The definition of insanity: Autumn 2018 - part 1

Right around the time I’m really getting into ballet, I get approved for an insulin pump. It’ll (hopefully) help my blood sugar levels be a lot more stable, but I'll have to be attached to a little machine via a thin tube that goes to a cannula that goes under my skin almost 24/7. I'll also have to wear a continuous glucose monitor, little copper needle under the flesh, a little medical-looking dome on my arm or thigh covered by clear tape. I worry a lot about if the insulin pump will interfere with my ability to move, to dance.

It arrives in the mail & I get it set up & attached to me. I still have to check my blood sugar twice a day, a prick to the finger with the lancet to calibrate the sensor & I have to count the carbohydrates in what I eat or drink & take insulin to compensate for them through the pump - but I’ve been doing this for a long time.

The first few days I'm wearing the pump, I feel ashamed of it. I’ve had type 1 diabetes since I was 2 years old - my first memory is being in the hospital, tied down for trying to tear out IVs, of terror. A lot of this shame & fear comes from the way my mother handled my diabetes when I was growing up. She would scream at me that I “wasn’t going to make it to 18” if I wasn’t a “better” diabetic or that I was “going to be on dialysis instead of in college someday.” Doctors appointments with her were nightmares, traumatic - there was always screaming on the way home, one of both of us would cry. I’d spend the two days leading up to the ordeal sitting on the floor in my bedroom putting false “good” numbers into my meter to try and avoid some of her anger, sitting on the floor, resetting the time & date on the meter for each prick of the finger to draw blood to feed the angry little machine, again & again, moving backwards through time, trying to be seen as “good.”

She always said there was nothing she could do to help me manage it - from the point I could stick myself with the syringe, I managed it by myself - but that was a lie, there were things she could have done. In my youngest years, the bloodwork was the part of the appointments that caused panic attacks before & during them. The hospital actually started assigning a person (I was too young to know - maybe a social worker or a therapist) to play games with me in the waiting room, as my panic attacks would scare the other children, but it didn’t really work. I still panicked. As I got older, the bloodwork didn’t hurt as much but her tirades caused me to dread appointments with such intense anxiety that I once scaled a bar stool in the kitchen to erase an appointment from her calendar on the wall, hoping we’d miss it & the anger would be pushed back to date further away from me.

I think this is when I learned to “split” people - they were either all good (my father, a source of comfort, security) or all bad (my mother, danger, the need to separate myself from) in my mind. People can move back & forth between the categories but, still today, cannot really exist in both at the same time. They call this symptom - this exoskeleton way of protecting myself, this learned coping strategy - “black & white thinking.”

I wear baggy clothing. I don’t want anyone to see the pump on my hip. I'm worried people will ask me what it is and I'll have to talk to them about it. I don’t even want to leave the house. I feel “marked” as an ill person. I wear the same giant sweater I kidnapped from Edward’s closet & leggings for days because this is the best outfit I have to keep other people from seeing the insulin pump & to allow me to imagine it isn’t there, to allow me to imagine I don’t have diabetes, to allow me to imagine I am healthy & normal.

Eventually, as I am going through my closet saying, “Well, I can’t wear this anymore with the pump, there’d be a big pump lump, it’d look really bad…” to most of my clothing, Edward suggests I go buy some new clothes. I do, and his trick works. I buy some clothes that hide the pump & others I feel more confident in where the pump is visible. I figure it’ll vary day by day - how open I want to be with the world about it.

My doctor tells me that the insulin pump often drives people nuts for the first three months, then they get used to it & are glad they decided to get one. The first few weeks with the pump are very trying, it’s almost like having a puppy again - by the fourth or fifth day I'm exhausted & my mood disorder is starting to act up from being woken up six or more times a night by its alarms. Then the alarms lessen as it learns my body’s glucose patterns - also I learn to sleep through a lot of them. This is okay - it doesn’t do any harm, don’t worry, & it helps me to be able to live with the little robot attached to me while keeping my sanity.

The infusion sets from the insulin pump leave angry red marks on my thighs. I become insecure about them, then I decide not to care. I photograph them - a bit of ownership over my body, over its “flaws.”

Edward & I go through a rough patch - he becomes dangerous to me & I see no good in him for a period of time. I see only his people-pleasing, his inability to stand up for me when it comes to his family. Namely, a “Save The Date” card arrives in the mail for his step-brother’s wedding. I do not want to go to this wedding. Edward & I got married in relative secret in our tiny rented apartment in Birmingham during the break between his first & second semesters of medical school. We didn’t want a big wedding, it wasn’t us, but we couldn’t have had one anyway - I don’t come from much money & his mother disapproved of our engagement. When we got engaged in Saint Louis & he called to tell her, she said, “Think of the practical ramifications of this.” I still do not know exactly what that means. When we were living in Birmingham and he went to her house to tell her, “Hey, we’ve been engaged for a while, we’re thinking about getting married sometime soon,” she was so adamantly opposed that she almost convinced him to call it off. She said it was because I didn’t have a job & “seemed a little lost.” She moves categories. Endangering or encroaching on my relationship with Edward - black. Supporting us in some way - white. I made my own bouquet out of white mums & eucalyptus. It was just us, the efficient & a photographer. It was beautiful, wonderful, moving. But it wasn’t a welcome into his family. Again, I don’t know where I fit in. Quite frankly, I did not fit in.

I felt welcomed by some of his family, after we told them, but some have left me feeling barely begrudgingly tolerated, even after two years of marriage. I know it’s petty of me but I can’t imagine being there as these family members elaborately & expensively welcome another woman into their clan. I know the wedding is about the couple getting married, but it still feels like a slap in my face too. Edward & I fight a lot then we make an agreement that we will just go to the reception, not the rehearsal dinner or the ceremony. I can live with this. I can handle that much of it.

We become a team again. I can see the good in him again - the humor, the chemistry between us, the strange & charming nicknames, the adorable nerdiness of a husband whose pastimes include playing chess online & listening to history lectures, the little & big things he does for me like bringing me coffee or letting me take over our entire home with my aesthetic. I can again see the back massages & the going along with whatever whimsical plan or strange project I get it in my head to do, the being my rock & accepting me openly & generously with all of my baggage & skewed thinking & flaws. I remember us. I come up with the idea that we should do a little vow renewal ritual. Something to mark the closing of the rough patch, a fresh start of sorts. Our little ritual/ceremony will be just us, like our wedding was. I spend days clearing out the storage room & creating a little fort of sorts with fairy lights & bedsheets & candles for the ritual to take place in. I make “mood boards” & try to figure out a script of sorts & what to wear.

My A1C (a three month average of my blood sugars) goes from the double digits to (for a type 1 diabetic) a pretty perfect score of seven. The insulin pump is a win. When Edward & I were new to Birmingham, we attended a dinner I was not excited about with my father-in-law, step-mother-in-law, step-brother-in-law & one of his swim team friends. The father-in-law & step-mother-in-law are both doctors & they became very nosey about what doctors we were going to be seeing while we were living in Birmingham, the same city as them. We eventually just said, “You know what, we are adults, we can find our own doctors,” at which point my step-mother-in-law, who’d been throwing back glasses of wine all throughout appetizers & probably before Edward & I had even arrived at the restaurant, interrogated me about if I “even knew what my A1C was.” The fact that she stepped on this raw spot, this mother wound, at a dinner party with other people I barely knew, such personal & judgement-laden information, has left a bitter taste in my mouth ever since. She has never been lightly colored in my mind. I lied to her face. “Seven,” I said. Which shut her up. There is something strange about finally being at the number I’d lied about being at two years ago - like the time my weight actually got lower than what it says on my driver’s license. Edward & I walked out of the restaurant once we’d been there long enough to excuse ourselves. “What the fuck was that?” we both whispered to each other, hurrying to the car, hurrying to get away from those people.

The new problem is that my anxiety is through the roof - I cannot go anywhere alone. I’ve developed a sort of agoraphobia around not wanting to leave the house for fear I'll have a panic attack while out & no one will be there as a buffer. I don’t leave the house unless I have Edward or Lena with me. Since Lena, being a dog, isn’t allowed most places besides gardening or pet stores, these are the places I frequent.

I have strange symptoms during my panic attacks like not being able to make my legs or arms work. One night, when Edward is leaving for a night shift at the hospital, I have a panic attack so severe I cannot walk. He goes to his shift & I call begging him to come home. He won’t. We fight over the phone. He feels like I picked a fight right before he left & brought the panic attack upon on myself. I feel like I am married to him & he’s married to his career. I feel like I will always be second fiddle to his career, never be the main character in my own story. I bruise my knees trying to get to the bed for blankets because I feel like I'm freezing even though it’s plenty warm. My psychiatrist puts me on a new medication & we slowly titrate our way up to a “therapeutic dose,” then past it. Each additional upping of the dose makes me feel dizzy & nauseated a few hours after taking it - and I have to take the pills three times per day. It is an uncomfortable process, but eventually we get up to a dose that helps.

Edward & I do our ritual & it is wonderful. We are past this rocky patch for now. Before the ritual I feel almost as nervous/jittery/excited as I did before our actual wedding - butterflies in the stomach. He hasn’t seen the space I’ve created yet & I’m nervous about showing him - I want him to be impressed & he is. We write each other letters & read them in the little almost installation art space I have created for us in the former storage room. Some of Edward’s letter to me reads:

“Today we are here to recommit to our marriage and our love. In a way the vows of marriage are easier than the vows of recommitment. When we took our marriage vows, we did not know what the future would hold. Now, we have a much better idea of who we are as people and what our marriage is. We know the hardships that life can bring. We know our partners foibles. Recommitment is an emphatic statement that, despite struggle and strife, we are still deeply in love and believe that our relationship is stronger than what life can throw at us. There is a deep romance to seeing your partner as human and loving them completely still. Housekeeping and bills are not sexy and exciting, but we know that deep connection is superior to the more superficial joys of a new relationship.

With all that said I am still getting to know you. Everyday I discover a new layer to my wife that keeps me excited and intrigued. You continue to be an insightful and original thinker whose perspective I can always learn from. Your quick wit and humor keep me laughing even when things seem dark. Your artistic sensibility, talent, and creative passion continue to impress me as I see them grow and develop.

You have many strengths as a partner but I think your greatest is the depth of your love. You yearn for connection and intimacy. I love to just drink in your affection. It recharges me and empowers me more than anything else I have encountered. Knowledge, achievement, and competence don't fill up my soul like your love does.  Lets continue to grow and struggle. Lets continue to love and sometimes disagree. Let's take life in all its real messiness and make a little universe for ourselves within it…”

We repeat our vows from our original wedding ceremony. The room is dark aside from the candles I’ve lit & the constellation of fairy light stars I’ve created behind the a hung bedsheet. It’s a little fort. In there we can come back to “us.” Afterwards, we cuddle in bed & it is like we are newlyweds all over again. Like we are “us” again, like maybe we aren’t in Alabama, like maybe med school & in-laws have never happened. It feels amazing.