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 

Long-Term Effects

     Long-term effects--the concept, not specific manifestations of my anticonvulsants--are illustrated best by telling you about a specific appointment with my neurologist.
     I went into a routine checkup with my neurologist with no anticipation of any medication changes.  At that point in time, I had no sense of "medical partnership" much less "a healthy, intelligent medical partnership with my neurologist--with any of my health care providers.  The appointment I share was one of many events and circumstances that motivated my desire for a "healthy, intelligent medical partnership" paradigm.
     At my regular neurology checkup, my neurologist said she wanted to take me off of an anticonvulsant I had taken since childhood.  She said she needed to substitute a different anticonvulsant to ensure that I would not have a seizure in the future.  [I was taking a second anticonvulsant that the neurologist had no intent in changing.]  My neurologist threw out the names of a bunch of anticonvulsants, the names of which I had no familiarity, much less knowledge.  She well may have told me the side effects of each option.  All I heard her say after giving the list was, "I would recommend..." after which she gave me the name of the anticonvulsant.  I sat on the examining table and thought, "OK, I trust you.  You know far better than I do.  These drug names are Greek to me."
     Shortly after giving me her recommendation, my ears perked up.  "If you were to go onto this anticonvulsant, I would need to put you onto it slowly.  Starting you at full strength could be lethal."
     Let's see now.  The anticonvulsant I have taken since childhood could cause liver damage, if I were take it too long.  Yet, the medication you are recommending could be lethal, if full-strength levels of it were to be prescribed when I started taking it.
    Hmmm....What are my choices again?
    Clearly, literacy, education, communication, and self-advocacy were missing--were needed--here.  A healthy, intelligent medical partnership depends on it.  Blame--on either side--of what didn't happen, or dismissal--of what did happen--have no place.
    Humor is essential.  Don't be mistaken.  Humor is vital in making this relationship work.  Humor directs both partners to where the needs lie.

The Dentist and Dental Technicians

     Going to  my dentist--my dentists over the years--and seeing my dental technicians spotlights the matters of "side effects" and "physical capabilities."
     For many years, I took an anticonvulsant to control my seizures--an anticonvulsant whose side effect was inflamed gums, among others.  As a child, I was not aware of other anticonvulsants that existed to control seizures.  I don't know whether that was a function of my age, or of the anticonvulsants that were available for doctors to prescribe.  It well may be that it was a function of both.  Whatever the availability of anticonvulsants in the 1960s, and 1970s, the effect was the same.  I knew I had seizures.  My seizures needed to be controlled by anticonvulsants.
     That said, each time I went to my routine dental appointment, I understood that I was going to determine whether or not I had any cavities.  Time and again, my dentist would look in my mouth and say, "Your gums are inflamed."
     "I take an anticonvulsant that is known to inflame gums."
     "Well, try harder when you brush your teeth.  Floss your teeth.  That will really help to reduce the inflammation," the dentist would say.
     Time and again, I felt guilty.  I was frustrated.  I felt angry.
     "Listen.  I cannot hold, much less manipulate the floss.  My right hand is affected by my cerebral palsy.  Due to the nature of my cerebral palsy, my right arm is inordinately stiff.  I don't think about it that much, because I have never known my right hand to be any other way.  But, for purposes here, purposes of self-disclosure, it is an important point to include.
 \   "I cannot position my hand, and hold it steady to move the floss between my teeth.  I cannot floss.  Don't tell me to floss.  It isn't going to happen.  I did not know until later in my life to say that I did not have "fine motor skills"  in my right hand."
     I am not sure whether I had said that as a kid, the dentist would have understood what I was saying.  I did not know how to convey that if I could grasp onto the floss that I could not guarantee that I could hold onto the floss.
     The saying, "the right hand does not know what the left hand is doing," is true for me.  Until recent years, I have not been able to grasp onto much larger objects with my right hand, and hold onto them.  For many years, I would need to guide my right hand into a given position with my left hand, before my left hand could go back to performing its role in a given task.  Even if I was successful in strong arming my right hand, I could not guarantee that my right hand would continue to hold up her end of the bargain.
     The scenario with the flossing, has continued beyond one dentist.  I confess that I have not been a model patient.  I do not know what might have been different had my guilt, anger, and frustration clouded my efforts.
     Self-advocacy and public education have been essential throughout my life.  To this day, I need to be at the ready to advocate for myself, and provide on-the-spot public education.  Self-advocacy is a matter of dispelling preconceptions, myths, and biases.  Accomplishing these three goals is achieving a "healthy, intelligent medical partnership."

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.

A Tough Pill to Swallow

     I have taken many pills in my life--legally--all prescribed.  Different colors, different shapes, different  sizes, different tastes, different dosages, and different frequencies--I have taken many different pills for one reason--to keep me alive.
     Keep me alive. Not breathing.  Alive.  Clear in mind.  Steady.  Steady in body.  Deep in thought.  Filled with insight.  Filled--not full--with life.
     Last week, two little pills--two little blue pills--brought me to my knees.  Tremors in my left hand--my left hand, my only hand by which to live.  My right hand bends down--shies away from carrying her load.  So, I forge ahead.
     Medication overdosage.  I know the landscape.  I have scaled the terrain.  Several nights at my parents' home.  Nine days in the hospital.  Over six years, two separate instances introduced me to medication overdosage--to the self-advocacy necessary to adjust the blood levels.  The terms of art.  Blood levels.  Therapeutic blood range.  Troughs.  Dizziness.  Vomiting.
     Last week, two little pills--two blue pills--brought me to my knees.  Easy to digest--in my mouth, down my throat, in my stomach--yet, hard to swallow.  Severe arthritis. Severe cramp.  Insomnia.
     Shaky of hand.  Foggy of thought.  Need called me to self-advocacy.  Dosages totaled before my eyes.  Pill bottles at arms reach, I called for help.
     I started at one 20 mg. pill, three times daily for a total of 60 mg. daily.  Wanting synchronicity with my twice daily anticonvulsants, I felt overwhelmed--a pill popper--a resentful pill popper.  Honestly, I lost sight of the efficacy of the medication.  I was angry.  My lifelong fear was coming true--I was losing the use of my left hand, or so I feared.  Slowly, I have adjusted.  Not completely.  Some tangible adjustments.  Some changes to  my expectations.
    Settling for nothing short of perfection, adjustments were made in response to my preferences.  More control.  A higher dosage.  40 milligrams twice daily.  Synchronous with my anticonvulsants.
    Perfect.  It might be too much.  I might not tolerate the dosage.  But, hey, control.
    Days passed.  Severe arthritis in my left arm and hand--my left hand and arm.  Severe cramping.  Insomnia.  Depression.  Lack of drive.  Lack of interest.  Loss of short-term memory.
   Medication overdosage.  I know the terrain.  I called for help.  My dosage history clearly stated by me, I awaited help.  Confusion.  Instructions to take more than I was taking, not less.  I had no energy--mental or emotional--to debate, or clarify confused instructions.  Rare to me, I told the nurse to talk with the doctor, and call me.  I resisted her attempts to pacify me.  Foggy in mind though I felt, she was going to know that she needed to find help for me--advice, information to rectify my medication intolerance.
   "Maybe you can split the pills in half."
    "No.  That will not work.  I have use of one hand--my left hand.  I am taking this medication to control shakiness in my left hand.  No.  That will not work.  Even if I have the pills halved by the pharmacist, the pill would be so small that I would drop it with my shaky left hand.  No.  That will not work."
   My insistence paid off.  Not in less shakiness yet.  My insistence cleared my head of the toxic effects of the medication on my body.  Now, we shall work toward a steady left hand.
   Last week, two little pills--two blue pills--brought me to my knees.  Easy to digest--in my mouth, down my throat, in my stomach--yet, hard to swallow.