I have struggled to advise a family member as to how to fulfill their unique human potential. Knowing the position of respect bestowed on me has given me a sense of responsibility. Only following the Boston Marathon Bombings have I been given an inkling as to how to fulfill my responsibility.
My family member lacks the sense of how to fulfill his adult responsibilities--fulfill his human potential. Ascribing responsibilities on other intimates how they have failed their responsibiltiies to my family member has clouded his willingness to look at his own human potential--the gift he has been given by God--by his belief in God. I know that belief exists in him. I do not know the form of belief.
My belief--the form of my belief--calls me to offer something.
From an unlikely source--the Boston Marathon Bombings suspect--I understand one way--one something--I may offer.
Optimist--idealist--that I am, recent years have taught me, "life is not perfect." Self-pity is not the sum of that equation in my life. So where does that leave me--how does that affect my offering to my family member.
A List. An Itemized--A Humbling List.
If My Life Was Perfect...
I Would Not:
Need to wear my ankle foot orthotic--my brace on my right leg
Need to walk long distances with a cane
Need to use a wheelchair
Need to take medication to control my intentional tremors
Need to take anticonvulsants to control my seizures
Need to grab the right handrail with my left hand when walking up or down a flight of stairs
I Would Not Fear:
Outstretching my left hand--lose the use of my left and right hand by:
Opening doorknobs
Carrying heavy bags of groceries
Carrying heavy loads of laundry
My capacity to stand up from the ground
People Would:
Think my handwriting was beautiful
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Sunday, April 21, 2013
Thursday, March 28, 2013
The System's Face. Me. The System's Face.
2009 found me at my stamina's end. In alphabetical order, cerebral palsy, epilepsy, osteoarthritis converged with the aging process. My get-up-and-go got up and went. A sharp mind and 49 years under my belt--I was left to build a new life.
A lifelong follower of the news, diagnosed anxiety left me stressed beyond the days' news to bear. Though "a bleeding heart liberal" by common parlance, no longer could I listen to defenders of the system--the safety net for those unable to work any more than I could tolerate, I cannot tolerate those with no time for--no understanding of--why any "system" might need to exist.
I paid into "The System" for more than 25 years. I paid into Social Security. I paid into private long-term disability insurance--not so that I might cash in some day. I "paid in"--I invested in--because, as much as I believe "all men [and women] are created equal," it is with no cynicism that I say, "life is not equal."
Not everyone lives with an equal inventory of life's parts. Bodily. Economic. Social. More I am sure. Life is not Perfect. For whatever reason--however it manifests itself--each life is not on the same level with the same resources--the same needs.
Yet, each life is precious. The System is the Net to protect those lives. Not for pity. Not for poster children to yield tears from others, raise funds, or intimidate others into different beliefs. Such defiles the very preciousness it claims to magnify.
In 2009, I was brought to the front door knocking at "The System," with need. No begging. No laziness. No nefarious intent to abuse--to cheat--The System. I came to the front door of "The System" with need and guilt--Guilt with a capital "G," that I was not living up to the Ethic I was raised to uphold--the Work Ethic. No bravado, just the conviction that I had to contribute to society--to the community in which I live.
Nearly four years later, I continue to redefine "Work Ethic" means within my body's limits.
I am learning a new vocabulary. New roles. New activities. New balances.
Volunteer. Catholic. Reflect. Write. Blog. Neither lazy nor cheat flows through my bloodstream. Yet, Guilt persists--"intellectually" unjustified guilt--guilt that I personify the very stereotype I abhor.
47% helped no one. Not just as you might think. 47% as proclaimed by conservatives, and decried by liberals--helps no one. Highlighting--not worshipping, but highlighting--how victim is not the essence of "The System's Face"--those who must knock at The System's Front Door-- is essential.
If the lazy, cheating, victim stereotype were in fact true, as some conservatives genuinely may believe, then, conservatives need to articulate how to live within inescapable boundaries imposed by the body.
If conservatives believe that The System--the safety net it provides is not needed--then, talk about how to work within the limits of the body.
Bleeding heart liberal though I may be, I do not hold liberals free of responsibility. Liberals pound their chests with pride proclaiming the virtues of the Safety Net. Hold your horses.
Clear your throats. Speak with clarity not with political banter volleying useless debate back into the court of conservatives who decry The System--the conservatives who decry The Safety Net.
I am The System's Face. Look at me. Defense of your positions--volleying of the political football--does nothing to tell me, and you, how to live fully within the limits of my body--the limits of your body.
I am The System's Face. Look at me. I have needs--undeniable needs.
You are The System's Face. Look at yourself.
You are not immune from need--be it physical, economic, or social. Though today may not be your day of need, such inevitable may come to be. Do not hide from its possibility.
The System's Face. Do not Deface me.
Conservatives dig deep into the Spiritual Wellspring from which you proclaim your value.
Tell me. If I am not to be suspended from an eternal fall by the Safety's Net, then, tell me. How am I to live? How are others, whose bodies are similarly compromised to live? Don't speak of Survival of the Fittest.
The System's Face. Do not Deface me.
Liberals. Draw from your Thinker's Tank from which you Talk.
Tell me. Can you still your political bravado of The System--The Safety Net--in confrontation with conservatives who decry it? Liberals. Can you help me--help others--in the Safety Net--the System's Face to redefine how to live within the Safety's Net?
Conservatives. Liberals. Can you tell me?
Are you willing to work together to redefine the life--the fruit we may bear--in the Safety's Net?
Conservatives. Liberals. Can you tell me?
Are You willing to change the Pronouns by which you Think--the Pronouns by which you Speak?
Liberals. Conservatives. Can you tell me?
Will You speak not of They? Will You work together to redefine the life--the fruit We may bear--in the Safety's Net?
A lifelong follower of the news, diagnosed anxiety left me stressed beyond the days' news to bear. Though "a bleeding heart liberal" by common parlance, no longer could I listen to defenders of the system--the safety net for those unable to work any more than I could tolerate, I cannot tolerate those with no time for--no understanding of--why any "system" might need to exist.
I paid into "The System" for more than 25 years. I paid into Social Security. I paid into private long-term disability insurance--not so that I might cash in some day. I "paid in"--I invested in--because, as much as I believe "all men [and women] are created equal," it is with no cynicism that I say, "life is not equal."
Not everyone lives with an equal inventory of life's parts. Bodily. Economic. Social. More I am sure. Life is not Perfect. For whatever reason--however it manifests itself--each life is not on the same level with the same resources--the same needs.
Yet, each life is precious. The System is the Net to protect those lives. Not for pity. Not for poster children to yield tears from others, raise funds, or intimidate others into different beliefs. Such defiles the very preciousness it claims to magnify.
In 2009, I was brought to the front door knocking at "The System," with need. No begging. No laziness. No nefarious intent to abuse--to cheat--The System. I came to the front door of "The System" with need and guilt--Guilt with a capital "G," that I was not living up to the Ethic I was raised to uphold--the Work Ethic. No bravado, just the conviction that I had to contribute to society--to the community in which I live.
Nearly four years later, I continue to redefine "Work Ethic" means within my body's limits.
I am learning a new vocabulary. New roles. New activities. New balances.
Volunteer. Catholic. Reflect. Write. Blog. Neither lazy nor cheat flows through my bloodstream. Yet, Guilt persists--"intellectually" unjustified guilt--guilt that I personify the very stereotype I abhor.
47% helped no one. Not just as you might think. 47% as proclaimed by conservatives, and decried by liberals--helps no one. Highlighting--not worshipping, but highlighting--how victim is not the essence of "The System's Face"--those who must knock at The System's Front Door-- is essential.
If the lazy, cheating, victim stereotype were in fact true, as some conservatives genuinely may believe, then, conservatives need to articulate how to live within inescapable boundaries imposed by the body.
If conservatives believe that The System--the safety net it provides is not needed--then, talk about how to work within the limits of the body.
Bleeding heart liberal though I may be, I do not hold liberals free of responsibility. Liberals pound their chests with pride proclaiming the virtues of the Safety Net. Hold your horses.
Clear your throats. Speak with clarity not with political banter volleying useless debate back into the court of conservatives who decry The System--the conservatives who decry The Safety Net.
I am The System's Face. Look at me. Defense of your positions--volleying of the political football--does nothing to tell me, and you, how to live fully within the limits of my body--the limits of your body.
I am The System's Face. Look at me. I have needs--undeniable needs.
You are The System's Face. Look at yourself.
You are not immune from need--be it physical, economic, or social. Though today may not be your day of need, such inevitable may come to be. Do not hide from its possibility.
The System's Face. Do not Deface me.
Conservatives dig deep into the Spiritual Wellspring from which you proclaim your value.
Tell me. If I am not to be suspended from an eternal fall by the Safety's Net, then, tell me. How am I to live? How are others, whose bodies are similarly compromised to live? Don't speak of Survival of the Fittest.
The System's Face. Do not Deface me.
Liberals. Draw from your Thinker's Tank from which you Talk.
Tell me. Can you still your political bravado of The System--The Safety Net--in confrontation with conservatives who decry it? Liberals. Can you help me--help others--in the Safety Net--the System's Face to redefine how to live within the Safety's Net?
Conservatives. Liberals. Can you tell me?
Are you willing to work together to redefine the life--the fruit we may bear--in the Safety's Net?
Conservatives. Liberals. Can you tell me?
Are You willing to change the Pronouns by which you Think--the Pronouns by which you Speak?
Liberals. Conservatives. Can you tell me?
Will You speak not of They? Will You work together to redefine the life--the fruit We may bear--in the Safety's Net?
My Subconscious View. Me. LTD. SSDI.
Me. Work Ethic. LTD. SSDI. Me.
Work ethic was instilled in me from childhood. By example. By parental instruction. By familial heritage. From 1960 til 2009, Work Ethic was held in high esteem--faithfully unquestioned.
SSDI. Before 2009, initials. Social Security Disability Income. A paragraph in a yearly Social Security Administration statement of credits earned. SSDI.
LTD. Before 2009, initials. Long-Term Disability. A sensible work benefit offering. An insurance policy. A minuscule deduction--$2.72? per paycheck I presume. A remote need that echoed it the possibility of my imagination--a need vague to my view, yet, haunting to my anxiety. An anxiety inexpensive to appease, however remote it seemed. LTD.
SSDI. LTD. I knew no one within the limits of LTD--of SSDI. LTD. SSDI.
LTD. My knowledge of anyone on long-term disability was LTD to no one. LTD.
2009.
A defining moment in my view of the world--in a view of myself.
2009.
SSDI. I knew no one on SSDI. Enlightened though I thought myself to be, I had far different images of who were receiving SSDI. Some of those images haunt me yet today. They do not describe who I am, yet, they define my sense of what I believe I must be in order to receive SSDI.
SSDI. Bedridden. Paralyzed. Confined to a wheelchair. Totally dependent. Unable to meet my activities of daily living independently. Feeding. Bathing. Dressing. SSDI.
Bedridden. Paralyzed. Confined. Incapable. Unable. Incontinent. Dependent.
2013.
Four years have passed since 2009.
2013.
I am redefining what my life within the limits of my body is. Volunteer. Researcher. Swimmer. Friend. Sister. Cousin. Aunt. Daughter. Writer. Catholic activist.
2013.
Yet, four years later, the haunting drumbeat of my Subconscious View tower over me--the haunting drumbeat is deafening. LTD. SSDI.
2009.
Periodically--necessarily--surveyed, the haunting drumbeat is pounded into my spirit. LTD. SSDI.
Surveyed--periodically--necessarily. My personal questionnaire.
2013.
Do I fulfill my misconception--the haunting drumbeat?
OR
Am I moving forward to Redefine My Life within my Body's Limits.
Me. SSDI. LTD. The haunting drumbeat is deafening to my spirit. LTD. SSDI. Me.
Work ethic was instilled in me from childhood. By example. By parental instruction. By familial heritage. From 1960 til 2009, Work Ethic was held in high esteem--faithfully unquestioned.
SSDI. Before 2009, initials. Social Security Disability Income. A paragraph in a yearly Social Security Administration statement of credits earned. SSDI.
LTD. Before 2009, initials. Long-Term Disability. A sensible work benefit offering. An insurance policy. A minuscule deduction--$2.72? per paycheck I presume. A remote need that echoed it the possibility of my imagination--a need vague to my view, yet, haunting to my anxiety. An anxiety inexpensive to appease, however remote it seemed. LTD.
SSDI. LTD. I knew no one within the limits of LTD--of SSDI. LTD. SSDI.
LTD. My knowledge of anyone on long-term disability was LTD to no one. LTD.
2009.
A defining moment in my view of the world--in a view of myself.
2009.
SSDI. I knew no one on SSDI. Enlightened though I thought myself to be, I had far different images of who were receiving SSDI. Some of those images haunt me yet today. They do not describe who I am, yet, they define my sense of what I believe I must be in order to receive SSDI.
SSDI. Bedridden. Paralyzed. Confined to a wheelchair. Totally dependent. Unable to meet my activities of daily living independently. Feeding. Bathing. Dressing. SSDI.
Bedridden. Paralyzed. Confined. Incapable. Unable. Incontinent. Dependent.
2013.
Four years have passed since 2009.
2013.
I am redefining what my life within the limits of my body is. Volunteer. Researcher. Swimmer. Friend. Sister. Cousin. Aunt. Daughter. Writer. Catholic activist.
2013.
Yet, four years later, the haunting drumbeat of my Subconscious View tower over me--the haunting drumbeat is deafening. LTD. SSDI.
2009.
Periodically--necessarily--surveyed, the haunting drumbeat is pounded into my spirit. LTD. SSDI.
Surveyed--periodically--necessarily. My personal questionnaire.
2013.
Do I fulfill my misconception--the haunting drumbeat?
OR
Am I moving forward to Redefine My Life within my Body's Limits.
Me. SSDI. LTD. The haunting drumbeat is deafening to my spirit. LTD. SSDI. Me.
Monday, March 4, 2013
The Papacy...Physical Vulnerability....
I am a Catholic. Vacationing left me to Pope Benedict XVI's resignation only last week. Acquaintance with likely papal candidates is now my undertaking. Not experienced in church matters, nary a neophyte to this process.
Who might lead the Catholic Church next? What are his perspectives? His visions? What of his person-as a human being, not as anything theologically, or hierarchically?
Learning about the selection process of bishops--according to Canon Law--is a filter for my own views--educated in the possible while open to the yet-to-be lived.
Contemplating possibilities is a passion. Cynicism is a toxin I do my best to avoid.
Theologian Thomas Reese provided a questionnaire sent to bishop candidates seeking basic information about the candidates to be used in decision making.
"1. Personal Characteristics: Physical appearance, health, work capacity; family condition, especially regarding any manifestations of hereditary illness." [Thomas Reese, Archbishop: Inside the Power Structure of the Roman Catholic Church, Chapter 1, pp.20-21.]
I do not know if the questionnaire is used currently or not in the selection of bishops, or other church leaders, such as the Pope.
Among attributes polled was "physical condition." Living with cerebral palsy, epilepsy, essential tremors, and osteoarthritis, I am attuned to the "physical condition" aspect of evaluating church leaders. Thomas Reese noted that "physical conditions" could be used to disqualify men from consideration to be a bishop.
Papal selection is a more secretive process to say the least. Yet, I am called to evaluate the current papal selection process by Reese's "physical conditions" revelation. John Paul II was noted to have Parkinson's Disease only in his death certificate.
I am led to wonder. If disclosure of "physical conditions" were the norm, who might be selected Pope?
What might physical vulnerability bring to papal leadership?
Papal wish lists are being proffered at the pace of children's Christmas letters to Santa in December. Many Catholic papal wish lists to the College of Cardinals at the Vatican include leadership on vital issues, such as:
1. Clergy sex abuse
2. Financial accountability and transparency
3. Married priests
4. Women's ordination
These are but a few of the issues put forth. All are vital. I defer to other advocates more experienced than I to speak to these and other valid issues of concern.
No litmus test on a single issue will lead to selection of our next Pope. The most effective leader is a man who understands these issues. I pray we may have a Pope receptive to Catholics, and individuals of all world religions of diverse perspectives and convictions.
Within that context, may the College of Cardinals be open to a man who is vulnerable in spirit, compassionate in heart, mindful of understanding, and receptive in manner of being.
Physical condition should be no more a positive selector of a new Pope any more than a negative disqualification to be Pope, or a matter seen worthy of no more note than a death certificate--as with Pope John Paul II's death certificate.
What might the result--the possibilities--be if we opened the papacy to an exemplar of vulnerability? What might the result--the possibilities--be if we opened the papacy who a man who understands being brought to his knees, literally, by his own vulnerability?
[I was witness to breaths held by the physical vulnerability of a priest at Easter time. Would the priest be able to uphold his priestly duties in his physically compromised condition? Yet, that priest's physically vulnerable presence at Easter intensified his message far more than any words could ever have done.]
Others offer themselves as the champions of clergy sex abuse issues, the advocates for financial accountability, the proponents of married priesthood, or the pioneers for women's ordination. I give voice to vulnerability--physical vulnerability.
How might physical vulnerability humble our next Pope to understand the diverse issues, needs, and hopes of Catholics and other world citizens? How might physical vulnerability of our next Pope reveal to each of us to live with our own vulnerabilities as human beings?
Who might lead the Catholic Church next? What are his perspectives? His visions? What of his person-as a human being, not as anything theologically, or hierarchically?
Learning about the selection process of bishops--according to Canon Law--is a filter for my own views--educated in the possible while open to the yet-to-be lived.
Contemplating possibilities is a passion. Cynicism is a toxin I do my best to avoid.
Theologian Thomas Reese provided a questionnaire sent to bishop candidates seeking basic information about the candidates to be used in decision making.
"1. Personal Characteristics: Physical appearance, health, work capacity; family condition, especially regarding any manifestations of hereditary illness." [Thomas Reese, Archbishop: Inside the Power Structure of the Roman Catholic Church, Chapter 1, pp.20-21.]
I do not know if the questionnaire is used currently or not in the selection of bishops, or other church leaders, such as the Pope.
Among attributes polled was "physical condition." Living with cerebral palsy, epilepsy, essential tremors, and osteoarthritis, I am attuned to the "physical condition" aspect of evaluating church leaders. Thomas Reese noted that "physical conditions" could be used to disqualify men from consideration to be a bishop.
Papal selection is a more secretive process to say the least. Yet, I am called to evaluate the current papal selection process by Reese's "physical conditions" revelation. John Paul II was noted to have Parkinson's Disease only in his death certificate.
I am led to wonder. If disclosure of "physical conditions" were the norm, who might be selected Pope?
What might physical vulnerability bring to papal leadership?
Papal wish lists are being proffered at the pace of children's Christmas letters to Santa in December. Many Catholic papal wish lists to the College of Cardinals at the Vatican include leadership on vital issues, such as:
1. Clergy sex abuse
2. Financial accountability and transparency
3. Married priests
4. Women's ordination
These are but a few of the issues put forth. All are vital. I defer to other advocates more experienced than I to speak to these and other valid issues of concern.
No litmus test on a single issue will lead to selection of our next Pope. The most effective leader is a man who understands these issues. I pray we may have a Pope receptive to Catholics, and individuals of all world religions of diverse perspectives and convictions.
Within that context, may the College of Cardinals be open to a man who is vulnerable in spirit, compassionate in heart, mindful of understanding, and receptive in manner of being.
Physical condition should be no more a positive selector of a new Pope any more than a negative disqualification to be Pope, or a matter seen worthy of no more note than a death certificate--as with Pope John Paul II's death certificate.
What might the result--the possibilities--be if we opened the papacy to an exemplar of vulnerability? What might the result--the possibilities--be if we opened the papacy who a man who understands being brought to his knees, literally, by his own vulnerability?
[I was witness to breaths held by the physical vulnerability of a priest at Easter time. Would the priest be able to uphold his priestly duties in his physically compromised condition? Yet, that priest's physically vulnerable presence at Easter intensified his message far more than any words could ever have done.]
Others offer themselves as the champions of clergy sex abuse issues, the advocates for financial accountability, the proponents of married priesthood, or the pioneers for women's ordination. I give voice to vulnerability--physical vulnerability.
How might physical vulnerability humble our next Pope to understand the diverse issues, needs, and hopes of Catholics and other world citizens? How might physical vulnerability of our next Pope reveal to each of us to live with our own vulnerabilities as human beings?
Sunday, April 8, 2012
Calculation of an Ankle...Solving for X...
Algebra was never my forte. Yet, now I understand applied algebra, or I think I do. Applied algebra, or is it Christian algebra. You tell me.
Walking from the bus to church--or at least to an intersection at which someone from church welcomes me into their car--is a very prayerful time. Today came "the Calculation of an Ankle and a Hip--my Ankle, and My Hip."
My memory has faded. I do believe that algebra is adding several factors to solve for X. The young Patty did not understand. Humor this nearly 52-year-old woman, as she solves for X.
Factors.
Oxford Dictionaries defines factors as "expression by which another is exactly divisible."
Variables.
Oxford Dictionaries defines variable as "a quantity that during calculation is assumed to vary or be capable of varying." I am not satisfied with any definition that uses another form of itself to define itself. Vary is a verb, whereas variable is a noun. Therefore, let us define the verb. Vary is defined as, "differ in size, amount, degree, or nature from something else of the same general class."
My eyes are starting to glaze over now. Let me offer just one more definition to solve for X.
Constants. Oxford defines constants as, "noun. a situation or state of affairs that does not change." The example offered is ironic--truly ironic. "the condition of struggle remained a constant."
Definitions are established. Let us proceed.
A multitude of factors makes solving for X complex. However, it is essential.
X=Living inspired by, and insightful from, the lessons my ankle--my osteoarthritis--my cerebral palsy, and my epilepsy have taught, and continue to teach me.
X=Sharing the inspirations, the insights my disabilities--my life conditions have given me; advocating for the full living of each of our individual life conditions.
Constants.
Brain damage. Cerebral palsy. Osteoarthritis. Intentional tremors. Epilepsy.
Factors.
Inner calm. Humor. Optimism. Keen listening.
Variables.
Humidity. Distance traveled on my ankle. Weight borne on my left hip, and my right ankle. Do I listen to my body--to her instructions regarding my pace, and my activity?
This morning I witnessed the baptisms of three babies. The priest affirmed truth. The babies are entering a world far more difficult than those of us, who are older.
"There are no easy answers."
The priest asked the community, whether we were willing to offer support to the parents in raising their newly baptized children. His request was not hollow. Clear was how much we are called to share the joys and the sorrows with other people we meet--other people with whom we are in communion. I try not to feel discouragement. Yet, our unwillingness to share both our joys and our sorrows, and our strengths, and our vulnerabilities is a sad commentary on our commitment to our lives.
Why is it so hard to solve for X? What are our joys? What are our sorrows? Are we inspired in our lives? By what? By whom? Are we mindful of any insights in our day? What are they? Do we share them?
Why is self-disclosure so difficult? What is our purpose, if we are not to disclose our selves?
Why is it so difficult to solve for X?
Walking from the bus to church--or at least to an intersection at which someone from church welcomes me into their car--is a very prayerful time. Today came "the Calculation of an Ankle and a Hip--my Ankle, and My Hip."
My memory has faded. I do believe that algebra is adding several factors to solve for X. The young Patty did not understand. Humor this nearly 52-year-old woman, as she solves for X.
Factors.
Oxford Dictionaries defines factors as "expression by which another is exactly divisible."
Variables.
Oxford Dictionaries defines variable as "a quantity that during calculation is assumed to vary or be capable of varying." I am not satisfied with any definition that uses another form of itself to define itself. Vary is a verb, whereas variable is a noun. Therefore, let us define the verb. Vary is defined as, "differ in size, amount, degree, or nature from something else of the same general class."
My eyes are starting to glaze over now. Let me offer just one more definition to solve for X.
Constants. Oxford defines constants as, "noun. a situation or state of affairs that does not change." The example offered is ironic--truly ironic. "the condition of struggle remained a constant."
Definitions are established. Let us proceed.
A multitude of factors makes solving for X complex. However, it is essential.
X=Living inspired by, and insightful from, the lessons my ankle--my osteoarthritis--my cerebral palsy, and my epilepsy have taught, and continue to teach me.
X=Sharing the inspirations, the insights my disabilities--my life conditions have given me; advocating for the full living of each of our individual life conditions.
Constants.
Brain damage. Cerebral palsy. Osteoarthritis. Intentional tremors. Epilepsy.
Factors.
Inner calm. Humor. Optimism. Keen listening.
Variables.
Humidity. Distance traveled on my ankle. Weight borne on my left hip, and my right ankle. Do I listen to my body--to her instructions regarding my pace, and my activity?
This morning I witnessed the baptisms of three babies. The priest affirmed truth. The babies are entering a world far more difficult than those of us, who are older.
"There are no easy answers."
The priest asked the community, whether we were willing to offer support to the parents in raising their newly baptized children. His request was not hollow. Clear was how much we are called to share the joys and the sorrows with other people we meet--other people with whom we are in communion. I try not to feel discouragement. Yet, our unwillingness to share both our joys and our sorrows, and our strengths, and our vulnerabilities is a sad commentary on our commitment to our lives.
Why is it so hard to solve for X? What are our joys? What are our sorrows? Are we inspired in our lives? By what? By whom? Are we mindful of any insights in our day? What are they? Do we share them?
Why is self-disclosure so difficult? What is our purpose, if we are not to disclose our selves?
Why is it so difficult to solve for X?
Saturday, September 24, 2011
Zoomer Chronicles: A Door Opens
Just now, I responded to a survey from Macy's. I left my name number, and my willingness to address a problem.
Several months ago, Zoomer and I tried to leave Macy's Department Store. First, Zoomer had great difficulty navigating the clothing racks that masked the handicap door open button. Once we found our way through the forest, we wheeled back to the door to exit the store. Before we could get out safely, the door started to close on us.
We were stuck. I sat there for a bit. How is the best way to move?
Slowly and deliberately. Slowly, I back up. I press the button again. We hurry to get back into position. We got through the door. But, I was scared. How much I can I trust this door? How much can I trust this door to get outside?
I recognize that Zoomer and I have been together since mid-April of this year. Many, many individuals have navigated these issues for years.
There is a balance to be found between being frustrated, and seeking a constructive resolution. I think I am closer to the constructive-resolution end of the continuum.
Wintertime. I don't know whether I will move more toward frustrated end of the continuum, or beyond frustration. Memories of last winter--last winter's snow, particularly--concern me. I don't know whether I will be able to get out.
I don't want to become embittered by fear, and be blinded to the glory of a fiery red maple tree.
Several months ago, Zoomer and I tried to leave Macy's Department Store. First, Zoomer had great difficulty navigating the clothing racks that masked the handicap door open button. Once we found our way through the forest, we wheeled back to the door to exit the store. Before we could get out safely, the door started to close on us.
We were stuck. I sat there for a bit. How is the best way to move?
Slowly and deliberately. Slowly, I back up. I press the button again. We hurry to get back into position. We got through the door. But, I was scared. How much I can I trust this door? How much can I trust this door to get outside?
I recognize that Zoomer and I have been together since mid-April of this year. Many, many individuals have navigated these issues for years.
There is a balance to be found between being frustrated, and seeking a constructive resolution. I think I am closer to the constructive-resolution end of the continuum.
Wintertime. I don't know whether I will move more toward frustrated end of the continuum, or beyond frustration. Memories of last winter--last winter's snow, particularly--concern me. I don't know whether I will be able to get out.
I don't want to become embittered by fear, and be blinded to the glory of a fiery red maple tree.
Tuesday, September 20, 2011
Zoomer Chronicles: Her Voice
Zoomer is tired this evening, after an inspiring day. Zoomer was fitted with a small camera on her armrest--on Lily the Lefty. I was dressed with a small microphone. Off we went. Strange as it may sound, we encountered no incidents of being cut in front of, or the like. Odd to wish for that to happen, yet, I wanted to provide the visual evidence to reinforce my point.
The KSTP-TV producer, and cameraman did not doubt what I was saying was true. However, all of us wanted to get some tangible evidence. Perverse. Truly perverse.
Zoomer and I worried that I would be so nervous that I would forget what I wanted to say--what perspective we wanted to share. We worried that information essential to wheelchair safety in traffic would be lost to nerves--that my information would be the victim of my jangled nerves. As the sleepless hours dragged on, my worries intensified. [Intimate frieinds though we are, Zoomer sleeps in the living room, not in my bed.] Fixation on the route to follow finally succumb to unconsciousness shortly after 3:18 A.M.
Zoomer and I took a last minute tour this morning.
What route were we going to follow? Would it work?
Would there be some--enough--examples of me being cut in front of to reinforce my concerns? Would I provide material worthy of their time and effort to tour downtown?
What if nothing happens? Are they going to be upset that I wasted their time? Would they think that I blew the incidents out of proportion?
Those were my early morning questions--my obsessions.
Will they say, "Well, I am sorry. We can't devote any more of our resources to this story. Maybe if something had happened that we could photograph, we would be able to do a story. Good to have met you. Have a nice day."
But...such was not the case.
"Mike, I have run out of film. What would you like to do? Should we come back another day?....Do you want to do an interview?" the cameraman asked.
"...What does your schedule look like?...I've got your email and number. Mine is on my emails," the producer said.
So, my questions were answered. I guess we did OK.
Zoomer and I conducted the tour, and narrated it splendidly. Maybe there was too much narration on my part. I am a novice to television interviews.
Splendid. Just splendid.
The KSTP-TV producer, and cameraman did not doubt what I was saying was true. However, all of us wanted to get some tangible evidence. Perverse. Truly perverse.
Zoomer and I worried that I would be so nervous that I would forget what I wanted to say--what perspective we wanted to share. We worried that information essential to wheelchair safety in traffic would be lost to nerves--that my information would be the victim of my jangled nerves. As the sleepless hours dragged on, my worries intensified. [Intimate frieinds though we are, Zoomer sleeps in the living room, not in my bed.] Fixation on the route to follow finally succumb to unconsciousness shortly after 3:18 A.M.
Zoomer and I took a last minute tour this morning.
What route were we going to follow? Would it work?
Would there be some--enough--examples of me being cut in front of to reinforce my concerns? Would I provide material worthy of their time and effort to tour downtown?
What if nothing happens? Are they going to be upset that I wasted their time? Would they think that I blew the incidents out of proportion?
Those were my early morning questions--my obsessions.
Well...nothing happened--no incidents occurred during our tour.
So, nothing happened--no incidents. Now what?Will they say, "Well, I am sorry. We can't devote any more of our resources to this story. Maybe if something had happened that we could photograph, we would be able to do a story. Good to have met you. Have a nice day."
But...such was not the case.
"Mike, I have run out of film. What would you like to do? Should we come back another day?....Do you want to do an interview?" the cameraman asked.
"...What does your schedule look like?...I've got your email and number. Mine is on my emails," the producer said.
So, my questions were answered. I guess we did OK.
Zoomer and I conducted the tour, and narrated it splendidly. Maybe there was too much narration on my part. I am a novice to television interviews.
Splendid. Just splendid.
Wednesday, September 14, 2011
Zoomer Chronicles: A Fine Line
This morning, I ventured out to review problematic intersections and issues in Downtown St. Paul. The adventure heightens my attention to several facts.
After having three drivers cut in front of me in controlled intersections--in a period of two weeks--it seemed I needed to draw attention to the overlooked safety issues. I want to be prepared for the yet-to-be scheduled time with a television producer to highlight--to focus, literally--attention on public safety issues.
Several personal facts have come to light in recent days. While I do what I can to highlight public safety issues for others, I need to combat internal issues.
First, I have retreated from a healthy pace of travelling within the downtown area.
Second, timidity and fear replaced determination and confidence--not riskiness, but confidence.
Cooler weather intensifies my concern that I will be isolated by poorly-shoveled sidewalks, and ice. I need to back up. This will be my first winter with Zoomer. Questions abound.
What are Zoomer's intended capacities in the outside during wintertime? Am I realistic to expect that I might have some outside travel capacities during the winter? What will my limitations be? What accommodations are open to me? Are there additional safety precautions that might improve, or extend my capacity to travel outside during the Minnesota winter months?
I know that I should not expose Zoomer to rainy weather. I know that I should not expect to navigate ice.
I know that Zoomer can--will be able to--navigate the skyway system during winter months. [The skyway system is a Godsend. The system of enclosed walkways between downtown buildings--walkways located on the second floors of buildings--do wonders in curbing a paralyzing isolation that would occur otherwise.]
As wonderful as skyways are, it is extremely important to get outside--to be exposed to the sun--to all elements of the out of doors. Oddly, prior to Zoomer, having to be outside was not an issue, or priority for me. I took for granted my capacity to get outside and be outside.
Interesting what it takes to challenge one's values, and priorities. Coming days and months will clarify what, if any realignment of values, and priorities occurs.
After having three drivers cut in front of me in controlled intersections--in a period of two weeks--it seemed I needed to draw attention to the overlooked safety issues. I want to be prepared for the yet-to-be scheduled time with a television producer to highlight--to focus, literally--attention on public safety issues.
Several personal facts have come to light in recent days. While I do what I can to highlight public safety issues for others, I need to combat internal issues.
First, I have retreated from a healthy pace of travelling within the downtown area.
Second, timidity and fear replaced determination and confidence--not riskiness, but confidence.
Cooler weather intensifies my concern that I will be isolated by poorly-shoveled sidewalks, and ice. I need to back up. This will be my first winter with Zoomer. Questions abound.
What are Zoomer's intended capacities in the outside during wintertime? Am I realistic to expect that I might have some outside travel capacities during the winter? What will my limitations be? What accommodations are open to me? Are there additional safety precautions that might improve, or extend my capacity to travel outside during the Minnesota winter months?
I know that I should not expose Zoomer to rainy weather. I know that I should not expect to navigate ice.
I know that Zoomer can--will be able to--navigate the skyway system during winter months. [The skyway system is a Godsend. The system of enclosed walkways between downtown buildings--walkways located on the second floors of buildings--do wonders in curbing a paralyzing isolation that would occur otherwise.]
As wonderful as skyways are, it is extremely important to get outside--to be exposed to the sun--to all elements of the out of doors. Oddly, prior to Zoomer, having to be outside was not an issue, or priority for me. I took for granted my capacity to get outside and be outside.
Interesting what it takes to challenge one's values, and priorities. Coming days and months will clarify what, if any realignment of values, and priorities occurs.
Sunday, September 4, 2011
Epilepsy Chronicles: A Firm Grip
You have a hold on my right arm and leg no longer. Yet, your grip on me is firm--firmer than I realize. I try to erase you from my memory--put you in the well within me. Yet, I look back to my own words--my sentences. You have a firm grip on my mind. You take words from my sentences. You steal the precious part of me that, so desperately, I want to--I must give.
You give me no clue as to where you are--no hint as to where to look. You give me no key to find you.
Where are you? You are hiding from me. Where are you?
I try to understand.
You give me no clue as to where you are--no hint as to where to look. You give me no key to find you.
Where are you? You are hiding from me. Where are you?
I try to understand.
Tuesday, August 30, 2011
Epilepsy Chronicles: Precursory Shakiness
Honestly, I don't know if what I am about to describe is germane to the Epilepsy Chronicles. I think it is. My thoughts, words, and descriptions deal with brain damage most directly, moreso than epilepsy per se.
I work very hard to stay as calm as is possible--humor, empathy, patience, among other attributes that elude me. These attributes may be seen as laudable, and, in one sense, they may be. Yet, there is a neurological basis that makes these attributes essential. I am not a doctor. I have not studied neurology, or any scientific discipline that might offer me insight.
I can quantify the dosages of anticonvulsants I am prescribed to tame the extra electrical activity in my brain--milligrams. I can quantify the level of anticonvulsants in my bloodstream, which are determined by a blood test--a therapeutic blood level range. Based on my weight, at least, there is a numeric scale established. If the therapeutic blood level is too low, my experience has been that more medication is prescribed. The opposite is true, too. In my experience, blood levels that are too high on that scale lead doctors to prescribe a higher dosage of medications. Sometimes, an altogether different anticonvulsant is prescribed.
Yet, I cannot quantify the threshold I have for anger, and frustration, which leads to shakiness of my whole body--I cannot quantify it for myself or for others. I recognize it myself. All I know to do is to cry, and then, isolate myself until my jangled nerves are tamed, and my body is steadied physically. The crying is the cleansing agent essential to taming the extra electrical activity in my brain.
Compounding my own response, I know that the apologies of other people, well-intended though I know they are, only exacerbate my initial response. Trying to be rational long enough to isolate myself for my necessary cry, and quiet time is extremely difficult. I know that a part of that quiet means removing any activities that I know will involve further neurological agitation. I try to be rational, so as to explain that I can withstand some tension, frustration, and anger. Yet, my rational efforts are useless. My nervous system has been hijacked such that being physically steady is next to impossible.
What I have just described is not a seizure, as I understand it, after having lived with epilepsy for more than 40 years. My description today is fresh to my life--fresh to this moment. After anticipating a personal training session for several weeks--a session to identify further efforts I may take to strengthen my arms, hands, and legs--I met with tremendous disappointment, frustration, and anger that a perfectly understandable mixup in appointment times occurred. Not knowing precisely what to ask for to reschedule--what specific terms to use (a neurosis of mine)--my neurological response is intensified.
I need peace--inner peace, calm, perspective, and determination to reclaim goals I know have been strengthening me, irrespective of reliable help I expected, and hoped I would be given today. I need insight. Am I merely making an excuse for unnecessary, irrational behavior, or is there some credibility to my thoughts--my descriptions?
I work very hard to stay as calm as is possible--humor, empathy, patience, among other attributes that elude me. These attributes may be seen as laudable, and, in one sense, they may be. Yet, there is a neurological basis that makes these attributes essential. I am not a doctor. I have not studied neurology, or any scientific discipline that might offer me insight.
I can quantify the dosages of anticonvulsants I am prescribed to tame the extra electrical activity in my brain--milligrams. I can quantify the level of anticonvulsants in my bloodstream, which are determined by a blood test--a therapeutic blood level range. Based on my weight, at least, there is a numeric scale established. If the therapeutic blood level is too low, my experience has been that more medication is prescribed. The opposite is true, too. In my experience, blood levels that are too high on that scale lead doctors to prescribe a higher dosage of medications. Sometimes, an altogether different anticonvulsant is prescribed.
Yet, I cannot quantify the threshold I have for anger, and frustration, which leads to shakiness of my whole body--I cannot quantify it for myself or for others. I recognize it myself. All I know to do is to cry, and then, isolate myself until my jangled nerves are tamed, and my body is steadied physically. The crying is the cleansing agent essential to taming the extra electrical activity in my brain.
Compounding my own response, I know that the apologies of other people, well-intended though I know they are, only exacerbate my initial response. Trying to be rational long enough to isolate myself for my necessary cry, and quiet time is extremely difficult. I know that a part of that quiet means removing any activities that I know will involve further neurological agitation. I try to be rational, so as to explain that I can withstand some tension, frustration, and anger. Yet, my rational efforts are useless. My nervous system has been hijacked such that being physically steady is next to impossible.
What I have just described is not a seizure, as I understand it, after having lived with epilepsy for more than 40 years. My description today is fresh to my life--fresh to this moment. After anticipating a personal training session for several weeks--a session to identify further efforts I may take to strengthen my arms, hands, and legs--I met with tremendous disappointment, frustration, and anger that a perfectly understandable mixup in appointment times occurred. Not knowing precisely what to ask for to reschedule--what specific terms to use (a neurosis of mine)--my neurological response is intensified.
I need peace--inner peace, calm, perspective, and determination to reclaim goals I know have been strengthening me, irrespective of reliable help I expected, and hoped I would be given today. I need insight. Am I merely making an excuse for unnecessary, irrational behavior, or is there some credibility to my thoughts--my descriptions?
Saturday, August 13, 2011
Crossed Wires...Jangled Nerves...
Crossed wires….jangled nerves….
When you were born,
your umbilical cord was wrapped around your neck five times.
Crossed wires….jangled nerves….
The corded gifts that keep on giving—epilepsy…cerebral palsy.
Crossed wires….jangled nerves….
You have excess electrical activity in your brain--epilepsy.
Crossed wires….jangled nerves….
Epilepsy is like a thunderstorm in the brain.
Crossed wires….jangled nerves.
I can do it myself, Mom, don’t you know, I can do it myself….
Can’t you see, Mom, I can’t do it myself, I need your help.
Crossed wires….jangled nerves….
The faster I walk, the more I trip.
Crossed wires….jangled nerves.
Your cerebral palsy accelerates your aging process.
Crossed wires….jangled nerves.
The harder you intend to use your left hand, the more it will shake—intentional tremors.
Crossed wires….jangled nerves….
The more hostile I am, the more intense my tremors.
Crossed wires….jangled nerves...
The more data you throw at me, the slower I compute.
Crossed wires...jangled nerves...
The more instructions I hear, the more I must write them--
the more Velcro from my ear to my brain I need.
Crossed wires….jangled nerves….
The more instructions I hear, the more I must write--
the more Velcro from my ear to my brain I need.
Crossed wires….jangled nerves….
The less I write, the less I remember.
Crossed wires….jangled nerves….
The more I write, the deeper I think.
Crossed wires….jangled nerves….
Crossed wires….jangled nerves….
Wednesday, August 10, 2011
The Mermaid Chronicles: The Right Way
Upward this mermaid's arm rises,
Right wrist bent, fingers tight-fisted.
In the pool, this mermaid moves.
With bent right wrist, her left-bent elbow lowers,
They break the water's calm.
Through the waterway,
Her forearm rows forward.
Upward her right arm ascends airborne.
Rightly, she aims upward.
Straight to the sky she stretches.
Seeking no splashing,
She strives a straight, uplifted stroke.
Yet, with right wrist bent, and elbow left bent,
All she may do is sway.
Downward her left leaning elbow lowers,
Below the water's top, she skims.
She stirs, and showers surrounding swimmers.
Yet, no mind the gulped water--the blinding showers.
Her firming forearms, beefing biceps, and circling shoulders,
Will triumph.
Right wrist bent, fingers tight-fisted.
In the pool, this mermaid moves.
With bent right wrist, her left-bent elbow lowers,
They break the water's calm.
Through the waterway,
Her forearm rows forward.
Upward her right arm ascends airborne.
Rightly, she aims upward.
Straight to the sky she stretches.
Seeking no splashing,
She strives a straight, uplifted stroke.
Yet, with right wrist bent, and elbow left bent,
All she may do is sway.
Downward her left leaning elbow lowers,
Below the water's top, she skims.
She stirs, and showers surrounding swimmers.
Yet, no mind the gulped water--the blinding showers.
Her firming forearms, beefing biceps, and circling shoulders,
Will triumph.
Saturday, August 6, 2011
Epilepsy Chronicles: The Other Face
Some coworkers feared I might have a seizure on command. Others feared it happening in their presence. I understand. Being out of control of my body in my mind's eye. I understand. Yet, not moreso than when I happened upon a seizure of a man awaiting a bus.
"Focus on the positive, and ignore negative behavior," Mom chants in the deep reaches of my memory. From my earliest memory, "Focus on the positive, and ignore negative behavior."
I understood what he needed. Not medically. Yet, I knew what help he needed from the many helpless people who surrounded him. I knew the helpless individuals, who surrounded him, were far from helpless. While others surrounding me were viewing their first seizure, I was on the other end of the seizure. I understood what he needed.
I had never met the seizing man before witnessing his seizure. I have not seen him since that day.
Yet, I was given a voice--words to speak---for a reason. I am not committed to vengeance against other individuals. Yet, I can and must commit myself to positive vengeance against the excessive electrical energy in my brain, the root of my disabilities. I can and must be the human irritant--the nacre--that contributes to pearls of understanding.
"Focus on the positive, and ignore negative behavior," Mom chants in the deep reaches of my memory. From my earliest memory, "Focus on the positive, and ignore negative behavior."
I understood what he needed. Not medically. Yet, I knew what help he needed from the many helpless people who surrounded him. I knew the helpless individuals, who surrounded him, were far from helpless. While others surrounding me were viewing their first seizure, I was on the other end of the seizure. I understood what he needed.
I had never met the seizing man before witnessing his seizure. I have not seen him since that day.
Yet, I was given a voice--words to speak---for a reason. I am not committed to vengeance against other individuals. Yet, I can and must commit myself to positive vengeance against the excessive electrical energy in my brain, the root of my disabilities. I can and must be the human irritant--the nacre--that contributes to pearls of understanding.
Friday, August 5, 2011
A Huge Difference Between Understanding and Acceptance
"Your cerebral palsy accelerates your aging process. Do you understand?"
....
I was in a fog. Sitting in an opulent hotel suite celebrating a family wedding, I was in a fog. It never occurred to me that I could do anything but push my body as hard as I had been doing.
Delusions of having some modicum of smarts were shattered. The notion of there being alternatives to pushing my body beyond her limits destroyed.
Long-term disability? SSDI?
I knew the intellectual meaning of both. Or so I thought.
Long-term disability...LTD to some....
Long-term disability insurance would allow me to retain a significant percentage of my income should I become unable to work due to a disability. Long-term disability insurance was offered for a pittance. Quietly, I purchased the policy. Saying little to many, it seemed remote, yet, more likely for me than others, that my disabilities might be amplified--they might deafen my cries to work.
I could not conceive what it might be--how it might look--that I would be unable to work. After all, I was stronger--I was more stubborn--than any obstacle my cerebral palsy and epilepsy might put before me. Or so I thought. I closed my eyes, and opted to buy the insurance. It offered peace of mind.
I thought I had looked at all of the angles of how my disabilities might affect my future. I forgot.
My capacity to look at all of the angles, literally, was obstructed. I forgot. I forget.
My right eye wanders. You could say, I don't focus on the fact that I have little to no peripheral vision out of my right eye. Never have I had it. My world view has been left of center.
SSDI? Social Security Disability Income.
SSDI was beyond me--completely beyond me. I knew the words, "Social Security Disability Income." Yet, SSDI was something other people were on--something other people received.
I was in a fog.
"Your cerebral palsy accelerates your aging process. Do you understand?"
"Yes, I understand. But, there is a huge difference between understanding it, and accepting it."
I was in a fog. For the moment, I was sinking into a comfortable sofa, I was enveloped by loving family.
I was numb. My family stunned silent. Together we sat, trying to absorb a future radically different from what we imagined--a future different for all of us as a family.
"Your cerebral palsy accelerates your aging process. Do you understand?"
"Yes, I understand. But, there is a huge difference between understanding it, and accepting it."
....
I was in a fog. Sitting in an opulent hotel suite celebrating a family wedding, I was in a fog. It never occurred to me that I could do anything but push my body as hard as I had been doing.
Delusions of having some modicum of smarts were shattered. The notion of there being alternatives to pushing my body beyond her limits destroyed.
Long-term disability? SSDI?
I knew the intellectual meaning of both. Or so I thought.
Long-term disability...LTD to some....
Long-term disability insurance would allow me to retain a significant percentage of my income should I become unable to work due to a disability. Long-term disability insurance was offered for a pittance. Quietly, I purchased the policy. Saying little to many, it seemed remote, yet, more likely for me than others, that my disabilities might be amplified--they might deafen my cries to work.
I could not conceive what it might be--how it might look--that I would be unable to work. After all, I was stronger--I was more stubborn--than any obstacle my cerebral palsy and epilepsy might put before me. Or so I thought. I closed my eyes, and opted to buy the insurance. It offered peace of mind.
I thought I had looked at all of the angles of how my disabilities might affect my future. I forgot.
My capacity to look at all of the angles, literally, was obstructed. I forgot. I forget.
My right eye wanders. You could say, I don't focus on the fact that I have little to no peripheral vision out of my right eye. Never have I had it. My world view has been left of center.
SSDI? Social Security Disability Income.
SSDI was beyond me--completely beyond me. I knew the words, "Social Security Disability Income." Yet, SSDI was something other people were on--something other people received.
I was in a fog.
"Your cerebral palsy accelerates your aging process. Do you understand?"
"Yes, I understand. But, there is a huge difference between understanding it, and accepting it."
I was in a fog. For the moment, I was sinking into a comfortable sofa, I was enveloped by loving family.
I was numb. My family stunned silent. Together we sat, trying to absorb a future radically different from what we imagined--a future different for all of us as a family.
"Your cerebral palsy accelerates your aging process. Do you understand?"
"Yes, I understand. But, there is a huge difference between understanding it, and accepting it."
Subscribe to:
Posts (Atom)