“Katie was 55 years old when she died of anorexia nervosa. Her disorder began when she was 11, and she had many, many rounds of treatment over much of her adolescent and adult life: inpatient treatment, outpatient treatment, counseling, nutrition counseling, individual counseling, group counseling, and finally hospice counseling. One treatment program kept her for 11 months, and upon her return home, she immediately relapsed. None of the treatment worked over the long term.
Katie had a loving family who stood by her through it all. Katie was able to get her master’s degree, work on Wall Street as an investment banker, and volunteer at the Grammy Awards for many years. She loved all people, music and all arts. Her long time partner, Bill Pettijohn, was a musician well known in the Cleveland area, and who treated her with kindness, respect and love. Unfortunately, his premature death preceded Katie’s by several years. Left alone, she was small and she saw herself as small in the world.
And she was very, very sick and isolated. Her family was spread out around the country, and she kept returning from treatment to live alone, where her eating disorder got the best of her. She was desperate to get well, yet recovery was elusive to her because her brain disorder was so severe. As is often the case with this disorder, as her body grew weaker, her depression grew stronger.
In her final days in hospice, Katie spoke with me about feeling she did not make a difference in the world. The day before she passed, as I sat with Katie and she was in a coma, the pastoral care minister came in to tell me, and Katie, that her life was not in vain, that her being at hospice helped two staff members come forward about their own eating disorders. Katie was a client of mine off and on for 16 years. For the last 4 years of her life, Katie and I discussed treatment versus hospice. We discussed that treatment in the 70’s, 80’s, 90’s and 2000’s was not helpful because there was no research to guide treatment centers. More recently, research has aided clinicians in providing more effective care. Had Katie been able to get better care earlier on, might she have survived? I believe so. Katie died September 11, 2017 in hospice, where she finally found the peace she wanted and deserved. Katie graciously left The Hull Institute a business IRA.
I knew this money was not mine and Katie would have wanted me to use it to serve others struggling to recover from an eating disorder. I decided to target my efforts and Katie’s money toward assisting the most marginalized of all people with eating disorders, those who also have substance use disorder.
Katie would be proud that she was able to help fund a recovery home for women with eating disorders and substance use disorders. When I started The Hull Institute 16 years ago, with no money, no savings, no access to loans or investors, it was very scary. AND I knew I had to do it. It was my purpose, my calling. So, I did the next right hard thing and am now blessed with a thriving eating disorders counseling practice in Northeast Ohio. What started as 1 person in 1 little office in Cleveland has grown to 13 providers in 4 offices who had over 3100 client visits in 2019, 99.9% of them eating disorders. We are known in the area as the best providers for people with ED and SUD. We have a solid reputation in Northeast Ohio and beyond, and clients and providers alike know to call The Hull Institute when they have a need for resources, treatment, directions, support, referral, information, and no money to pay for treatment, and on and on. Now I get to do it all over again, with the same fear, and the same tenacity. This time I am better able to ask for help, and listen to others recommendations. I am not going it alone like I did 16 years ago. We are a strong team of dedicated individuals, some paid, most volunteers.”
My story is long, so the shortest way to tell it is that we have had many signs since we first looked at the future home of the first HHRR residence in March 2020. Divine intervention, the stars aligned, karma, whatever you want to call it. HHRR Is here, and we look forward to graciously serving our participants and supporters. HHRR is open to all people of all backgrounds, ethnicities, races, and genders. I want all our homes to embrace each other for all the ways we are all different, and the ways we are all the same.
Please keep reading Our Story and learning how we can all work together toward the common purpose of recovery, through Accountability, Connection and Love.
-Ann Hull Kuster
Founder and Executive Director of Hull House Recovery Residences