Lily Scott is a diabetic getting the most out of life
By Lamees Tanveer
Drenched. She stands under the pouring rain simmering in the cold. A sudden bout of nausea and she runs towards the first building she sees. Crouched over a toilet seat in a bathroom at Swarthmore college, she asks herself. “What the hell went wrong?”
Lily Scott, 19, isn’t new to these sudden bouts –bouts of nausea, bouts of numbness or bouts of pain. She has lived through them all.
Like the 800,000 others who suffer from Juvenile, Type-1 Diabetes in the United States, Lily’s ordinary life is extraordinary, constantly monitoring her supply of insulin, that comes from a pump embedded inside her. Being wary of the symptoms of diabetes — excessive thirst, frequent urination, sudden unexplained weight loss and numbness of the feet Moving along day to day with the reality of the disease sitting on her shoulder.
On the way, back from the party to Bryn Mawr College, she retraces her steps for the millionth time. “The blood sugar level was high to begin with, but I only had one drink. Maybe I was too conservative with the insulin intake. But it was only one drink. Maybe I drank more than I should have. No. It-was-only-one-drink.”
This one drink, a mixture of Vodka and Country Time Lemonade powder is what she would later call, “Death on a stick for a diabetic.”
As she answers the plethora of questions in her head, checking off the mental check-list , she feels it coming back. Like a rolling thunder, her blood gushes and the nausea sets in again. She gets off the bus and by that time is “horribly sick.”
At 1:00 p.m. she finds herself being rushed to the health centre. Panic. Residents of Rockefeller dorm come out of their rooms, Text messages are forwarded like ricocheting bullets, “Lily Scott collapsed.”
At the Health Centre, Lily’s friend, Sarina Dane talks to the nurse. The doctor is called and within seconds she is sent to the emergency room.
“I thought she had had too much to drink. Then I found out it was dehydration so I decided to stay all night,” says Sarina.
Triple Dehydration. When you drink alcohol, you get dehydrated. When you have a high blood sugar content, you get dehydrated. When you vomit, you get dehydrated.
The staff at the Health centre prepared to inject IV-fluids before things turned from bad to worse. It took them longer than usual and it hurt more than usual since her veins had shriveled.
“It wasn’t a fun experience” says Lily. “Normal people don’t have to throw up after one drink. I don’t need alcohol to have fun but I should be able to have one drink. It shouldn’t have to be this way.”
In her first semester at Bryn Mawr College, Lily fears her health will hamper her ambitious career choices. As an amateur stand-up comedian and vocalist for musicals, she finds comic relief in life.
While attending the Rocky Horror Picture Show she decided to flaunt her wit. First-time members of the audience were asked to pretend to seduce a woman dressed up as a cat. After a dozen attempts that ranged from, “Hey there kitty, kitty” to “purrrr,” it was finally Lily’s turn.
At her seductive best, she stood up and walked to the centre of the room, lifted her arm and with a sudden jerk started scratching her belly. “I worked at the vet last summer and this usually works.” she said with smirk.
The room broke out into fits of laughter . She won the competition.
“I don’t lack confidence but I still tremble when I get on stage,” she said. “If I’m anxious my sugar levels drop really low. It’s not nerves, it’s the blood sugar.”
As a hopeful pre-medical student she’s not too sure if technology will advance enough to allow a Type-1 diabetic perform critical surgeries. “I’ll have to have a perfect sugar level all the time. What if my hands are shaky and I jeopardize the life of a patient?” she says.
Excessive thirst, frequent urination, sudden unexplained weight loss and numbness of the feet are few of the many symptoms of Type-1 diabetes. For Lily, these aren’t symptoms, this is life as she has seen it.
” I’ve grown so accustomed to it that I forget others don’t have it,” she says. Once on the beach, she recalls how she kept wondering, “Why aren’t these people wearing their pumps? What’s wrong with them?”
In Lily’s world it’s normal to wake up and prick yourself first thing in the morning. It’s normal to program your insulin pump, 6o units of insulin in her case and it’s perfectly normal to call it a great day when nothing goes wrong.
Sitting in her room, next to a chest of drawers filled with medicines, she bursts into a song. Her friends at college don’t bother to comment, they’re used to her sudden bouts of singing. She asks them to pass the diet Coke can and then quickly passes a quip, “You know why I want a diet Coke? Because I’m die-a-betic.” Once again, no one bothers to comment. She laughs at their response and carries on.
“You know I remember back at school, my friends would ask me what I would do if I was lost in the wilderness. I would say, well, I wouldn’t be doing much. I doubt I’d make it. I’m depending on technology and new age medicine to survive. I’m living on a little machine. It’s kind of unsettling sometimes.”
Perhaps it is this feeling and years of emotional baggage that has encouraged Lily to reach out to others. Ever since Lily was diagnosed with diabetes, her mother, Alva Scott has been working with the Red Cross and the Juvenile Diabetes Research Foundation. As a volunteer she corresponds with parents and juveniles who have recently been diagnosed with the disease. Last week Alva forwarded Lily an email from a girl in her neighborhood who was finding it hard to adjust to the life of a diabetic. Lily wrote back to her letting her know that she was there for her:
“The reason I’m writing to you, aside from sharing random information about myself, is that I’m diabetic. Type 1. Have been for years. I think…Geez, I’m coming up on my 9th year in May. I’ve been on the pump for over two years…I think. I lose track. I’ve learned to become pretty okay with the whole thing. I make jokes about it a lot. I do stand up comedy and diabetes is often a subject in my act.”
The first time she spoke on behalf of diabetics was at an annual gala in her neighborhood in Reading, Pa.. As a guest speaker she said, “I think about everything all other teenage girls think about. Shopping, getting my license, boys but I just also have something else big on my mind, which is diabetes.”
With a back-breaking workload at Bryn Mawr and the adjustment anxiety, Lily found herself in dire straits. With a limited supply in her pump, she realized she was out of insulin. After a fifteen minute walk to the nearest CVS pharmacy she placed her order for the next day, content that she could manage a day with the insulin in her pump.
The next day she went to collect her insulin supply but it wasn’t ready.
“Do you really need it?” they asked over the counter.
“Well, yeah. Sort of. This isn’t some kind of acne control or birth control prescription. I mean I live on this insulin so I think I do.” She replied.
“Oh, okay, it’ll be ready tomorrow.”
Tomorrow came. Tomorrow went. The insulin wasn’t ready. Another bout. This time it was panic. Lily had stalled for time but that wasn’t going to change the fact that the cells in her pancreas weren’t going to start producing the insulin on their own. Alva Scott fired (??? Fired what an email?at her for being careless while being concerned about her condition.
Lily checked her pump every two minutes, hoping her mother would call to tell her the insulin was on its way. She could feel her blood bubble. She was not going to panic.
Her mother called every pharmacy in the vicinity, reasoning with some, arguing with others. In the end, Lily decided to step up.
“I got my insulin from Wayne. In the end it all worked out but the pharmacy sure didn’t make it easier.” She said.
In a way, Lily knows what it means to be living on the edge. One slip and something could go wrong. There is no room for glitches and that is what makes her life so real. On the surface she leads the same life as anyone. What her disease has given her, is a unique perspective. Every dream, every ambition and every purpose has to go through a reality check before it comes full circle. What keeps her going is the cushion of humor and wit she falls on.
“I light to keep things light. I don’t want a pity party. Things could be worse. I could have a disease that medicine couldn’t help make better. Things could be a lot worse,” she says.
“Robert and I kid around about it all the time,” she says talking about her boyfriend. “It’s like you’re having a great time and then you see the pump. He tells me it’s sexy. I tell him, I’ve got a tube hanging from my body. It’s not sexy.”
For Lily it’s her family that has been there for through thick and thin. They’ve seen every bout she has experienced. They have cried with her, laughed with her, felt her pain and shared her reality.
“I remember how it was hard on my mom when she found out I had diabetes. She felt so helpless. It was harder for my sister because she felt she couldn’t go up to my parents to talk about what was going on her life because, ‘Lily is now diabetic’,” says Lily.
It was years later when Lily had a talk with Genevive sharing her concern about having a baby at some point in her life. Having fluctuations in sugar levels can be dangerous for the health of the child and Lily didn’t know if she would take the risk. Genevive, Lily’s elder sister had seen her grow up with diabetes and said, “Lily if turns out you cant have your own baby I’ll carry it for you.”
It’s the little pushes in her life that make her who she is. By converting her concerns into numbers Lily manages to simplify her disease instead of her life. A level of 120 is good, four pricks are better than eight, 60 units of insulin should suffice. While math might not be her major, she manages her life according to numbers, never letting a minor glitch dictate her life.
For a 19-year-old freshman with diabetes, things can get hard. For Lily, more than her wit and charm, it’s the words of encouragement that keep her going.
At times when she’s having a bad day, a bad month or a bad phase, her father is the one who has the right words,
“I know it’s hard Lily, but you’re doing a great job.”