I Don’t Know How She Navigates the Long Haul of Freelancing, Caregiving, and Disability

About this Artist Caregiver

I’m a cis white woman based in New England. Artistically, I’m a playwright, dramaturg, director, teacher, and founder/former artistic director of a play development organization. I care for my now legally adult, twenty-one-year-old daughter, N, who lives with a unique constellation of disabilities that don’t fit a specific disorder or diagnosis. She is blind, nonverbal, has a hearing processing disorder, can’t stand or walk independently, eats only pureed foods, and has a host of developmental and cognitive issues. When frustrated, she punches herself in the head or bites her hand (often until it bleeds) and has been known to bend spoons with her teeth.

Despite all this she is an energetic social butterfly with an infectious laugh. She rides horses (has several Special Olympics gold medals), reads and writes braille, and communicates using a combination of American Sign Language, gestures, and word approximations that can mostly be interpreted by those who know her well. She navigates a few areas of the house independently using what I call “N Parkour” but can be foiled by a sock falling slightly out of reach. At 5’3”, she is a smidge taller than me and all muscle.

I’m a freelancer. In addition to a three-quarter-time gig as animation historian and digital media specialist, I teach scriptwriting at a low-residency MFA program, develop new work and writers with two out-of-state theatre companies, pick up gigs here and there (consultant, dramaturg, web design, etc.), and am a Licensed Nursing Assistant (LNA) with one client: N. This provides my health insurance. I serve on three boards.

I also live with Multiple Sclerosis. A few years ago, an aggressive flare-up left me with a range of uncomfortable, exhausting leg sensations (by the end of the day my legs feel like wet, buzzing bags of sand), lassitude (a form of mental/physical fatigue), and difficulty regulating body temperature. My immune system is suppressed due to medication.

My husband, B, is a playwright-turned-attorney and operations director for a nonprofit providing housing for disabled adults. He is also an LNA.

N attends the Deafblind School at Perkins School for the Blind. She is in residence during the week and is home weekends, vacations, and holidays. While we share caregiving duties when she is home, I am the primary hands-on caregiver.

Village:

We started a gradual move from New York City, where we had a large, supportive village, to New England when N, then eight, started attending Perkins. Today, we live near a former New York City compatriot whose family moved here around the same time. While they can’t care for N directly, they care for the collective “us” and have become precious members of our village, along with Perkins, where N can stay weekends if I have an out-of-town gig.

N qualifies for state-funded support at home, but finding, training, and retaining caregivers became too much (unpaid) work. It interfered with work commitments and wasn’t providing respite for us or consistent, qualified support for N, so we became licensed as LNAs.

This diary includes what we hope will be N’s village when she ages out of educational services at twenty-two. The critical, nationwide shortage of housing for disabled adults means many families wait months or years for an appropriate, available slot. Connecting with a situation we’re excited about this early in the transition process is exciting… and stressful.

Financial Impact:

It’s impossible to discuss the impact of caregiving on our lives without acknowledging the fact that we are long haulers. We’ve been living with this (financially, professionally, artistically, etc.) for more than two decades.

N was six months old when her disabilities first came to light. I was in rehearsal for the first Equity production of my playwriting life. A comedy, of course.

In those early years, it wasn’t unusual for N to have sixteen therapies or appointments a week. With B working sixty plus hours a week at a big New York law firm, bringing home real pay, and getting real benefits, it made sense for me to serve as juggler-in-chief. 

Thanks to an amazing village, I continued to run an undergraduate playwriting program, teach classes, and grow a new play development program out of my apartment. My playwriting (writing, submitting, applying, etc.) ground to a halt. Eventually, I learned to write in shorter bursts, at odd hours, scribbling on anything handy. Did I give up opportunities? Yes. Were there opportunities that couldn’t accommodate me? Also, yes. I began opting out of submitting and applying, focusing instead on a close-knit circle of generous, talented co-conspirators. They knew my limitations and made space for them. 

Jump ahead years, skip oh-so-many things. B works for a small nonprofit. We live in the one town in the state that offered any hope of keeping N at Perkins. We’d battled the New York City Department of Education for two years to get her into Perkins. It was literally the only place that saw N as someone with possibilities, and she was thriving there in ways no one imagined possible. We’d spent more than a year commuting between Boston and New York every week; our residence had to remain in New York. Moving was risky. A new school system would not be obligated to send N to Perkins; we’d have to convince them. But when B landed a job in New England, we made the leap. Financially and professionally, the move was more of a freefall for me, but it was a remarkable opportunity and a choice we were privileged to be able to make.

These things (which are only a few things over the course of twenty years) created the life we live today. How does one quantify that?

Today, my artistic life happens in short spurts and out of state. I enjoy these intense bursts of creativity where I can bask, if only briefly, in the embrace of artistic community. But it also means that people I’ve known and worked with for years only know the version of me that exists in those magical moments. They’ve never met the caregiver dealing with her Multiple Sclerosis. At times it feels like two lives, each secret from the other.

For B, going from a big firm to a small nonprofit meant a major reduction in income. But the knowledge he’s gained of disability law and the complicated, ever-changing systems we navigate daily has been invaluable. He’s made significant, tangible contributions to state policy and issues directly impacting people living with disabilities throughout the state, including N.

A final financial note: we are N’s legal guardians. She will never live on her own, make medical decisions, or manage money. We need to put things in place for the rest of her life—which will likely last far beyond ours. This impacts everything. Always.

Diary

Monday

This is a vacation week. We’re always preparing for, or recovering from, one. N has been home since Friday. I caffeinate before getting N up. She has more energy the moment she wakes up than most of us have all day.

Today is about getting ready for tomorrow’s big adventure. N is doing an overnight at an adult housing situation we hope will be a good fit for the future. Today I plan to write N a braille story about spending the night at “Green Cottage.” Braille is the best way for her to process new information. I plan to do this when B takes N out for a walk in her adult-sized jogging stroller, but when our electronic brailler doesn’t work, I’m forced to use N’s manual brailler. This means looking up every letter (including braille’s many contractions) as I type. I’m not finished when B and N return for a late breakfast.

I sit at the table with N for “thirty minutes breakfast,” which takes an hour. B deals with a work issue. I try to quickly respond to a work email, but N isn’t having it. She picks up her bowl and tries to bite it—that always gets my attention. She wants to know what happens after breakfast. And after that? I keep trying to multitask. After that? It’s not really working. After that? I’ve completely lost track of what I’m doing. A glop of eggy mush hits the floor. N thinks this is hilarious. “Floouurrre!” she squeals, bursting into a full body laugh. I close my computer and clean the floor.

N’s service coordinator is arriving at 2:30. I set N up to read braille books so B and I can talk to her while I iron stars onto N’s gloves and hat. N is a total fashionista. She asks for specific sizes, shapes, and colors (even though she can’t see the color), but these patches and tags also serve as tactile clues orienting her to the front or back of an item of clothing.

I finish brailling N’s story while she spins in a swing set up in the basement/my office. The swing is a whole production. She likes to spin as fast as possible, wearing two sets of gloves, a tight hat, a vibrating neck pillow, and holding a pair of loud electric toothbrushes (“zuzzies”) behind her ears.

My phone dings: an email about paperwork for my mom (I have power of attorney). I read it and put a note on my desk reminding me to respond tomorrow. I remember some tax documents I need to mail. I write another note.

Swinging is followed by jumping (I hold N for balance while she jumps and squeals with joy) and a shower. N puts on pajamas and dries her hair while I pack clothes, bedding, toiletries (wipes, gloves, overnight diapers), and make a list of stuff to pack tomorrow. When she’s done, she “cleans” her room (I throw all her toys on top of her, and she sorts them into buckets).

Downstairs, B is scooping pureed food into sectioned bowls. We hope N will eat whatever they’re serving at Green Cottage, but we’re also sending backup. Head punching and spoon bending does not a great impression make.

I catch a free moment before N’s evening meal, which she calls “lunch/dinner,” so I catch up on news and schedule a float therapy session. Floating in dark, silent, salty water where no one can reach me settles my nervous system like nothing else can!

N is in bed by 9:30 p.m. I flop down in the living room with B and put up my buzzy legs. We pretend to watch some show we’ve seen before, but we’re both on our computers. Later, I take N to the bathroom, climb into bed, and indulge in a little Ancestry.com. When I doze off my iPad smacks me in the head.

Tuesday

N is dressed and the car is packed with wheelchair, walker, communication book, pureed meals, clothing, bedding, etc., by 10:30 a.m. Green cottage is part of the nonprofit B works with, so he’s taking her up and staying over.

After an 11:00 a.m. Zoom meeting, I’m off to float therapy. Driving home, I stop to pick up a prescription (it’s not ready) and forget to mail the tax forms (which are next to me in the passenger seat), but I manage to pick up a sandwich to eat while completing the online portion of the Red Cross re-certification required for my LNA license; the in-person portion is next week. The rest of the day I work and read two plays for a Monday meeting.

After dinner, I sit in the living room, both the television and my computer on, doing relatively mindless tasks and telling myself I’m relaxing.

Wednesday

In the morning, I make chicken, some pureed for N and some not. We have a system: B makes N’s veggies. Preparing food a few days ahead makes life easier. Then I’m off to coffee with a friend. I’m also board vice president for the actor training program he created in the state prison, so there’s business to talk about too. But that’s cool.

I’m driving home when B calls. Things are going great, N’s staying another night. Huzzah! A promising omen for the future, and more time to get things done!

A work Zoom is followed by a board Zoom. I book travel for an upcoming gig and add a few extra days to the trip to see my mom, get her taxes organized and to the accountant, and visit my sister.

It’s nearly 5:00 p.m., so I focus on sending next month’s LNA hours and a video content schedule to the people that need them. I don’t want to cook or clean, so I treat myself to DoorDash (a rarity!) and am surprised to discover there is a great Halal place two miles away. I eat while reading another play for my Monday meeting.

Thursday

I finally get to the post office and pickup my prescription.

B and I meet on Zoom with a new potential service coordinator for N. I get in a few hours of work before B and N return. He unloads the car, then has a Zoom meeting. I take N out for a short walk. Mom walks are, by necessity, short.

I sort mail while N spins in her swing. After jumping, it’s up two flights of stairs, which N manages on her own using “N Parkour.” It’s slow, but she’s proud of herself and wants me to “proud clap” for her. I do. She “cleans” her room while I unpack her bags; then, it’s dinner, bathroom, glider chair (with “chair zuzzies” and a vibrating pillow behind her back), bedtime around 10:00 p.m., and a second bathroom trip at 11:00 p.m.

Friday

I caffeinate and do New York Times puzzles before getting N up. She is working on turning off her alarm clock and going to the bathroom with the walker by herself. At this point, the challenge isn’t the tasks themselves, but rather understanding that she has the agency accomplish these things without me. We’re making progress. Very slow progress.

Today’s routine is fairly typical: N has yoga with Mom, stroller with Dad, breakfast (even though it’s 1:00 p.m.) with Mom, treadmill with Dad, swing time/jumping with Mom. B and I use gaps to rest, wash dishes, do laundry, etc. N insists on wearing her “swing gloves” while walking upstairs, but they’re slippery, so she wants to hold my hand. It’s a bad idea, but for some reason I agree and tweak my shoulder when she slips and yanks my arm.

Later, when N is “cleaning” her room, I find B making and pureeing pizza. Saturday is pizza night. I inform B it’s only Friday, and we both have a good laugh.

Dinner runs late, setting me up for a late second potty visit where I discover N’s period has started. Use your imagination. Or don’t. If you know, you know.

Saturday

It’s snowing. This means no stroller, which means there will be negotiating. N is a master negotiator. She agrees to forego stroller time in exchange for swinging before breakfast and again after shopping with B (he carts her around a store in her wheelchair, “zuzzies” noisily jammed behind her ears, evoking confused looks from nearby shoppers). While they are out, N wants me to make the sleeves of her bumpy purple gloves longer, so they go past her elbows. I try to do this during breakfast so I can work while they’re out.

After second swing time, N works at her brailler and “cleans” her room. Then it’s dinner, bathroom, pajamas, glider chair, bedtime. My job is to get her from activity to activity, do “proud claps” and hugs as directed, revisit lists of things we’ve done and will do, and, when she farts, agree to blame it on her toys. Trying to work while bouncing from thing to thing makes me tense and grumpy, so I focus on being present. The days when I can do this are the best days.

Sunday

We wake up to the news of an impending snowstorm. Perkins announces the school and residences will be closed Monday (so N will be home until Tuesday morning). Stroller time is replaced with another shopping trip. I call the Red Cross to reschedule the class I won’t make at 9:30 Tuesday morning.

After shopping, N, who never gets sick, has a fever. Despite being opposed to rest, she is tired and agrees to quiet time activities. Once she’s in bed, we sort out how we’ll juggle Monday work and meetings and prepare for the possibility that, if she is sick tomorrow, she’ll be home Tuesday as well.

Reflections

Spotlight on a Week Without Art:

This was a week in which I did not practice my own art. That’s fine. There was a time when weeks like this devastated me. I’ve had plenty of crying jags on the bathroom floor, watching N smack herself in the head and rip shirts with her teeth when I’m in a hurry, or trying to make use of the one block of time I reserved for writing. I think all caregivers have moments like this.

I know measuring my value as an artist in terms of my ability to put aside, ignore, suppress, or attempt to deny myself the gift of being present is cruel (and antithetical to the artistic process). Still, it’s a struggle. I have to consciously remind myself not let one week, one month, even one year define me. This is, perhaps, not great career advice, but it’s healthier for me as an artist and a human.

Sometimes when I start spiraling into a multitasking frenzy N will sign: “Monkey, calm down.” This is a line from a book we got hoping it would provide N with alternatives to punching herself in the head, which is sometimes an apt metaphor for what I’m doing. In these moments, the absurdity of life, of the things others expect from me, of the things I expect from myself, reveal themselves clearly. And I laugh. Which is better than crying. N’s a great teacher, if I can hold still long enough to listen.