldnt wish upon anyone else, so if getting rid of my disease caused another to get it, then no, i would never change a thing. Also, what i have been through and what i am going through has changed me for the better, it has allowed me to meet people i would never have met otherwise. And though what i am going through is most likely some version of hell, i would not chnage it, because to change it would be to change me, and right now, i quite like who i am."
Tomorrow I am leaving again for two weeks, I had the first round of Photodynamic therapy and now im starting Hyperthermia. Its going to be a rough two weeks and im going to need all the strength i can get. Wish me luck.
Till next time
~A.G
There is hope. I suppose that there is always hope as long as we choose to seek it out, but hope is one of those things which can be easy for one person and hard for the next. And thats what it is to me. When i started this journey, my heart was full, and not of fear, but of hope. I had hope in living, hope in surviving. I still do, just not as much as I once did.
Recently on another website i published a question and answer book, in hope (ther goes that word again) that i could shed light on the dark room that is the world of my illness. I got immediate responses from about fifty or sixty people asking hundreds of questions. A couple of them stood out in my mind.
Q: "After going through all of this, after seeing what you have seen and experiencing hat you have experienced, how are you still so strong?"
A: "Im not."
Q: "What got you through you journey, and what gets you through now?"
A: "Nico, and now, his memory"
Q: "It seems like at a very young age you had to become independent and take care of yourself, do you find it hard to depend so much on others now?"
A: "Yes, for me that is one of the hardest things ive had to do. To force myself to trust others when every instinct in my body is telling me no one can be trusted. To depend on people now, especially now, especially because i am at my most venerable.... to do that and to do it everyday is incredibly difficult."
Q: "If you could, would you go back and change things so this didnt happen to you?"
A: "You might say im crazy, but no, i wouldnt, because this whole experience has made me a better person so far, i have become more then i was before, i can appreciate every breath i take and marvel at every beat of my heart and know that those things could be snatched from me at any second. That is something that i wish i didnt know, but at the same time it is something that i wouldnt wish upon anyone else, so if getting rid of my disease caused another to get it, then no, i would never change a thing. Also, what i have been through and what i am going through has changed me for the better, it has allowed me to meet people i would never have met otherwise. And though what i am going through is most likely some version of hell, i would not chnage it, because to change it would be to change me, and right now, i quite like who i am."
Tomorrow I am leaving again for two weeks, I had the first round of Photodynamic therapy and now im starting Hyperthermia. Its going to be a rough two weeks and im going to need all the strength i can get. Wish me luck.
Till next time
~A.G
Saturday, July 18, 2015
Hello again
We got in late last night, I was so tired that i fell asleep in the car ride over to home. Home being the hospital i normally stay at. It's kind of funny to think that I see that place as home now, but i really do. And maybe thats a good thing. As of now i feel very crappy and dont have the energy to type and kind of feel naseous, Im going to try and get some rest. I'll blog tomorrow for reak and tell you guys all about the therapies and what went on for the two weeks i was gone. The doctors said i would get worse before i get better. I can only wait and see.
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