An Open Letter to Parents Reflecting on the Vaccination Question

I decided to tell my story to you, Parents Reflecting on the Vaccination Question, because I might be the oldest living confirmed example of The Worst Which Can Happen to Unvaccinated Children.

I was born the sixth child of an eventual eight in September of 1955.  The illness which sent me back to the hospital struck shortly after I started walking.  My mother described that first, frightening episode for me.  She told me that my knees suddenly swelled.  I lowered myself to the floor with a thud.  A precocious child already talking at eighteen months, I told her that I would not walk anymore.  I simply refused.  She denied that I cried or threw a tantrum.  I just sat down.

What followed would make my life immeasurably complicated and sad.  The doctors first thought that I suffered from polio.  After ruling out that disease, at a children’s hospital in St. Louis, Missouri, the doctors loaded me with Tetracycline and said I had “septic arthritis”.  They inserted an impossibly long needle into my right knee and drained quarts of thick yellow fluid.  Years later, my mother shuddered as she described helplessly staring at my small form on the gurney, my blue eyes wide beneath a mop of dark curls.

My two older brothers dragged me through the hospital corridors in a red wagon.  I don’t remember this, but I can picture them doing it.  Kevin’s strong jaw and black hair would rise above Mark’s blue-eyed blondness.  They’d have earnest expressions.  Their small blue jeans would be secured with tightly cinched belts; their little shirts buttoned to their chins.  At four and six, neither could have managed the undertaking alone.  They worked well together in those days.

The critical point of illness left my legs  irreparably damaged.  I would never again walk in a normal fashion.  Pain would grip my muscles every day of my life.  Two of my sisters experienced similar illnesses at the same time; each has lingering issues.  But neither has chosen to be tested  or to tell their story.  I do not speak for them.  I mention their sickness only to underscore the contagion which probably affected me.  My mother certainly thought so.  “Why did three of my girls get sick at once,” she repeatedly asked.  No one ever had an answer — at least, not during her life time.

For the next few years, my parents and siblings learned to cope with a new reality.  I would walk again, but my awkward gait and looming fatigue necessitated adjustments.  These ranged from preferential chore allocation to defense from school yard taunts.  Mark frequently ran bases for me in the casual softball games of our childhood.  Kevin clobbered more than one boy who teased me on the playground.  I got called names like “the little red-headed crippled girl”.  Groups of children would follow me home from school or church, jerking their legs and arms in a crude imitation of my body’s spastic movements.

I’ve always acknowledged that I have it easier than someone who becomes impaired later in life.  I don’t remember ever being anything else.  Because my “walking problem” started so early, my condition defines my physical state.  I have no true understanding of what it means to “walk right”.  I literally do not comprehend the phrase “pain-free”.  When triage nurses ask me to rate my pain from zero to ten, I shake my head.  “That has no relevance for me,” I tell them.  In the last few years, a “pain scale” for those who suffer chronic pain has come into infrequent but growing use.  I have my own gauge:  The worst pain that I’ve ever endured followed the fall of an unsplinted leg with 32 breaks from an examination table.  The worst pain that I have witnessed was my mother’s agony when cancer hit her brain, a few weeks before she died.

Anything less than one of those can be tolerated.  On a scale of Nirvania to Bosnia, I’m somewhere in between.

But the decades between my early elementary school and my late middle-age challenged me in ways that I appreciate more in retrospect.  I never felt welcome in groups of children at any age.  Girls jostled me and giggled when I fell.  Boys grabbed my books to throw them on ledges that I couldn’t scale.  I stood apart from the dodge ball games, not merely picked last but ignored altogether.

When President Kennedy’s Fitness Challenge hit our high school, I quaked at the thought of being called into the center of the gymnasium to perform the contortions demanded of the regimen.  I fled to the principal’s office in hysterical sobs.  A phone call to my house drew an irate response from my father, who marched to the school demanding to know why his youngest daughter had to face this ordeal.  Eventually, I got excused, but the gym teacher made me dress out and sit by myself on the sidelines.  Nobody believed that my legs didn’t work, that I suffered the pain of constant spasming, or that weakness prevented me from running or climbing.  All of that was true.  If anything, we underplayed my symptoms from ignorance.

The ostracizing which I suffered as a child and a teenager worsened when college began.  In the competitive dating circle, I stood no chance.  The boys who courted my friends made crass inquiries about my capabilities which I won’t repeat.  In the 1970s of my college days, women fell into two categories:  Those whom you would date; and those whom you would not date.  I never emerged from the second group.

The emotional burdens of being “crippled” never abated for me.  I knew lots of people with worse ailments who seemed, at least outwardly, to take their plight in stride.  But I also know that many of them drank too much; used both legal and illegal drugs to mask physical and psychological pain; and even adopted a sort of sarcastic persona to disguise their loneliness.  I hit all those notes, often and repeatedly, throughout my life.

Late in the 1980s, my health plummeted to a new low.  I started experiencing aphasic incidents which no one understood.  Eventually, an Infectious Disease specialist speculated that I had a viral infection.  He went so far as to articulate what my mother had suspected, 30 years prior:  That a virus had been responsible for the initial problem and had now reawakened – in medical nomenclature, it had “reactivated”.  He speculated as to the type of virus, but did not yet have an antigen-specific diagnostic test.

At about that time, I married and moved from Kansas City to Arkansas.  My ID doctor put me in touch with a pediatric immunologist in Little Rock who was studying what he called “recurrence of post-viral symptoms originating in early onset viral infections”, one of scores of diagnoses that I would have over my life-time.  He added my data to his work.  Three years later, when I got pregnant with my son, that doctor followed my case even more avidly, speculating as to whether my child would be impacted by what they presumed to be my reactivated virus. (He wasn’t; I had him tested years later.)

I benefited from my pregnancy.  My health seemed to improve.  Unfortunately, though, I did not have chicken pox as a child.  When my son got that disease in 1993, I followed suit.  (He proved to be a much better patient than I.)

Then, in 1996, I had my first bout of shingles, which landed me in the hospital.   Thus began a downward spiral, the bleakest point of which came on Valentine’s Day in 1998, when a pulmonologist bluntly – and incorrectly – gave me six months to live.  “Your lungs have reached their limit,” he coldly stated.  “You’re worn out.”  My neurologist at the time agreed.

I lay in a hospital bed week after week.  I’d go home for a few days, then collapse.  In the middle of all this, I met my second husband and we got married.  Though our marriage would subsequently falter and fail after ten years, I owe him a very large debt of gratitude for not rejecting me as being too ill to be worth his time.

Thankfully I had moved my son and myself back to Missouri in 1992, In 1999, the Infectious Disease doctor who had seen me in the late 1980s and again during my 1996 shingles bout, happened to see my name on an admissions list at St. Luke’s Hospital in Kansas City.   Dr. Brewer came into my room and gasped at the frail and failing woman whom he beheld.  I told him about the six-month prognosis (which had now passed, but which seemed only slightly inaccurate).  He studied my chart, and actually laughed.  “You aren’t dying,” he told me.  “We know so much more now.  We know what your virus is, and we know it causes you to be hypercoagulable.  Your blood is just too thick.”

He told me that I likely had HHV-6, the same virus which causes roseola.   There are three similar childhood illnesses:  Measles, roseola, and rubella or “German measles”.  All are caused by viruses; all can cause dangerous illnesses including  viral encephalitis, which is what everyone now agrees I had as a toddler.   See, e.g.,  here (measles); here  (roseola)  and here  (rubella).

While Dr. Brewer and I talked that day, the pulmonologist and the neurologist rushed into my room, alerted by the nurses to the unfolding treachery.  They accused Joe Brewer, a respected infectious disease physician, of being a quack.  They cautioned me not to listen to him or allow him to dictate my care.  They stood over my weak body and shouted at him.  He took the entire event with characteristic calm.

“Let me get this straight,” I finally told the two of them.  “You think I’m dying.  Dr. Brewer says he can save me by administering blood-thinner.”  Silence followed.  “You’re fired,” I snapped at the two angry men.  I turned to Joe Brewer.  “You’re hired.”

A few months later, I went back to work full-time.

I participated in several studies of possible supplements which Dr. Brewer hoped would help patients like me.  I did not find relief from them after an initial surge of improvement which could well have been a placebo effect.  But undoubtedly, Dr. Brewer saved me from a pointless death due to oxygen-starved organs.  My skin had been sloughing; my heart had been slowing; and my muscles had been growing increasingly weak to the point of collapse.  Properly nourished by oxygen in the now-thinned blood, my body slowly regained a level of ability close to what it had lost.

Over the next ten years, periods of reactivation of the virus increased my problems.  I had long experienced difficulty breathing, but I also developed heart issues and digestive problems, all likely caused by the virus.  I am always tired, experiencing what Dr. Brewer described as “fatigue even at rest”.  I have weird neurological problems.  My right eye shuts down towards evening.  I’ve had constant tinnitus for my entire life.  My propioceptor systems simply do not work. I walk funny, I stagger, I fall, I limp.  I’m deaf in one ear.  My glasses  horrify anyone who happens to peer through the lenses.  I have to take an anti-viral just to keep the shingles and a few other random opportunistic viruses in check.

But I’m alive.

About six years ago, I learned that a doctor at Stanford had developed a medication, Valcyte, which he had hoped would fight HIV.  When it didn’t, he and his team started to look for viruses that it might combat.  They discovered that it suppresses HHV-6, “my” virus.  My primary care doctor in Kansas City wrote a twelve-page referral.  I got accepted and started treatment under the Stanford team’s care.

I now take Valcyte twice each day.  I take Valtrex (for the shingles and other random viruses) once a day.  I have standing orders for increase dosages if I experience outbreaks of any of those viruses.  An outbreak of HHV-6 is like having a super-duper cold combined with being repeatedly smashed against a brick wall  until I collapse.  I used to get those episodes every six weeks.  I have had two this calendar year. I had about four last year.

I still walk funny.  That will never change, because the CNS damage flowed from the original encephalitis.  The spasticity worsens with age and external factors, like not stretching enough or working too much.  Stress causes flare-ups of everything, especially the shingles.  But those, too, have become less frequent.  In short, I’m far better than anyone expected.

So, Parents Pondering the Vaccination Question, you might be wondering why I tell you all of this.  Let me spell it out:

If I had gotten a vaccination for the roseola virus, none of this would have happened.  The measles virus can cause the same problems.  A vaccination exists for the measles virus.  If a child can be spared what I suffered by virtue of vaccination, what reason exists to deny this vital protection to a helpless child?

I’ve heard people say that children are “damaged” by vaccinations.  I’ve read plenty of studies which refute this contention. Here’s just one.  Critical analysis debunks the original flawed studies.  I’ve seen no credible studies which support it.  Moreover, I’m a walking case study of what happens to someone – one in a thousand, but still – who contracts an otherwise harmless childhood virus and experiences its extreme effects.

Do you want your children to go through what I’ve recounted?  I assure you:  I’ve given you the highlights and spared you most of the gorier details, including the many years of loneliness, depression, and despair which I have experienced.  I still struggle from an unshakable belief that I am too broken for anyone to cherish.

Medicine has considerably improved since 1957.  We have Valcyte  and other anti-virals now.  An acute manifestation of roseola, rubella, or even measles might be treatable.  But why even get there?  Why subject your child to the potential that he or she will be one in a thousand, and suffer what I endured, if a vaccination can forestall such tragedy?  Serious illness from the measles virus occurs more often than from HHV-6.  You can safeguard against your child succumbing to that malady by vaccination.

I hope telling my story helps you.  More importantly, I hope it arms you with information that persuades you to vaccinate your children against viruses that can and almost certainly will cause them some degree of permanent and painful harm.  Do your due diligence.  But avoid the influence of  sensational stories with no credible, scientifically sound data to support them.  In the case of the measles vaccine, the limited studies claiming that the vaccination causes autism have long-since been discredited.  Juxtaposed against such junk-science are endless studies proving the vaccination to be safe and effective.

I don’t pretend to know everything.  I’m not a doctor.  I’m just a woman who has walked this earth for the last sixty-one years with an agonizing and contorted gait, from whom normalcy has been stripped, and who yearns to spare your child the sorrow which my virus brought me.

Sincerely,

Lucy Corley’s baby girl

 

Corinne Corley

cccorleyjd@gmail.com