Doctor, can you hear me?

To coin one of my oft-used phrases — ‘we’re going to have a sharing moment!’

I live with spastic diplegic cerebral palsy and several years ago  an episode of chest pain required that I go to the ER at the city hospital, 40 minutes away. I’m not a ‘frequent flyer’ in the ER so for me to make the decision to go is not without a lot of thought. Do I really, really need to?

Earlier that day while at the mall, I was having difficulty wheeling up a ramp which normally was not a problem given my powerful upper body. I was worried because my heart was hurting. My family doctor at the time made house calls and while attending me at my home, after the mall outing, put me on his portable heart monitor. He was concerned enough after the exam to insist that I go to the hospital immediately though there was no need for ambulance transport.

I went to the hospital ER, outlining symptoms in detail, noting that my family doctor felt that  I experienced a mild ‘cardiac event’ based on his exam. I didn’t have a long wait, thankfully. Given my status as an ‘at risk’ patient, I also have a need to be really proactive when it comes to avoiding too much contact with germs - colds and flu. For me, a simple cold could develop into pneumonia.

The ER doctor arrived and I took note of the fact that I wasn’t invited to get out of my chair to lie on the exam table. As was my habit, I wheeled around the space, mentally photographing the environment - part of my modus operandi in the event that I did have to stand up and make my way to the exam table. I prefer to move under my own power as being ‘manhandled’ had potential to cause me to totter/balance shift; then I have to  ’re-balance’. A fall at my advanced age poses even greater risk, given I am a senior citizen with a since-birth brain insult but still uprightly mobile - quite an accomplishment. I wasn’t about to jeopardize my health and wellness any further by landing on my bum and possibly breaking or dislocating a limb. It’s important for clinical staff, whether nurse or doctor, to ASK if a patient with obvious mobility disorder who IS able to walk, would like or requires assistance.  To not ask and simply latch onto a patient without regard for their personal safety is inappropriate as their personal boundaries were not respected.

I also noted another ‘problem’ with the ER doctor’s protocols. She did not wash her hands. I had observed her munching on a slice of pizza just moments before she came to see me but said nothing. I was asked about the reason for my visit while the doctor, rarely  making eye contact, looked at the chart. She then asked why I was in the wheelchair and was informed about the spastic diplegic cerebral palsy status. Much to my shock, she asked what CP is. Confidence in this physician went right out the window, barrelling down the highway. 

The doctor put the chart down, bent over and leaned into me and with her thumb pushed on my stomach. There was no blood pressure taken, no temperature taken, no questions about chest/heart pain asked, no questions about what I ate that day. Red flag! Red flag! Red flag! Red Flag! In just seconds, the diagnosis - indigestion. She wrote a script for Propulsid, and with that, the  examination had concluded.

  For the record, I’ve never had indigestion in my life. I would be remiss, however, if I didn’t point out that in many patients, heartburn and indigestion can and do mimic  the symptoms of a heart attack and all avenues must be explored. 

I accepted the script and bid the doctor good day, wheeling away without a backward glance. There was NO WAY I’d be getting that script filled. Once at home, I researched the drug and was stunned to learn that it had potential to cause fatal arrhythmia. It was finally taken off the US market in 2000. I had a conversation with my father, a old-school country doctor, and within days was examined by a cardiac internist in Fredericton. More tests followed, and I was subsequently diagnosed with aortic insufficiency. It was possible that I had I taken the drug as prescribed by that ER doc, I’d have gotten into serious difficulty, compromising the ‘golden hour’ of care lost because of my proximity to the hospital would have most assuredly worked against me.

My point in sharing this story is to make people aware that when they really, really know something is not right with their body, they need to assert themselves when they decide to go to the ER to seek treatment and appropriate care. And to the doctors - you  REALLY need to pay attention not to just what YOU see and hear from the body you examine, but what the patient is telling you. Hearing and listening are vital to outcomes. Let those two critical skills be your gifts to your patients this holiday season and all year round.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Failure to thrive

        A label by definition is “a short word or phrase descriptive of a person, group, intellectual movement, etc.”

Instructive labels: wash in cold water; this side up; do not remove tag; descriptive labels: she’s got really long hair, blue eyes, and well manicured hands; he’s always chewing on a fake cigarette and he smells of lemons.

Within the first year of my birth, I was labelled/diagnosed with spastic diplegic cerebral palsy and failure to thrive. In brief, cerebral palsy of the type with which I live is a fixed neurological condition.

Failure to thrive is often found in infants diagnosed with cerebral palsy, no matter the type and it implies an inability to gain and sustain weight or grow to expected height. I am still labeled failure to thrive. 

I also see failure to thrive in another way - a way that has nothing to do with physical growth patterns. I believe that many of today’s children, and dare I say quite a few adults experience a failure to thrive because of psycho-social or socio-economic circumstance. As a consequence they are very often penalized with inappropriate and totally unacceptable labels. This is a particular problem during the formative years, with the grade school student.

Some students may not have all the ‘best’ stuff, designer this and designer that and as a consequence be perceived as having less value, or even no value as a ‘friend’ or a team mate or dating material. 

Through no fault of their own, those ‘have not’ students are unwittingly set on a path of persecution and denial of inclusion because of preconceived notions about them and their ‘status’ which sets the stage for the currently popular coping mechanism - bullying. The ‘popular kid’ bullies out of a misguided sense of entitlement borne out of a self-importance that was designed in the home in which he lives and learns. Often, they feel they are ‘above’ their classmates because they have nicer clothes, designer sports gear, new car, and on and on. To be fair and to be real, this is not true for all such children of ‘privilege’. Children of ‘lower’ socio-economic status bully out of the sheer frustration of ‘not having’.

Upon closer examination, the common ‘I’m  better than you’ mindset has been unwittingly reinforced by parents whose socio-economic position and successes finances their child’s ‘status’. Giving in to their child’s every whim has advanced a ‘failure to thrive’ in that young person. Make no mistake, that is not something parents want to hear. Sadly, some parents equate giving their children ‘stuff’ on par with ‘effective/good parenting’. Their child has failed to thrive in ‘selling’ himself based on what he knows, how he behaves, what he thinks about and what is important to him outside the tangibles; the electronics, the things that money buys. Again, this is not the case for all such children.

  In this age of instant gratification, lost is the art of conversation and written communication that people of my era learned and still utilize as much today as in decades past; it is not such a strong skill in young people. Our current literacy rates speak to a huge problem. 

There is help! Parents must commit to saying NO to technology at evening meal, if meals are a shared family time. Engaging in meaningful, non-combative conversation is a confidence builder when opinions of youngsters are acknowledged/heard/respected/valued. Those ‘quality time’ experiences are easily transitioned outside the home into other interactions.

Teachers can help children of all ages overcome failure to thrive by discarding that long-held practice of judging a book by its cover. Many will admit they tend to treat the better dressed, more language-capable student with higher regard, thus pushing those who need more time and attention to the back burner. Teachers have attached a label without benefit of knowing the full history of the child, and if not handled appropriately, a ‘wrongly’ labelled child will become a self-fulfilling prophecy and act on how he’s treated. 

Ultimately the label that will be the most important tells us to ‘handle with C.A.R.E’

C.A.R.E. — COMPASSION, ACCEPTANCE, RESPECT, ENCOURAGEMENT.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca