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I live in Los Angeles, where I write and blog under the California sun.

Doubt, Depression and Detachment--A Cost of Parenting a CWN

Doubt, Depression and Detachment--A Cost of Parenting a CWN

I wrote this piece 8 months ago. Since then I have debated whether to post it but I strongly believe that many parents seeking to raise a chid with a chronic illness such as Narcolepsy face similar struggles which affect their own health. It's not pretty, but it is real and by sharing this part of my story I hope many of you feel will feel less alone.

I have several friends who are always happy—as in, every time I see them. And I love it because without knowing, the Jenny's and Alli's of this world give me something  intangible, like sunshine. It’s something sweet to treasure for the rest of the day. And then, that reliable joy is there once again, the next time we meet.

If I'm honest, sometimes I come away thinking “Do they ever have a bad day? Do they ever get irritated and flip out?

Are they still smiling when there's not so good news?”

I should add that it would be easy to mark such people out as shallow, superficial, and ridiculously blessed. But that would neither be fair nor honest. For they are no different to the rest of us in that they have known the grief that comes with sorrow, hardships at home, and personal struggles unseen by most. Perhaps it is best explained by saying that their internal compass is set in a slightly different direction to mine.

Of course what I'm really doing is comparing others to how I roll, which only amounts to feelings of negativity on my part, and perhaps, at times, even failure. Comparison kills contentment, and I should know better.

I say this because in the face of adversity, I think I'm supposed to be jolly and victorious. I should  delight in affliction because it is going to do me some good or other, perhaps even reshape the defects in my character. I'm thinking of the verse from 2 Corinthians 4:17 - that says, “For our light affliction, which is but for a moment, worketh for us a far more exceeding [and] eternal weight of glory.”

Yet after years and years of sleep deprivation where I am up somewhere between 2- 5 times night with our young CWN I found myself crying at the doctor’s surgery last January.

In fact I didn't really even tell her the worst of it: that as it grows dark every night, there's a panic gathering momentum in my chest. I dread the next ten hours because they will only bring me a few broken hours of rest. Then, in the mornings, I rely on my family and the coffee pot to lift me out of that bleak space.

Rare are the nights that bring a sense of restoration.

Dr Elios hugged me, then wrote out a prescription and asked me to check in again in a few weeks. Sleep deprivation it seems has brought about a sense of detachment and left me downcast. The world only ever looks grey as though I'm looking at a black and white polaroid despite all the sunshine here in LA.

I was able to describe it like this: some days, I am merely an observer, watching what is going on but not really having any part in it. Any tiny every day things like the kitchen sink leaking can tip me over a teary edge. The effort in getting it fixed seems simply overwhelming. I don't even want to think about all the scientific evidence for what may or may not be going on inside.

Someone sent me a list by way of an email a year or so ago on the long-term serious side effects of sleep deprivation. I got past the bit about hypertension, strokes and diabetes, and then threw it into the e-trash. Only recently the Professor said something to me that cut me to the quick: "It's possible, Claire, that our lives will be shortened as a result of  being up every night." He's probably right, but what thought!

Culturally speaking, as a Brit, owning up to living in the shadows of sorrow can be seen as a weakness. But that's silly and unhelpful. Plus, it is a unique path. Most of us can relate to being up all night with a newborn, yet our CWN demand a similar type of nocturnal attention--only they never grow out of it. They take their meds, eat, pee, often cry then flop back into bed, by which time the Professor and I are wide awake knowing there's only 3 hours until it starts all over again. Mathilda is 10 years old and we have been caring for her since she was three, when Narcolepsy struck.

The beaches of LA are stunning all year round and only 45 mins away from our house.

The beaches of LA are stunning all year round and only 45 mins away from our house.

It could be argued that recognizing one’s sense of detachment and depression is a strength if it ultimately leads to putting in place measures that lead to mental restoration.

And, frankly, it would't be fair to my family if I didn't take an honest look at the extent to which chronic tiredness has lead to me feeling so flat in the past.

I count myself very fortunate in all this. The Professor and our kids are absolute treasures, we live in a place that is close to paradise, we have the best healthcare available and a super-supportive community surrounding us. When we first came to Pasadena, I honestly thought that if someone couldn't be happy here in the suburbs of LA, they couldn't be happy anywhere.

It would seem that those with Narcolepsy, and those caring for loved ones with the condition, are exposed to a level of exhaustion that can threaten our perspective on life. And, if as a parent who only has to be up medicating their child with Narcolepsy every other night, one cannot help but consider how much harder it is for our children who do not recall what restorative sleep feels like?

Whenever we see Mathilda's Sleep doctor, he reminds me that because she was so young when she developed Narcolepsy, she doesn't remember what it's like to not have it—not to ever feel truly rested.

I imagine that it's not entirely unlike like being born blind.

If you've never seen green grass, you don't really know what you are missing. After all, how does one describe the deep riches and various tones of the color green, or explain the movement of color in a pool of water?

How do I explain to Mathilda (age 10)  that her severe levels of exhaustion are not understood by her peers or that she will have to do a good job at explaining the nature of hypnogogic hallucinations to her partner?

Sad as this is, not knowing what a normal night of sleep is like might just be helpful as she enters the challenges of the teen years. I suppose (to some extent) what you don't know, you don't miss. As a parent of such a child, and 8 months into being on medication for insomnia and depression, keeping up a little exercise here and there and spending time reflecting on all the genuinely positive things is helping to reset the equilibrium. Plus the Professor has taken the lions share of the night shifts and with a bit more rest, my world is turning on a more even axis.

It' never easy to own up to doubts and feelings of despair. Yet there is truly a privilege in being a carer, purpose in the long nights as we search for sleep either side of dosing Mathilda, and a genuine hope with each new morning.

And for the 3 million people with Narcolepsy worldwide I have gained an insider’s view of the reasons why they often feel blue, although I recognize my sleep deprivation is nothing compared to what PWN experience. Yet I am able to relate better to those who are afflicted with depression, and understand the tension that comes with being a parent/carer who doesn't have all the answers and doesn't always feel triumphant.


With grateful thanks to the Professor, my sweet children, the Jenny's and Ali's of this world, our community of friends at Knox Pres and Dr Elios. 

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