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.

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?

Health Care Reform

     I can ill afford to engage in the national debate regarding health care reform in the United States.  So, why am I even writing about it.  Simple.
     One of the components of my concept of "medical partnership" is "health insurance."  Before I can make any comments--share any reflections--regarding health insurance, I must make a brief statement regarding health care reform.  If my reflections regarding "health insurance" are to be understood as I intend, then, I need to clarify the context in which it exists in my life.
     I make a plea, and put forth a question to individuals who do engage in the health care reform debate.
     First, please debate--engage in the decision-making process--governed by a spirit of reason, logic, and empathy.  Resist the temptation to play to people's emotions in seeking the support of people who seek medical care, treatment, and support.
     Second, I have one question of debaters, and decision makers.
     Do you believe that you will wake up tomorrow with the same physical, mental, and emotional capacities with which you go to sleep tonight?
     Please engage in prayerful, deliberative debate and decision making in that spirit.
     That is all I will say regarding health care reform, as it is understood in common parlance.  I will devote my energies to crafting a "healthy, intelligent medical partnership." 

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."

Health Care Provider Equation

     My previous articulation of "health care provider" needs to be accompanied by the equation I believe states what the existing understanding of "health care provider" is.  I confess that I have not searched for the starting point that I found in the ADA for the term "disability."
     I want to begin my model with basic statements of my belief, and then develop the more complex expressions of belief and conviction.
     I offer to you an equation to use, in combination with the Health Care Provider entry, to think of and understand the notion of "health care providers."
     Health Care Provider=Any entity that bills for, and/or is remunerated for services rendered to an individual with a need  for medical treatment and/or support.

"Health Care Providers"

    One of two parties to a "healthy, intelligent medical partnership" is a "health care provider."  
I exceed the understanding of how "health care provider" is used in discussions of health care reform, or health insurance companies.  Contrary to these two contexts, I define this term more broadly.  My definition is based upon my life experience with individuals, and individual roles I have dealt with in meeting my ongoing health care needs.
     A "health care provider" is constituted of one of the following individuals, and/or individual roles, as given in the following alphabetized list.  If I think of further health care providers, I will modify this list, and reference them in future posts:
     Dentist and Dental Technician
     First responder
     Health insurance
     Laboratory technician
     Neurologist
     Medical secretary
     Nurse
     Orthopedist
     Orthopedic surgeon
     Orthotist
     Pharmacist
     Physical rehabilitation doctor
     Physical therapist
     Primary physician
     Psychiatrist
     Psychologist
     Social worker
     Surgeon--see orthopedic surgeon
     Discussing health care providers will be done by individual roles, based upon my experiences with each one.  Within each individual role, there may be multiple settings, be they hospitals, doctor's offices, the workplace, among others.
     I hope my comments, observations, and reflections will be balanced.  I will be true to my experience, yet, hopefully, my visceral responses will not cloud the element of human error on the part of the health care provider.  I hope that my reflections will identify places for improvement, rather than short-term expressions of frustration, or outrage.  Believe me, I have felt both in spades.

Disability Defined in Statutes--in the ADA

     A healthy, intelligent medical partnership" regarding individuals with disabilities must begin with a definition of terms.  I will begin with the statutory definition stated in Section 12102 of the Americans with Disabilities Act of 1990 (ADA).  That is my starting point.  I write the Brain Damage Diary, and Patty's Epilepsy Chronicles to share a much deeper understanding of disability that we must strive to achieve--that we must create.
     Section 12102 defines disability as follows:
     (1) Disability
The term "disability means, with respect to an individual
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment (as described in paragraph (3)).
...
(3) Regarded as having such an impairment
For purposes of paragraph (1)(C):
(A) An individual meets the requirement of "being regarded as having such an impairment "if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.
(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor.  A transitory impairment is an impairment with an actual or expected duration of 6 months or less.
     This definition is vague--intentionally vague.  The ADA of 1990 was crafted as a guideline--an instruction to a civilized society, in this case the United States, as to how to regard individuals with disabilities in daily life, and availability to resources sufficient to be a citizen who makes valuable contributions to society.  There  has been, and will continue to be significant litigation and debate regarding the nature of the term "disability."
     The ADA of 1990 definition of "disability" provides the starting point for my offering of the phrase "individual with a disability."  The ADA definition was developed as a guideline.  My definition, my descriptions--my reflections--are shared in the hope of spurring discussion, and nurturing greater understanding.

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.

Therapeutic Blood Levels

   Periodically, I, and other individuals who take prescribed medications are directed to have their blood levels checked.  Blood levels?  Yes, blood levels.  Lab technicians insert a needle in my elbow to extract a measure of blood.  I do not understand the specifics of the next step.  Suffice it to say, lab technicians perform tests that output the number of micrograms per milligram of blood of medication that is found in the bloodstream.
     Lab technicians could describe the steps they perform--the process that takes place--to produce the number of number of micrograms per milligram of blood.  Though important, I do not have the scientific background to understand the process.  It is important to understand.  How that number is interpreted is not universal.
    Someone--I do not know who it is--establishes what is known as a therapeutic blood level.  That level--that number--expresses the amount of medication in the bloodstream that sufficiently treats the condition for which it is prescribed, without causing adverse effects.  The adverse effects can include compromising the proper functioning of other body systems--the brain, the kidneys, and the liver being the most common.  Compromising the proper functioning of the brain may include equilibrium problems, hallucinations, depression, thoughts of suicide, among others that are beyond my knowledge.  Compromising the kidneys and liver, as I understand it, involves how the medication is processed in the body.
     Up until 2009, I thought that all prescribed medications had an established therapeutic blood level to assess its efficacy for an individual.  That belief gave me a false sense of comfort.  After experiencing adverse effects--dizziness, and vomiting--when I started taking the anticonvulsant, Vimpat, I learned that Vimpat did not have such a level established.  That was in 2009.  I do not know whether that fact has changed.  I do know that the other medications I take have such levels--such objective tools of evaluation.
     Though no one I know has ever said so, that fact pits the prescribing doctor against the individual for whom the medication is prescribed.  That fact has two deleterious effects.  I am not sure which is more important.  First, assessing the efficacy of the medication is impossible.  That fact makes it impossible to determine the interaction that one prescribed medication may be having on the body systems, the psychological, and emotional well-being of the individual.  [If I am mistaken in my understanding of that fact, I welcome being corrected.  Accurate facts--correcting misunderstandings of the facts is--are far more important than any egotistical affirmation of falsehoods, unintended though it may be.]  Secondly, the lack of a therapeutic blood level renders impossible the development, and maintenance of a healthy, intelligent partnership between doctors and other medical professionals, and the individual for whom the medication is performed.  The lack of such a partnership may not be important to the medical professionals involved.  But....the presence of a healthy medical partnership is essential to the individual consuming the medication.
     Without a therapeutic blood level for a specific medication renders impossible the assessment of how one prescribed medication is interacting with--affecting the efficacy of--another prescribed medication.  At least, that is how I understand it to be.  Over forty years of taking prescribed medications, and thirty years of knowing the phrase "therapeutic blood level" has given me the clinical knowledge of what the therapeutic blood levels for the prescribed medications I have taken are.  That knowledge has empowered me, as a patient.  Knowing the individual "therapeutic blood levels" for my medications has given me the tools necessary to develop a healthy, medical partnership with all of my doctors--primarily with my neurologist, though.

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.

In Control?

     Recent tweaking of my anti-tremor medication brings one word to mind--control.  Control?  Yes, control.
     Oxford Dictionaries defines "control" as "[mass noun] the power to influence or direct people's behavior or course of events."
     Control.  Chemical.  Neural.  Human.  Control.
     Control.  Seizures.  Neurologists.  Control.  Me--a 52-year-old adult.  Control.
Control of seizures seems straightforward.  The neurologist identifies an anticonvulsant to control seizures.  Based on my weight, among other factors, the neurologist prescribes a specific dosage.  Simple.  Periodically, blood is drawn.  Lab technicians measure the amount of medication in my bloodstream.  Simple.
   Well...not so fast.
     For years, I thought that my neurologist had the final say in the anticonvulsants I took, and in the amount.  I respect the training, and clinical experience of neurologists.  Yet, prescription of an anticonvulsant that caused me to vomit incessantly for several months was a test of my strength, and an unforgettable lesson.
     I am the final arbiter of the medication--the final arbiter of the way I live.
      Underdosage had a clear--unmistakable--effect--a convulsion.  Underdosage had an incentive to correct--the consequence was too strong to tolerate.  The only option I understood was to accept the pronouncements of my neurologist.
     Control.  Tremors.  Neurologist.  Me--a 52-year-old adult.  Control.
     Tremors in my left hand started at least five years ago.  Fearful of what it might be, and without the strength to confront it, I denied it.  I knew people who loved me noticed--were deeply concerned--about the tremors.  But, I could not confront the tremors.  I needed control.  I needed to control what the diagnosis might be--I needed to control how I confronted it.  I needed to steel myself to confront it.
     Control.  The diagnosis.  Intentional tremors--essential-tremors.  Control.
     In my fearful--prediagnosis--days, the only way I knew to confront my tremors was to intend to be steady in my movement of my left hand, most notably my handwriting.  My thinking was that my hand would be steadier--my handwriting would be more legible, if only I concentrated my full attention on being steady.  It seemed simple.  It makes sense.  Well....the harder I tried, the shakier my hand became.  The harder I tried the more illegible my writing became.  The shakier I became, the more out of control I felt--emotionally.
     Control.  Intentional tremors.  Anti-tremor medication.  Control.
     Prescription of a medication to eradicate my tremors--to take away my lifelong fear--seemed irresistible. My lifelong fear?  Simple.  My left hand would be compromised temporarily, or permanently, such that my mental, emotional, and spiritual resources would be trapped in my body.
     Control.  Take prescribed medication.  Control.
     Taking one 20 mg. minuscule blue tablet three times a day seemed a benign price to pay.  I feel guilty in saying that that pill combined with the anticonvulsants I take left me feeling emotionally overwhelmed--out of control.
     Control.  Mind.  Body. Spirit.  Control.
     Though an adult of 52 years, I have relinquished control to medical professionals, who know better, or so I have submitted myself to believe.  Yet, slowly, ever so slowly, I am learning that I am the final arbiter of how I--how my body--shall live.
     Control.  Mind.  Body.  Spirit.  Control.
     My emotional response to my antitremor medication could not be measured clinically.  Thank God, my doctor believed me--honored my response.  A different dosage synchronized with my anticonvulsants seemed a reasonable alternative.  Somehow, I was overwhelmed by having to ingest medication more times during the day than at the beginning and end of it.  Yet, that was how I felt.  Interceding events between then and now have not changed how I feel.
     Control.  Mind.  Body.  Spirit.  Control.
     Honoring me--my response--involved an educated--well-informed--tweaking of my dosages.  With full-knowledge of adverse effects that might follow, I opted to try a higher dosage of my medication.  I did not think my tremors were as well controlled as they could be.  I was so overwhelmed emotionally, and lost perspective such that I agreed to try a higher dosage.  I confused tremors with loss of stamina.  I wanted my tremors eradicated and I wanted my indomitable left hand returned to me.  Tremors can be controlled, but I do not have the right to abuse my left hand by stretching it beyond its limits, if I have any desire to live fully engaged.
     Control.  Mind.  Body.  Spirit.  Control.
      I am not without control.  Overdosage of my medication.  Many people, when faced with medication overdosage issues throw up their hands--they submit to their doctor without proclaiming the limits by which they are willing to live.
    Choices between the lesser of two evils are troublesome at best.  Such choices should not be "entertained."  Such choices should be contemplated with due care.
    Control.  Mind.  Body.  Spirit.  Control.
     My choices?
     Have my tremors fully controlled, and live with clouded thoughts, and thoroughly exhausting depression, or make necessary accommodations to what medications cannot control.  I am still learning what that control--what that balance--implies on my life.  Those are the extremes.  I do not live in extremes.  I live a full life.  Most people I know live fully-engaged lives.  Several people I know concern me.
     Control.  Mind.  Body.  Spirit.  Control.
     My tremors are controlled through deliberate means.  Medication.  Accommodation--reasonable accommodation.  Engagement--mental, emotional, and spiritual engagement.
     Control.  Mind.  Body.  Spirit.  Control.
  Some refer to "Minnesota nice."  Though I live in Minnesota, I do not engage in "Minnesota nice,"  I do commit myself fully to passionate, optimistic living.  To the degree possible, I surround myself with individuals committed to live so.
     Control.  Mind. Body.  Spirit.  Control.

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."

An Unthinkable Thought

     As I watch my body deteriorate, I covet my speech, I covet my writing, I covet my capacity--the gift I have been given to think.
     I have been given a taste--a preview--of what living with impaired thinking is.  Recent anti-tremor medications--recent overdosages--reminded me of much more serious thought processes that have been impeded.
     In 2003, a serious overdosage of a prescribed anticonvulsant sent me to the hospital, and then home to my parents for several days.  My medications levels were adjusted.  My parents took me in for several days. Anyone who knows me, knows that being independent--living on my own--has been a source of tremendous pride.  That is how I was raised.  Yet, fearful to me was the prospect that if I left the hospital, and returned to my condo to live alone, I would forget to attend to the most basic of daily tasks.
     My medication dosages were changed.  I regained my capacity to return to my condo.  I returned to my full-time job.  Yet, on my first day back, I told my supervisor that I was afraid that I would not be able to do my job.  My short-term memory was non-existent--completely nonexistent.  For three weeks, I had no short-term memory.  I had to write down the simplest of instructions, and information, lest I would lose any sense of what had been said to me.
     The ability to think--the ability to compose thoughts--was no longer a given that I took for granted.  Thoughts looked like kites to my minds eye.  I tried to capture ideas and facts, and hold onto them to locate words and sentences to hold down the kite--to secure the thoughts.  During those early days, the only way I could express myself clearly was through writing.  Even then, I did not have the sense--the confidence--that my words matched my ideas--that my sentences made sense.  I sent e-mail messages to my mom to document  how I felt--how I was progressing, or thought I was progressing.  I pleaded with  her--she complied with my pleading--to give me feedback.  I owe my life to her, in every sense of the word.
     As I look back to the fearful times, I look to the future with harbored fear.  Will I lose hold the kite once again?  May I do anything to stop it--to stop it from happening?  What must I do?
     Losing  my thoughts--losing my gift of composing thoughts.  An unthinkable thought.

Left Speechless

    I love surprise.  I am hard to surprise, but, I love surprise.
    When I was born, my umbilical cord was wrapped around my neck five times.  Oxygen was cut off to the left side of my brain, which controls the right side of my body.  That physical reality of my birth caused my brain damage, which expresses itself through my cerebral palsy, and through my epilepsy.
    When I was born, doctors told my dad that I might never walk, and I might never learn to talk.  I have done both.  Dad teases me--anyone who has known me for any length of time may agree--once you learned to talk, I wasn't sure you would stop talking.
     I love to talk.  I love surprise.  Rarely am I rendered speechless.  I smile when I remember those precious moments of speechless surprise.
     Yet, not to diminish those moments of surprise, the prospect of losing speech, or living with impeded speech frightens me.  I have no evidence to indicate that my future includes speech impediments.  Yet, that is paramount in my fears.  I fear little.  I cannot afford to.  Yet, I do fear losing the gift of speech.  I am well aware of the doctor's words to Dad.  I want to give Dad something he can continue to tease me about.

Confronting Fear

     Confronting my fears--about my brain damage--through writing helps immeasurably.  It is my indulgence. I hope it may be more than that, but, it does a world of good to air fears.
     Dying of a seizure frightened me.  My seizures are well controlled by anticonvulsants.  I had heard of a form of seizures that kept going--status epilepticus.  I had heard that during pre-menopause that bodily chemistry changed, or was unstable.  Putting those two together, my paralyzing fear was that I would fall victim to status epilepticus.  There was hardly anyone I could ask.  My job was to assure family, friends, and colleagues--especially colleagues, who did not know me well--that it was highly unlikely that I would have a seizure.  My mother was a whole lot of help.  She had experienced no chemical imbalances during menopause.  Doctors were clueless regarding the living realities of epilepsy.  They knew little more than the chemical--the clinical--aspects of seizures.
     Menopause--successful, peaceful menopause--was a gift.  I could relinquish my fear, and move on to a new chapter of my life.
     Fear has not left me.  Yet, writing has liberated my fear--not eliminated it, but, writing has given voice to my fears.  Some are put off by confessing--by confronting--fear.
     Zoomer moved me away from fears of other people--of their judgments of my "chair."  I do not begrudge anyone such fears.  I am haunted by my fear of a co-worker's wheelchair.  She died at the hands of her mentally-ill husband.  She understood my fear.  She did not confront me with it.  We never spoke of it aloud.  She knew that I needed to move through my fear.  She could not force it.  Jean, I wish you could have met Zoomer.
    Being "given" less stamina, and less strength in my left hand, I am learning how to adjust.  What may I say?  What must I do?  What help do I need?

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.

Quality of Life

  Functioning normally, carrying out normal daily activities is vital to the test of new drugs into my system.  With attentiveness to the side effects the drug might have on me, avoiding paranoia was--is--equally vital.  Paranoia--depression--"the drug is not going to work, the drug is not going to steady me," was essential to avoid.
     I am still in the amusement park.  Yet, no longer am I on the roller coaster.  I am humoring the medication, "Can we work together?  Will you help me to live with some vibrancy?"
     I know what is in it for me.  Quality of life.  Not some arbitrary financial class.  No class status is involved.  No dramatic "end of life judgment."
     Quality of life.  Quality of my life.  Greedy I pray I am not.  To selfishness I aspire not.  My prayer?  Quality of life.  Passion.  Humor.  Insight. Clarity.  Quality of life.  No financial class.  Not lower-, not middle-, not upper-class.  No status.  Simply quality of life.  For this I pray.

Trapped--Lost--in the Fog

     Last week, a tweaking of medication left me trapped.  I sought the tweaking.  I knew without doubt that overdosage was possible.
     I was told--I understood--what some side effects might be.  Yet, I wanted more for my left hand--I needed more from my left hand-- if it was at all possible.
     Yet, as much as the possible side effects could be conveyed, no one, however competent, could quantify the intensity of the side effects might be.  Intellectually, I know that.  Yet, knowing that in my heart was another matter.
     I have little tolerance for amusement park rides.  Yet, last week, my tolerance was tested--truly tested.  Last week, side effects, and chemical tolerance we tested, as my tolerance for a roller coaster might be.  My tolerance--my patience--was tested.  I entered the "amusement park" knowing full well that it takes time--several days perhaps, depending on the medication, for the effectiveness, or the toxic effects of a drug to be felt.  That time span relates to drugs I have taken when they are first introduced to my bloodstream.
     I fancy myself to be a patient, yet passionate person, who understands that my body does not function quickly, yet unwilling to sit by and do nothing.  I understand that my physical body does not function quickly, save my left hand's capacity to catch falling objects in mid air.
     Yet....yet...mess with my mind--with my mental capacity--my capacity for clarity, for insight--to live fully, and I am deflated.  My enthusiasm--my balloon--with which I soar is punctured.
     I fear, "I will never be given another balloon with which I may fly.  Worse yet, I fear that  those who have known only my clear facade will be deterred by my intimate--my deflated soul.   I pray they may trust--they may have faith--my vibrant self shall be resurrected in some form.

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.

The Birth of Brain Damage Diary

     Brain Damage Diary will be an extension of my reflections regarding brain damage through two other blogs I write--Patty's Ponderings, and Patty's Epilepsy Chronicles.
     Brain Damage Diary will explore the subtleties that exceed the confines of epilepsy--the contents of Patty's Epilepsy Chronicles.  Do not be mistaken.  Epilepsy is one manifestation--one expression--of my brain damage.
     Patty's Ponderings differs from my plans for Brain Damage Diary in its scope, and subtlety.  Patty's Ponderings explores insights regarding world events, and daily living.  Both blogs shall continue.  I pray I may do justice to my other two blogs by developing this blog.
    Brain damage expresses itself in two forms directly--cerebral palsy, and epilepsy.  Osteoarthritis is not a direct manifestation of my brain damage.  Rather, osteoarthritis is an expression of the aging process--a process accelerated by the brain damage I experienced at birth.  So, I may refer to my osteoarthritis.  Brain damage did not cause osteoarthritis in me.  Brain damage introduced me to osteoarthritis earlier than I hoped it might.  Pardon me in so doing.  May my comments, insights, and reflections regarding osteoarthritis add to, rather than detract from my primary topic--brain damage.