Well, the journey back continues. My mental clarity--my drive--have returned.
Thank God. I get angry when my body fails--betrays--me. Yet, truth be told, I figure out what I need to do, and try to move forward. I do not have a choice. I don't mean that pitifully. I know people who whine, whimper, shy away from taking any positive action--any action at all, and my urge to strangle them is difficult to suppress.
But, mess with my mental clarity, and I feel lost.
I felt naked when I met with a group regarding church reform last Wednesday. I could not remember ANY details of work I had immersed myself in. The group was concerned that I was overcommitted in my time. I only wish.
My left hand needs more medication to be tamed now. I will call on Thursday, and ask about going back to 60 mg of my antitremor medication. I'm on 40 mg now. I was on 80 last week. Amazing what a difference 20 mg. makes...both ways...either way.
The prayer I seek now is a bit more subtle, or nuanced. Pills.
Pills. They are my lifeline--for a lifetime, as least as I understand it to be now. At least that is my understanding regarding my anticonvulsants. I need to approach my antitremor medications with the same mindset. The temptation I need to resist is self-pity, resentment, some sense that I can surmount the medication, or a combination of any of those three.
Beyond seeking balance of medications, if I am going to be successful, to any degree, I need to stay as active as possible. This summer, I have gotten off track with the healthy routine I had established. The combination of doctor appointments, and church reform meetings messed up my swimming routine. I spent at least 24 hours over six weeks helping a friend to set up a laptop--no--setting up my friend's laptop and scanner. Everything I did was necessary, and in of themselves, I wanted to do each.
I am hoping to get back to my routine of four days a week, an hour each day. I am out of shape. I am trying to take some other constructive action. I am going to look at getting a front door handle, rather than a door knob, to lessen strain on my left hand.
My prayer? Now, and over the long haul. Balance. Steadiness. Loss of any resentment or pity--toward the temptation to indulge in either.
Thanks for listening.
Friday, May 31, 2013
Saturday, May 11, 2013
Getting My Head Around It
I have come a long way in two years when it comes to wheelchairs--my being in a wheelchair. Maneuvering it. After all, though in my 50s, I have never driven a car before now. But, more to the point, I have come a long way in terms of surmounting fear. "People are going to treat me differently. Once again, I will need to be on the defensive to protect myself from misunderstanding."
As far as I have come, I have yet to get my head around one aspect of wheelchairs. Headrims.
They are for other people. Other people need them. Not me.."
I resisted the insurance representative, as sweet as she was, when she asked me to consider purchasing a headrim.
"Think of your long-term needs. Not now. Not a year from now. Think about your needs five years down the road." she said to me.
I do not dwell on it, or I would never get out of bed in the morning. But, someday, I may lose the capacity to use my left hand---the only hand available to me for meaningful use, since my right hand is affected significantly by cerebral palsy.
Just now, surfing the web for information about wheelchair accessories, I came upon a picture of a boy in a wheelchair using a headrim. Intellectually, I know, it is magnificent that headrims exist to provide mobility, and opportunities to stay actively engaged in this life we have been given.
Yet, my intellect does not assuage the pit in my stomach. Someday I may find myself in need of a headrim in order to remain mobile, and active. What will that day--that life--look like? Will I be able to talk? Will people be able to understand me?
I remember the most difficult time of my life. I was in the hospital for nine days. I had a toxic level of anticonvulsants in my bloodstream. I was hooked up to an EEG for an outrageous nine days--outrageous by any standards of medical practice. But, that was not the most difficult part of my life.
"Just tell me. What am I supposed to do. Go back to work and try to figure out how to cope with my disintegrating body? Stop working? What? Tell me. What am I supposed to do? Just tell me, and I will do it."
I talked to my family incessantly. Several good friends. I had no sense of time. I had no sense of what to do.
That was four years ago. A lifetime ago.
Did I really work full time? Did I really work for a large corporation? Did I really work for the same company for 24 years?
I never thought I would be working at the same company when I turned 65. Yet, I did not know where I would be. I still don't know. I knew that I did not have the courage to seek a job elsewhere. The prospect of being told I did not measure up was too much for me to confront.
Had you told me in the hospital in 2009 that I would live the life I do now, I would not have believed you. Volunteering twice a week doing research at a museum. Being very active in advocating for Catholic Church reform. Preparing to advocate for accessible mass transit in the metropolitan area. Writing blogs. Swimming. My life in 2013 was unimaginable in 2009. Though intellectually civic-minded, "volunteering" was not a word in my vocabulary. I could not define it.
What will my life in 2017 be? Will I need the headrim? Are there other accommodations I will need to make? No doubt there will be some. What will they be?
Right now I use my wheelchair to travel long distances. I am able to walk around my home. Yet, buying a refrigerator last summer opened to me the cold hard facts I needed to confront. What dimensions--what height and depth did my refrigerator need to be to accommodate a Patty Thorsen in the future, who would be constantly bound to her wheelchair?
Move me toward understanding, not what 2017 will be, but, toward what I will need--what inner resources--to live an engaged life. Settle my queasy stomach.
As far as I have come, I have yet to get my head around one aspect of wheelchairs. Headrims.
They are for other people. Other people need them. Not me.."
I resisted the insurance representative, as sweet as she was, when she asked me to consider purchasing a headrim.
"Think of your long-term needs. Not now. Not a year from now. Think about your needs five years down the road." she said to me.
I do not dwell on it, or I would never get out of bed in the morning. But, someday, I may lose the capacity to use my left hand---the only hand available to me for meaningful use, since my right hand is affected significantly by cerebral palsy.
Just now, surfing the web for information about wheelchair accessories, I came upon a picture of a boy in a wheelchair using a headrim. Intellectually, I know, it is magnificent that headrims exist to provide mobility, and opportunities to stay actively engaged in this life we have been given.
Yet, my intellect does not assuage the pit in my stomach. Someday I may find myself in need of a headrim in order to remain mobile, and active. What will that day--that life--look like? Will I be able to talk? Will people be able to understand me?
I remember the most difficult time of my life. I was in the hospital for nine days. I had a toxic level of anticonvulsants in my bloodstream. I was hooked up to an EEG for an outrageous nine days--outrageous by any standards of medical practice. But, that was not the most difficult part of my life.
"Just tell me. What am I supposed to do. Go back to work and try to figure out how to cope with my disintegrating body? Stop working? What? Tell me. What am I supposed to do? Just tell me, and I will do it."
I talked to my family incessantly. Several good friends. I had no sense of time. I had no sense of what to do.
That was four years ago. A lifetime ago.
Did I really work full time? Did I really work for a large corporation? Did I really work for the same company for 24 years?
I never thought I would be working at the same company when I turned 65. Yet, I did not know where I would be. I still don't know. I knew that I did not have the courage to seek a job elsewhere. The prospect of being told I did not measure up was too much for me to confront.
Had you told me in the hospital in 2009 that I would live the life I do now, I would not have believed you. Volunteering twice a week doing research at a museum. Being very active in advocating for Catholic Church reform. Preparing to advocate for accessible mass transit in the metropolitan area. Writing blogs. Swimming. My life in 2013 was unimaginable in 2009. Though intellectually civic-minded, "volunteering" was not a word in my vocabulary. I could not define it.
What will my life in 2017 be? Will I need the headrim? Are there other accommodations I will need to make? No doubt there will be some. What will they be?
Right now I use my wheelchair to travel long distances. I am able to walk around my home. Yet, buying a refrigerator last summer opened to me the cold hard facts I needed to confront. What dimensions--what height and depth did my refrigerator need to be to accommodate a Patty Thorsen in the future, who would be constantly bound to her wheelchair?
Move me toward understanding, not what 2017 will be, but, toward what I will need--what inner resources--to live an engaged life. Settle my queasy stomach.
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