“Follow your dreams,” they say. “Dream big.”
Bits of inspiring advice like these always seemed so full of possibility. That is, until I became the mother of a
child with Narcolepsy.
Now, after seeing this disease up close, I hate talk of “hopes and dreams.” My son doesn’t have the luxury of dreaming like everyone else. My son’s dreams are medically-induced and chemically-regulated. Of course, I realize that literal dreams differ from figurative ones — but for our family, the two ar
e tied together in a permanent duet of possibility and limitation.
For years, our family has left evening birthday parties, avoided group movie nights, and sought special accommodations in theme parks. As I often explain, my son simply has less hours in his day than does everyone else.
Those are fewer hours to study and learn, to play sports or practice band instruments, or to bond with friends and family.
Fewer hours to live.
Although no one dies from “FOMO,” being absent from life is a very real loss, especially for a young person learning to find his way in the world. Friends will have to hear, “I’m too tired to go out,” and trust that it’s not just an excuse. Teachers will need to adjust deadlines, and employers will need to a
djust work schedules. That’s a lot to ask from people who probably have zero experience with Narcolepsy.
Narcolepsy is normal-looking on the surface, but has a dark and depressing backstory. Unlike other “ep
sys,” it requires neither seizure dog nor medic-alert bracelet, and is usually deemed a “sleep disorder.” The whole thing sounds like a benign inconvenience to be treated with warm milk — and not a disease of the brain with serious health consequences.
Physiologically, though, Narcolepsy is far more like MS or Parkinson’s than it is like sleep apnea or insom
nia.
Narcoleptics are missing neurons that produce the chemicals that are supposed to regulate sleep cycles. As a result, they have an insatiable need for sleep that keeps them exhausted all the time. When they do sleep, it doesn’t work quite right; they still feel tired, even after long sleeps, and they sometimes experience hallucinations and paralysis as they wake up.
Narcolepsy is silent and invisible, but also heartbreakingly-debilitating, and it affects not only those with the diagnosis, but their entire families. Every decision, every day, requires a constant prediction of energy levels. And unlike a video game in which reloading or restarting is an option, Narc
olepsy offers no relief.
And yet, perception doesn’t come close to matching reality. You’d think the world would have some compassion for people trying to squeeze their lives into a shortened day. But it doesn’t. This world is built for over-achievers, not chronic-nappers.
If my son had to leave swim practice early to undergo a medical treatment, I’m sure I’d be entitled to those sympathetic you-have-a-sick-child looks that come with infinite accommodations and unders
tanding, not to mention the occasional pity-casserole.
But it’s a little different when he’s leaving to take a nap.
That doesn’t feel quite so medical.
It doesn’t inspire quite so much sympathy.
When my son returns from resting, he has no physical signs of distress. There are no cuts or scra
pes or scars from a port. It’s easy for mentors and peers alike to assume that this normal-looking boy simply needed a nap. And it’s a short walk from, “wow, he needs a lot of naps,” to, “that kid is lazy.”
Cue the stigma and judgment.
Narcoleptics walk among us in a near-permanent state of total sleep-deprivation. And that’s without the secondary effects of the illness.
From obesity to depression, attention-deficit to anxiety, narcoleptics deal with a range of symptoms that threaten psycho-emotional and physical health at the highest levels. And we haven’t even started talking about “cataplexy.”
Cataplex
y is the outward hallmark of the disease for many Narcolepsy sufferers. It’s the principal symptom that lends itself to mimicry and ridicule (think Rowan Atkinson’s character in Rat Race) — which doesn’t do much to help that whole stigma problem.
I suppose it’s hilarious to imagine someone suddenly falling to the ground without regard for injury or aftermath, but the underlying truth is nothing less than sickening. Cataplexy
is triggered by sudden or strong emotion. That means that for narcoleptics — people who are forced to experience life in small chunks punctuated by constant naps — feelings can make them fall down. Excitement, anger, surprise, and even laughter can do serious physicaldamage. Every day activities are dangerous; bike-riding, rollerblading, and of course, driving may not be allowed at all.
It’s maybe not so funny after all.
Then there
’s the medication.
My son is taking hundreds of milligrams of heavy stimulants costing thousands of dollars, and wreaking side-effect havoc. And of course, because these meds are frequently-abused controlled-substances, we are forced to travel to doctors and pharmacies constantly for in-person refills. Because
some meth-head would steal Adderall to cook up their next batch, we’re held hostage to the refill schedule.
And here’s some more aggravation: when we’re on vacation out of state, we face a choice: 1) go without meds during the prior school week and my our son spend it half-asleep; or 2) take a day out of our leisure time and hundreds of dollars to see a local neurologist and get an in-state prescription. All while trying to relax and enjoy family time while dragging around a child on the verge of total exhaustion.
Filling prescriptions often requires a week of prep time and approvals from numerous medical professionals. While I’m not worrying about out-of-pocket costs, I’m terrified about the long-term impact th
ese drugs will have on my child.
As a family, we’ve adapted to the insane level of planning living with Narcolepsy demands. We schedule our meals around doses, our days around sleep schedules, and our trips around our prescription refill dates.
Lazy Sundays mean an opportunity to hoard leftover pills for use in a 31-day month (somehow, 2019 technology hasn’t solved the problem of 30-day refills failing to match up with actual calendars). We book larger hotel rooms to account for nap requirements and we pay for VIP parking so
we can jet home midday for a snooze. We’re okay with all of it, because it’s what our son needs to actually experience his life.
New Narcolepsy drugs were recently approved for teenagers. They have proven critical to improving my son’s quality of life by helping him stay awake and alert more often. With that said, the logistics of getting switched over and on-boarded have taken us on a new journey. The formula costs thousands per month. It requires me to take a day off of work to receive delivery in-h
and from the single American compounding pharmacy to which we have access. Once received, we need to hide the medication from outsiders because the clear liquid could easily morph into date-rape drug or accidental pet-killer.
Our willingness to tolerate the realities of this drug is a testament to its effectiveness. There is no doubt that i
t has changed our lives for the better in ways nothing else has ever done.
Still, it’s a lot to take in.
The first dose renders its user practically unconscious through medically-induced sleep. Midway through every night, I wake in time to administer the second dose (trading my kid’s sleep-depriv
ation for my own).
Mealtimes and bedtimes are scrupulously planned to coincide with dosing guidelines, and sleepovers are only possible when the supervising adult has undergone Narcolepsy training. As a parent, I walk that line between feeling lucky to have access to life-changing pharmaceuticals and cursing my misfortune at needing them.
Now at fifteen, my son sees college on his horizon.
That’s wonderful.
There are many families of children with special and medical needs that will never know the excitement of
college visits or SAT scores. With one foot firmly planted in the special-needs world, I’ve learned never to take opportunity for granted.
But how exactly will it work? Will he get a roommate we can trust not to take advantage of him or his medication? Would it be better for him to live in a single room without anyone nearby? What if he requires assistance in the middle of the night?
These questions are e
specially draining when they’re compared with those of my peers. While they’re concerned about their kid’s soccer scholarship, my goal for my child is simple survival. I’m sensitive to the fact that every mother simultaneously rejoices and dreads her child living independently; that duality
is the very core of motherhood. But this shit is next-level. My nightmare scenario is not that I will become an irrelevant empty nester. It is fearing for my son’s safety and well-being in collegiate life where the community has no sensitivity to the burden he bears every day.
Despite everything, I remain optimistic.
My positivity, however, requires effort.
As medical research improves, so too does my son’s ability to manage his own disease. I’m confident that our propriet
ary blend of education, accommodation, and advocacy will continue to serve him well even as his condition a
dvances with age.
In the end, I’m exhausted by the aftershocks of sharing my family’s life with a neurological illness. Luckily for me, I’ve had fifteen years to learn not to count a person out just because they’re tired.
Author's note: A lot has changed since I penned this piece nearly five years ago. My son has made astounding strides, including getting a driver's license, securing an academic scholarship to a top college, living safely in a dorm room for two semesters, and adjusting successfully to collegiate life. There have been many bumps along the way, but the future is as bright as we always hioped it might be. And we continue to take absolutely none of it for granted.
.