Editor’s Note: Kristin Ulland’s authenticity and courage has been a voice I have followed since she first started her blog at borderlinefamilies.com. I am deeply honored to have her as a guest blogger. Her story gets to the core of how very real the suffering this disorder causes and the courage — as well as the fight — it takes to live through it. To Kristen and her daughter, I am deeply humbled. Thank you for sharing the incredible love that exists between a mother and child.
Taking care of my mentally ill daughter is more than just a difficult task, it is a life-long occupation. For years, I ferried her to appointments, to soccer, to school and back and I listened carefully to stories about the cruelty of her classmates or lack of compassion she saw in her fellow team members. Relationships were always a mystery for her. It wounded me to hear how difficult it was for her but I stayed strong, a shield in front of my daughter, a rock for her to lean and depend on. Carefully watching as she walked to the car after school, I assessed the tilt of her head, the pace and bounce of her step, to prepare myself if it had been a good day or a bad day. I was her sounding board. I gave support and reassurance. I cheered and soothed.
My daughter is beautiful, small and athletic. She and her brother have that hard to pin-point origin that comes from the mix of the dark and the fair of a Norwegian and an Argentinean parent. But, even as a teenager, when looks count for far too much, my daughter’s cute freckles and deep mahogany-colored thick hair couldn’t save her; layered over everything was a vulnerability that she could not hide. Kids sensed it and she was always the easy mark. They stole things from her locker, made snide comments about her clothes, laughed at her for reasons she couldn’t understand. I held her close and commiserated and offered my love, like any parent would.
It was during the teen years that my job as caretaker began to really take shape. The distinction between parent and caretaker was never clear after this. I was my daughter’s best advocate. I spoke to her teachers and defended her increasingly odd behavior. ADHD made her fidget. I made suggestions and assured teachers that she was listening but that she could concentrate better when she was moving around. I asked teachers to give her an outline at the beginning of the lecture so that if she lost herself, spaced out for a couple of minutes, she could find them again and the hour wouldn’t be wasted. Teachers balked at this added assignment for them, but it worked; my daughter did well enough to graduate.
She fell apart in her third year of college. Her coping skills couldn’t battle the anxiety that was taking over her life. Self-medicating turned into a real problem and the underlying mental illness began to wreck havoc on her ability to function. Suddenly, it seemed, she was a grownup with adult issues that couldn’t be soothed away.
I brought her home and we set about looking for help. We spent years searching for the best facilities in the US and for the most suitable care for her. I visited nine hospitals and residential treatments centers. My daughter stayed in five of them. Diagnoses varied from place to place, adding and subtracting and adding again: ADHD, bipolar, borderline personality disorder, body dysmorphia, addiction, anxiety, mild autism, depression and PTSD.
Nothing worked. She was thrown out of every place except the last which she fled before they had a chance. Truckloads of meds were administered and hours of every kind of therapy under the sun was tried. The system failed her.
It was not that she didn’t try or even, that every facility made a valiant attempt to save her. It is probably more likely that her combination of illnesses are difficult to tackle. Personality disorder combined with brain disease makes for tricky and often ineffectual treatment.
My daughter is left with only her family to help her. She doesn’t trust doctors, psychiatrists or therapists. None have ever offered her any relief and she feels, in fact, that they ruined many years of her life. Her family has stayed with her every step of the way. Encouraging autonomy and stepping in when the pressure was too great, we painstakingly taught her to balance her checkbook and clean her apartment, to buy food and prepare meals. None of which she can do on a regular basis. Not because she isn’t as smart as a whip, but because the illness has robbed her of basic sequential thought processes. It is frustrating to me that she cannot consistently take care of herself. But, no doubt, more infuriating for her.
I look at my daughter, into her beautiful brown eyes and see the struggle. That is what motivates me every time to keep being her advocate and caretaker; the anguish of an unfulfilled life is reflected back at me. Hope. Desire. Pleading Neediness. Pain. And, I always see a spark of life and the desire for more, different and better. It is always there, even at her lowest.
She doesn’t want to be mentally ill. She doesn’t want to be a burden. She wants to be like other young adults and make a mark on the world. Have fun, party and then buckle down on Monday morning and do something significant. She can’t because her mind is in the way, causing tantrums and creating fires and confusion.
My husband said that his compassion grew tenfold when it finally dawned on him that she simply doesn’t have the kind of emotional control that we expect from our son. With no emotional engineer at the helm, she flails about for stable ground. It used to be that this wildness irritated him. Now he feels very protective of her when she is symptomatic.
In the most traumatic moments, when my daughter is hopeless and suicidal, I feel her discomfort as if it were my own. The pain pours off her with such force that the pressure seems to chafe my skin with an impact hard enough to deeply bruise. It is at these times, when she wants her body to let go of her soul so badly that she self-injures, drinks, and over-medicates, that I realize there is little I can do, other than bear witness.
I declare time and time again that she is worth every ounce of the struggle she puts into it. When the day’s battle is won and the tension eases, I look across and see a survivor of a kind of war that few people understand. Her life is inconceivably punishing. I applaud her effort to keep going against such terrible odds. She is an amazing warrior.
When I think that I don’t have the strength, I remember the spark of life that lives in her eyes and I renew my fight to release it.
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