M.J. Conaway, Ph.D.

BEHP 417 001 SU 16 Narrative Essay

A Healing Journey Into A Damaged Brain to Integrate Oneself

As I never quite felt right before life happened to me anyway, I had

reached a plateau in my own journey of personal healing and resolving many

question marks I had about my constitution as one who has severe

congenital quadriplegic cerebral palsy (CP). The physical manifestation of

the disorder, for me, is the mixed spastic-athetoid type, in which I have

grossly dysfunctional motor control and coordination. Recently, at my own

request, I underwent a battery of neuropsychological tests to figure out what

was actually happening and to get more appropriately targeted

psychotherapy. Previously diagnosed post-traumatic stress disorder (PTSD)

and generalized anxiety aside, my original suspicion was that I had autism or

Aspergers. That is because I had so many emotional, interpersonal, and

social difficulties that were never properly addressed during my formative

years in the '70s and '80s.

For example, stimuli such as thunder, lightning, sirens, train horns,

loud and aggressive voices, sudden movement, different physical

environment or care routine such as summer camp or the start of each term

in college, and so on would emotionally devastate me. If the changes were

sudden, that made it all the worse. More peculiarly, upbeat popular songs on

the radio, or even Muzak transmissions, would give me fits emotionally and

send me into spontaneous crying spells. Even when change was absolutely

and unequivocally wanted by me, I always had a difficult time with it when I
was younger. That was mystifying, perplexing, and vexing. After nearly a

half-century of living, and maybe because of my other problems, I still

withdraw into a depressive state when my life changes dramatically.

Primary sequelae indicated under the generalized neurodevelopmental

diagnostic category denoted as cerebral palsy include impaired motor control

and coordination, abnormal muscle tone, and poor balance and posture. CP

can be caused by birth trauma, traumatic brain injury, oxygen starvation,

maternal drug abuse, infection, jaundice, malnutrition, or one of myriad

other etiologies.1 Sensory processing disorder may also be present,

depending on the severity and extent of the brain lesion, and may elicit

abnormal sensory reactions. Taken together, all of these sequelae can yield

communication, developmental, and behavioral problems. 2,3

Similar to CP, according to Whiteley4, sensory problems are common

among other neurodevelopmental disorders such as autism spectrum

disorder (ASD), which is another generalized diagnostic category. It is

indicated by various sequelae of social and interpersonal dysfunction,

communication difficulties, and patterns of repetitious motor and verbal

behaviors. Yet, Christensen et al3 found that in general, autism is prevalent

in approximately one to two percent of Americans. Meanwhile, at least

seven percent of those with cerebral palsy have comorbid ASD or autistic

sequelae. As with CP, the morbidity of ASD is a function of the extent of the

brain lesion. Some have more severe sequelae than others. In the case of

comorbidity, sequelae of CP and ASD are intermingled. 3,4

 However, Zwaigenbaum5 asserts that, over the past two decades,

there has been increased acknowledgement that risk of neurobehavioral

problems is common throughout the clinical heterogeneity of

neurodevelopmental disorders, including CP and ASD. Interestingly, rates of

ASD are reported to be increasing in the general population although there is

little evidence that ASD rates are specifically increasing among children with

CP.3

Many unknowns about the association between CP and ASD still

persist. According to Zwaigenbaum5, one fascinating question for additional

research involves delineating the specific contributions of genetically

modulated anomalies in development versus injury-related processes in the

comorbidity of ASD and CP. A further question to be studied is whether CP

and ASD occur comorbidly across the clinical heterogeneity of each disorder,

with or without any associated intellectual disability. Given the

epidemiology, Zwaigenbaum5 advocates a more general emphasis on mental

health in clinical follow-up of those with CP instead of focusing on an

exclusive diagnoses such as ASD. Yet, in defining diseases, disorders, and

disabilities, a sage admonishment is that society chooses concepts for

certain purposes, depending on values and hopes concerning the world. 6

From living in the dormitory in Midtown Atlanta during my Georgia Tech

years, I got pretty much desensitized to thunder and lightning, sirens, and

train horns The campus is a quarter of a mile away from train tracks, which

follows since Atlanta began as a rail terminus anyway. And, the campus was
across North Avenue from the infamous Techwood Homes housing project

which no longer exists. On a warm night, one could even hear gunfire from

Techwood. That was interesting. Many things could be heard at any given

time. However, thunder and lightning still bother me a bit. Loud and

aggressive voices still very much bother me.

Even from early on, I have been cognizant of having these

uncontrolled, unexplained, seemingly spontaneous or idiopathic fits or

feelings of rage, terror, dread, abandonment or something like that. When I

was a toddler, they would come in the night, when I would typically be awake

and long since put to bed. There were no associated thoughts, positive,

negative, or otherwise about anything, that I can remember. If there were

thoughts, they were at least not about being disabled or even about my

parents. I never told anybody about this, as I did not know what it was.

When the divorce of my parents occurred in 1975-76, I developed a

pattern of frequent, inconsolable crying. It would come on each weekend I

was scheduled to visit my father and his other family. I never got along with

them, anyway. And, I did not like having to navigate the difference between

the separate households of each parent. As it was, I never really adapted.

Still, the crying was triggered all too easily in any number situations of

stress.

To demonstrate the different roles of cultural forces, values, as well as ideologies

play in nosology, Engelhardt7 distinguishes between disease or disability states and

disease or disability explanations. In addition to ethical and moral values, values with
respect to disease or disability models, ideals about the good life must be considered.

In evaluating diseases and disabilities, cultural forces significantly influence what will

pass for explanations of morbidity given a particular cluster of sequelae involves pain,

dysfunction, absence or loss of the ability to self-care, and so forth such that there

would be general agreement that he or she lacks complete health. 7

Moreover, explanations of disability or disease are frequently constructed for

social or ideological reasons so that the sick role may be applied to those in the

corresponding and congruent sequelae, such as attention deficit disorder, autism, or

club foot. Standards of health, nevertheless, are normalized according to criteria about

how members of a particular species should function, according to Englehardt. 7

Among other things from the initial neuropsychological evaluation,

however, I was found to have autistic sequelae but not full-blown autism or

Asperger's. That is because I have no unmet developmental milestones.

And, apparently these commonly comorbid symptoms are not determined

until much later, if at all, in those such as myself who have severe cerebral

palsy.3,5 At the post-testing debriefing, nevertheless, a diagnosis of pervasive

developmental disorder, not otherwise specified 8 was discussed by the clinical

psychologist, Dr. L. However, due to current nosological convention and the other

concomitant personality and psychological problems that I have, the PDD-NOS

diagnosis was not officially made by Dr. L. for me. That incomplete diagnosis, although
relieving, was still rather frustrating.

The diagnostic hesitancy of Dr. L. may have stemmed from that fact that PDD-

NOS is an archaic nosological category and, interestingly, it is not part of the DSM-5. 9

Yet, it is included as a distinct category in the ICD-10. 9 Nevertheless, a diagnosis of

pervasive developmental disorder not otherwise specified is given to individuals with

difficulties in the areas of social interaction, communication, and/or stereotyped behavior

patterns, but who do not meet the full DSM-IV criteria for autism or another PDD. 8,9

Certainly, given that I do indeed have difficulties in the above areas, I would not have

objected to an official diagnosis of PDD-NOS for my own edification.

Yet, Engelhardt10 emphasizes that myriad moral issues exist with respect to the

performative act of diagnosis. That is because particular diagnoses can potentially

exempt individuals from serving in the military, determine eligibility for various public

entitlement or social service programs, or at the extreme, frequently deny the mentally ill

and intellectually challenged many of their civil and human rights. 10 Indeed, concepts of

disease and disability place one at a specific point along the gradient of functional

perfection of human ecology. Since the act of diagnosis is nether descriptive nor

explanatory categorically, a single diagnosis of any specificity is particularly evaluative

because it declares a biological and psychological processes to be wrong or

dysfunctional.10 Nevertheless, function or adaptation is always dependent on the

ecology of the individual.

Further, Engelhardt10 asserts that the nature of most diagnoses is probabilistic.

Therefore , when a clinician makes an evaluation based on personal values and/or

inadequate or misinformed diagnostic criteria, there are risks of overtreating as well as

undertreating.10 Even when no diagnosis is made at all, such an act entails a complex

social interaction that can elicit a host of therapeutic and socioeconomic consequences.

After the initial neuropsychological testing, though, the next part of the journey

was a visit to a a very smart vascular neurologist at my current healthcare home.

Indeed, Dr. S. genuinely helped me in figuring out that I do indeed have pseudobulbar

affect (PBA). She said that I definitely meet all of the criteria and sees it all the time in

her stroke patients. Never in my life did I think I would be so happy to receive yet

another neurological diagnosis! In her respect for my autonomy, Dr. S. said that as long

as the PBA does not interfere with my daily functioning, then I do not need medical

treatment. With the simple justice of a congruent diagnosis, I have been set free in a

way that I never imagined!

Pseudobulbar affect may occur in association with a variety of neurological

disorders and diseases such as multiple sclerosis, traumatic brain injury, Alzheimer's

disease. Mechanistically, PBA is a disinhibition of the motor control of emotional

expression which involves serotonin and glutamate pathways. 11 According to Engelman

and colleagues12, pseudobulbar affect (PBA) is nosologically defined by episodes of

involuntary and frequently sudden emotional fluctuations as a result of brain injury or

other neurological disease. Epidemiologic research has shown that a range of 5.3% to

48.2% of people with traumatic brain injury (TBI) may have symptoms indicative of

PBA.12 There are, however, characteristic sequelae that can be accurately assessed and

identified by clinical signs and validated scales which permits proper treatment. 11 Yet,

because PBA is often wrongly diagnosed as depression, bipolar disorder, or other mood

dysfunction, it may be markedly undertreated. 11,12

Since I myself had long suspected that there is an organic component to my

emotional dysregulation, much uncertainty about myself, as well as many past demons,

have finally been vanquished virtually instantaneously because I now know what my

basic emotional problem comes from. Instead of me being a hypersensitive crybaby or

hothead who can also laugh inappropriately at times, I have become aware of my

emotional fluctuations and now just shrug them off, and even laugh about them, when

they occur. As the diagnosis of PBA from Dr. S was the treatment for me, with such

information I can definitely affirm the maxim that knowledge is power!

Honestly, though, I just wish that these deeper neuropsychological issues had

been properly addressed when I was growing up in the '70s and '80s. Back then, only

behavioral disorder classes and an overabundance of well-meaning yet misinformed

counseling and psychotherapy intramural and extramural to public school special

education was all that was available. My brain disorder was exclusively considered to

be a physical disability. Given the nosological milieu of that era, my social and

emotional problems were considered to be solely of behavioral or environmental origin.

None of the experts even considered the possibility that my brain disorder might be in

fact pervasive, with cerebral palsy being but one component of the whole morass of

dysfunction.

For me and my family of origin, such a diagnostic failure was neither beneficent

nor nonmaleficent. As such failure resulted in inappropriate care and support for me, it

markedly exacerbated the suffering for much of my life thus far by several orders of

magnitude. With utmost sorrow, though, I regret that my befuddled and bewildered

parents, who are healthcare professionals themselves, were so helpless about what to

do about my uncontrolled crying and anger back then. Even worse, because I did not

understand and could not control what was happening in my brain, I had no way of

articulating what was going on with me at that time. In addition, due to my emotional

hypersensitivity, the outright hostility and unabashed animosity that my parents and their

other spouses have for each other, even to this day, just added another dimension to the

suffering.

On top of the family violence, these neuropsychological issues of mine that were
continually undiagnosed for far too long, and lack of acceptance, understanding, or

empathy by many in my past, are but a few reasons why I felt compelled to leave my

family of origin and everything else behind. It was the only way I could think of to help

release all of the negativity about the multilevel failure. We were all exhausted,

exasperated, frustrated, and fed up with each other. To relieve the years of anguish and

misery, just by me taking up so much time and energy due in part to a lack of complete

diagnosis, it had simply come time for me to go. That way, I might, out of faith and

hope, become my own self. From my perspective, I took such action out of distributive

justice.

Over the past 20 years and via three major interstate relocations, I have

increasingly asserted my autonomy and certainly have become much more of my own

self. That includes moving to Chicago to pursue a second doctoral degree in Research

Ethics. In my true calling as a scholar rather than as a researcher, I springboarded into

Bioethics with a Ph.D. in Biomedical Engineering and a Postdoc in Physiology. As I

have come so far in life by myself, I have neither regrets about leaving nor intentions of

going back to my family of origin.

With such recent neuropsychological discoveries about myself, though, to say

that I feel liberated would be a total understatement! Now, I feel that I can live life and

accept myself in full as a whole and complete man. As I believe that I have finally grown
up at last, I am infinitely grateful to the contributors who provided the diagnostic

knowledge which I have acquired. Indeed, it has been a long, arduous healing journey

into my damaged brain to integrate myself.

References

1. Kent, R. Chapter 38: Cerebral palsy, in: Barnes MP, Good DC (eds.), Handbook
of clinical neurology, 443-59. London: Elsevier, 2013.

2. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M, Damiano D, Dan B,

Jacobsson, B. A report: The definition and classification of cerebral palsy April
2006. Dev Med & Child Neur, 2007;49:814.

3. Christensen D, Van Naarden Braun K, Noernberg N, et al. Prevalence of cerebral

palsy, co-occurring autism spectrum disorders, and motor functioning the
Autism and Developmental Disabilities Monitoring Network, US, 2008. Dev Med
Child Neurol 2014;56:5965.

4. Whiteley P. Questioning answers: cerebral palsy and autism. [28 June 2012]
http://questioning-answers.blogspot.com/2012/10/cerebral-palsy-and-
autism.html. Retrieved 06 Jul 2016.

5. Zwaigenbaum L. The intriguing relationship between cerebral palsy and autism.

Dev Med Child Neurol, 2014 Jan;56(1):7-8.

6. Engelhardt HT, Jr. The disease of masturbation: values and the concept of
disease. Bull Hist Med, 1974 Sum;48:234-48.

7. Engelhardt HT, Jr. Ideology and etiology, J Med Phil. 1976 Sep;1:25668.

8. Johnson CP, Myers SM. Identification and evaluation of children with autism
spectrum disorders. Pediatrics, 2007;120(5):11831215.

9. American Psychiatric Association. DSM-5 autism spectrum fact sheet, 2013.

http://www.dsm5.org/Documents/Autism+Spectrum+Disorder+Fact+Sheet.pdf.
Retrieved 09 Jul 2016.

10. Engelhardt HT, Jr. Ethical issues in diagnosis. Metamedicine. 1980 Feb;1(1):39-
50.

11. Ahmed A, Simmons Z. Pseudobulbar affect: prevalence and management. Ther

Clin Risk Manag. 2013;9:483-9.
12. Engelman W, Hammond FM, and Malec JF. Diagnosing pseudobulbar affect in
traumatic brain injury. Neuropsychiatr Dis Treat. 2014;10:1903-10.