Every few weeks, I drive 45 minutes into Pennsylvania to see a massage therapist. I've never really liked massages, and I would never have said that I believe in energywork, but of all of the doctors and therapists I see (dry eye opthalmologist, retinal specialist, GP, endocrinologist, social worker, psychiatrist, gynecologial surgeon, physiatrist, oral surgeon, the list goes on and on), she is the most gifted healer.
Saturday, January 20, 2024
in her hands
Every few weeks, I drive 45 minutes into Pennsylvania to see a massage therapist. I've never really liked massages, and I would never have said that I believe in energywork, but of all of the doctors and therapists I see (dry eye opthalmologist, retinal specialist, GP, endocrinologist, social worker, psychiatrist, gynecologial surgeon, physiatrist, oral surgeon, the list goes on and on), she is the most gifted healer.
Thursday, September 7, 2023
on being seen
It's been a tough few months. OK, a tough few years. But for now, a tough few weeks.
I've been feeling the most sick I have felt since this all started and there are no answers yet, even though I have some people on my "health team" who I have to keep remembering do care and are trying to help. They're now thinking maybe it's Sjogren's, so I'm slowly getting tested for that (so far it's a bunch of negatives). School started, and I have to muster all of my happy energy to welcome new and returning students. My husband is traveling for work a lot this month. We lost my mom in February and his mom just a few weeks ago, also to cancer, so there's the not-knowing how to support someone when your relationship is already not as good as it could be, when you coexist in the same house but don't know how to do marriage any more. Sometimes I'm not sure what I can tell whom, whether work friends are life friends or just work friends or somewhere in between. My older kid is a senior in high school this year, and today was the first day of school, I'm starting to grieve what I know will be a hard transition. It's a lot for anyone, and as my therapist pointed out, when you're depressed, you don't really cope very well.
And then there was this morning.
A few months ago, the gas station on the corner of Cherry Valley and Route 206 was bought by a lovely young guy whose name is Sunny. He's from Pakistan. I only share that because it's important to him.
The first time I met him, he was so excited to introduce himself, to welcome me to his business. It was the most awesome gas pump visit ever. And so the next time, I greeted him by name. It made him smile, and it made ME smile, and now he calls me "my dean." When I drive up, he says "hello, beautiful!" We always have actual conversations: about people, about families, about religion, about mental health (his brother is a therapist), about life. He says he loves coming to work because he loves all of the people he meets, despite the insane hours on his feet. I met his mom and sister in Pakistan on a Facetime when I happened to be there one morning while he was on a call. I told them he was famous. He's met my daughter, and lectured her on the importance of mothers in your life. He introduced me to his wife, who is finishing her degree in social work; she's interested in end of life care, and we talked about the real need for this role in eldercare. He offers me coffee, and I always politely decline, because I've had my one cup, and then he offers me water. It's an unlikely and probably not very deep but heart-warming relationship, and I always drive away smiling.
Today was a particularly tough morning. I've been especially depressed and hopeless the past few days. My vision has been so bad that I thought I was going blind yesterday. I woke up feeling like crap, with a headache and feeling like I was going to be sick, was trying to decide whether to go get my blood drawn to check my sodium (because that's the only way you can check it and those are symptoms of hyponatremia to which I'm now prone thanks to my medication for diabetes insipidus), and noticed I needed to get gas. So I went to Sunny's.
I didn't see him when I drove up to the gas station. He recently hired someone else, so I thought maybe I'd end up with the new employee pumping my gas. But just as I was settling into that possibility, there he came, running up to my car from somewhere I hadn't seen.
"Hello, beautiful," he said, sticking his arm and head into my open window. He thrust a bottle of water past the passenger side to me. "I saw your car drive up and I grabbed some water for you."
As he walked away to start the pump, I clutched the Poland Spring to my chest and started to cry. (Which is always a relief because sometimes my eyes are so dry they don't even make tears.) And of course I was still crying when he came back to start his conversation.
"What's wrong?" he asked, genuinely concerned. I shook my head, still clutching the bottle to my chest. "What's wrong? Tell me, friend," he urged.
"I've been sick for a long time, Sunny," I managed to say. "It's OK. I just really needed this kindness this morning."
"Tell me," he said again, gently, holding out his hand over the passenger seat. I grabbed it with both of my hands, held it.
"It's OK," I said. "I have a therapist."
"Friends are more powerful than therapists," he said. "I get off work at 11. You come."
"I can't," I told him. "I have to pick up my kids after work."
"I will be waiting," he said. "You come." And he ran to take care of the next customer.
~~~~~
That would be a good end to the story. But there's more that matters, I think.
So I went to get my blood drawn, and on my way out, I got a text from one of my colleagues, with whom I'd spent two hours in close contact last night at a college sponsored event that I have to co-host. After feeling not great last night, he tested positive for COVID this morning.
I felt so angry again. I'm already sick. I'm already trying to spin many plates alone. I'm running on empty. I can't afford to get COVID right now.My work guidelines say that if you're exposed, you come in anyway, and wear a mask. You test on day 5. So into work I went, texting everyone I knew I'd see, trying to do damage control from the event last night, trying to plan for the week ahead just in case. I canceled plans to visit my high school English teachers, whom I haven't seen in almost a year. I let my therapist know so she could tell me she wants to be virtual next week.
I went to my office, closed my door, sat down, and drank my Sunny water.
A knock came. One of my colleagues.
Who dropped a brown paper bag on my desk with a single chocolate chip cookie, and a note that said "While it won't remove all of the annoyance, hopefully it came bring a smile."
So here I am crying again.
Because sometimes it is so hard to try to communicate all of your needs when there are so many freaking needs, and you feel like you're completely exhausting because you have so many needs, and when people just SEE you without you needing to say a word, it breaks your heart wide open.
Wednesday, April 12, 2023
and then
I had titled this blog post a long time ago. I don't know what I was thinking when I did, but it seems to fit ... the continuation of something, but not clear what, and no end, just leaving us all in suspense.
and then --
No, I'm actually not OK.
Two opthalmologists and a neuro-opthalmologist say there's nothing wrong with me, and yet I can't see right. Things are randomly blurry. My eyes hurt. I can't read past the floaters. The ringing in my ears is out of my control. The dripping down my throat is out of control.
The endocrinologist I was supposed to see two weeks ago in Philly for a second opinion about the pituitary condition potentially triggered by the concussion and causing dehydration called while I was 20 minutes away and had to reschedule to this week. My mammogram last week, which was supposed to be a two part mammo-and-ultrasound (which is how it always happens for me), got completely fucked up so now I have to go back in for second imaging and then an ultrasound on yet ANOTHER day. I saw a THIRD ENT last week, who said he'll treat me like everyone else (he doesn't think it's a CSF leak) and just suggested sinus surgery. My physiatrist, who I thought was the only one who actually gave a shit about my case and was trying to put the pieces together, after I sent her an impassioned plea through my portal to ask who can help, told me in a one line response to "send her an update" when I schedule my sinus surgery. Today, because I am truly fucked, the gastroenterologist I was supposed to see in May (for my first colonoscopy, after my second parent now died of GI tract cancer) called -- they're out on medical leave -- and rescheduled my appointment to July.
At the end of every appointment, they all say the same thing: "call me if anything changes."
Except that's why I called them in the first place.
Because things have changed, and I am not OK.
Because I am not OK, I called a therapist. She is out of town, but will see me the 17th. I talked with her on the phone, and she sounds kind. If I can make it to then (I can make it to then, right? It's only five days from now) I will pay her to care about me, because no other health care provider does any more. She was concerned enough about what I was saying to her that she referred me to see a psychiatrist ASAP to be "cleared." I called his office. His earliest appointment is the 26th.
But if "anything changes," I should go to the ER. Which will tell me I'm not an emergency because I'm not having a heart attack. I know, because I've been there before.
Friends, I am not OK. This is all not OK, because I am definitely not OK.
and then --
Wednesday, March 15, 2023
Mostly OK, and Thai Butternut Squash Soup
(made a while ago and adapted from the NY Times, and probably what I should be making for myself tonight, both because it's acting like winter and because I could use something warm and comforting. Except I am tired of cooking, too.)4 T. coconut oil or neutral-tasting oil
3 medium shallots, diced
1 (2") piece of fresh ginger, peeled, thinly sliced
1 lemongrass stalk, cut into 3-inch pieces
Kosher salt
2 medium butternut squashes (about 4 lbs.), peeled, seeded and cut into about 3/4-inch cubes
2 (13.5 oz.) cans coconut milk
4 T. Thai green curry paste, or to taste
3 T. fish sauce (or soy sauce for vegetarians)
3 to 4 c. water or chicken stock
FOR THE GARNISH:
¾ c. raw peanuts
¾ c. unsweetened raw coconut flakes
2 T. fish sauce (or soy sauce for vegetarians)
8 small dried red chiles, thinly sliced (optional)
1 T. neutral-tasting or melted coconut oil
1 T. minced lemongrass
1 t. sugar
10 lime leaves, thinly sliced (optional)
Handful of Thai or Italian basil leaves, or cilantro
2 to 3 limes, quartered
Friday, February 10, 2023
Pick Me Up: a Story of Losing and Love in Isolation, with Honey Snack Cake
I cried. I thanked him profusely. I gave him the biggest tip he'd probably ever gotten from a single small delivery. He told me I was kind, that it was his job. I told him he was the kind one, that I was so very grateful.
Monday, February 28, 2022
The King Cake Gift, and Coconut Flour Banana Chocolate Chip Bread
A few weeks ago, during staff meeting, my colleagues and I were reminiscing about pre-pandemic times in the dining hall, when the staff would put together a Mardi Gras spread like you've never seen: shellfish, po'boys, king cake, beads, you name it. We figured that the likelihood of a Mardi Gras celebration this year is pretty low, given that the dining hall has been short-staffed, supply chains have been unpredictable, and everyone is just plain old weary. I started waxing rhapsodic about king cakes, pining away for one, and one of our colleagues mentioned her friend's recommendation of Haydel's, which she said was the best king cake there was: totally authentic New Orleans.
I decided that I needed to order a king cake to lift everyone's mood. A real king cake, from New Orleans, from one of the famous king cake bakeries.
Except I didn't act on my plan until it was waaaaay too late to order in time for Mardi Gras, at least from any of the big bakeries.
I took to Facebook, to see if I could find someone in the New Orleans area to pick one up and ship it. People had all kinds of good ideas (Goldbelly, etc.), but most of them were dead ends. Except one.
One of my friends suggested that I get in touch with a friend of hers, a "good guy," she said; "I bet he'd do it." So I messaged him, telling him that he didn't know me from Adam, but would he be willing to pick up and send me a king cake, and I'd venmo him whatever he wanted?
To my utter surprise, he said yes, sure, he'd do it. And, it turns out, his neighbor owns a coffee shop (hey, if you live in New Orleans, drop in and say hi from me, OK?) which gets regular king cake deliveries from Nonna Randazzos, one of the other big king cake bakeries.
When he told his neighbor about my crazy scheme, he gave him a king cake to send to me. He told me not to worry about the cake, and just sent me the receipt for shipping.And so four days later, there I was, sitting in our staff meeting, with a fresh king cake from New Orleans.
And: I found the baby.
With all of the shit going on in the world right now, with so much pain and suffering and war and violence, that king cake was a glimmer of hope and faith in humanity.
I didn't take any pictures of it, because it was too tasty, and we gobbled it up. But I'll leave you with coconut flour banana bread, which I made this weekend, and which is also pretty tasty, and because, chocolate.
Happy Mardi Gras, everyone. Lassaiz les bontemps rouler. The world sure could use some.
Coda: the dining hall did Mardi Gras after all. Jamabalaya, king cake and all.
adapted from detoxinista
For a while I was feeding this to my son for breakfast, telling myself that it was healthy and full of protein. You can tell yourself that, too.
3 very ripe bananas
3/4 cup coconut flour
5 large eggs
1/3 cup coconut sugar (light brown sugar works fine too)
1 t. ground cinnamon
1 t. baking soda
1 t. baking powder
1/4 t. fine sea salt
1 t. vanilla extract
A generous handful of mini chocolate chips
Preheat the oven to 350ºF and line a 9-inch by 5-inch loaf pan with parchment paper.
In a large bowl, mash the bananas. Add the coconut flour, eggs, coconut sugar, cinnamon, baking soda, baking powder, salt, and vanilla. Whisk the batter together well, breaking up any lumps so a smooth batter is formed.
Pour the batter into the lined loaf pan and bake until the center of the loaf has risen and started to crack, feeling firm to the touch, about 45 to 55 minutes. Remove the parchment onto a rack and cool completely before slicing and serving.
Because this loaf is moist, be sure to store it in an airtight container in the fridge. It should last a week or so; you can freeze it, too, for a few weeks.
Tuesday, February 1, 2022
The Care Ring and Murgh Keema
The Caring Committee is meant to be the Casserole Brigade, a temporary support system of regional Care Rings that activate when people are sick, or when there's been a loss, or when people need a grocery delivery or a ride: when people have an acute material need. Helping people to make decisions to get hospice care and getting them connected to the right resources are, unfortunately, out of our wheelhouse. But that's what people really seemed to want us to do, as her friends surrounded her, were stepping in to give her a sponge bath or other personal care. I spent a good part of the week trying to be clear about what the Care Ring could (e.g. remove snow and ice) and couldn't (e.g. call the social worker) do, reminding her friends that they also needed to tend to their own hearts and that even the most loving of friends can't be expected to do these things. I tried to let people know that there were going to be other opportunities to help, that there was a village, that one person didn't need to go rushing in and feel like no one else was there. I tried to help them understand that we needed to empower her and her husband to make difficult and painful decisions that maybe we didn't agree with. Or even to empower them not to decide.
Despite all that, while I felt like it wasn't fair to ask her friends to do those things, I also know that I would want a friend group like that if I knew I didn't have much longer to live. And when we learned she was gone, I know they were glad to have done these last things for her.
The other morning, seeing a photo post from one of those friends of a group of women eating and being silly and just enjoying each others' company, I confess I felt sad and lonely. I don't have a group like this, a group that I hang out with or go on adventures with or even eat a meal with when I'm not with my family. This is probably in part because I work full time and have chosen to prioritize my kids and cooking and things like that when I am home. I don't work hard at group friendship, I've never joined any of the covenant groups in my church (which are effectively social connections with a spiritual common ground). But it's also because I've just never really figured that kind of thing out. And sometimes, on the darker days, I wonder who will be there, besides my husband, if I ever need it. Maybe the Caring Committee will bring a casserole. But also maybe not. Because they didn't when I broke my foot in March 2020, or when I concussed myself in October 2020, or while I have been freaking out about my health over the past month. Then again, COVID. So no one was bringing casseroles anywhere. And ... I didn't ask them to.
I realized this morning that maybe the 300 pound gorilla sitting on my chest making me contemplate my own mortality is probably not just my own health stuff but also my body remembering February, which is my month of multiple pregnancy losses and the complicated loss of my father, as well as my daughter's birthday. So there's that. But still.
No Kidding in NZ posted the other day about needing a bigger support network. I couldn't agree more; if the pandemic has shown us anything, it's that we desperately need each other. I don't think that those of us who have children can take that care for granted, because we can't rely on our children to be our caretakers, especially if they need care, too. And the larger village is out there if we think about it. Sometimes it's just hard to remember who they are because we're not used to asking for help.
On that note, I called my endocrinologist on Friday, after some encouragement from Mel. He took my call right away, between patients, without me needing to leave a message, and said that it was clear that something is wrong, and it's just a matter of finding out what. He proceeded to order a ton more blood tests, so I left another few pints at the lab this morning. Which gave me some hope, at least, that maybe someone can help me figure out what the hell is going on with this crazy body of mine.
And I go to the cardiologist on Wednesday to follow up on my two ER visits, but they called me yesterday morning. Apparently my two week heart monitor has shown ventricular tachycardia (the reason I wake up in the middle of the night feeling like my heart is pounding? is because it actually is pounding, at a lively 163 BPM). So I get to start taking beta blockers. Except that means I can't take the only thing that has made me sleep since my concussion in October 2020. Heart attack or insomnia from hell? I get to choose.
If I have to go on some kind of special diet, that will really curtail the bringing of casseroles.
Go give your Care Ring some love today.
Murgh Keema (or Turkey and Peas)
This is a recipe from Madhur Jaffrey's Quick and Easy Indian Cooking that I make often at home, and that the kids really like. It's the sort of easy to digest meal that I might bring over to a friend who isn't vegetarian. If you're vegan, you could definitely use Impossible if you're into that, or probably even tofu crumbles ... if you do that, let me know how it goes.)
cinnamon stick
4-5 cardamom pods
2 bay leaves
1 small onion, peeled and chopped
3 cloves garlic, peeled and minced
2 t. peeled, finely grated ginger
1 1/4 lb. ground chicken or turkey
8 oz. fresh or frozen peas
1/4 t. turmeric
1 t. garam masala
1/4 t. cayenne pepper (optional; we leave this out for my daughter)
1/2 to 3/4 t. salt
2 T. fresh lemon juice
freshly ground black pepper
Heat the oil in a wide pan over medium high heat. When the oil is hot add the cinnamon, cardamom and bay leaves. Stir for a few seconds.
Add the onion and fry until the pieces brown at the edges. Put in the garlic and stir for a few seconds. Add the ginger and stir for another few seconds.
Add the ground meat and fry and stir until all of the lumps are broken up.
Now add the remaining ingredients. Stir and mix for another minute before removing from the heat. Serve with rice, or quinoa, or naan, or whatever makes sense to warm your belly.