Today, Feathered Quill reviewer Holly Connors is talking with Kristin Rohman Rehkamp, co-author of Finding Us: A Mother's Memoir of Braving Mental Illness With Her Young Daughter.
FQ: Was it a hard choice to decide to write this book? Did your entire family support the decision?
REHKAMP: One year into our journey with Anna’s panic disorder we found ourselves in a situation where we were advised by a medical team that we might want to be cautious about sharing Anna’s name, her story…her face. All with highest and best intention to protect Anna from feeling ashamed in the future or being shamed by others. I sat our daughter down and tried to explain why we might want to hide her identity and the truth…and then I stopped. I stopped because our daughter asked me that if I was ashamed of her...if others were ashamed of her...should she be ashamed of who she is? From that moment on we chose to empower our daughter with courage, pride, and a strong voice. Many think I wrote the book for others. Honestly, I wrote the book to keep our daughter alive. To show her together we bravely can be the force of change so badly needed for families, youth or individuals that brave the same journey.
FQ: “But I need you to “find you” and embrace her.” Very touching and deeply moving words. Would you tell our readers a little about what this means?
REHKAMP: For so long our family (and so many others like us) look for the “reason” our child got sick and the way back to “before.” We hold onto every thread of hope that life will resume as it was if we just find the magic answer or “the” reason/cure. In our case, Anna’s panic disorder presented abruptly, and our life changed as quickly as if we were in a devastating car accident. We had a very blessed life—a life we had carefully crafted. Accepting our new way of life (a life or path we did not choose) was difficult—for all of us, but especially for Anna. A year into our journey we began to realize that healing would only really start, really take a foothold, with acceptance of our new situation or way of life. Sometimes we need to let go of who we were or our life before to truly move forward, heal and soar again.
FQ: In my review, I quoted your reason for writing Finding Us, as not for “...recognition, accolades...or to reduce stigmas...we tell our story to normalize the conversation, educate others and reduce the shaming that occurs...” Why do you think, in this “modern” time, it’s so hard to normalize the conversation around mental illness?
REHKAMP: I really believe mental health/illness is grossly misunderstood and unfortunately the support systems (such as healthcare and educational) have been designed around this misunderstanding, so they inadequately support, along with being grossly under-resourced and under-developed. Honestly, my perspective on mental health continues to evolve and change as I learn and learn from our daughter. Today I am starting to no longer refer to Anna’s anxiety/panic as a disorder or illness (already different than how I referred to it in Finding Us). I am starting to think/wonder if we are all pre-dispositioned to manage our anxiety differently and unfortunately if we do not fit “the box” or the mainstreamed approach, we are labeled and considered different or ill. I say this because I have watched the healthcare and educational systems (despite highest and best intentions by so many lovely people) exasperate our daughter’s symptoms, trauma and PTSD. We need to evolve our thinking, approach and systems that support.
FQ: You mention the importance of finding the right mental AND physical healthcare team. Why is this important and what advice would you give others struggling to find the right team?
REHKAMP: Finding the right team is imperative for everyone involved—the child/individual and family/friends/community that support. How do you find the right team? I get this question a lot and honestly wish I had a better answer. Again, the healthcare system for those that might need support is difficult and frustrating to navigate. My best advice: listen to your child…listen to your heart…listen to your family, and be tenacious. Research and try many different approaches until you find the right fit/combination. We explored everything from Western to Eastern medicine. Anna has tried many different medications, therapies and counseling teams. At one time Anna struggled in a clinical counseling setting, so we transitioned her therapy to “Acres for Life” to receive equestrian therapy. Anna’s current multi-disciplinary team includes a psychiatrist, individual counselor, family counselor, pediatrician, school case manager, nutritionist and a chiropractor—a holistic approach we have found is extremely important. If you are hesitant, never be ashamed of getting help or teaching your children it is okay to ask for help. In my opinion, it is a sign of strength and courage.
FQ: Dance was such an important part of your daughter’s life before her mental illness began and she certainly bravely struggled to continue with dance throughout treatment. Is she still dancing today?
REHKAMP: No, Anna is no longer dancing today. She mentions possibly wanting to dance again in the future. I think there is still currently too much related trauma and PTSD. However, Anna is now very active in the theatre and her dancing/training certainly enhances her stage presence.
FQ: I love the note your daughter gave you that read, “God gives the toughest soldiers the hardest missions.” You mention that you saved the note. Does it give you hope on those days when you find it hard to get out of bed?
REHKAMP: Yes, I am looking at the note on my bulletin board adjacent to my desk now. There are many days I have needed this reminder.
I am a believer that all things happen for a reason and despite the challenges life throws at us, we can live intentionally with purpose and pride. I work hard every day to teach Anna and my other two children this.
FQ: So many people think that dealing with mental illness means trying to get better rather than getting stronger. You make it clear that it’s about getting stronger and you make this point several times throughout your memoir. Why are so many people fixated on “getting better” and how might that make their lives more difficult?
REHKAMP: Many of us understand physical illness (e.g. a cold)—symptoms we understand and can quite literally see (a runny nose, watery eyes, a cough, stuffy nose, etc.). We know with time, sleep and maybe some antibiotics that we will start to feel better and life will resume as it was before. With most physical illnesses there is a diagnosis, a treatment plan and/or prognosis. We assume the same for mental illness. Unfortunately, it is not the same. Diagnosis is difficult, treatment plans are often trial-and-error, and prognosis is rarely ever known. In addition, we make the assumption if we “just find the fix” life as we knew it might resume or revert back. A mental illness is not something you get past, but instead something you learn to live with. Again, I am not sure we are always dealing with an illness, despite our attempt to classify it as such. Our daughter will always have acute anxiety and might brave panic attacks her entire life. She is not going to “get better,” but instead will get stronger by accepting and learning to live with her anxiety and panic.
FQ: In the chapter where you recount “Our Daughter’s Journey,” it becomes clear that you’ve become quite proficient on all the medical jargon, medicines and treatments surrounding your daughter’s illness. It seems like a necessity when dealing with the medical world and fighting for answers. Do you find this a necessity to navigate through the medical world when seeking answers?
REHKAMP: Parents/care providers understand their children best, so in my opinion, they are their child’s greatest care advocate and certainly an expert at the table. An expert not necessarily because parents will learn the medical jargon or have a degree in medicine, but because parents/care providers know their children best. Despite what medical terminology we know or do not know, parents should always show up confidently and courageously—I have learned we often know more than we give ourselves credit for. Our voice is important and our children depend on it.
FQ: You tell “the other moms out there...” to not try to be perfect. How important is it for parents to take care of themselves when dealing with a child with mental illness? And how hard is it to stop and take a few minutes for self-care?
REHKAMP: I am chuckling as I write this—I promised myself a run today and I still have not taken the time for myself. I am also a Type A, First-Born—I strive for order in my life. Statement above is as much for me as it is for others. But, I will advise that I know I am not nearly the parent I need to be for Anna and our other two children if I am exhausted mentally, emotionally and physically. It is extremely important to remember that moms, dads, care providers, siblings, etc. are patients too. Meaning we are all impacted by mental illness and need self-care and love. Be good to yourself because only then can you be good for others. Now, off for that run...