I just wanted you to now I shared your story of your kindergarten experiences with Linnea. The slide, the chalkboard, the school bus fall.
Thank you for sharing these memories. As I wrote before, it is a powerful story - a narrative that informs and teaches.
No rush, but don’t forget to continue with first grade some day.
Sunday, October 31, 2010
Friday, October 29, 2010
Thom
Nice. Did you see this piece when I posted it? Ir's on my public blog. There are some similar sentiments in it.
http://bluedollarbill.blogspot.com/2010/07/parking-envy_3035.html
http://bluedollarbill.blogspot.com/2010/07/parking-envy_3035.html
Amy
Raymond and I are leaving with the boys to spend Halloween with my parents and family in Sheffield PA. The below thought came to me, and I want to share with you. Please note that in the below when I say you, it is a third person you.
You have given me the label of disability and, therefore, have preconceived ideas as to how I am to behave and react in your world. However, you have overlooked that I am a human being who every day faces the same challenges that any other mother, wife, daughter, sister, and friend does.
But in your mind, disability is a cloud that engulfs me, guides me, and dictates to others who I should be. And, if I challenge your beliefs and expectations, you conclude that I have a chip on my shoulder, have something to prove, or have a rotten attitude. I have apologized to you many times for not living up to your label, when are you going to forgive me and stop hating me?
You have given me the label of disability and, therefore, have preconceived ideas as to how I am to behave and react in your world. However, you have overlooked that I am a human being who every day faces the same challenges that any other mother, wife, daughter, sister, and friend does.
But in your mind, disability is a cloud that engulfs me, guides me, and dictates to others who I should be. And, if I challenge your beliefs and expectations, you conclude that I have a chip on my shoulder, have something to prove, or have a rotten attitude. I have apologized to you many times for not living up to your label, when are you going to forgive me and stop hating me?
Monday, October 25, 2010
Amy
I just want to remind you that what I shared with you about Raymond's anxiety was an issue when we were newly married because the First Gulf War was more recent for Raymond. He was in the 2nd MASH Unit in Iraq when the war started. He doesn't talk much about it anymore.
I encourage him to show his sons his uniform. I also keep his American Legion membership accurate for him.
Thank you for being proud of the vets. I think they need to hear that.
I encourage him to show his sons his uniform. I also keep his American Legion membership accurate for him.
Thank you for being proud of the vets. I think they need to hear that.
Thom
I'm surprised. We are well past the point where Nam vets were looked down upon by many. Vets (wherever they served) seem to be respected by almost all - especially grade schoolers and most especially by their sons.
I always go out of my to thank vets for their service.
The navy paid for my BA, and I would have been commissioned in June of 1970 if I hadn't been diagnosed with Hodgkin's that January.
I always go out of my to thank vets for their service.
The navy paid for my BA, and I would have been commissioned in June of 1970 if I hadn't been diagnosed with Hodgkin's that January.
Amy
My boys have brought home forms that ask if you want to bring a vet to class. Raymond is a Viet Nam and First Gulf War vet. I have encouraged him to go to his kids’ classes, but he says maybe next year.
I wish Raymond knew that there is no shame in being a vet as there is no shame as being a person with a disability. I will respect my husband’s decision not to talk to his boys’ class as a vet this year. I don’t get why he is ashamed to be a vet.
Raymond is a member or the American Legion. Why can’t he tell his sons?
I wish Raymond knew that there is no shame in being a vet as there is no shame as being a person with a disability. I will respect my husband’s decision not to talk to his boys’ class as a vet this year. I don’t get why he is ashamed to be a vet.
Raymond is a member or the American Legion. Why can’t he tell his sons?
Thom
I have other friends who have told similar stories, but it's hard to appreciate fully what you and they feel for their spouses. I do, however, know about the power of dreams and how real they can seem.
My father was a career naval officer having enlisted after high school and working his way up to commander. He fought in the Atlantic, the Pacific, North Africa, Saipan, the Marshall Islands, Guam, etc. He almost never spoke of the horrors he saw. Most of what know has been relayed to me by my mother. He must have told her in the same way Raymond tells you.
What you write has its own power.
My father was a career naval officer having enlisted after high school and working his way up to commander. He fought in the Atlantic, the Pacific, North Africa, Saipan, the Marshall Islands, Guam, etc. He almost never spoke of the horrors he saw. Most of what know has been relayed to me by my mother. He must have told her in the same way Raymond tells you.
What you write has its own power.
Amy
A Glimpse into My Reality Beyond What You Know About Raymond
This one is titled “I Married a Combat Vet”
I touch you at night to awaken you with a simple question about the day’s events. But when I touch you, you jump up with fear as if I’m going to hurt you. I feel you beside me at night, flinching at the slightest touch. You lunge at me, and I scream “It’s Amy, your wife. It’s okay.” Following my pleas, you awaken with acknowledgment that you are safe and cling to me for comfort. I don’t fear you my beloved, but am cautious not to wake you from your tortuous dreams. I hear your repeated cries in your sleep as you watch your platoon mate die a horrendous death. My love, I have heard your screams at night and relived with you your horrors as a combat vet. You talk only in your sleep about your pain, but I hear you even when you don’t hear yourself.
This one is titled “I Married a Combat Vet”
I touch you at night to awaken you with a simple question about the day’s events. But when I touch you, you jump up with fear as if I’m going to hurt you. I feel you beside me at night, flinching at the slightest touch. You lunge at me, and I scream “It’s Amy, your wife. It’s okay.” Following my pleas, you awaken with acknowledgment that you are safe and cling to me for comfort. I don’t fear you my beloved, but am cautious not to wake you from your tortuous dreams. I hear your repeated cries in your sleep as you watch your platoon mate die a horrendous death. My love, I have heard your screams at night and relived with you your horrors as a combat vet. You talk only in your sleep about your pain, but I hear you even when you don’t hear yourself.
Sunday, October 24, 2010
Amy
Can you believe I'm still in the office?
It is interesting how you tease apart fears from strengths. I'll need to give that some thought and let you know what I learn by looking inward.
Another challenge I had growing up was that service-providers seemed to be "empowered" by working with those who had disabilities. A number of the most insensitive and harsh comments I ever heard were from so called professionals in the field. Thank goodness that is changing.
I look for your next post.
It is interesting how you tease apart fears from strengths. I'll need to give that some thought and let you know what I learn by looking inward.
Another challenge I had growing up was that service-providers seemed to be "empowered" by working with those who had disabilities. A number of the most insensitive and harsh comments I ever heard were from so called professionals in the field. Thank goodness that is changing.
I look for your next post.
Amy
I very much liked #21. I understand that you are in a different place from where you were when you wrote this.
The stories and thoughts that I share with you have served as the blocks I used to build the dam that has successfully sealed my hurt, embarrassment, and isolation. Every time I share a story with you, I fear that I have removed a stone and that the dam is going to crumble and the essence of who I have become will sublimate and disperse into nothingness. Perhaps that is why I delete my stories. It is my way of resealing the dam and finding security again.
Can I trust that Linnea will never use these blurbs against me, make light of them, or think less of me as a colleague? But, of course, she is also a professional OT and understands confidentiality, right?
If you do share with Linnea, please BCC so I know what part of me may be floating around.
The stories and thoughts that I share with you have served as the blocks I used to build the dam that has successfully sealed my hurt, embarrassment, and isolation. Every time I share a story with you, I fear that I have removed a stone and that the dam is going to crumble and the essence of who I have become will sublimate and disperse into nothingness. Perhaps that is why I delete my stories. It is my way of resealing the dam and finding security again.
Can I trust that Linnea will never use these blurbs against me, make light of them, or think less of me as a colleague? But, of course, she is also a professional OT and understands confidentiality, right?
If you do share with Linnea, please BCC so I know what part of me may be floating around.
Thom
To keep our conversation going, I’m attaching #21 – which speaks to my beginning to explore what I have been through more deeply than I ever had. Please understand – again – it was a point in time on my journey and doesn’t reflect so much where I am now.
I know you are very private about these things, and I feel so privileged that you have chosen to share some of your journey with me. I hesitate to ask this and please do not hesitate to say no. You have written one or two things which I know relate directly to what to be Linnea’s research. I would love to share them with her with the understanding that they could not to be used by her unless she spoke to you about it. Again, I want to emphasize that if you are in the least uncomfortable with that, we’ll just leave it as it is now – just between us.
I know you are very private about these things, and I feel so privileged that you have chosen to share some of your journey with me. I hesitate to ask this and please do not hesitate to say no. You have written one or two things which I know relate directly to what to be Linnea’s research. I would love to share them with her with the understanding that they could not to be used by her unless she spoke to you about it. Again, I want to emphasize that if you are in the least uncomfortable with that, we’ll just leave it as it is now – just between us.
Thom
Oh, Amy. If there is one thing that you can be certain of, it is that “Linnea will never use these blurbs against [you], make light of them, or think less of [you] as a colleague?” And yes, she understands confidentiality as well as anyone I have ever known. And that includes myself – who is still carrying secrets faculty told me during my 12 years as dean, things I have never even told Civita.
I do worry about leading you somewhere you do not to wish to go. My hope would be that it is the fears that sublimate and disperse, not your essence. You are who you are, I think, not because of what you have locked away. You will be the same. Those experiences, those painful experiences, made you the strong, resilient person you are today. I do understand though, and I was even cautioned by a mutual colleague against looking inward. But I did and did not realize how much of my life I had never acknowledged. Remembering what caused those scars has caused some renewed tears as I re-experienced events, but as I got comfortable with where I had been and what I had experienced, I found I was even stronger than before. Still the same person but somehow better. More at peace.
Tell me stories at your pace. When the spirit moves, write. I’ll continue to share some of mine with you regardless. We should chat sometime.
And, by the way, I saved your stories thinking that someday you might want them back, not for any other reason. Did you find out if your mother had kept the ones you wrote long ago?
Certainly if anything is shared, I shall let you know. Linnea may say she doesn’t have a need to know anyway.
I do worry about leading you somewhere you do not to wish to go. My hope would be that it is the fears that sublimate and disperse, not your essence. You are who you are, I think, not because of what you have locked away. You will be the same. Those experiences, those painful experiences, made you the strong, resilient person you are today. I do understand though, and I was even cautioned by a mutual colleague against looking inward. But I did and did not realize how much of my life I had never acknowledged. Remembering what caused those scars has caused some renewed tears as I re-experienced events, but as I got comfortable with where I had been and what I had experienced, I found I was even stronger than before. Still the same person but somehow better. More at peace.
Tell me stories at your pace. When the spirit moves, write. I’ll continue to share some of mine with you regardless. We should chat sometime.
And, by the way, I saved your stories thinking that someday you might want them back, not for any other reason. Did you find out if your mother had kept the ones you wrote long ago?
Certainly if anything is shared, I shall let you know. Linnea may say she doesn’t have a need to know anyway.
Saturday, October 23, 2010
Amy
No I don't have the song. I can find it on youtube, but I'm not sure if youtube conveys the same meaning.
Glad you understand now why I like the song and its personal meaning to me.
Glad you understand now why I like the song and its personal meaning to me.
Thom
I love your stories. Now I know why you wanted Rod to sing it. He has written a lot of songs with very personal lyrics.
Do you have the album with that song on it? If not, I can make a CD for you.
Do you have the album with that song on it? If not, I can make a CD for you.
Amy
This is about what the “Coming of the Snow” meant to me.
In May 2009, I had my last surgery for cancer treatment. I looked at every sunrise as a new and beautiful day to spend with my children. I cherished every full moon and new bloom on the honeysuckles. I was alive and grateful to spend each day with my children. I celebrated the first day of summer and the first day of autumn. I was alive.
Others noticed that my hair had grown back and immediately concluded my “cancer” was gone as if I had just gotten over a cold. What they did not know is that cancer is a sentient and even if its life has been purged from your body, it lives in your consciousness.
As autumn turned into winter, I anticipated the first snow. The first snow always brought me joy. But this year it was different, it was the first winter since cancer invaded my life. I was lost and searching for the new me. A dear friend shared with me a song titled “The Coming of the Snow.”
For me this song was not about going home, but about finding myself and rediscovering my love for life, full moons, falling leaves, and the first snow of the season. I cannot wait for the “Coming of the Snow” this year. I will be out there catching snowflakes with my children.
In May 2009, I had my last surgery for cancer treatment. I looked at every sunrise as a new and beautiful day to spend with my children. I cherished every full moon and new bloom on the honeysuckles. I was alive and grateful to spend each day with my children. I celebrated the first day of summer and the first day of autumn. I was alive.
Others noticed that my hair had grown back and immediately concluded my “cancer” was gone as if I had just gotten over a cold. What they did not know is that cancer is a sentient and even if its life has been purged from your body, it lives in your consciousness.
As autumn turned into winter, I anticipated the first snow. The first snow always brought me joy. But this year it was different, it was the first winter since cancer invaded my life. I was lost and searching for the new me. A dear friend shared with me a song titled “The Coming of the Snow.”
For me this song was not about going home, but about finding myself and rediscovering my love for life, full moons, falling leaves, and the first snow of the season. I cannot wait for the “Coming of the Snow” this year. I will be out there catching snowflakes with my children.
Friday, October 22, 2010
Thom
Don’t delete your stories. They are wonderful. They are not something to hide, and you write very well.
And you shouldn’t hide – there is nothing about you that should fear your standing up and shouting here I am.
Judgment, classification, labeling, etc – you’ll get none of that from me. My older daughter, Amy, claims I am the most non-judgmental person she has ever met.
I’m attaching #11 which speaks a bit to how people view you, but please remember these are things I wrote last year during a period of change and exploration of my “scars.” In some sense it no longer applies, but the concern is not totally gone.
And you shouldn’t hide – there is nothing about you that should fear your standing up and shouting here I am.
Judgment, classification, labeling, etc – you’ll get none of that from me. My older daughter, Amy, claims I am the most non-judgmental person she has ever met.
I’m attaching #11 which speaks a bit to how people view you, but please remember these are things I wrote last year during a period of change and exploration of my “scars.” In some sense it no longer applies, but the concern is not totally gone.
Thom
Woohoo - you, go girl.
I love it. I don’t like that you have to feel that way, of course, but I am glad you’re giving that anger a voice. Yay, you.
I love it. I don’t like that you have to feel that way, of course, but I am glad you’re giving that anger a voice. Yay, you.
Amy
As I recover emotionally from cancer and the treatment, I've been told that I will find "a new normal." I'm still searching for who I am now. So I get your post.
This post reminds me of one of those occasional thoughts that pop into my head and that I'm finally writing down. It goes something like this:
You have already decided that I am a trouble-maker, that I think I’m special, and that I expect the world to change for me. You’ve accused me of being anti-social, of talking to myself, and never looking up as others pass me by in the hallway. You complain because I don’t speak to you when I enter the room. You’re jealous that I have adaptive equipment which you think I don’t deserve. You place objects in my path so that I trip. You taunt and tease me until I blow and then point to the superiors and say “Look, I told you not to hire disabled people, they are nothing but trouble makers.”
This post reminds me of one of those occasional thoughts that pop into my head and that I'm finally writing down. It goes something like this:
You have already decided that I am a trouble-maker, that I think I’m special, and that I expect the world to change for me. You’ve accused me of being anti-social, of talking to myself, and never looking up as others pass me by in the hallway. You complain because I don’t speak to you when I enter the room. You’re jealous that I have adaptive equipment which you think I don’t deserve. You place objects in my path so that I trip. You taunt and tease me until I blow and then point to the superiors and say “Look, I told you not to hire disabled people, they are nothing but trouble makers.”
Thom
I have no sensation or motor function in my left arm and hand. All of that radiation (the initial double course plus three or four courses after recurrences – all between 1970 and 1973) to treat my Hodgkin’s scarred the nerves in my left brachial plexus. I started to lose both sensation and function in the early 1980s as the scar tissue continued to accrete, and it’s been along slow slide over the next 20 years.
So – it doesn’t really exist for me. There is not even any kinesthetic sensation. If I don’t look, I don’t know where the arm is.
So – it doesn’t really exist for me. There is not even any kinesthetic sensation. If I don’t look, I don’t know where the arm is.
Thursday, October 21, 2010
Amy
After looking at #19, is it your left hand that does not exist for you, physically or perceptually?
No, when I first met you, I noticed nothing in particular different about you except that your gait looked tense. Probably because you weren't swinging your arm. This doesn't mean I judged you, just that I sensed your posture was different. That's all.
Thanks for telling me why.
No, when I first met you, I noticed nothing in particular different about you except that your gait looked tense. Probably because you weren't swinging your arm. This doesn't mean I judged you, just that I sensed your posture was different. That's all.
Thanks for telling me why.
Amy
After confiding in you my deepest and most vulnerable feelings and memories, I have deleted them. Why? I don't know. I guess I can't face myself in the mirror.
But, I feel so much better. You didn't judge me or try to classify my feelings. You didn't' tell me to suck it up or get over myself.
When I read your posts, I feel a sense of belongingness, as if I could have written the same words (albeit not as eloquently as you).
But, I feel so much better. You didn't judge me or try to classify my feelings. You didn't' tell me to suck it up or get over myself.
When I read your posts, I feel a sense of belongingness, as if I could have written the same words (albeit not as eloquently as you).
Thom
Great story – are you saving these? I hope so.
I’m attaching #31 which isn’t really a story but two photos – just two words plus the one word title. No one likes this one, but it does reflect an issue I struggle with.
I’m not sure of you’ll be able to make it out.
I’m attaching #31 which isn’t really a story but two photos – just two words plus the one word title. No one likes this one, but it does reflect an issue I struggle with.
I’m not sure of you’ll be able to make it out.
Amy
I have a brief thought to share.
It was mid September 1990. I was in my first year as a graduate student at Vanderbilt University. I was one of 13 students admitted to the psychology program and the first with a visual disability. For the first assignment in our statistics course we had to read The Mismeasure of Man by Steven Gould and then, in essay format, apply our knowledge of statistics and research methodology to critically analyze the reading.
As I walked into the room the on the day the assignment was returned, the professor stopped me to mention that he and the TA thought my essay was the best of all the student. I thought privately to myself “No kidding.” I always felt instructors had lower expectations of me, so when I performed even average, they were astounded. Keeping this in mind, I remain humble as not to confuse astonishment of ability, despite disability, with praise. Yes, I can read, write, and even ride a bike. Why are you surprised?
BTW: I saw Steven Gould give a talk at the Jackie Gleason Theater in Miami. Francis Crick was in the audience too. That was a cool science moment for me.
Thanks for sharing your writings. I look forward to them.
It was mid September 1990. I was in my first year as a graduate student at Vanderbilt University. I was one of 13 students admitted to the psychology program and the first with a visual disability. For the first assignment in our statistics course we had to read The Mismeasure of Man by Steven Gould and then, in essay format, apply our knowledge of statistics and research methodology to critically analyze the reading.
As I walked into the room the on the day the assignment was returned, the professor stopped me to mention that he and the TA thought my essay was the best of all the student. I thought privately to myself “No kidding.” I always felt instructors had lower expectations of me, so when I performed even average, they were astounded. Keeping this in mind, I remain humble as not to confuse astonishment of ability, despite disability, with praise. Yes, I can read, write, and even ride a bike. Why are you surprised?
BTW: I saw Steven Gould give a talk at the Jackie Gleason Theater in Miami. Francis Crick was in the audience too. That was a cool science moment for me.
Thanks for sharing your writings. I look forward to them.
Thom
In this post I was describing to a colleague the changes in my arm over a long period of time - although it occurs to me, with your vision, you may not realize how atrophied my arm is.
Anyway – not for any particular reason, I paused for a moment in my description, and the colleague quickly filled in the adjective.
Much of my earlier writing was in these very brief thoughts. The things I write now are longer and far more narrative, but they are all my story.
Anyway – not for any particular reason, I paused for a moment in my description, and the colleague quickly filled in the adjective.
Much of my earlier writing was in these very brief thoughts. The things I write now are longer and far more narrative, but they are all my story.
Tuesday, October 19, 2010
Thom
I’m thinking I wish I had been offered chemo. I never had it, but had 6 course of radiation. Plus some surgeries. My flesh – especially on the left side – is fried internally. Had I had chemo instead, I would still have use of my arm.
I don’t look back because I am alive, and had I done it differently, I might not be. I wasn’t offered a choice. Exploring those scars is teaching me a great deal about myself and has me searching for ways to share with others so that they might benefit from my story. Why should I be the only one? If others profit, it makes what I have gone through less of a negative.
These things are still so fresh for you that I am sure it’s quite difficult and painful. As time passes your perspective will change. Are you familiar with Deena Metzger?
http://www.deenametzger.com/
I’m attaching another piece that begins to speak to personal image.
I don’t look back because I am alive, and had I done it differently, I might not be. I wasn’t offered a choice. Exploring those scars is teaching me a great deal about myself and has me searching for ways to share with others so that they might benefit from my story. Why should I be the only one? If others profit, it makes what I have gone through less of a negative.
These things are still so fresh for you that I am sure it’s quite difficult and painful. As time passes your perspective will change. Are you familiar with Deena Metzger?
http://www.deenametzger.com/
I’m attaching another piece that begins to speak to personal image.
Amy
If I had one do over in life, I would not have chosen to undergo chemotherapy.
The pathologist was stern as he explained that the chance I would die in the next five years from the type of cancer I had was rather high. He blurted out the probability, but I cannot remember the exact number. In an instant, the fear of mortality overtook reality. I was in my early forties. Why should I think about death? I was the obedient and compliant patient who immediately agreed to a course of chemotherapy.
I regret this decision, not the decision to live, but the decision to allow my body to be poisoned. Chemotherapy left “internal scars” that only I can feel. It stole my dreams of having another child. Residues from the toxins still simmer and burn my body and conscious thoughts.
I wish I could be the person I was before cancer attacked me. I was once happy, carefree, strong, alert, energetic, and physically comfortable. My scars remind me of my regrets.
The pathologist was stern as he explained that the chance I would die in the next five years from the type of cancer I had was rather high. He blurted out the probability, but I cannot remember the exact number. In an instant, the fear of mortality overtook reality. I was in my early forties. Why should I think about death? I was the obedient and compliant patient who immediately agreed to a course of chemotherapy.
I regret this decision, not the decision to live, but the decision to allow my body to be poisoned. Chemotherapy left “internal scars” that only I can feel. It stole my dreams of having another child. Residues from the toxins still simmer and burn my body and conscious thoughts.
I wish I could be the person I was before cancer attacked me. I was once happy, carefree, strong, alert, energetic, and physically comfortable. My scars remind me of my regrets.
Monday, October 18, 2010
Thom
I have always been ready to write, but I just didn’t have the discipline. That I have now. I have always told my stories without hesitation to anyone, but once told they evaporated. Linnea taught me to write them down. I know my personal story is unique, but so is yours. People need to read your story. It is powerful, and they will learn from it. It teaches. It informs. It sensitizes us and humanizes us. You should share it. It is also possible that it would be good for you to tell your narrative and own it rather than suppressing it.
I had a long meeting with Linnea today as we reviewed the transcript of my interview. As it happened, there was an opportune moment to mention that we had traded a few emails regarding disability. I wish you could have seen her face light up. She was thrilled. I shared no details with her, and she did not ask. I told her, however, that there wasn’t much I could say since you wanted to keep private even that we were doing so. She was respectful of that. I wish you would reconsider what you are willing to tell her. The memories of your childhood are so important, so powerful – especially as they relate to how and why someone comes to see themselves as disabled or different.
I have attached #8. Very brief, but it arose as I was beginning to think about what has happened on the journey that is my life. It preceded my coining the Scar Trek label. Scars, once embraced, can be beautiful – evidence of our success in dealing with the challenges thrown at us. Once I again I can’t reconstruct the full context of this for you, but that is a bit of it.
I had a long meeting with Linnea today as we reviewed the transcript of my interview. As it happened, there was an opportune moment to mention that we had traded a few emails regarding disability. I wish you could have seen her face light up. She was thrilled. I shared no details with her, and she did not ask. I told her, however, that there wasn’t much I could say since you wanted to keep private even that we were doing so. She was respectful of that. I wish you would reconsider what you are willing to tell her. The memories of your childhood are so important, so powerful – especially as they relate to how and why someone comes to see themselves as disabled or different.
I have attached #8. Very brief, but it arose as I was beginning to think about what has happened on the journey that is my life. It preceded my coining the Scar Trek label. Scars, once embraced, can be beautiful – evidence of our success in dealing with the challenges thrown at us. Once I again I can’t reconstruct the full context of this for you, but that is a bit of it.
Amy
So you were not always ready to write either? I guess I need to find a reason to write. The person I have written about to you, doesn't seem real to me even though it is me.
Thanks for sharing these posts. Look forward to the next.
Thanks for sharing these posts. Look forward to the next.
Saturday, October 16, 2010
Thom
There are others I would feel I could trust with a secret; they just aren’t people in whom I have ever had much of a reason to confide. I have enormous respect for Diane Matza. If you asked her to keep something a secret, it would, indeed, remain a secret. I feel similarly about Frank Bergmann. I might put John Johnsen in that category, but I am not certain. It would probably depend on the topic as to whether I trusted him. I am certain there are others with very high ethical standards – especially among the newer faculty, but I don’t have a lot of contact with them. I know the ones I certainly would not trust. There are many who are question marks, but I wouldn’t tell them something until I knew for certain.
I have attached another brief piece I did not quite a year ago. The “Listener” refers to Linnea. She has been my memory and writing muse.
I hope I’m not “Annoying.”
I have attached another brief piece I did not quite a year ago. The “Listener” refers to Linnea. She has been my memory and writing muse.
I hope I’m not “Annoying.”
Friday, October 15, 2010
Thom
She is one of the very few people on this campus that I would trust with a secret and have trusted with secrets. Unlike many of our colleagues, if you tell her it’s just for her, that is exactly where it remains. Civita is the other one. You and I have close and dear colleagues here that I wouldn’t trust with any important confidence. Too many, in fact.
Whatever you do, don’t stop talking now. Let’s see where we can travel to in our “conversations.” Maybe we can teach other and ourselves a few things about life.
I’ll let you know if I say something to Linnea.
Whatever you do, don’t stop talking now. Let’s see where we can travel to in our “conversations.” Maybe we can teach other and ourselves a few things about life.
I’ll let you know if I say something to Linnea.
Amy
Between breast cancer awareness month and the interview with Linnea, I'm feeling off balance these days. I will have to trust you that if you share with Linnea that I've begun to talk about disability with you, she will tell nobody.
It is the most private part of who I am. I surprised myself that I even shared with you. So I guess I need a promise that Linnea will not mention this to anyone.
It is the most private part of who I am. I surprised myself that I even shared with you. So I guess I need a promise that Linnea will not mention this to anyone.
Thom
Ask for them - if for no other reason than some day your children will want them. I have all of your emails to me so far - but I save all sorts of stuff.
#17 - thank you - it's a little bit hard because these were part of a process which was very helpful to me, and I am in a slightly different place now psychologically. Plus you don't have the full sequence or all of the context. Some of them are brief because Linnea knew what was between the lines.
Would it be okay to tell her we're "talking" about these issues? I think it would please her. No details.
#17 - thank you - it's a little bit hard because these were part of a process which was very helpful to me, and I am in a slightly different place now psychologically. Plus you don't have the full sequence or all of the context. Some of them are brief because Linnea knew what was between the lines.
Would it be okay to tell her we're "talking" about these issues? I think it would please her. No details.
Amy
I really liked #17. I am not as succinct as you, but of course, you are the first person with whom I shared any stories.
I do not save my stories; I delete them. My mom has told me that when I was very young, I used to write about my experiences. She sais she saved these writings. I should ask her if I can have them back.
I wonder what I was saying.
I do not save my stories; I delete them. My mom has told me that when I was very young, I used to write about my experiences. She sais she saved these writings. I should ask her if I can have them back.
I wonder what I was saying.
Thursday, October 14, 2010
Amy
Further Thought about What's Important
I'm sorry. That pain never goes away. Amy and Megan love you so much. Evan and Nathaniel love us. One of my favorite songs is "Let It Be" by the Beatles.
I'm sorry. That pain never goes away. Amy and Megan love you so much. Evan and Nathaniel love us. One of my favorite songs is "Let It Be" by the Beatles.
Amy
Further Thought about What's Important
You should never feel guilt or believe you are being punished. With hope, you will get my point shortly. I am going to skip all that is between my Kindergarten years and fast forward to my first year of teaching as a college professor. Needless to say there is a story in the middle, but that story is not more powerful than what motivates me today to wake up and cherish the sunshine.
In January 2001, after months of trying to conceive a baby and genetic counseling, Raymond and I were expecting. That baby was never meant to be. On February 26th 2001, I had a second trimester pregnancy loss. Raymond, my husband, broke down and cried. I tried to protect him from my pain. I was brave for him but I was slipping. My heart was broken, and I was showing signs of depression.
I begged God to understand my pain. Because of God’s mercy, and despite all the doctor’s recommendations, by July 2001 Raymond and I were expecting again. We went for an ultrasound. Because of his medical training in the Army, Raymond immediately saw a blighted embryo with no heartbeat. The tech quickly hushed him and sent me to get dressed.
Guess what? There was a second fetus with a strong heartbeat and destined to develop normally. Despite the sting of losing a potential child, I was satisfied with heartbeat, albeit one.
Professionally, I was in a horrible environment. I had no support for disability needs and knew I had to get out if I was to bring a baby to full term. It was a terrible job. I was seen as someone who was one of those “trouble maker blind persons.”
So I sought a position in a small Methodist college in KY. I was awarded the position. I hid my pregnancy. Raymond stayed behind in NJ for a couple of months to fulfill our obligation to a lease. Of course, my mother, who never believed her baby with a disability would ever know the joy of marriage and a baby, insisted on coming to KY with me to keep me and my unborn baby safe until Raymond could join us.
Because of the pain of the prior pregnancy loss, I could not believe I was pregnant. I taught my courses. I found support from the students who had babies and looked up to a professor who was a woman and expecting. Raymond finally joined me in KY in late October 2001. My mother returned to her life in PA.
Despite my swelling belly and the life inside me that was thriving, I could not bring myself to believe my baby would live. I didn’t open any baby gifts or let Raymond buy furniture. Well, the baby did come on March 20, 2002 after hours of labor. He was born via an emergency cesarean section in a county hospital in southeast KY. Poor Raymond. Because in my mind I was convinced that my baby would never be born, he had only a few hours to assemble a crib, unwrap all the baby gifts, and to prepare our apartment for Nathaniel.
What does all of this have to do with disability? Even after Nathaniel was born and I knew my baby would survive, I pulled back from him. I still felt I was not good enough to be a mother. Nathaniel had black hair and brown eyes. I thanked God he didn’t have albinism and my visual disabilities. I went through the motions to care for him. When the nurses brought him to me, I would nurse him. That was my duty, but I really never thought I was a worthy human being, let alone a mother.
Then after the second night in the hospital, a nurse brought Nathaniel to me and said: “This baby needs his mother.” She handed me the baby and disappeared. I cradled Nathaniel in my left arm out of duty and looked down at his face. “Oh, my God! This baby’s face is full of contentment. He’s looking at me as if his life is perfect. He loves me and needs me. He doesn’t care that mommy can’t see. Oh, my God, I’m a mother!”
All the years and experiences between Kindergarten and the birth of my children ended up on a shelf. The pain and the stories are still somewhere deep inside me. However, they are overshadowed by the love I feel for my children.
When I first moved to Utica and started working at UC, a young woman named Megan Brown worked with me to help me overcome the visual limitations I had in the classroom. It was overwhelmingly apparent to me that she loved her daddy so much and thinks he’s perfect. Thom, I know I skipped a few years, and maybe my message was lost, but yes, your experiences have influenced me even if you were unaware.
I have told you the beginning of my story and concluded with where I am now. The pain of pregnancy loss was worse than rejection for having a disability. Does the in between matter?
Now I have to fit cancer into this schema.
If you got this far in the text, thanks for listening. BTW, I am not seeking sympathy nor do I think I’m special. Cancer has forced me to re-write my story which I haven’t done yet.
You should never feel guilt or believe you are being punished. With hope, you will get my point shortly. I am going to skip all that is between my Kindergarten years and fast forward to my first year of teaching as a college professor. Needless to say there is a story in the middle, but that story is not more powerful than what motivates me today to wake up and cherish the sunshine.
In January 2001, after months of trying to conceive a baby and genetic counseling, Raymond and I were expecting. That baby was never meant to be. On February 26th 2001, I had a second trimester pregnancy loss. Raymond, my husband, broke down and cried. I tried to protect him from my pain. I was brave for him but I was slipping. My heart was broken, and I was showing signs of depression.
I begged God to understand my pain. Because of God’s mercy, and despite all the doctor’s recommendations, by July 2001 Raymond and I were expecting again. We went for an ultrasound. Because of his medical training in the Army, Raymond immediately saw a blighted embryo with no heartbeat. The tech quickly hushed him and sent me to get dressed.
Guess what? There was a second fetus with a strong heartbeat and destined to develop normally. Despite the sting of losing a potential child, I was satisfied with heartbeat, albeit one.
Professionally, I was in a horrible environment. I had no support for disability needs and knew I had to get out if I was to bring a baby to full term. It was a terrible job. I was seen as someone who was one of those “trouble maker blind persons.”
So I sought a position in a small Methodist college in KY. I was awarded the position. I hid my pregnancy. Raymond stayed behind in NJ for a couple of months to fulfill our obligation to a lease. Of course, my mother, who never believed her baby with a disability would ever know the joy of marriage and a baby, insisted on coming to KY with me to keep me and my unborn baby safe until Raymond could join us.
Because of the pain of the prior pregnancy loss, I could not believe I was pregnant. I taught my courses. I found support from the students who had babies and looked up to a professor who was a woman and expecting. Raymond finally joined me in KY in late October 2001. My mother returned to her life in PA.
Despite my swelling belly and the life inside me that was thriving, I could not bring myself to believe my baby would live. I didn’t open any baby gifts or let Raymond buy furniture. Well, the baby did come on March 20, 2002 after hours of labor. He was born via an emergency cesarean section in a county hospital in southeast KY. Poor Raymond. Because in my mind I was convinced that my baby would never be born, he had only a few hours to assemble a crib, unwrap all the baby gifts, and to prepare our apartment for Nathaniel.
What does all of this have to do with disability? Even after Nathaniel was born and I knew my baby would survive, I pulled back from him. I still felt I was not good enough to be a mother. Nathaniel had black hair and brown eyes. I thanked God he didn’t have albinism and my visual disabilities. I went through the motions to care for him. When the nurses brought him to me, I would nurse him. That was my duty, but I really never thought I was a worthy human being, let alone a mother.
Then after the second night in the hospital, a nurse brought Nathaniel to me and said: “This baby needs his mother.” She handed me the baby and disappeared. I cradled Nathaniel in my left arm out of duty and looked down at his face. “Oh, my God! This baby’s face is full of contentment. He’s looking at me as if his life is perfect. He loves me and needs me. He doesn’t care that mommy can’t see. Oh, my God, I’m a mother!”
All the years and experiences between Kindergarten and the birth of my children ended up on a shelf. The pain and the stories are still somewhere deep inside me. However, they are overshadowed by the love I feel for my children.
When I first moved to Utica and started working at UC, a young woman named Megan Brown worked with me to help me overcome the visual limitations I had in the classroom. It was overwhelmingly apparent to me that she loved her daddy so much and thinks he’s perfect. Thom, I know I skipped a few years, and maybe my message was lost, but yes, your experiences have influenced me even if you were unaware.
I have told you the beginning of my story and concluded with where I am now. The pain of pregnancy loss was worse than rejection for having a disability. Does the in between matter?
Now I have to fit cancer into this schema.
If you got this far in the text, thanks for listening. BTW, I am not seeking sympathy nor do I think I’m special. Cancer has forced me to re-write my story which I haven’t done yet.
Thom
You are writing about your scars, and scars represent stories and battles we have won.
This short piece speaks a little bit toward what I expressed in my first response to your email.
This short piece speaks a little bit toward what I expressed in my first response to your email.
Thom
Wow. That is a powerful story - a narrative that informs and teaches. Did you share that memory with Linnea? Or did it just not come up in response to her questions? If not, can I convince you to share it with her? Please.
Tell me more. Your struggles are why I always feel guilty in saying - and even deny - that I am handicapped. I have never experienced such differential treatment, and although challenged, I have never had "real" challenges.
Tell me more. Your struggles are why I always feel guilty in saying - and even deny - that I am handicapped. I have never experienced such differential treatment, and although challenged, I have never had "real" challenges.
Amy
Thank you for sharing your communications with Linnea. This is my response:
I must have been only three-years old, but I remember my mother’s panic as she rushed to the five and dime to buy me a new outfit for a visit to the ophthalmologist. She wanted me to look pretty and normal. She was proud of me and convinced that despite my visual deficits, I had a normal brain.
I recall my first day at Kindergarten in public school even before Public Law 94-142. I felt the worry and pain in my mother’s heart. To take her pain away, I somehow figured out that if I told her I was going to college, she would be happy. When she picked me up from my first day at school on that early afternoon in September 1968, I said to her “I’m going to college some day.” She will confirm this story and repeats it over and over again.
But my need to protect my mother from her despair, soon turned into my own pain and isolation from others. During recess at Kindergarten, I did not see that the child at the bottom of the slide had not moved herself to a safer position. As I took my turn on the slide, I bumped into her, knocking her from the bottom of the slide. Although she was not hurt, I was abruptly reprimanded by my peers and banished from participation in all future group activities.
So I proceeded to move to another room and play with the colored chalk on a board with yet another banished classmate. His mother was from Korea so I guess he felt different and was banished too. The comfort and peace we found in each other was soon terminated by the teacher who harshly reminded us “Do not touch the colored chalk.”
From that moment on, I learned it was safer to sit on side lines, to lean against the step rails, or stay close to the walls out of everyone’s way. It was not just my classmates who rejected me. I soon discovered I was an “untouchable” creature.
As with all schools, there was an emergency drill exit from the back of the school bus. I waited my turn to jump from the back doors into the arms of the high school kids who stood on the pavement. When it came my turn to jump, the high school kids pulled their arms back as if I had a disease they would catch. My hands and knees hit the pavement. The impact onto the blacktop stained my white leotards.
To save my pride, I stood up as if nothing odd just happened, hoping that nobody knew I was hurt and embarrassed. I wasn’t angry or bitter. At some level, even though I was only 5, I knew I was different and that others viewed as dirty because of my disability. This was not the first time I would ever shake off the pain. First grade was next.
To be continued …
I must have been only three-years old, but I remember my mother’s panic as she rushed to the five and dime to buy me a new outfit for a visit to the ophthalmologist. She wanted me to look pretty and normal. She was proud of me and convinced that despite my visual deficits, I had a normal brain.
I recall my first day at Kindergarten in public school even before Public Law 94-142. I felt the worry and pain in my mother’s heart. To take her pain away, I somehow figured out that if I told her I was going to college, she would be happy. When she picked me up from my first day at school on that early afternoon in September 1968, I said to her “I’m going to college some day.” She will confirm this story and repeats it over and over again.
But my need to protect my mother from her despair, soon turned into my own pain and isolation from others. During recess at Kindergarten, I did not see that the child at the bottom of the slide had not moved herself to a safer position. As I took my turn on the slide, I bumped into her, knocking her from the bottom of the slide. Although she was not hurt, I was abruptly reprimanded by my peers and banished from participation in all future group activities.
So I proceeded to move to another room and play with the colored chalk on a board with yet another banished classmate. His mother was from Korea so I guess he felt different and was banished too. The comfort and peace we found in each other was soon terminated by the teacher who harshly reminded us “Do not touch the colored chalk.”
From that moment on, I learned it was safer to sit on side lines, to lean against the step rails, or stay close to the walls out of everyone’s way. It was not just my classmates who rejected me. I soon discovered I was an “untouchable” creature.
As with all schools, there was an emergency drill exit from the back of the school bus. I waited my turn to jump from the back doors into the arms of the high school kids who stood on the pavement. When it came my turn to jump, the high school kids pulled their arms back as if I had a disease they would catch. My hands and knees hit the pavement. The impact onto the blacktop stained my white leotards.
To save my pride, I stood up as if nothing odd just happened, hoping that nobody knew I was hurt and embarrassed. I wasn’t angry or bitter. At some level, even though I was only 5, I knew I was different and that others viewed as dirty because of my disability. This was not the first time I would ever shake off the pain. First grade was next.
To be continued …
Wednesday, October 13, 2010
Thom
That's a great idea - to send Tara. Good luck.
I wouldn't tell Linnea that, but I do hope you'll open up more fully to her. She is a great listener. It's not that her questions are tough; it's just that you're not used to thinking about those things. I loved it. It stretched me and taught me some things about myself. At the same time, I'm used to these conversations with her.
Your wounds are pretty fresh. I'm not surprised it's difficult to think about it. Linnea, I think, was probably more interested in your "blind" experiences - if you did talk at all about the cancer experience.
I wouldn't tell Linnea that, but I do hope you'll open up more fully to her. She is a great listener. It's not that her questions are tough; it's just that you're not used to thinking about those things. I loved it. It stretched me and taught me some things about myself. At the same time, I'm used to these conversations with her.
Your wounds are pretty fresh. I'm not surprised it's difficult to think about it. Linnea, I think, was probably more interested in your "blind" experiences - if you did talk at all about the cancer experience.
Amy
I’m not sure if I fully responded to your last message. Of course, it is fine that you share my messages with Civita. Raymond knows I have communicated with you as well.
I’ll be glad when October is over. I fully support breast awareness month; but wow, it has elicited some unwelcome memories and emotions. Even my interview with Linnea a couple weeks ago about disability was difficult. She asked some tough questions. Please don’t tell her I was rattled.
On another note, Nathaniel has come home from school recently concerned about what his friends are saying about his mommy’s being blind. For example: “Your mommy can’t be a teacher because she is blind.” So Tara Buffa, my GA and a psych-child life graduate, have gotten permission to talk to my boys’ classmates at Notre Dame about disability (actually Nathaniel’s idea). Tara attended the Utica Catholic Schools and is doing her fieldwork with Nathaniel’s teacher.
I’m really excited about this opportunity to convey a positive message about disability to children. Tara has the training to work with kids, I have the motivation. Civita my know Tara. Wish us luck as we prepare our presentation. It's a first for me.
I’ll be glad when October is over. I fully support breast awareness month; but wow, it has elicited some unwelcome memories and emotions. Even my interview with Linnea a couple weeks ago about disability was difficult. She asked some tough questions. Please don’t tell her I was rattled.
On another note, Nathaniel has come home from school recently concerned about what his friends are saying about his mommy’s being blind. For example: “Your mommy can’t be a teacher because she is blind.” So Tara Buffa, my GA and a psych-child life graduate, have gotten permission to talk to my boys’ classmates at Notre Dame about disability (actually Nathaniel’s idea). Tara attended the Utica Catholic Schools and is doing her fieldwork with Nathaniel’s teacher.
I’m really excited about this opportunity to convey a positive message about disability to children. Tara has the training to work with kids, I have the motivation. Civita my know Tara. Wish us luck as we prepare our presentation. It's a first for me.
Tuesday, October 12, 2010
Thom
Hmmm. Not in any particular order.
It's good that you don't/won't get angry. It's a huge waste of energy. I've never been one to ask myself why something happened to me. I have preferred to wonder why am I still alive and to believe there is a reason. And I want to do things that justify it.
You're not arrogant. Not in the least. Persistence is good - as is resilience. They are both qualities that help keep us alive.
I knew that Linnea had interviewed you. She interviewed me as well. She was not looking for wisdom or understanding from you - rather she wants to know your story, your narrative. When she has a number of these, she will look for the generalities - if there are any. She is trying to develop a model that speaks to dependence, independence, and interdependence and how they interrelate. Wrapped up in that is how we choose to identify ourselves. She has not said anything about your interview - only that you did one with her. Linnea and I are very close, and have spent hours talking about these issues. We try not to make much of a big deal about our friendship because people are so quick to start rumors - but people, of course, see us talking. I ask that you keep that in confidence.
I encourage you to reveal your feelings to Linnea. She is extremely professional, highly intelligent, and very mature. She knows much more about life than someone her age ought to. She would certainly tell you it's never too late to start writing. I didn't, but I had intended last summer to start dictating (to my computer) memories of all my illnesses and what I felt and still feel about them. I call it Scar Trek - a label I should copyright.
I apologize, but I did mention to Civita that we were chatting about some of these issues. She will not mention it to anyone anyway. Her only reaction was to wonder if you had ever talked to Diane - which you have. She doesn't really know the details of what you've said.
I love to write. I have always loved words, but it has been Linnea's influence - her encouragement - that has made me much more fluid at it. Spinning out a post on just about any topic that strikes my fancy is pretty easy now. It's a just do it kind of thing.
I do have many other blog essays that I have not posted publicly - most of which deal with disability or my illnesses - not so much with cancer. I'm not sure they would be helpful - although a few would resonate with you. Let me look.
I encourage you not to be embarrassed by your words (you write well) and certainly not by your story. You have a powerful narrative, and you and others would benefit from your telling it.
I'm attaching a blog address for the wife of a high school friend who has very advanced Parkinson's. If you start with the earliest posts in her archive, you'll see just how powerful our personal narratives can be. She does it mostly because it helps her.
http://day2dayparkinsons.blogspot.com/
It's good that you don't/won't get angry. It's a huge waste of energy. I've never been one to ask myself why something happened to me. I have preferred to wonder why am I still alive and to believe there is a reason. And I want to do things that justify it.
You're not arrogant. Not in the least. Persistence is good - as is resilience. They are both qualities that help keep us alive.
I knew that Linnea had interviewed you. She interviewed me as well. She was not looking for wisdom or understanding from you - rather she wants to know your story, your narrative. When she has a number of these, she will look for the generalities - if there are any. She is trying to develop a model that speaks to dependence, independence, and interdependence and how they interrelate. Wrapped up in that is how we choose to identify ourselves. She has not said anything about your interview - only that you did one with her. Linnea and I are very close, and have spent hours talking about these issues. We try not to make much of a big deal about our friendship because people are so quick to start rumors - but people, of course, see us talking. I ask that you keep that in confidence.
I encourage you to reveal your feelings to Linnea. She is extremely professional, highly intelligent, and very mature. She knows much more about life than someone her age ought to. She would certainly tell you it's never too late to start writing. I didn't, but I had intended last summer to start dictating (to my computer) memories of all my illnesses and what I felt and still feel about them. I call it Scar Trek - a label I should copyright.
I apologize, but I did mention to Civita that we were chatting about some of these issues. She will not mention it to anyone anyway. Her only reaction was to wonder if you had ever talked to Diane - which you have. She doesn't really know the details of what you've said.
I love to write. I have always loved words, but it has been Linnea's influence - her encouragement - that has made me much more fluid at it. Spinning out a post on just about any topic that strikes my fancy is pretty easy now. It's a just do it kind of thing.
I do have many other blog essays that I have not posted publicly - most of which deal with disability or my illnesses - not so much with cancer. I'm not sure they would be helpful - although a few would resonate with you. Let me look.
I encourage you not to be embarrassed by your words (you write well) and certainly not by your story. You have a powerful narrative, and you and others would benefit from your telling it.
I'm attaching a blog address for the wife of a high school friend who has very advanced Parkinson's. If you start with the earliest posts in her archive, you'll see just how powerful our personal narratives can be. She does it mostly because it helps her.
http://day2dayparkinsons.blogspot.com/
Amy
I identify with your questions.
I doubt that I will ever become angry over disability or cancer, for that matter. Does this mean I’m not an advocate of either? I don’t have the answers. However, I am a patient and persistent person. In my “arrogance” I understand we are all doing the best we can and humans are far from perfect.
Linnea interviewed me about independence and disability. I apologized to her because I couldn’t offer great wisdom or understanding about disability and independence, but I never revealed to her my true feelings, and I probably never will to anyone.
Two of my mentors from graduate school (one who has passed) encouraged me to keep a journal about my experiences as a person with a disability. I never did keep a journal and to this day am embarrassed by my own words. So please don’t tell another soul I talk to you.
On another note, my 30-year old niece has learned she has a tumor on her bladder. I am so worried for her given our family’s history with cancer. How is it you can talk about cancer and disability so eloquently? Do you have other blogs I can read? Please send links.
I doubt that I will ever become angry over disability or cancer, for that matter. Does this mean I’m not an advocate of either? I don’t have the answers. However, I am a patient and persistent person. In my “arrogance” I understand we are all doing the best we can and humans are far from perfect.
Linnea interviewed me about independence and disability. I apologized to her because I couldn’t offer great wisdom or understanding about disability and independence, but I never revealed to her my true feelings, and I probably never will to anyone.
Two of my mentors from graduate school (one who has passed) encouraged me to keep a journal about my experiences as a person with a disability. I never did keep a journal and to this day am embarrassed by my own words. So please don’t tell another soul I talk to you.
On another note, my 30-year old niece has learned she has a tumor on her bladder. I am so worried for her given our family’s history with cancer. How is it you can talk about cancer and disability so eloquently? Do you have other blogs I can read? Please send links.
Thom
You could learn to use Blogger easily. It's no harder than email, and with the preferences, you can make it private so that it essentially becomes a journal.
I have often wondered if playing in the fog of the mosquito insecticide that was spread in my neighborhood might have played a role in my Hodgkin's. I have minimal family history of cancer, and there are certainly plenty who believe all cancers to be environmentally connected somehow. I never spent much time worrying about it because it really didn't matter. I just happened, and there was no way to undo anything.
Will you feel better if you believe there is a connection to the tannery or will your guilt just get replaced with anger?
I have often wondered if playing in the fog of the mosquito insecticide that was spread in my neighborhood might have played a role in my Hodgkin's. I have minimal family history of cancer, and there are certainly plenty who believe all cancers to be environmentally connected somehow. I never spent much time worrying about it because it really didn't matter. I just happened, and there was no way to undo anything.
Will you feel better if you believe there is a connection to the tannery or will your guilt just get replaced with anger?
Amy
Maybe you didn’t mean to open the door; but you gave me a mechanism to express my thoughts (fears). I do not know how to “blog” as you.
I grew up in a town with a tannery. A number of my friends and relatives have died young from cancer. My dad blames the tanneries. Because I left Sheffield, PA when I was 17, I thought I had escaped the demons. As children we played in the creeks and drank the well water. I need to look at the statistics, but it seems too many people have died from cancer in my hometown.
I grew up in a town with a tannery. A number of my friends and relatives have died young from cancer. My dad blames the tanneries. Because I left Sheffield, PA when I was 17, I thought I had escaped the demons. As children we played in the creeks and drank the well water. I need to look at the statistics, but it seems too many people have died from cancer in my hometown.
Monday, October 11, 2010
Thom
You do me honor by sharing and by remembering something I said. There are at least two things you can count on from me - my being non-judgmental and my getting it. I am, and I do.
I'll look in my book and see if I know anyone else like you. :-)
Journals are good. Start writing before you start forgetting. That's what Linnea would tell you.
I'll look in my book and see if I know anyone else like you. :-)
Journals are good. Start writing before you start forgetting. That's what Linnea would tell you.
Amy
Thanks for your quick response and for not judging my feelings. Of course Raymond knows how I feel. He reassures me I have done nothing wrong. The judgment comes from my family in PA. I’ve looked into support groups. Diane Matza has been a tremendous support and a newly found dear friend.
I’m not looking for pity, just an answer as to what derailed me. I guess I thought I had paid my dues in life because I was born legally blind and with albinism. I found a way in my soul to deal with the bullies, skeptics, and rejections. I believed that God gave me two “normal” dark-eyed boys because I was forgiven for having a disability. I was redeemed.
Then I was diagnosed with breast cancer when my boys were just 4 and 5 years old. My way of dealing with reality (disability) was capsized and I had to search my soul for a new way of coping. I fondly remember one day shortly after my diagnosis you approached me in the hall and said something to the effect “you’ll be okay, you’re a fighter.” You didn’t judge me or pretend to be an insider. You just let me know you got it. That’s all I needed. I didn’t need sympathy or words of wisdom. I just needed to know someone got it.
As far as support groups, I wish I knew another woman who had a genetic disorder that made her stand out, was legally blind, a college professional, and most importantly, a wife and mother. Oh, by the way, she has to have had cancer too. I hope I don’t sound petty. Okay, this is turning into my journal.
I’m not looking for pity, just an answer as to what derailed me. I guess I thought I had paid my dues in life because I was born legally blind and with albinism. I found a way in my soul to deal with the bullies, skeptics, and rejections. I believed that God gave me two “normal” dark-eyed boys because I was forgiven for having a disability. I was redeemed.
Then I was diagnosed with breast cancer when my boys were just 4 and 5 years old. My way of dealing with reality (disability) was capsized and I had to search my soul for a new way of coping. I fondly remember one day shortly after my diagnosis you approached me in the hall and said something to the effect “you’ll be okay, you’re a fighter.” You didn’t judge me or pretend to be an insider. You just let me know you got it. That’s all I needed. I didn’t need sympathy or words of wisdom. I just needed to know someone got it.
As far as support groups, I wish I knew another woman who had a genetic disorder that made her stand out, was legally blind, a college professional, and most importantly, a wife and mother. Oh, by the way, she has to have had cancer too. I hope I don’t sound petty. Okay, this is turning into my journal.
Thom
Let me give that some thought, but you do need to accept that there is no reason to feel guilty. I do understand it though. Three or four years ago, I was given a tentative but mistaken diagnosis for a form of cancer that was sure to kill me within a year. I learned I was not afraid of death in the least, but I felt terrible at the thought of how much pain I was going to cause in those I loved - how much grief my death would create. (It took almost a month to correct that error.)
What you have to learn to embrace is that it is quite true that bad things happen to good people, and it is of the utmost importance to live to the fullest those moments we are given. You never know when they may end. You did nothing wrong; don't waste time trying to find it. Enjoy the present that you do have. Those who love you don't think you need to be forgiven - all they care about is that you are still alive.
If you look through all of my blog posts, you may find a few others with helpful pearls of wisdom. Hard to say, but I'll take inspiration wherever I can find it.
Fear may be harder to deal with. It's hard not to keep looking over your shoulder when you've been kicked this hard. Time, however, is your friend on this front. The longer you go without illness the more your fears will subside.
Does Raymond know of your guilt? Do you have a support group? Your emotions are normal for anyone with your experiences.
What you have to learn to embrace is that it is quite true that bad things happen to good people, and it is of the utmost importance to live to the fullest those moments we are given. You never know when they may end. You did nothing wrong; don't waste time trying to find it. Enjoy the present that you do have. Those who love you don't think you need to be forgiven - all they care about is that you are still alive.
If you look through all of my blog posts, you may find a few others with helpful pearls of wisdom. Hard to say, but I'll take inspiration wherever I can find it.
Fear may be harder to deal with. It's hard not to keep looking over your shoulder when you've been kicked this hard. Time, however, is your friend on this front. The longer you go without illness the more your fears will subside.
Does Raymond know of your guilt? Do you have a support group? Your emotions are normal for anyone with your experiences.
Amy
After thinking about your blog and the ease at which you openly talk about cancer and disability, I have been taunted by the re-submergence of my own buried thoughts.
I need someone to forgive me for getting cancer. They judge my life style, frown upon the age at which I had my children, say I didn’t eat enough blue berries, ask if I nursed my babies, tell me I didn’t take enough vitamin D, or instruct me to lower my stress.
Guess what? My dad has survived colon cancer and my mom bladder cancer. I am consumed with guilt because I had cancer. Who will forgive me so I can be free from this guilt and enjoy my life without fear? Until I pinpoint what I did wrong, I can never be happy or fearless.
PS: Please keep to yourself, and if you have the answers, I’m eager.
I need someone to forgive me for getting cancer. They judge my life style, frown upon the age at which I had my children, say I didn’t eat enough blue berries, ask if I nursed my babies, tell me I didn’t take enough vitamin D, or instruct me to lower my stress.
Guess what? My dad has survived colon cancer and my mom bladder cancer. I am consumed with guilt because I had cancer. Who will forgive me so I can be free from this guilt and enjoy my life without fear? Until I pinpoint what I did wrong, I can never be happy or fearless.
PS: Please keep to yourself, and if you have the answers, I’m eager.
Sunday, October 10, 2010
Thom
Thank you.
Pretend you didn’t tell me if you wish, but they are powerful memories. I’m a believer in sharing, and I feel privileged that you shared some memories with me.
Sometimes just the writing is very therapeutic. I started writing that blog last summer and actually have another (which I keep private) that deals much more with disability. It has lots of pieces that I initially wrote for Linnéa last year. Some things are just hard to share, I think, but mostly because we worry about making others feel badly.
I am always available to listen if you ever need to scream. Or whisper.
Pretend you didn’t tell me if you wish, but they are powerful memories. I’m a believer in sharing, and I feel privileged that you shared some memories with me.
Sometimes just the writing is very therapeutic. I started writing that blog last summer and actually have another (which I keep private) that deals much more with disability. It has lots of pieces that I initially wrote for Linnéa last year. Some things are just hard to share, I think, but mostly because we worry about making others feel badly.
I am always available to listen if you ever need to scream. Or whisper.
Amy
I just read your blog. I'm assuming you wrote these words. I also noticed the larger profile picture message. I never noticed this on Facebook. Wow, I wish more men openly supported breast cancer. I can hardly talk about my experiences. Perhaps I can write about them some day.
On my worst days after chemotherapy, I recall the overwhelming desire to want to scream and dig my fingernails into the wall. I could not escape the misery of chemotherapy. So I starting walking and kept walking until I reached two miles. Unless you've been there, it's hard to understand. People may ask how you feel, but most don't really care or want to hear the ugly details.
During that time I found new friends, lost some old, but reconnected with some as well. For me the worst is guilt over not being the best mother I could be. There were many days that Raymond got the kids off to school. The most I did was roll over in bed to give them a kiss and tell them that I loved them. I hope they grow up okay despite me.
Now I get up at 5:00 a.m. to cook them a warm breakfast before they go to school. I am also there to put them on the bus. My boys attended Notre Dame Elementary at the time of my treatments. The teachers and principal were supportive of our family and prayed for us. My favorite was when during morning prayers shortly after my diagnosis Nathaniel asked his teacher and class to pray for mommy's boobie.
Thanks for listening. Now I'm going to pretend I never shared with you. It is hard for me still.
On my worst days after chemotherapy, I recall the overwhelming desire to want to scream and dig my fingernails into the wall. I could not escape the misery of chemotherapy. So I starting walking and kept walking until I reached two miles. Unless you've been there, it's hard to understand. People may ask how you feel, but most don't really care or want to hear the ugly details.
During that time I found new friends, lost some old, but reconnected with some as well. For me the worst is guilt over not being the best mother I could be. There were many days that Raymond got the kids off to school. The most I did was roll over in bed to give them a kiss and tell them that I loved them. I hope they grow up okay despite me.
Now I get up at 5:00 a.m. to cook them a warm breakfast before they go to school. I am also there to put them on the bus. My boys attended Notre Dame Elementary at the time of my treatments. The teachers and principal were supportive of our family and prayed for us. My favorite was when during morning prayers shortly after my diagnosis Nathaniel asked his teacher and class to pray for mommy's boobie.
Thanks for listening. Now I'm going to pretend I never shared with you. It is hard for me still.
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