Lightening the Load

Tonight I took action to lighten the load on my weakening left hand.  I depend upon her beyond measure.  My right hand does not have the strength to lend a hand literally.  Tonight an old, heavy, burdensome saucepan has been taken out of service.  Replaced by a one-quart, lighter weight saucepan.  Sounds simple, I know.  Yet,  the lighter the weight, the steadier my hand and arm.  The lighter the load, the greater my confidence to meet very basic daily needs.

Other actions remain for me to lighten the load, to strengthen my grasp, and my confidence.  One action at a time.

Calm.  Ready,  Steady.  That is what I must be.

Do not ever take for granted what seems guaranteed to you for a lifetime and beyond.  For a lifetime I have taken for granted that I could strong arm any challenge that came my way.

Now I must rethink my lifelong presumptions.  Now I must adjust.  Now I must accommodate my ways to live differently.

Giving up is not an option.  This is not heroism, bravery, or courage.  This is survival.  This is making way for my remaining strengths, abilities, skills, talents, and gifts to offer them where others need them to be.

Mourning a Body--My Body

My left hand is my life's blood.  It is the vehicle I use to craft words, the tool I use to live.  My right hand has never served me.  She never will.  I know that.  Blame is not for me to assign.  Anger is not mine to wield.  My right hand has never served me as others' have.
This week, a gradual diminishment--a lifelong fear--came to a head.  I made progress to the outer world.  Not by others misassigning it.  I didn't misassign it either.  Rather, I rallied the consolation I need.
A mere appointment for hand therapy, hand x-rays, and a neck MRI did not deliver this week to me...not alone.
Every 18 months or so, I receive a questionnaire to reauthorize my long-term disability insurance.  A formality perhaps.  Yet, this time it hit me hard--it hits me in the gut.  She pulls no punches.
I have forgotten the sound of my left hand's voice propelling me up out of bed in the morning.  Did she ever speak?  Have I lost my hearing?  Am I deaf to her call for help?  How long has she--how long have they--been gone?
Did I abuse my left had so much--with such bravado--that I have lost her forever?
Will remorse...a contrite heart...a confessing of my wrongful pride...be enough that my hand may be entrusted to my service?
Voicing that thought through my still-working fingers is embarrassing.  Am I losing dignity as I stand aside of my body?
I hold on for dear life in the bathtub as I pull my body to a standing position after bathing myself.  Will this be the time I will lose my grip and fall?
The time for contrition has come...a shower/bath bench.  I have looked from afar.  This week's questions--the questions are served by only one answer.  I confess a bit of vanity remains.  With Amazon.com's hand to hold mine, soon I will be the proud owner of a reasonably-priced teak shower/bath bench.
I mourn a body--my body.  Is it mine to blame?  Is it mine to wield anger at because it is not serving me.
I must serve my body regardless of how it serves me.
Thirty-four years ago I was baptized--I joined the Catholic Church.  Through friends, I learned it was more than possible to blend intellect into faith into my being.  Skeptics to that blending asked, "But...resurrection...that just doesn't make any sense!  Do you believe in resurrection?  Do you believe in The Resurrection?"
I did not know I did not understand what words to utter.
Time has passed....years have elapsed....life has changed me...life has changed my body....much over many years has made now sense at all.
Do I understand resurrection?  Do I believe in resurrection?
No.  I must.  I am a woman of faith, I am a woman of hope.  I am a woman of love.  I am a woman of belief.
Do I understand The Resurrection?  Do I believe in The Resurrection.
No.  I breathe seeking to believe what I do not understand.
I mourn a body--my body.  I mourn a bath--the loss of a bath.  I was always a woman of a shower.  So, why am I mourning?  I seek understanding that has yet to be delivered to me.
I mourn a body--my body.

Pills....Pills....Pills...

     I would not make a good hypochondriac.  Neck pain just necessitated another prescription.  Albeit short-term, the addition of another medication to my daily regimen of six anticonvulsant pills, and six antitremor medications is a bit much.
     I know each is necessary.  While I rebelled against taking my pills--my anticonvulsants, long before my antitremor medications--now I understand the heightened quality of life my pills give me.
     Pills....Pills....Pills...
     My life is rich--far richer than I imagined possible for it to be.  I feel extremely fortunate to be able to set my own schedule.  While I would not have chosen the manner in which my work life ended--the acceleration of my cerebral palsy, and development of osteoarthritis, and essential tremors--now I am pursuing meaningful social justice causes that I yearned to pursue for a lifetime.  I did not know what the specific pursuits would be.  I wanted to do something in regard to disability awareness, but, beyond that, I did not know what might be possible.
     Pills....Pills....Pills...
     Research.  Writing.  Accessible transit long-range planning.  Advocacy for individuals with disabilities is in its infancy in my "encore" career.
     I never imagined enjoying research in a children's museum.  I have never been someone overly comfortable with kids.  So, the notion of enjoying volunteering in the administrative offices of a local children's museum was beyond my conception.
     Pills....Pills....Pills...
     Catholic Church reform.  Research.  I never imagined working with others committed to Catholic Church reform.  Yet, a series of innocent questions, "Would you be interested in being involved with," led to my being immersed in Catholic Church reform.  I love it.  My life is richer because of the people I know, and with whom I now work.
     Pills....Pills....Pills....
     Pills are not magic cures that take away my cerebral palsy, epilepsy, and essential tremors.  Pills do make my disabilities manageable. Pills are intertwined with my daily pursuits.
     Pills....Pills....Pills... 
     Some days it is a tough pill to swallow.  But, I try to minimize those feelings by making the most of the opportunities opened to me, and the avocations I pursue.  I am far from perfect.  I have my days.  Yet, I do what I can to take advantage of what my pills enable me to pursue thanks to the effectiveness of my pills.
     Pills....Pills....Pills...

Balance. Essential Tremors. Clarity.

     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.

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.

Side Effects--The Third Dimension

     Side effects connote manifestations that follow the prescription of a prescription, or over-the-counter medication.  That is how I described it in Side Effects.  Yet, upon further reflection, I realize that it is to the individual with a disability to act as an informant regarding--an advocate for--the reporting of what a given medication is causing in them.  That turns on its head how we think of side effects.  However, if that is to happen, and be maintained the relationship between the individual with a disability and health care providers must change.
     This summer essential tremors in my left hand--the shaking of my confidence--led me to make an appointment with my neurologist.  A medication was prescribed.  Past experience with extreme chemical imbalances led me to ask my neurologist about the medication's side effect.  Depression.  Possible thoughts of suicide.  I was glad to know what side effects had been identified.  Though those side effects are--can be--very serious, I was not worried.  I have a strong emotional support system.  Generally, I am an upbeat person.  I left the doctor's office armed with information, and buoyed with unrealistic expectations of a cure.  Six weeks passed.  At my followup appointment, I reported progress, much more progress.  A cure.  Not attracted to slot machines, or poker, I was ready to gamble--gamble with higher dosages of the medication I was taking.  No cure was mentioned.  But....I knew what I wanted, and I was going to get it.  Case closed.
     I entered my cure fantasy phase knowing several facts about myself relevant to this situation.  First, I need to have directions written down, especially when it comes to medical issues.  Sometimes, and the only way I know to say when is to follow my intuition.  When that lovely little voice we all know says, "You need to write this down the instructions being given to you; it is as though I am Velcroing the instructions into my brain."  I still want the written instructions from others giving me the instructions.  That is not always true, but, when it is, I need to listen to my intuition.
     Beyond written instructions, I knew that I have struggled with strong resentment regarding medication--anticonvulsants.  It is not constant, but, it is a chronic condition to keep in check.  The third fact I know about myself is that I need to have clarity of thought.  Past chemical imbalances with anticonvulsants gave me an LSD-like trip once.  Psychodelic colors are nice, but, the feeling is not, when mental clarity is at stake.  Another anticonvulsant overdosage left me feeling as though I could see thoughts--the actual structure of thoughts--floating in front of me like a kite, but, a kite whose string was beyond my grasp.  Frightening.  Truly frightening.  The complete lack of any short-term memory during that same period of time was frightening.  Truly frightening.
     I entered into my request for a higher dosage of antitremor medication knowing the three facts regarding myself from past experience, not to mention the potential of depression, or suicidal thoughts.  I was instructed to report back in a week.  A mistake.  A huge mistake.  My thought process was so sluggish.  I struggled to stay my normal upbeat self.  Not happy-go-lucky.  That is not me, but, I struggled to function mentally.  I had no suicidal thoughts, but, the sluggishness was enough to forego a cure.  The sluggishness was enough for me to realize how much the old, lower dosage level had done to improve management of my tremors.
     My resentment regarding taking medication was aggravated by the prescription of antitremor medications.  Now, instead of two medications, I was faced with four medication bottles to fill into pill boxes.  The antitremor medication pills are very small--great for swallowing, smaller to pick up with my left hand.
     I called the doctor's office after the week on the higher medication dosage.  I said I wanted to go on a lower dosage than I was on most recently, but, on a higher level than I was on initially.  I knew what I wanted.  I was going to get it.  Case closed.  I wanted to achieve that goal by taking medication at morning, and at night, and not in the middle of the day.  Somehow, the mental, and/or emotional side effect of taking medication three times a day was to feel overdrugged--to feel like a drugstore.  It is not a feeling of being overmedicated.  Overmedicated and overdrugged are not the same animal.  They are two separate beasts.  I knew others might not understand the distinction, but, I did, and that was all that mattered.
     Efforts to get what I wanted had a cost--a heavy emotional toll.  The medical secretary suggested that I could cut one of the pills in half.  Two problems.  I could not cut the medication myself.  If my pharmacist cut the pills for me, I would not be able to pick up the pill with my left hand.  My left hand was affected by the tremors.  My tremors were the reason I needed to take the medication in the first place.  So, you say, "Just use your right hand."  Well, cerebral palsy took that option away.  Cerebral palsy stripped fine motor skills from my right hand.  Normally, I don't think of it that way, but, I was at my wit's end.  I was amazed that I had the emotional wherewithal to tell the medical secretary to go, talk with the doctor about options, and then call me back.  She needed to get information.  I needed to break down.  She did.  I did.  She called me back, and we straightened out the dosage issues.
     This is the third dimension of side effects.  Resentment.  Overdosages.  Overdrugged.  These are but a few of the side effects different from the tangible manifestations of taking a given medication that follow taking the pills.
     Side effects.  The first dimension.  Side effects.  The second dimension.  Side effects.  The third dimension.  Side effects.

Side Effects

     Side effects.  Side effects are three dimensional.  Three dimensional?  Yes, three dimensional.

     Side effects.  Proceeding from the most commonly dimension, and ending with what needs to exist in order for a "healthy, medical partnership" to exist, I will describe my understanding of each.  I am open to differences--honest engagement on these issues--regarding my comments and ideas.  The only way a partnership may survive much less succeed is for open, honest communication.

     Side effects.  The first dimension of side effects is the clinical, tangible, reportable manifestation of a disability--a condition that calls an individual to seek partnership with a health care provider.  The best way to identify this first dimension is with a refrigerator.  A refrigerator?  Yes, a refrigerator.  If you put the first dimension of side effects into a refrigerator--isolate the first dimension of side effects--the notion could be identified, whether or not the light was on.  The dimension would be available to be understood.  Whether or not the first dimension of side effects is understood depends upon all individuals' willingness to be enlightened.  The choice is ours--of each individual--to make.

     Side effects.  The second dimension of side effects centers around neurologists, as my energies are devoted here, other doctors, nurses, and other health care providers, as I have identified them.  I am open to the identification of other health care providers for a broader discussion.  My list reflects my own experiences since 1960 in the United States.

    Side effects.  The second dimension begins with the education of the neurologist, other doctors, nurses, pharmacists, and other health care providers I have identified, to the degree appropriate--education regarding medication, and chemistry.  Following initial education regarding anticonvulsants--any medication, for that matter--the second step happens in the examining room, or the pharmacy.  When an individual with a disability enters the examining room, or the pharmacy, the doctor and the pharmacist ask what other prescription and over-the-counter medications the individual is taking.  The next step for the neurologist, and other doctors is to prescribe, or not prescribe anticonvulsants based upon other medications being taken by the individual.

     Side effects.  The third dimension of side effects begins with the individual with a disability.  First, the individual with a disability is given the initial prescription of an anticonvulsant--any medication---to treat a given neurological condition.  Second, the individual with a disability needs to ask questions--needs to ask the neurologist--any doctor who is prescribing the medication--as to the physical, mental, psychological, or emotional manifestations secondary to the original condition is being treated.  The only way for a side effect to be identified in an individual is for them to report the side effects.  Reports of side effects by others--be they guardians, parents, other family members, or individuals close to them