Alexandra Johann

Alexandra Johann

Peer Support Specialist, Career Coach and Volunteer: Alexandra Johann (pen name)

I never expected to develop schizophrenia. I also never expected that after receiving the diagnosis, I would be given so many opportunities to help others who have also been impacted by the illness.

I had always been a happy kid, until about age 12. At 12, I actually wrote a will as I had become suicidal and told a friend of mine about the will. My older sister found the will and confronted me about it, but I dismissed it. My parents noticed I was becoming depressed, which runs in my mom’s family, and arranged for me to see a school counselor. She said I was fine.

In my second semester of my freshman year of high school, my family moved from Louisiana to a small city in Oklahoma. Following our move, I noticed I had become a negative and pessimistic person, but since I was not a danger to myself or others, I assumed nothing serious was wrong with me. The summer before my senior year in high school, I developed mono, and though my doctor noticed I was suffering from depression, I convinced my parents that everything was okay. I thought that my experience with depression was simply my lot in life.

In college, I began antidepressant medications and was abusing substances, but I successfully graduated in 1997 with a BS in psychology from Louisiana State University.

About the time I began graduate school in economics, my mom finally encouraged me to go to a therapist, where I disclosed that I was having mood swings and was diagnosed with bipolar disorder. I bounced around full-time and part-time work, and when I was unable to work full-time, I became homeless for a month, living in a homeless shelter in an inner city. I was content there, though it felt highly dangerous. About that time, I also became very paranoid that others would discover that I had been diagnosed with bipolar disorder and discontinued my medication. I would never finish my master’s degree in economics.

For several years, I worked part-time teaching at a school in Houston. In 2007, I finally agreed to resume medication and moved in with my parents again. Soon afterward, in 2008, my mom feared I would attempt suicide and believed I could not take care of myself. She found an attorney to help her obtain guardianship. One day, the police confronted me and confiscated my driver’s license. I was also deprived of my right to vote. Because I was paranoid of police and sirens, being arrested was traumatic for me. I was also hearing voices at the time, which cautioned me to be on my guard around the police.

The hospital I was taken to felt scary, as a fellow patient told me terrifying stories about electroconvulsive therapy (ECT). In hindsight, I am doubtful her description was accurate. I also did not know how long I would be there. Fortunately, the antipsychotic medication I was given began to work after a week. On medication, I became much less paranoid, but my doctor prescribed a very high dose of antipsychotic medication that was highly sedating for me and left me dysfunctional and disabled. I felt like my life was over. I expected I would always be on disability, and my perception of disability was that it was a road leading to nowhere.

Six months after this hospitalization, I experienced command hallucinations telling me to kill myself by swallowing a bottle of Tylenol. I nearly succeeded, but my dad discovered me in time. Soon after, I signed a contract with a counselor agreeing never to harm myself again, and I stuck to it.

For the next few years, I constantly felt disappointed with myself. I worked part-time as a GED teacher, for a nonprofit, and then a secretary. But I was unable to work full time and was living on Social Security disability income.

My life drastically improved a couple of years later when I began clozapine. This antipsychotic medication eliminated the paranoia, voices, and suicidal ideation I continued to experience. I had not expected the clozapine to make a significant difference, but it did in a few weeks, just as my therapist, who also was a nurse practitioner, had expected. Of course, I had to get used to having my blood drawn weekly, and then only monthly. I also needed to sleep at least 10 hours each night. Unfortunately, for me, the dosage prescribed did not suppress my symptoms for a full 24-hour period. My psychiatrist provided an additional clozapine pill to take in the afternoon, which eliminated most of these symptoms. I have been recreating my life since then.

Following my initiation on clozapine, I began looking for my niche as a professional. In 2013, I discovered SARDAA (Schizophrenia & Related Disorders Alliance of America, which today is Schizophrenia and Psychosis Action Alliance) and its free support groups for people diagnosed with schizophrenia or related disorders. These groups are called SA or Schizophrenia Alliance: Psychosis Support and Acceptance. The Blue Book used in these support groups provided me with a new goal: “Perhaps the most obvious sign of recovering is the reduction and control of symptoms to the point of permitting one to have the ability to find and keep steady and structured activity” (the Blue Book, 2019 edition, page 24).

In 2015, after volunteering as a grant writer for SARDAA, I was awarded the Volunteer of the Year honor. A couple of years later, I decided to face my fears of being “found out” and went through certification as a peer support specialist, learning to tell my story to help others and aid them in finding resources. I was hired by SARDAA to coordinate the SA groups, and in July 2020, I was promoted to the director of community engagement. I am still in that position and have worked at SARDAA for over three years.

In 2017, I became certified as a peer support specialist in the state of Louisiana and as a career coach by PARW/CC, the Professional Association of Resume Writers and Career Coaches. I am currently working on my master’s degree online in academic advising from Kansas State University.

I was once told by a psychiatrist that I would never be able to work full-time again. I took that comment as a challenge and began working more hours each couple of years. In December 2022, I earned my graduate certificate in academic advising from Kansas State University. I will continue working on my master’s degree in academic advising. I have worked at S&PAA—Schizophrenia & Psychosis Action Alliance (formerly SARDAA) for over five years, coordinating free support groups, answering our helpline calls and emails, managing volunteers, and helping with advocacy projects. I still have my certification in Louisiana as a peer support specialist, and I continue to be a career coach through PARW/CC.

As of July 14, 2023, I no longer work handling outreach, answering helpline calls and emails, and managing support groups and volunteers. I have been hired full-time to help college students qualify for and maintain scholarships and grants at public universities in my state. I finally have met the goal I made in 2008 of going off disability.

אני בטוח שהניסיון הרחב שלי בהדרכת אחרים יעזור לי להצטיין כשאני עובד עם אנשים מרקעים רבים ושונים.

I am grateful for my own recovery every day and hope to see others rebuild their lives as I have. In the future, I plan to continue helping with the support groups and help people with schizophrenia or related disorders in their job searches and/or schooling.