ED – The Rollercoaster

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ED the Rollercoaster

In 1999 when ED first invaded our family; I had some basic info, I knew about Karen Carpenter, this

disease was deadly and it was terrifying to think that an 11 year old would systematically eliminate

foods and restrict. After finally being referred to the Eating Disorder Adolescent Program at Strong, I

realized that I had to educate myself and learn as much as I possibly could; and research I did. If you

were not with me, I would leave you behind; I had no patience for anyone. My parents who were in

their 70s understood Katie was ill but really found it very difficult to comprehend the reality. My

daughter’s life hung in the balance. I remember the night we came home with instructions to make sure

Katie consumed one Ensure before bed. Sitting at the kitchen table coaching Katie, reassuring her that

she could drink this nutrition was so surreal. Reassuring her that it was necessary and that we would

not leave the table before it was done. As she struggled and began to cry, tears streaming down her face

she said, that she couldn’t, “I can’t, I just can’t”; I began to realize some of the pain and anxiety that this

disease created. As I held her, reassuring her, encouraging her; slowly, ever so slowly she sipped the

drink that would eventually help her gain the strength to have the courage to do what she needed to do

for recovery. It took 3 years for me to breathe and feel hope, Katie was 14. Recovery continued for the

next 8 years.

Part II, the Katie story continues: I took Katie to an appointment and the attending Nurse, knew Katie,

she happened to have worked at our Pediatricians office when Katie was a newborn. Said that her vitals

were not good and she needed to be admitted to the hospital immediately, admission to the adolescent

eating disorder inpatient program; within 45 minutes she was moved to a room. This was May 1999,

Katie would be hospitalized for almost 4 weeks, she was in 5th grade. Her teacher, Miss Wayne, tutored

her every day after school. Katie responded to the structure and treatment plan, earned all her

privileges, she was the “good girl”. Prior to being admitted Katie was no longer participating in dance,

going to friend’s houses or participating in activities that a healthy 11 year old would. When she was

discharged, she was stabilized but, still needed to gain. At this time the responsibility was given totally to

Katie for following her meal plan and doing what she needed to do to continue to gain. Family support

was not encouraged on any level. As much as I felt happy that she was out of the hospital, sheer terror

consumed me. She has so much work to do, as the summer progressed it was very difficult she did not

have energy, she spent the entire summer sitting in a chair, going to appointments while I just prayed

and tried to support all her efforts. At the end of the summer it was obvious that we were losing ground,

the Doctors said she could not return to Strong, she would have to go to a program in Syracuse!!! The

momma bear was unleashed; I did not want my 11 year old daughter going to a program in another city.

All along Doctors said she was “Atypical; young, responded to treatment, follow the rules etc….. I

responded, “If she is so atypical, give me an Atypical treatment plan, tell me how I can support her at

home. We need an Atypical plan. My modified Family Based Treatment was launched; I would be able to

assist with menu planning and the process of meals, every meal including a night snack would be

supplemented with Ensure, 4 times per day she would have liquid nutrition to support calorie intake.

Activities were limited and she would just go to school, no extra activities, health checks with dietician

support 2 times per week with counseling. Slowly, slowly Katie stabilized and then began to gain, slowly,

slowly. By Christmas I could see the sparkle begin to return, we were headed in the right direction.

Week by week she gained strength, the weekly visits became every other week, then monthly ; health

was returning by 9th grade Katie was ready to join Cross Country, oh yes with an underlying fear, that

ran deep in my being. Katie slowly began to take dance again, stay over at friend’s houses, a sense of

normalcy returned, in my mind a level of concern, fear would never leave completely………….

The story continues; Life began to get back on track, Katie joined cross country we got a puppy, Jersey.

Great memories, a wonderful adventure and something Katie really wanted. Things were stabilizing,

Katie met Luke who became her first love, they dated through High School and some of college, Katie

was happy and ED was nowhere to be seen, she was taking 4-5 dance classes, life guarding, worked at

Old Navy in Henrietta, got her little red Sunfire (I remember her convincing me why she “had” to have

this car. Katie graduated and was accepted to Syracuse in the School of Information Technology, she was

so excited and at the same time believed she would not get in, why would they accept her? Katie’s Work

Study job was with Jeff Rubin who was also a professor and owned a business on campus. She thrived in

this environment, pledged a sorority, joined Orange Pulse Dan Troupe, became a spokesperson for the

Chase Internship program and a peer mentor. ED was nowhere to be seen, she spent one summer living

in New Hampshire with Luke and they remained friends forever. Katie returned to SU, was selected for

the Chase summer internship and met Jamey who was also an IT major, they both graduated in May of

2010. Katie was class Marshall, recipient of the Leadership Award which is renamed in her honor, Magna

Cum Laude honors; Katie loved her SU, she love SU Basketball, a fan forever, she loved her Chase

experience, love working with Jeff Rubin, loved her friends and sisters; Life was good. Katie’s plan was to

work full-time for Chase but, a unique opportunity was offered to her, a full scholarship including

Graduate Assistantship with Jeff Rubin. She was torn, but she decided to get her Masters and Chase

agreed to postpone her start date for one year and she would continue to work for Chase on campus. I

now believe this is when ED creeped back into her thoughts, I will never know; but by December I knew

something was up. At Christmas 2010 I sat down with Katie and said, “is everything Ok? What’s going

on? I am worried…. She did not want to hear it, “I am fine”, “there is nothing wrong with me”, “I know

how to take care of myself”. There had been this extended period of time when I had been so happy

that Katie seemed to be in what I know refer to as “recovery”. When Kate went to SU, I braced for the

worst; she thrived, she excelled. I wondered; is it possible? Will she be free of this disease or will it

always haunt us? Katie return to Syracuse for second semester, a new fear lingered, I had to stay on top

of this. I continued to talk to Katie and ask her to think about counseling, she insisted that she was fine,

leave her alone she was 23 and knew what she could take care of herself. The feeling of despair began

to creep into my reality, “no, this cannot be happening, no! ED is not back…” What can I do? How can I

get her to listen? How can I get her to understand? Terror. Feeling so alone, with nowhere to turn. Life

as I knew it was never going to be the same…………. I had no idea what was ahead, I hoped for the best

and feared the worst. This was not good, I was no longer the mom that could insist what had to be


My Katie story; As Katie pursued her Masters at SU, worked for Chase and fulfilled her responsibilities as

a Graduate Assistant; she juggled everything with ease and a level of professionalism that was truly

Katie, she was struggling, however it was not obvious. She moved to Chadds Ford, PA to begin her full-

time job with Chase in Wilmington, DE, May 2011. By Christmas, Megan and I were both in panic mode;

Katie did not want to hear our concerns. She was fine, she was finishing grad school, working full time,

doing everything she should be doing. We did not know what we were talking about. Realizing talking

was not working. I did not have any impact; she was fully in charge of her health. My fear, my feeling of

despair and completely not knowing what to do next, intensified. I emailed her a list of counselors in the

area, my search made me realize Katie lived near a very comprehensive ED treatment program, The

Refrew Center, one of the first in the country. I sent books in hope that she would consider looking at

her reality from a different perspective. All efforts were met with resistance and anger, 6 months later

she began the process of looking for a counselor, progress but the clock was ticking, each delay robbed

precious time. After 3 months of extreme malnutrition, the brain chemistry changes. I would learn this

later, but as a society we expect her to make the independent decision to seek treatment. The disease,

which had now ravaged her for over a year for the second time in her life had hijacked her brain, she

was incapable of making the decision to seek treatment, support or any acknowledgement that her

health was at risk. Treatment of eating disorders as we know it today allows the individual to continue

the life threatening behaviors, it was her right. Katie would tell me she was going to meet with a

dietitian to help her get on track and had started to see a counselor; all half-truths. The first counselor

did not work out; it would be a few months before she found Tamie.

Each month brings its own unique memories, two years ago this weekend to the day; Katie was

admitted to Strong emergency because her vitals were dangerously low. I received a call from her Dr. in

PA who was monitoring her vitals as she was continuing to work and push through the ravages of

anorexia. The doctor broke protocols because she was so concerned for Katie’s health, thank God!!! I

had waited months for this call, literally; I could not understand how no one, no one, said she needed

medical attention!!!! My personal belief are we cannot allow people who physically present as medically

at risk, should not be just allowed to “carry on”. When I say “physically present”, I mean anyone who

knew/saw Katie was extremely worried but felt powerless to do or say anything. When colleagues

contacted Chase EAP (Employee Assistance Program) they were told there was nothing they could do.

Katie’s direct supervisor was told not to get involved. She was dying in front of them, literally. In certain

situations, as a country we need to reconsider. Katie was in a state where her heart was severely

damaged, her life was compromised. Katie came home and was admitted to Strong, prior to this I had

told Katie there would come a time when it would no longer be her choice to seek medical attention,

she knew; this was going to happen. She arrived on Friday night, Saturday morning I told her she was

going to the hospital, we were taking her together; the family and Jamey. She looked at me and said,

“mom, why do you have to be so angry, can’t we just relax and have coffee before we leave”. I was in a

state of terror and feared the worst; I really thought this was going to be a battle ground. As usually,

Katie surprised us all, we were the ones who were unreasonable!! I had asked the Dr. exactly what to

say when we arrived at Emergency; I was terrified they would not admit. At emergency we said she was

referred by her doctor, her vitals were impacted by extreme weight loss due to anorexia. Katie remained

at strong for almost 4 weeks, they were not prepared to treat an adult with extreme weight loss due to

anorexia, there are very specific protocols that must be followed by every staff member who provides

care. Any inconsistent care creates an opportunity for the patient to falter. 3 weeks into her stay the Dr.

said “Katie’s heart could stop at any minute”. This was the moment that I knew, Katie was in grave

danger, she could lose her life at any moment, her heart would just stop; it was so damaged that there

was no return. It must sound strange, but hearing those words; my worst fears were confirmed. The

hospital was recommending “palliative care” and contacted the Nun on duty. I do not know what came

over me but, through the complete and utter terror; I drew amazing strength, I was going to fight with

every ounce in my being, this was NOT her time!! There was more we could do. I was not going to stand

by and watch her die, palliative care = hospice; that was NOT going to happen. I had guided my dad to

the other side 6 months before with palliative care. This was not an option, we need another plan. At

this moment Strong could not manage her care, manage her case; by their own admittance. There was

not one treatment facility in the entire east coast that would admit her because of her medical status.

There was a 24 hour period where “NO medical faculty in the US would treat her”. Then a social worker

mentioned Denver Acute, my heart lifted, a possibility, hope. Then the reality hit insurance would not

approve the care even though it was approved by Doctors at Strong and Denver Acute, Denied!!!!

Everyone involved worked for a medical review by insurance, not until her case was labeled

“Catastrophic” did she get approved. Someone took notice, this was a life or death situation!!! Now we

had to figure out how to get Katie from Rochester to Denver, remember her heart could stop at any

moment. HOW????? A commercial flight was not a possibility; Katie’s life hung in the balance, the clock

was ticking, every minute counted.