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.

Insurance. Incomparable. Priceless.

     Incomparable and priceless are hardly the words most people would use to describe health insurance.  Yet, those are the words that come to mind whenever I see that with the partnership between the health insurance company and me--their reimbursement, and my premiums and copays--we have enabled me to remain a contributing member of the society in which I live.  I am not a brain surgeon, nor am I a rocket scientist, yet, I am enabled to offer my gifts, and my energy to my community.  How you ask?  Well, together we--my health insurance company and I--paid for the anticonvulsants that keep the electrical activity in my brain calm.  Together, we--my health insurance company and I--pay for the medication that manages, not cures, but, manages tremors in my left hand.
     If I do start to lose my perspective, I take one simple action.  I sign onto my health insurance company portal.  I view the list of claims for benefits I have made.  I look at the gross amount of the medication, my premium, and my co-pays.
     Incomparable.  Priceless.
     I may be prejudiced, but, I ask two questions to those who complain about the high cost of insurance.  I ask two questions of those who ask why they--why everyone--needs health insurance.
     1.  What current medical needs do you have?
     2.  Do you believe you will wake up tomorrow with the same capacities you have tonight as you go to bed?
     Two simple questions, the answers to which should lead us, not to feel threatened by the questions, but rather, empowered by the answers to enter into a "healthy, intelligent medical partnership"  with our health insurance companies.
     Some say, "Don't take things--life--personally.
  "  I say, "How can I not take things--my life--personally?  What am I saying about life--about the value of life--if I live in any other manner?

Foundation of a Medical Partnership

     In order to articulate my concept of a "healthy, intelligent medical partnership," I must answer answer several basic questions, and share the presumptions I am making.
     1.  Whom do I conceive to be the people included in a "healthy, medical partnership"?
     2.  To whom do I intend my comments apply?
     3.  Could "a healthy, intelligent medical partnership" be applied to a wider group of individuals than I describe?
     For clarity's sake, I speak of "a" healthy, intelligent medical partnership, but, do not be mistaken.  What I conceive of is not one-dimensional.  Just as any law firm, medical practice, business, or family, for that matter, more than two individuals are involved.  As such, there are interrelationships that create and nurture the partnership.  However, in order for my partnership to be healthy and intelligent, it must be broken down into smaller components, and then reassembled once it is understood, so that it may live and breathe--so that it may thrive.   
     Included in a "healthy, intelligent medical partnership" are individuals with disabilities, and "health care providers," as I define them herein.  My intent is that my concept must apply to everyone to whom I address, or it has no chance of working--of being effective.  Finally, although the statutory definition of "disability" that I begin with--the Americans with Disabilities Act of 1990 (ADA) definition of "disability--would seem to exclude many individuals from my model, every individual is included.  That will become clear  when I offer my definition of "individual with a disability."  
     Questions articulated, brief answers outlined, let me make clear that I speak for myself.  Even if I was so arrogant, and pompous to believe otherwise, I am not omnipotent:)  I can specify seven or six basic descriptions of myself that are the basis of my reflections, I do not describe everyone who use the same terms to describe a part of who they are.  That said, I offer an alphabetical list of descriptions.  An alphabetical list--I cannot prioritize the list more effectively.
     1. Born in 1960
     2. Born and living in the United States
     3. Cerebral palsy
     4. Epilepsy--manifested by seizures
     5. Osteoarthritis
     6. Tremors
     7. A woman
     I have had many discussions with women affected by cerebral palsy, and epilepsy.  My interactions with men who live with cerebral palsy date back to the 1980s.  I cannot remember more recent conversations.  I believe more such conversations would serve to enrich and enhance understanding and insight.
     Being born in 1960, I have lived through greater openness regarding, and receptivity to what we now call "individuals with disabilities."  To show the progress we have made in language, I attended a school with the important part of its name being "School for Crippled Children."  I omit the full name because my intent is not to condemn what the school offered.  My intent is to demonstrate what language was accepted during the middle 1960s.  In the late 1970s and early 1980s, I was active in a "handicap" awareness committee.  In the early 1980s, I worked for a disabilities council.
     With my frame of reference established--a foundation laid--I may articulate my conception of a "healthy, intelligent medical partnership."   

The Birth of Medical Partnership

     Few people, if any, speak of the notion of "a healthy, intelligent, medical practice,"  much less "a healthy, intelligent medical partnership."  Typically, the relationship between doctor and patient is understood to be a meeting between a patient and a doctor.  In such meeting, the patient is understood to report symptoms and/or complaints.  In response to that information, the doctor prescribes a course of action, be it medication, diet, exercise, to name a few.
     Health care reform, and budget-saving measures can serve to reinforce this mentality.  I propose a different model that I believe need not be in opposition to the reform of health care, or budget-saving measures, but, rather, may be a means of achieving those two ends.
     My perspective is based upon my 52 years of living with a variety of disabilities--cerebral palsy, epilepsy, osteoarthritis, and essential tremors.  Each disability has spanned different times over my lifetime, and has had different effects on my perspective.
    Though my cerebral palsy has been my intimate since birth, her impact on my developing and nurturing "a healthy, intelligent medical partnership" has been tangential to my other disabilities.
    Epilepsy ranks second in its longevity in my life.  I took my first anticonvulsant at the age of approximately six or seven.
    Osteoarthritis, though not formally diagnosed at the time, began affecting my life at the age of 40.  Unexplained stiffness in my right ankle seemed to me to be a mere manifestation of my cerebral palsy.  Essential tremors are relatively recent intimates.  First diagnosed in 2009, hindsight tells me fear prevented me from learning to live with essential tremors.  First and foremost, I had never heard  the term "essential tremors."  I fancied myself to be a knowledgeable patient.  Though not trained in sciences specific to medicine, in general, and neurology, specifically. still I considered myself to be fully informed.  All I knew was my fears.  I knew of three men with Parkinson's Disease, yet, my contact with them was second-hand--my contact with them was sporadic at best.  Compounding my lack of contact, I knew little to nothing of the daily ins and outs of the condition--how did it affect the individual with it, not just the functional aspects.
     That is the foundation upon which I endeavor to build medical partnerships with my doctors, nurses, lab technicians, and other non-medical personnel to the extent that my disabilities affect my relationships with them.

My BAD Hand....My GOOD Hand...

     "How much can you do with your BAD hand?"
     "How much can you do with your GOOD hand?"
     These two questions were familiar to my ears.  My gut reaction has matured.  Underlying facts--realities--have changed.  My answers have changed.
     "BAD hand" screamed to me, a reference to my right hand.  "Your GOOD hand" screamed out--pointed attention to my left hand.  Two sides of cerebral palsy in my life.
      My bad hand, and my good hand were--are--merely two extremities to my body, not the villain, and the good guy I heard being called when I was a child.  An adult, I swallowed the words, I answered the questions.  To my best, I lived the answers, or so I tried.
     To most, my bad hand and my good hand painted a picture in black and white.  The differences were stark, or so they seemed.  To me?  A partnership.  Not equal.  Partners nonetheless.
     My right hand.  "The right hand doesn't know what the left hand is doing."  To some cliche.  To me, my lived reality.  Tight. Limp.  One moment, I stare her down--her grasp is unbreakable.  The next moment, I look away--she drops the ball.  The glass breaks into smithereens.  I know better.  I trust her with only the unbreakable.
     My right hand.  My left hand.  As much as we both may want, no matter.  A small coin.  A breakable glass.  Too tiny.  Too fragile.  My right hand cannot grasp.  My right hand cannot hold steady.
     My right hand.  Some may say unfeeling.  So I say.  Yet, truth be told, in the winter's cold she is numb.  Under the summer's sunshine, she sweats.  She clenches her fist.  Little relief finds its way in.  Not always.
     My bad hand.  My good hand.  Partners.  Not equal.  Partners nonetheless.
     We support.  We compensate.  We protect.  We succeed?  Not always.  We accommodate.  We adjust.  We must.
     Cerebral palsy.  My lifetime companion.
     My left hand.  Her grasp firm.  Her strength solid.  Her reflexes split-second.
     My right hand.  Some may say unfeeling.  So I say.  Yet, in the winter's cold she is numbed.  Under the summertime's humid sun, she sweats.  Not always.  But, in the extreme of Minnesota's weather, she may be numbed, she may be sweaty.
     Essential tremors--intentional tremors.  My aging body's interloper.
     Essential?  Well, that is how they define it.  Intentional.  The harder I intend to steady my hand, the steadier I shall be?  Well....No.  If only.  Intentional tremor--the more I intend to perform a task, the more intense my tremor shall be.  Intentional tremor, that is the essence of the essential tremor.
     My left hand held the upper hand.  She strong-armed my right hand--the hand unable--dependent on my left hand--to carry the full load, to manipulate small objects.
     My left hand.  Her grasp was firm.  Her strength rock solid.  Her reflexes split-second.
     Now?  My left hand.  My right hand.  What now?
We are called to a new way of living.  My left hand.  How much can you do with your good hand?  Is it my good hand?  My right hand.  How much can you do with your bad hand?  My right hand.  Is it my bad hand?  Tempting though it may be, I must not engage in such.  Name-calling does nothing to help me--help us--in answering our call to a new way of living.  The temptation lurks, believe me.  Yet, I must not succumb.
     Spirituality of the human body.  Betrayal.  Partnership.  Spirituality of the human body.

Blame??? Justified Living???

     Introspection was infused in my bloodstream at birth.  Through it, I have survived.  Through it, I pray I may thrive.
     A recent overdosage of an anti-tremor medication made me keenly aware of my thought processes--my mental, and emotional outlook.  With my recent "visitor," I  realized I needed to introduce him to people who had not seen him "lurking" around me--threatening to knock me down.
     Chemical balance--perfect chemical balance--affords me a rich, very stimulation life.  Not perfect.  But, rich--stimulating.  I want perfection.  Not a perfect life.  I know that is not possible.  I know if it were, the gift of introspection would be taken.  That is too heavy a price to pay.  Given the choice, a perfect life or introspection, I have no question.  Introspection is the treasure I seek.
    But...but....
    Chemical balance.  Perfect chemical balance.
    I know the landscape--the terrain--of chemical balance.  I have traveled paths of its imperfections many times.  Yet, how do I introduce others--how do I introduce it to individuals who know only my vibrant side?
    Recently, I struggled with that introduction.  How could I explain my compromised vibrancy to new comrades?
    Four choices--five, perhaps--were given to me.  Apologize.  Explain.  Blame.  Blame my chemical imbalance.  Justify my mental vacancy.  Or, a combination of the other four choices.
    Apologize.  "I am so sorry I did not come today with my promised documents, and input."
     Explain.  "I am taking new medication to control  my intentional tremors.  Past experience with other medications tells me that improper dosages can impair my thinking.  Right now, I just don't know what to think is happening."
    Blame.  Blame my chemical imbalance for falling short of my promises.
    Justify.  Justify that my current shortfalls were due to chemical imbalances, and not to feeling overwhelmed.
    Blame, and justification are two sides of the same creature.  Both scream of helpless pleading.  Of the two--if the two were my only choices--I would opt to justify my mental vacancy.  Brain damage has robbed me of an abundance of short-term memory.  I have some.  Yet, short-term memory is not the well-spring--the spark--of my vibrancy.
    When self-pity overtakes my spirit, blame takes advantage of my vulnerable soul.  I stand guard, lest I fall victim to self-pity and blame.
     I pray--with urgency, I pray, "God, banish chemical imbalance that threatens my vibrancy.  God, grant my new comrades with patience--with understanding, with compassion.  God, grant them understanding--my mental vacancy is not permanent.  My mental vacancy is temporary.  It may be explained.  God, grant me patience to survive your definition of 'temporary.'  May I thrive on the other side of 'temporary'--through its inner core."

Unwelcome House Guests

     With age comes unwelcome house guests.  Brain damage accelerates their arrival, or so I was told.  In the past ten years, I have learned how to navigate the terrain of the dynamic duo.
     Tonight, I fear I am falling into three pitfalls--three deadly pitfalls.  I loathe wallowing, self-pity, and bitterness.  Negative thinking is a force I try to avoid.  Tonight I am fighting that demon.
     Since 2002, I have been introduced to osteoarthritis, and essential or intentional tremors.  I have opened my home to a power wheelchair--Zoomer is her name.
     Before I adopted Zoomer, I was asked to consider my long-term needs.  Not then.  Not in a year.  No, what might my needs be five years down the road?  Who knows?
     How was I supposed to divine such an answer?  Prayer?  Yes, but....I was being asked much more than to say, "Amen, I submit.  Amen."
     Did I want a joystick?  Did I want to buy an optional headrim to have stored for the day when I might lose the requisite strength in my left hand to manipulate the joystick?
     For a lifetime, I have feared losing capacity in my left hand.  The joystick was palatable.  It was marvelous that the chair could be fitted with a joystick on the left side.
     But....a headrim???  A headrim.
     I wanted no part of it.  Heck, I wanted no part of a wheelchair.  In fact, the day I entered my neighborhood medical supply store, I tried one scooter, and then, a wheelchair.  I had such a mental block regarding wheelchairs that I had to be told that I was sitting in a wheelchair.  My heart skipped a beat.
     I have yet to have the headrim delivered to me.  Yet, I did swallow hard, but not until a restless night of contemplation, did I agree to purchase a headrim.  I have not seen it.  For now, I have no desire to do so.  Solace is not what describes my feeling.  Satisfied may be the word.  While some must buy automobile insurance, I must buy the headrim--I did so.  The headrim is my insurance policy to cash in on at the point it becomes necessary.
     For now, I am trying to offer a modicum of hospitality to my unwelcome guests.  While I await the most unwelcome of guests I know might come, I adjust.
     I take pills.  I suck straws.  I zoom.  I research.  I write.
I swim.
     I listen.  To knocks at the door.  I listen keenly.  To my body.  My body rules.  My spirit must prevail.  My spirit must honor my body.
     I listen.  To my body.  My body rules.  My spirit prevails--peace--harmony prevails.  It must--I must.