By Susanna Bertelsen

Decades ago, in the 1980’s, busy with our three school aged children in our Minnetonka home, I received a frantic call from my mother in Ohio, who announced over the phone, “Your brother has Schizophrenia. And they put him on Stelazine.”  Taking a deep gulp of air, I replied back to her, “My brother has Schizophrenia ??!!”  I had to quickly switch my mind from his previous 10 year diagnosis of Depression treated with Elavil to this new, scary reality.  AND, why Stelazine? …that was a major tranquilizer!?  Plus, who in our family had this disease?  No one that my parents could think of.

To say the least, at that time, this family news was both disconcerting and challenging.  Schizophrenia? Stelazine? What did I know about all this? How could I possibly support my parents back in Ohio?  My specialty in nursing was in pediatrics and public health, not specifically mental illness!  Initially I recoiled to think that he had a mental illness…what would everyone say and think?  Thirty years ago, mental illness was still stigmatized and hidden among families and also presented treatment challenges and limitations to health care providers.

So, I pulled out the books and began researching the diagnosis, treatment, prognosis.  Non-encouraging results came forward.

Fast forward to 1995, when my father died, and the doctors thought it would be mutually beneficial for my brother (my only sibling) to continue to live at home in Ohio, with our mother.  This was fine with me.  Then, suddenly, mother died January, 26, 2002, and, I inherited my brother.  Less than a week following mother’s funeral, we headed back to our home in Minnesota, with my brother in the back seat of the car, sleeping out one of his long Stelazine-drugged snoozes, all 13 + hours of the road trip!   What was I to do about this!?

I was frantic, confused, and felt helpless.  Soon, I began to reach out for information.  Help came in many grace-filled ways.  A friend in New Jersey advised me to check out NAMI MN (Minnesota affiliate of National Alliance on Mental Illness).   I attended workshops, worked with county and local mental health providers, and began to enter my brother’s world.  I learned how to confront stigma in and around mental illness. It became apparent to me what caused this. (And it wasn’t bad parenting!) I realized we were not alone in our struggles.   I developed compassion and empathy for my brother and his buddies, and their families.  I was shown how HOPE for RECOVERY exists today, in a way that was not available to my family in the 1980’s when they needed it the most.

My brother lived the last ten years of his life independently in supportive community housing, social connections and up-to-date medications that allowed him to live a meaningful life.  He resumed his biking and other hobbies, attempted to return to school in mechanical engineering, tried supportive employment, developed long lasting friendships and was happy and grateful for it all, right up to the end.  He died suddenly May 5, 2012 of complications from decades of smoking leading to diabetes and cardiovascular disease.

Five years after my brother began to live nearby, I felt a need to “return back to the community all that we had learned from this experience.”  In 2007, I trained for and began teaching Family to Family peer education to families whose loved ones live with the challenges of mental illness. I also sought out the support of an understanding Spiritual Director because I realized that I could not walk this walk alone.  Today I advocate for those living with mental illness and their families by providing both educational and spiritual support.

On February 3, 2018, I will facilitate an inspiring and informative NAMI MN – HOPE for RECOVERY workshop at Loyola Spirituality Center, in collaboration with NAMI MN.  Moving forward after my brother’s passing, I want everyone in my situation, whether a parent, sibling, spouse, partner, other relative or friend, to realize that “You are not alone, you didn’t cause it, and there is HOPE for RECOVERY!”

Please check out programs and workshops on our website for details