Just Ten More Minutes

Here are 3 reasons I might consider relocating to China:

1.

Sophie had an unexpected seizure this morning, right before I fed her breakfast, and instead of waiting for her to fully recover, I acted impatient and shot a syringe of her medicine into her mouth which I believe went down the wrong hatch which precipitated a bout of coughing and gagging which necessitated me putting together the suction machine and suctioning her mouth for what seemed like a half an hour which necessitated a 911 text to my friend Sandra about my inability to do this. I believe I texted I can't do it and she replied What's happening? and I said life and she said, then you can. And it's all fucking impossible. And you can. I then listed a litany of complaints and wondered if I should go on or try some gratitude? Sandra texted back:

In a nutshell -- or should I say the nutshell, Sandra's advice is to take time and whatever horrors it's throwing at you in ten minute increments. Can I do it for ten more minutes? Another 10? Another 10? Until I get through another full hour...then day. Suffice it to say that the 10-minute increment rule worked for me today, and I managed to get Sophie to her day program, but I've said it before, and I'll say it again: I'm done, toast, burnt. Sandra sent me this, too:

Reader, I do love a good sign.

2.

I'm struggling financially despite a near full-time job and will soon have two sons in college. Will I ever get ahead? There's my actual head, I suppose, which is stuffed full of all kinds of lovely things, but if it weren't for my neck, it would have long since spun off into the cosmos. Is there such a thing as ahead? I love my job teaching English, but there's no work over the summer. I've put together a few writing workshops and am still baking cakes, but neither is a living. Sure, I'm grateful for the help given to me by my parents and by the State of California, but I feel shackled and can't help but fantasize about a simpler life -- something I imagine is as illusory as getting ahead.

Are you still here, dear Reader?

3.

We have a rat infestation in our attic. Yes. We have a rat infestation in our attic. One more time. We have a rat infestation in our attic. 

Did I ever tell you the story of the job I accepted to teach English in Taiwan upon graduating from college? I was obsessed with all things Chinese -- had studied the language for two years, read avidly the poetry and religion and history and was just gobsmacked by the possibilities. I was 21 years old with all of life in front of me. Alas, I was persuaded to give that up for -- let's say -- love, and while I don't regret the choice I made because it brought me the rest of my life, I have a chance here to -- well -- flee that rest of my life. Reader, do you wonder? Is she serious? Has she lost her mind? Was it a rat that drove her to it? 

Stay tuned. Just ten more minutes.

It's NaFaCaMo, Folks!

I'm actually a day late to inaugurate the National Family Caregivers Month series of blog posts that I plan on writing in November. My friend and fellow Family Caregiver, Sandra, likes to call it NaFaCaMo as a sort of twisted take on NaNoWriMo, when writers the world over write a novel over the thirty days of November. There might be some NaNoWriMo folks out there who are also celebrating NaFaCaMo, but let's call a spade a spade and admit that if you are doing both (writing a novel and being a family caregiver) -- well -- we don't believe you. Despite the fact that President Obama wrote a very nice proclamation for this significant month (you can read it here), and I'm basically a sucker for everything that man does, including being recognized as a full-time caregiver of a disabled family member, my interest on the old blog is to tell it like it is and is means uniquely slanted (biased) toward the dark-humored, the rueful, the cut through the inspirational crap about being a full-time caregiver.

In the dark days of the last century when the internets were just a kernel of rice in the brain of Al Gore, my friend Jody, whom I had met in a mothers' support group at New York Hospital in that other big shitty, turned me on to a newsletter for mothers of children with significant disabilities. It was called MOH, or Mothers From Hell, and it was a perfect antidote to the treacly Mothers From Holland that was de rigueur at the time.  

Don't get me wrong. There are a myriad of blessings that come with being a full-time caregiver, and I've written literally hundreds if not thousands of posts here that testify to what I say is the honor of caring for someone who is entirely dependent on me.  I can tell you about resilience and virtue and strength and a community of human beings that are, without doubt,  the most courageous people on the planet. A designated NaFaCaMo calls for some levity, though, because -- well -- just because. I've just come out of a particularly grueling couple of months with Sophie in a sort of perpetual crisis that culminated in a fairly useless hospital stay that cost nearly $70,000 (so far, and I'm not joking). It took her approximately three weeks to recover from that stay and whatever was going on before she was admitted -- three weeks of barely being able to walk, of losing weight, of near-constant seizures in the early hours before dawn, among other atrocities. I'm thrilled to say here that she's turned a corner and is back in school with a spring in her step. It seems that the combination of increased Onfi and a new version of CBD and THC is doing something good, at least for now. I don't want to jinx it, though, so let's not dwell on this perhaps temporary hiatus other than to give thanks. Thanks!

It's taking me longer and longer to recover from these downturns, though, and can I tell you that it's not really Sophie -- or her disabilities -- that takes its toll. It's what we call the systems of care -- or lack thereof -- and the culture in general that makes our lives so difficult, when they're difficult. 

Hopefully, I can touch on some of these issues over the next month. I'd also love for you, dear Readers, and especially you dear Caregiver Readers, to tell me your stories. I want to know what your personal record is for changing wet bedsheets in the middle of the night or the greatest number of calls you've made to your insurance company about a particular charge. I'd love to know what outfits you've worn to IEPs (I myself wear a leotard and do a tightrope walking act) or your methods of dealing with constipation. How about doctors who refuse to acknowledge the efficacy of CBD or who downplay side effects of anticonvulsants? How about commercials for pharmaceuticals and making a case for medical necessity when you have to renew prescriptions at the drug store? What's the longest you've gone without a full night's sleep -- months? Days? Years? How about the siblings? How resilient are they? Did they learn how to buckle themselves into a five-point harness before they knew how to walk? How do you deal with the phrases of the well-intended -- the I don't know how you do its? the God knew what he was doing when He gave you [insert the name of your child], the God never gives you more than you can handle, or my personal favorite There's a reason for everything, and your daughter must be teaching you so much.

Let's hear about the marriages and the divorces -- hell, let's hear about the affairs. You spend a lot of time at home! There are no judgements here during NaFaCaMo! If you're a woman have you turned your home into a convent or cloister? 

And, here's the golden question that I know you've been asked at least two million times:

Are you TAKING CARE OF YOURSELF?

The Suchness of Palms

to Sandra


Such things as
the dentist
and a lopped-off palm,
her cup flung
again.
and the stain
from the oil that drips
and dots the cover,
The pale green splotched with
yellow,
The mermaid's purple tail,
Her seizure
and my prayer,
The nurse's scarf
a drape over the sun,
in your other room.
Your dark son,
his light,
your hand, his heart

Such is,
of the type previously mentioned.


Our tiny mind
and the relentless
grind.

Make-A-Wish Caregiver

Gilles Marini

dedicated to Sandra

I was talking to my friend Sandra last night, checking in on how she's doing. Sandra is the mother of a little boy who contracted a vicious immunological encephalitis when he was two and a half years old that decimated his neurological system. From what I understand, he was a typically developing boy who laughed and played and spoke and ran and jumped, but after a fifteen-month stay in the hospital (yes, 15 MONTHS), he left severely disabled with countless medications as well as an uncertain recovery and future. Sandra, her husband and their son live what I would call an extreme life, where a typical day and night might include battling systems of care and juggling serious medical crises as well as working regular jobs and trying to maintain some sense of normalcy in one's relationships. To people who do extreme parenting, there is often no end in sight. 

I checked in with Sandra because her little boy was going into the hospital again this morning for two surgeries, and I wondered what I could do for her. Sandra has the same sense of humor as I do, which means dark. Very, very dark. I imagine that given the shitty things thrown her family's way, that sense of humor sustains her from madness -- not anger, mind you -- but madness. I don't even think I could do justice to some of the hair-raising stories she has told me -- you'll have to just take me at my word. Madness.

We had a conversation last June about my Brothers and Sisters television show binge, and it was then that she told me about her infatuation with Gilles Marini, the extremely good-looking actor who plays one of the characters on that show. He's so good-looking that when I searched for a photo of him to put up with this post, I didn't even make it extra-large because it seemed almost obscene. When my son Henry began high school, I was excited to share with Sandra the fact that Gilles is a father at the same school, and that I had even sighted him once or twice, most recently at the Christmas tree sale. I know this sounds utterly ridiculous, but I don't care. When you're up all night with a child who is screaming for no apparent reason or waiting to speak to an insurance company for approval of a life-saving medication or juggling the schedules of mediocre nurses who stand you up, or -- god forbid -- trying to do some paid work so you can afford your apartment -- well -- you deserve to hear about your friend's proximity to one of your fantasies. As far as I'm concerned, you can think about or do whatever the hell you want. Whatever gets you through the night, right?

Anywho.

Last night, knowing that there was really nothing I could do to ease Sandra's anxiety or lessen her pain or that of her son, I suggested that I might contact Gilles Marini and ask him whether he'd fly out to the hospital where she's staying and pay her a visit. Sandra said that would make her feel much better, and we laughed like people do online when they don't type LOL (I despise LOL). A few moments later, I had the brilliant idea -- humor my conceited ways, please -- that there should be a Make A Wish Caregiver foundation that granted wishes to the caregivers of ill and disabled children and adults. At this very moment I have three caregiver friends, two of whom are in the hospital with their children for extended stays and one of whom has just left after an extended stay. I have another friend who has been caring for her severely disabled daughter for more than thirty years -- by herself -- and yet another who cares for his young adult daughter by himself. I have countless friends who have been doing this beautiful and extreme caregiving for probably what amounts to hundreds of years if I combined them. Hell, you know from my endless tales here on the old blog that I've been doing the same sort of shit for nearly twenty years! I'm sort of joking about the need for a Make A Wish Caregiver operation -- and sort of not.

Sandra's wish is that Gilles fly out to the hospital where she is bunked down with her recovering son in the PICU. She hopes that he'll give her a tango lesson. Gilles? Are you reading this? Hello?

Readers who are caregivers living the extreme life: what would you wish? Dream big, babies, dream big.