Wednesday, June 29

if you want to understand me, voila.

Many thanks to fellow CFS sufferer Jessica for making an extremely accurate infographic of my life. 
Our lives. 
 And thanks to my fellow spoonie Lauren for sharing it with me.

unexpected


It’s a chilly June morning. The cold lights a red swollen fire in my throat and keeps it burning all season long. “I’ve got a virus at the moment,” my sister warns when I ask her if she’d like to join me on a walk. “Oh no, me too,” I reply. I mean, I have a glandular fever flare like last week and the week before, because it’s permanently active. When I expend extra energy, resources my body usually uses to control the virus, things become a fiery hell. A day in bed. It sounds fairly innocuous. But then again, all things seem innocuous in small doses, and I have a full time job now. We made a decision earlier in the year that we would either move to a warmer climate or buy a winter-long supply of the only thing that helps. The thing is not at all cheap, and not at all vegan, but it helps contain the flare radically. We ship it on bulk from the US. It is made from a calf’s thymus gland, a protein that my immune system needs more of to fight infection.

But I digress from the cold morning. I hustle to eat breakfast, tidy up the lounge, have a shower, because I have to lie down at 8.30 am with the poppet. Aurelia sleeps radically better next to a human, and we made a decision to stop the cot fights and fails, and co sleep for now. I only resent needing to nap with her when I compare to the women whose babies sleep alone, in cots. Comparison is especially the thief of joy in parenting. I know some mums get ten entire minutes to sip a hot drink all by themselves because they share it on social media. I fantasize about cleaning the bathroom without my often groaning spectator. On the weekend I was whittling through the flesh in my lobes, trying to re-pierce my neglected holes because my morning slot is a mad rush to get up and get back to bed.

Neither Aurelia nor I believe that we need to go to sleep at 8.30 am. We lie down thinking this is quite unnecessary, and that of course we can both stay up all day. But in a few minutes she surrenders, and as I surrender to mothering her in this manner, a sleepiness I could have sworn I would not feel, creeps into my eyelids. Maybe this isn’t such an encumbrance after all. Maybe this is actually the perfect thing.
The irony does not escape me. I feel a lot worse on days where I busy myself in these sleep slots. My baby, whose sensitivity and high demands require more hands on mothering than I’d expected, her needs also force me to lie down twice a day. An unwanted, frequently bemoaned, and yet vitally restorative practice. I do not believe in random events, and I thank my Creator for the silver lining.

I sense that silver linings are woven into the universe, and with time {sometimes many years}, and a softness of heart, we glimpse them. Closer to home even than rainbows and stars in the dark.

I grieve winter’s effect on me, but when spring arrives and we drive through the country and buy our first jonquils for the season, I swear I am happier than most. I get a relief+joy cocktail appropriate to the degree I have suffered.

Having a sensitive daughter is similar. She asks for physical contact all day and all night, and when I recoil from the intensity, I remind myself to lean in rather than pull away from her needs. People everywhere try to procure smiles from her, as she holds her face with porcelain solemnity. They would like to hold her but she dissents loudly and clams up, apart from with one person she knows well. Later in the warmth of our lounge we are privy to the hugest smiles, most adoring eyes, scrumptious cuddles and giggles. That leaning in to meet her needs for security? It is rewarded with the most exclusive view of her true person. The smile she gives me when she wakes from her nap to see me lying next to her? It’s like the golden sun coming out, not even behind a cloud.  

I’ve written about my closeness with Ben, and the chance I’ve had to learn to sew, the unexpected light in the pain and isolation. I love that I must always be fit and healthy because of my diet and exercise regime. The friends I’ve made through computer screens are intuitive, sensitive, compassionate and suffering women who I will love for all my days. Being awake while operated on has been my worst fear for a long time, but even that way of birthing came with a strange glow of empowerment after surviving the ordeal. I didn’t realise till Aurelia was born that having a tiny baby, while complicating things immensely prenatally, also meant that she would be my tiny baby for a lot longer than usual, and it delights me.

But there was one sizable cloud that didn’t appear to have a silver lining. I have long wondered what the point of my education in music and ballet was, once my body brought it to a close. The hours and years of dedication seemed to be a snapped branch. Did it have a place in my life beyond a wistful memory?

Only years later do I see that without the richness the arts bring me daily, I would be even more prone to despair. Sustaining my mind in a long illness; this is an immense value. I don’t want to end my life so much when I have danced around the lounge to Tchaicovsky to Aurelia’s delight, when I have listened to a composer’s representation of all the emotions on the human spectrum and felt understood, seen myself in the characters I read of, been transported in these books to harder eras, and breathed in perspective. If education’s purpose is to enable us to live a rich, abundant life, then that richness is beneficial all the more when we move into a barren place. That richness is sustaining life. Susan Shaeffer Macauley shared in her book this quote: “Education is a matter of the spirit.”
I know this now.

I want to get up even though I hurt, and smell the ocean again, and create a garment, and read another poem, and hug my scrumptious baby, and eat more cake. I think that there is an iridescent lining attached to each crushing cloud.

“There are always flowers for those who want to see them.”

Henri Matisse