Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum

November, 1995

I am just afraid.

There have been a slew of alarming articles in the media of late regarding outbreaks of disease -- measles, mumps, whooping cough -- that were largely thought to be eradicated. I won't link to them here because they're readily available anyplace you get your news. The articles inevitably draw a line between those who are responsible, intelligent, morally superior, and of a sound and modern mind who vaccinate their children and those who are jerks, morons, fuckers, anti-vaxxers, and at worst, murderers, who in refusing to vaccinate their children put those who do at risk. The usual celebrities are dragged out to anesthetize us at best and drive us into an insane furor at worst. It's apparent, of late, that the powers that be and their acolytes find the situation so alarming, they've brought out the big guns and just shoot their mouths off stridently with flat-out accusations. Just fucking vaccinate your kids! I read on Facebook the other day. Who are these people? another person asked, I think they're disgusting. When will they feel remorse?Like, like. They should be fined. Like, like, like. Idiots! Morons! 

Nineteen years ago, I vaccinated my daughter when she was two months old. She began seizing shortly after and didn't stop for nineteen years, until a couple of months ago when we began to give her cannabis oil. We don't know whether the vaccinations caused her terrible disorder or whether they were a catalyst for the vicious infantile spasms that eluded every sophisticated treatment thrown at us. Possibly, the doctors told us, then. Probably not, but no more vaccinations for her. 

When our first son was born, we decided with his pediatrician that we wouldn't take the chance that he, too, would have a reaction to the vaccines. We did the same with our next son. At no point were we irresponsible, stupid, murderous, immoral, disgusting, or anti-Science.

We were afraid. We were afraid to vaccinate them and afraid not to.

My sons will probably get vaccinated, slowly, before they go to college, but don't think I won't be terrified. You have not persuaded me to do this with your cruel words, your flaunting of your knowledge, your faith, your certainty and your condemnation. Nor will I do this to save your children. I will do this because I am afraid.

In the meantime, stop telling me that I'm irresponsible, a fucker, stupid, anti-Science, disgusting and only worthy of contempt. Don't placate me with false understanding or a concession to my difference. There are many of us out here.

You might, instead, hold my hand as the doctor slides the needle into my two-month old baby's thigh and watch with me as her mouth makes a perfect O before the scream comes out. You who have babies know that look, don't you? Keep holding my hand a few weeks later when another life begins, when my other hand injects her dimpled thigh with high-dose steroids to stop the seizures that just won't stop. Keep holding it as I walk with her screaming for hours and hours and hours, for days and weeks and years. Place your hand on my back as I stoop over her and use my fingers to pull her shit out when she's so constipated from drugs and fat and cream and sluggish ketones in her blood that she can't do it herself.  Hold my hand again and whisper confidence when I pick her up off the floor and frantically look to see where the blood is coming from -- the base of her neck? the natural part on the left? over her ear? Hold my hand when they bend her in half to draw the fluid from her spine to relieve the pressure in her skull. Sit with me and watch as they slide her, like a tiny wrapped package, into an ambulance, a PET scan. Watch with me as they roll her away. Hang with me and wait for the doctor to call back, for the insurance company to send the check, for the seizures to stop, for the marriage to fail and the heart to scar over.

Stay with me for months, for years, for decades and reassure me that this sacrifice is a noble one.



ADDENDUM:

The brilliant public policy writer and poet, fellow caregiver and friend Jeneva Stone wrote this today as a comment on the above post:

[One] factor that drives the anger on both sides is fear--fear of disability. AND for good reasons--look what Elizabeth and I both live through. NO ONE wants that for their families. What's left out of this public policy argument is that the U.S. is willing to pour billions into vaccination to prevent the many, but the U.S. is NOT willing to support caregivers and their disabled children (the few) to the extent that these families can lead lives of reasonable freedom and normalcy. We're just the "outliers." Until U.S. public policy on vaccination also supports outliers, people will continue to be afraid to vaccinate: the emotional, social and financial costs are unbelievably high for caregivers, and the solution is not, as my brother-in-law once told me, "to become poor." Everyone who is afraid to vaccinate their children can see how badly disabled children and their families are treated: from the lack of accessible housing to social ostracism to financial collapse. We have here the convergence of obvious societal indifference to severely disabled children and an emerging public health crisis. While intellectually I support vaccination, frankly, I empathize with the people who are afraid--why berate them? Redirect your passion to ensuring that people don't have to be afraid to vaccinate because the consequences of disability are so dire. Repair the social safety net--everyone knows it's gone.

Yes, I vaccinated my kids. But I could easily have believed that Robert's problems were triggered by his MMR vaccination, which occurred just before his dystonia manifested. I've spent a lot of time with top geneticists and neurologists: no one will say there's any innate connection between vaccines and the onset of genetic disorders (because that is likely neither true nor responsible), but stress to the body can trigger an innate genetic variant. All of us have variants. Our information about how these triggers work is incomplete, and triggers also include growth, viruses/colds, eating too much protein (or other nutrients) when you don't know your body can't handle it (which led to "basal ganglia meltdown" in one patient). Correct: vaccines are not a probable direct cause of the majority of childhood disabilities, but they may contribute indirectly to early manifestation of genetic disorders. And I don't think the problem should be waved away, as "oh, but that was going to happen anyway" because we also can't gauge the relative impact of early or late onset. Say the MMR contributed to early manifestation of Robert's genetic disorder. Say he might have developed typically for a while longer--developed more speech, say--maybe then I would have had an easier time with educators and fewer doubters about my child's relative intelligence.

And an "oh that was going to happen anyway" is just brushing under the rug another deeply serious public policy problem. NO ONE aside from Warren Buffet has the resources to pay for proper care for a child with severe disabilities--the cost of medicine has risen high enough that it's impossible. No one is more responsible than caregivers are--would you have the patience and commitment to do what we do every day?