Taking Stock

My doctor was afraid to ask if “that’s all” when I described the roller coaster the last four years have been. It’s enough to make me feel that my head and my heart might explode when I list it: I went to Kenya, I dated someone I expected I’d marry; we broke up. I finished grad school, I went to Hawai’i, came home with lupus and a very near miss on cancer. I spent 6 months in treatment; the second 6 months I would have spent in Hawaii had it all gone according to plan. I got out of treatment, our house flooded and we lost so much. My sister sustained a devastating injury and went on home school, our mom got hurt. I adopted my dog and we got 2 kittens. My spiritual home and safe place—Little Portion—announced they were closing, my beloved godmother died entirely unexpectedly. I spent all day trying to figure out how to tell my mother that her best friend and the godmother to her daughters was dead. I did most of the notifications for our church.  Little Portion did close.  The first Christmas after the closure and the death of my godmother, the only person I wanted to talk to was gone and the only place I wanted to be no longer existed.  I don’t have words to express two such unfathomable losses occurring in less than 6 months’ time.  I was in shock for months, and when I finally cried, I nearly drowned in the shower.

I didn’t know what I’d do when I came back from Hawai’i and went into treatment. I didn’t know how I’d get through treatment.  My body remembers every trauma my mind wants to forget, and even now, I am not allowed to forget.  I don’t know how to navigate a world in which I will get married and have children who will not know my father and my godmother.  Who will not learn to ask, “Are you being goofy?” to determine whether or not an adult is being serious, and who will not then collapse into laughter with my godmother, and who will learn complex math and teach it to their grandfather, wondering if he is pretending that they are smarter than he is as I did when I was a child.  I always anticipated that my father would not live to see me grown–the odds were astronomical–but there was always a hope I might be proven wrong.  My father wasn’t the sort of person one expected to die.  But I could not see a world in which my Aunt Mary would not see my wedding, and meet my children. The weekend after she died, I kept thinking about sitting in the diner with her when I was 16, her telling me that when I got married, I could wear her ring, which was her mother’s ring before her, and that it would be my something old. I kept imagining that day, whenever it may come, and trying to picture my mom and my friends helping me to get ready, but all I saw was the empty space she wouldn’t occupy.

It has never moved beyond surreal that I will marry someone who has never met my father. It is unfathomable that I will marry someone who has not received my godmother’s seal of approval. I didn’t have the kind of relationship with my father that the other girls had with theirs, but for the good, the bad, the indifferent, he is my father. Nothing changes that.  And I desperately want his approval.

I never saw most of what has come to pass coming, and I’m not sure if that’s a blessing or a curse.  I am learning how to live in a world that I could not picture before I found myself inhabiting it.  I do not want to live in this particular world, with no Little Portion, with no Aunt Mary, with lupus complicating things and constantly wondering in the back of my mind if what I’ve found now with my body is too good to be true.  In the meantime, I am contemplating the universe and redecorating my room, un-boxing books and wall decorations with knives in my heart along the way.  The gifts she bought me when I was confirmed in one box, a photo collage from my first trip to see her in Utah in another; cards from two years working at summer camp, along with my dreams of being a missionary in a third.  This life isn’t the one I’d envisioned for myself, but it’s the one I have.  And I am trying to make peace with that.

 

 

The Return

• I posted an essay on summer camp (with a bit of an announcement contained therein) over on tumblr this morning. Have a read if you wish!

Outback Steakhouse

Whenever we go to see my grandparents, we go out to eat. My family is highly motivated by food, and also seeing them while we’re all eating eliminates some of the awkward silences known to most families as we clumsily move from topic to topic.

Because of my celiac, I am incredibly limited in where I can eat safely, because a lot of restaurants have gluten free or allergen menus and allergen statements, but a lot of places have food that is rife with cross contamination. Because I am so sensitive to gluten, even the smallest amount of cross contamination can be a big problem for me, so this means that we generally go to the same few places over and over. But the issue with us going out isn’t only my celiac: my mom and sister are vegetarian, and my sister is a very picky eater.

One time when we were going to see my grandparents, we decided to go to Outback Steakhouse after discovering that they have a gluten free menu. We’ve been a few times since, and recently, we discovered that their dessert, Thunder From Down Under is gluten free. My sister ordered one and our waiter asked if we wanted 3 spoons, and I said no, and he said that it’s all gluten free, and that there are no regular flour brownies. We got three spoons. I had about 3 spoonfuls before I had to stop so the richness and wonderfulness of it didn’t make me sick. Any restaurant where I can get a steak and a lobster tail or a steak and shrimp is good with me, especially if I can also get a loaded baked potato or garlic mashed potatoes. And throwing the dessert into consideration means that Outback is basically my new favorite place.

And I have never gotten sick there. This is a huge win. My sister’s favorite restaurant for a long time was Applebee’s (it might still be). We go there from time to time, and I am not opposed to eating there, but it’s entirely hit or miss in terms of cross contamination, and my getting sick. We always tell them that I have a severe gluten problem, and please to make sure that nothing else touches my food, but flour is something that goes airborne remarkably well, plus if a chief puts a burger on a bun using his spatula and that spatula touches the bun and then touches my steak, it could be a problem for me.

When I was a kid, the Fosters beer commercial was my favorite. I like Australian accents, and some of the idioms that come out of the mouths of Aussies. I think they’re funny. While Applebee’s is more of a hometown bar and grill, Outback feels like more of a restaurant somehow, and the one closest to me is now serving Dr. Pepper, which has always been my favorite soda. (I am perpetually trying to remove soda from my diet, but sometimes it is the only thing that works, and I don’t believe in the complete depravation of something that you really like, because that isn’t healthy.) So that’s something else that Outback has going for it.

I can’t wait to go back to Outback (and also to eat my leftovers). If you have food restrictions, how do you cope with them when you go out to eat? What are your favorite places to eat?

The Year I Was Diagnosed With Lupus – Role Reboot

The Year I Was Diagnosed With Lupus – Role Reboot.

 

The Year I Was Diagnosed With Lupus, my essay published by Role Reboot.

I was 23, and a newly minted Master of Fine Arts, when I left my family in New York to join the Creation Care program at Camp Mokule’ia in Waialua, O’ahu, Hawai’i. Creation Care was an 11-month-long program, and one of a number of faith-based internships run by the Episcopal Service Corps. The program was everything I’d wanted, and though I was terrified to leave my family for such a long period of time, I tried to remain focused on the fact that I would be living in a tropical paradise for 48 weeks…

Continue reading my essay over on Role Reboot!

Walks in the Woods

Zoey Makana and I recently had a milestone: 5 months since I adopted her officially and brought her home. She, like the rest of us, has been through a lot lately. I had a terrible fall and injured myself badly while I was running with her, and though the fall wasn’t her fault at all and though she did everything right once I fell, she felt guilty. Prior to that, as you know, we were dealing with the sudden and unexpected death of my beloved Godmother. Zoey knew that there were things wrong, but not what, and was very concerned, and emotionally worn out. I’ve begun to suspect, based on her reactions, that in her last home, anything that went wrong was taken out on her. I don’t believe that she was ever physically abused, but I do think that she was yelled at on a regular basis. She’s never quite sure whether or not she’s going to be punished.

She has come such a long way in the five months that I’ve had her. She is very sweet, smart, and eager to please, which is very helpful when it comes to training her, though she knows her own mind, and sometimes isn’t obedient because it doesn’t suit her, which while it may frustrate the trainer is quite endearing to her independent Mama. She knows how to communicate her wants and needs, and isn’t shy about them. I will never forget her first night home, when I turned back my covers and she climbed under them and laid with her head on my pillow. I wanted her to sleep near my bed, but not actually in it, and she just looked at me with a look that said, “This person is an idiot, she doesn’t know that beds are for sleeping.” I decided not to fight, and in my bed she has remained these last five months. She is the first to groan each morning when my alarm goes off, and she will cuddle in close to me, or on top of me, to prevent me from getting out of bed. I’ve watched her grow more and more confident and assertive, less likely to cower when the cat that she’s afraid of walks into the room, and more likely to spread out and take up space. I’ve also loved watching her claim our house as her territory. Any time someone rings the doorbell or comes in, she barks like mad. Even a person making a u-turn in our driveway or even coming onto our street to visit a neighbor draws a loud Zoey alert. Sometimes animals that have been abandoned have lingering attachment issues, which I am sure can sometimes lead to second and third abandonments, but my girl knows that she and I belong together. She’s protective of me when we are out on walks, or even visiting with friends.

Yesterday afternoon, we went on a walk in one of our normal spots, an abandoned woods property next to my house. We weren’t in a rush, for once, for Zoey to do the business and then rush back into the house, because it was a Sunday afternoon, and because we were out on an extra walk to make Zoey happy, and to allow my mom to eat her lunch with one less mooching animal. I decided not to worry about dodging the sun, another important reason that I like to keep Zoey’s walks short, and to just enjoy being outside and to enjoy Zoey sniffing all the grasses and flowers, and going where she wanted to go instead of where I wanted her to go. Zoey saw a butterfly, and at first I thought she might bark at it or try to eat it, but she didn’t. She decided that she wanted to follow it. She didn’t try to chase it, or get ahead of it, she just went where it led her, and so we followed it wherever it flew for a minute or so. It’s hard to tell how long is was or wasn’t, because it was just a magical moment, one that I knew I would have ruined if I’d tried to photograph it, so I didn’t even try, though it would have been a great photograph. The sunlight was just perfect, and it was finally feeling like it might be a real spring soon, and we just wandered in the trail of this butterfly. And I thought that maybe everything wasn’t nearly as fucked up as I felt it was, and maybe there is still beauty and magic yet to be found.

I hope you find magic today, my dear readers.

A Small Update

At this time last week, I was finishing up my notification phone calls.

After I told my mom that my Godmother had died, I called my Godfather back and asked if he wanted me to do the notifications for the church people that have kept in touch with my Godmother and who love her and shouldn’t hear the news through the grapevine. He said yes, so Friday night, after informing my mom and my sister, I started calling people. Some I had to leave messages for, and they called me back the next day. The rector of my church announced it at our three weekend masses, and remembered her in the Eucharist.

I am still having such a hard time fathoming that she is gone. I am comforted by the fact that she is no longer in pain from her chronic illnesses, and that she is with God, but of course that doesn’t change the fact that her loved ones miss her and want her here.

On another note: my life continues to be crazy busy, and my lupus symptoms, while not as severe as they were a year ago, continue to plague me. My Raynaud’s is still quite bothersome, and brain fog, exhaustion, and sleep disturbances continue to be near-constant companions. This makes writing incredibly difficult, and though there is nothing I’d like more than to write and also to edit my nearly-finished book, many days it’s so far out of the question that it’s in another country. I am hoping that, as summer approaches, my life will calm down substantially, and I’ll be able to return to being an artist, but as this week has taught us once again, nothing is ever certain.

Voyager

I grew up watching Star Trek: The Next Generation and Star Trek: Deep Space Nine with my mom. I remember being a small child, and my mom telling me that there was going to be a new Star Trek, but not just any Star Trek. Star Trek: Voyager was going to have a female captain.

I was ecstatic.

We looked forward to the premiere for what felt like an eternity.

I remember sitting glued to the downstairs TV during Caretaker, the pilot episode on UPN 9.

I have always loved Voyager. Voyager is the reason that I discovered fanfic, which everyone knows was a *huge* part of my adolescence, and one of the biggest factors in my becoming a writer.

I began a complete Voyager rewatch about a month ago, after I had major J/C (my first OTP) feels over on tumblr. It’s been one of the best decisions I’ve made in recent years, though my schedule has gotten substantially busier recently, so I have not been able to binge watch the way I was even two to three weeks ago.

Here’s to you, my childhood hero, Captain Kathryn Janeway of the Federation Starship Voyager. You taught me to be strong.

Life as it’s been lately.

It’s been so long since I’ve been on here! If I thought any of you were still reading, I’d apologize. C’est la vie.

Anyway, I blogged about being in Hawaii at a tumblr I set up specifically for that (anjelicablogshawaii.tumblr.com), but I’ve been back in New York since the week before Christmas. At first, It was just a Christmas visit/going to the doctors for a tune up, but it ended up being four months (so far) of intense intravenous treatment for lupus and inflammation–I was on leukemia watch for three months–and dealing with constant and agonizing pain, which nothing has taken the edge off of.

In the real thick of it, I wasn’t really able to write. Actually, on the whole, this year has been the least productive writing year I’ve had in a while. In Hawaii, there was so much going on that writing was difficult for me, and then being sick and exhausted and in pain all the time for the last month or so that I was there, and then being in New York with all of the above plus doctors visits and cold shock, my life hasn’t been conducive to writing much. But I am writing again. My memoir about living with chronic illness is close to done. I’ve written some essay-like things about chronic illness, as well. I’ve read John Green’s The Fault in our Stars ten times, and have listened to it as an audio book three times. I’ve read some other books as well, but I haven’t been able to “get over” TFioS.

I finally went to PF Chang’s, and I entirely understand why every celiac who has ever gone has become obsessed. It’s so good. I’ve eaten A LOT of Chipotle. I’ve seen friends. I’ve tried to act like a person in her twenties while I’ve waited to see what the new normal is… For now, life’s another transition and another life change.

My goal for this blog moving forward! I’ve been inspired by the community of writers I’ve met through my MFA and through The Children’s Book Hub, and so I’d like to move into a place where there’s a regular schedule of content on this blog. I had a schedule figured out, but I think I want to tweak it a bit more. But my goal is to have posts on Mondays, Wednesdays, and Saturday or Sunday (and maybe both in the future). Each day will have a theme (I have a couple of friends who participate in Perfect Picture Book Fridays–Susannah has a great list of PBs for reference–and I think it’s sweet, so I’m hoping to incorporate regular book reviews into this blog: they just won’t be picture books.)

And of course, I will be screaming from the top of this blog when my memoir is finished, and I’m sure there’ll be lots of spam, for which I will now issue a blanket apology. I apologize for any and all spamming both now and in future, as well as any alarm or distress that might be caused by my shrieking to the sun and the moon about having finished writing my memoir.

See you soon!

A

It’s Official…

It’s official. I suck at cutting. In writing, they say you have to murder your darlings. I’m not even good at murdering not-my-darlings. I hate to cut words. There, I’ve said it. It’s out in the blogosphere for all the world to know that I suck at editing.

It’s the end of my last semester as a student (unless I decide to do a Ph.D., which I’ve been more and more nostalgic for recently, but that’s another story and not a definite possibility at all ever), and my body is tired. I’m limping towards the finish line, and my headspace is a wreck because I don’t want it to be over, but I need to be done with life on an academic calendar and running at full tilt all the time.

I’m supposed to be cutting 15,000 words from my thesis now, but in reality, I think I’ve cut a few hundred, and added around 2,000.

I told you I suck at this 😉

This summer, I’m going to read lots of wonderful KidLit, and I’m going to be doing some really heavy reading for my memoir. Dante, Milton, some poetry…

But only if I can cut those all those words.