My Son's Journey through Mental Illness, in His Words

My 24-year-old son was diagnosed with schizoaffective disorder (combination of schizophrenia and bipolar disorder, in his case) in 2011. He has decided he wants to start sharing his story publicly, so he will be speaking for NAMI (National Alliance on Mental Illness) this Monday. He asked me to share his story with as many people as possible, so that’s why I’m posting it here. I am so very proud of him. He is a warrior.

NAMI Speech Presentation
December 5, 2016

Hello everyone, my name is_____, and I am here to give a short presentation on my experiences with mental illness and their ramifications in my life. I have lived in Texas and Maine, and I have seen mental illness face-to-face from month to month and on everyday encounters.

I have motivation to speak from several sources, the best of whom is my psychiatrist, among others including friends and family. Good common sense from my doctor inspires me to maintain healthy well-being with respect to managing my symptoms and also take my medication as prescribed. Friends and family have often supported me in my trials and have always been there when I have needed a helping hand. My life has been rigorous at times, and my support network has been invaluable in encouraging me in my worst moments.

In the early fall of 2010, my collegiate career began on a promising note. I started well enough at the University of Texas at Austin, but soon began to decline mentally. My roommate stayed up late at night playing online games, I had a hard time sleeping, and in classroom settings, I had an odd tendency to think that people were tapping their feet because of the intensity of my gaze. I didn’t think that it was odd in those moments, however, but as the months dragged on, my mind was wearing down and causing me to doubt my reality. Eventually, at the end of the first semester, I expressed my voice to a woman, my grandmother who lived nearby, and said, “I think something is wrong with me,” and trembling, I said, “I think I need help.”

My granddad, my grandmother and I were able to find a psychiatrist nearby, a respectable woman, who quickly analyzed my situation to be an example of a delusion of reference, the idea that in my own mind mere coincidences lined up with strong perceptions of personal meaning. Basically, I had experienced my first known mental illness outbreak, and I needed medication to quiet the thoughts that were practically exploding in my mind—the foot tapping wasn’t caused by me, I tried to think, but part of me still believed that all of the weirdness of the situation was my fault. Now I know that I was experiencing mental illness.

I was diagnosed with schizoaffective disorder type II bipolar type, a name that seemed foreign and strange to me. As far as I understood, it was a variety of schizophrenia that accounted for mood changes—anyway, I didn’t know how to take care of myself, so it sort of made sense. I wanted to change for the better, but my symptoms of bizarre thoughts, sleeping too much because of my medication, and headaches because of my classes bothered me to the core.

I managed to make a 3+ GPA in that first year of college, but the mental hospital visit at the end of the second semester definitely highlighted the realness of my mental condition. My medication that I took was causing me to miss classes regularly, so I would end up isolating in my room frequently, and my mind weakened as a result. I ended up expressing my emotions surrounding these events by drawing explosions on a notepad, and when the obviousness of the racing thoughts quickly revealed itself, my exact statement was, “The sh-- has hit the fan. So this is why I have a safety plan.” A few weeks later, thinking back on the episode, I thought, “Good riddance. Thank the establishment for the hospital visit.”

At the end of the summer following my freshman year of college, I went back to Maine to live at my parents’ house as my permanent residence. I found a new doctor, and I was all set to keep living a good life. I was too psychologically unstable to stay at Texas, so I had the option to either go to the hospital for sanity or go back home, so I went home. I took the fall 2011 semester off to collect my thoughts and take a break, but I was back at school, the University of Southern Maine at Portland, in the spring of 2012.

At the end of 2012, I began to hear from things I didn’t understand. I even remember the date—this kind of experience has been going on and off since that time, and did not become significantly better until the end of 2015. I do remember the day. I was lying on my bed thinking about something, maybe dinner, when all of a sudden, I heard this loud voice say in my mind, “No,” and I didn’t think it came from me. I was frightened after this event and I didn’t know what to say. I was a little bit unconfident speaking my own voice then, so the idea of saying something about what I felt happened was unnerving to me. I decided to play it cool and brush it aside like it didn’t happen, but that’s the thing about my experience: It was not good. The problem, the voices, was integrated slowly into my thoughts, and eventually after a few weeks I just accepted them in a deluded kind of way. This went on. I went to the mental hospital again that spring and again soon after because my thinking was not in alignment with reality. I thought that the voices were real and that they were coming from heaven to save me, and the deceit from the words I heard lasted for years.

They said they would save me over and over again, but they never did. It felt real, but their promise was so flimsy. The new problem was that they wouldn’t give my mind ease and rest. They didn’t leave. I hoped they would, but they just kept staying there.

My conclusion that their statements were delusional in nature didn’t really come into play until the early fall of 2015. This was after I dropped out of college, after I went to the mental hospital for a fourth time, after I left my parents’ house as a means of feeling less pressured by my life situation, and after I moved into a transitional living unit, a Shalom House in Maine. The move was healthy. The Shalom House was designed for people who experienced severe mental illness, and I noticed the change immediately. I transferred my possessions and with some help from my parents got settled in to my new apartment. Finally, I was feeling some contentment with life. Then, in the August of 2015, tragedy struck. I got the news that my cousin had died by suicide. After much observation, my family realized that we didn’t know why he went down, and that was frightening, but in the end we accepted it. I went to a wedding shortly thereafter and that liveliness eased my mind about my cousin’s self-inflicted death.

In the midst of all of this, I was still trying to understand the symptoms of my mental illness. I spoke to my doctor at length during one appointment and it did not go particularly well in my opinion but it didn’t merit a trip to the mental hospital. I said a few things about what the voices were saying, and one of the things they said that I briefly mentioned was that there were many infinite things in heaven. This was hard to comprehend, and it finally broke me out of the delusion cycle. Now after this expression of my voice with respect to my mental illness, I realized that I had no reason to bother listening to the voices anymore. The pretense was exposed, and I was done. This was the start of my emergence out of my mental illness.

Now I was just living with a mental disability, a condition that limited me, but did not imperil me. The end of the year was near, and the family of my formerly mentioned cousin was visiting Maine. I stayed at my parents’ house for the last week or so of 2015, and throughout that time I reflected on my cousin’s death. I knew that healing would take time, but that the burden weighed on my family by my cousin’s death would ease as time passed by.

In January of 2016, I got an offer to move down the road out of the transitional living unit into an apartment, another Shalom House apartment that I would as proposed share with a roommate. I accepted the offer and in February of 2016 I successfully moved into the apartment down the roa. Since that time I have had no medication adjustments that were made as a result of bad symptoms that I have displayed. This goes until this month, December 2016, and I am pleased to say that my life has been improving for the better part of the last year. I have been walking and exercising consistently, around 45 minutes per day; I have been monitoring the money that I receive through Social Security based on my mental illness condition; I have been managing my diet successfully enough to feel good about my weight and nutrition.

Maintaining my well-being with respect to my mental health has gotten easier over the course of this past year. I still occasionally hear beeps and boops from my mind and occasional words along the lines of: “You’re in a process. You’re going to heaven tonight!” But, overall, I have been feeling peaceable and at rest and satisfied with my ability to express my voice with respect to my mental illness. One thing I say sometimes is: “I appreciate life, and it is absolutely worthwhile to me.”

There are so many ways the people in my life have helped me to become the stronger individual I have become, and also the man who is more pleased with life. For one thing, my parents have supported me powerfully throughout my life. They have edified me with wise and teaching words, they have raised me to be spiritually steadfast and walk strong in my faith in Jesus Christ, and they have loved me as a child of the Most High God.

For another thing, my doctors have treated me well and I have been fortunate to have good care. My doctor in Austin was always listening when I had urgent issues, and my doctor in Maine is the same on that front. Both are regarded highly by me and I know my family appreciates them also. Raising and lowering medication, in addition to adding and discarding medication, is a critical piece of psychiatry to my understanding, and I have found my psychiatrists’ insight to be great with respect to my psychological and even my spiritual functioning.

Finally, friends have also played a significant role in my life. Teachers who helped me make into the University of Texas, Scout leaders who helped me to become an Eagle Scout, coaches who helped me race in a 4x800 meter relay race that set the Maine State record, and counselors who have guided me in my challenges ever since I moved back to Maine have all helped me to succeed and to do my best.

I appreciate all of these people immensely, for they have been there for me in good times and in bad.

Thank you to all of you who could make it out here on this day! I appreciate the turnout, and I look forward to hearing your questions and thoughts, if you have any.

ML thank you so much for sharing this. Tears and chills…

His writing is so good. I hope his health continues to improve.

Wow. Words fail me. But your openness (and now his) are a gift to all of us. The gift of making us aware. Thank him for us, please.

You have reason to be proud, @MaineLonghorn! My heart goes out to him and your whole family. You are right, he is a warrior… And your support and love is a huge part of that. Bless him for bravely speaking out for NAMI, a great organization, and in speaking his truth, he is helping to lessen the stigma around MI.

His story is a familiar one to me. I work on a farm which is also the nation’s oldest therapeutic community/psychiatric treatment program. The majority of our residents are in this age group. Our admission inquiries always spike during college breaks, and especially during the holidays. So often, this is when families start to notice that something " really isn’t right"… changes in their loved ones that are more than just typical adjustment to college, or average teenage moodiness. Your son’s story also highlights the importance of reaching out for support, and the critical need for connection to others. One of the first things that happen when someone becomes ill is that they fall out of relationship with others, and begin to isolate. At that point, things tend to get worse.

I’m so glad that your son has found the supports and treatment which are working for him. I’m sure it has been a difficult journey. I wish him, and you, all the best for his continued recovery.

Thank you so much for sharing this. This brought tears to me also. I pray for your dear son and your family. I am root for him!

MaineLonghorn -

Thank you. Son of MaineLonghorn, thank YOU!

I am right now preparing to remove my 22-year-old brilliant Eagle Scout from college to try to treat his emotional issues. He has never been diagnosed with anything other than ODD and mild anxiety but he is falling apart and needs to be away from school.

Your story gives me hope that my son can overcome. I just wish that he was as open to outside help and assistance as ML son seems to be.

Good luck on the speech and the journey forward.

TM

MaineLonghorn, thank you so much for sharing this with us. Your son is working so hard to understand his illness and it is so inspiring. I know it is not easy, and to have him be so open to help from professionals and loving family members is so promising. Our thoughts are with you and your family.

@MaineLonghorn – fascinating post. Just a few weeks ago I went to lunch with my uncle and we discussed my cousin’s issues, which are similar: odd things like the tapping, connecting dots that weren’t related, hearing voices, etc. It sounds like they’re in a quasi-dreamlike state at those times.

Do you or your son remember anything happening while your son was in HS that might have been a red flag for what was to come in college?

Tell him thank-you from my family – I know you have all been through a lot, and we appreciate his insight. It’s very helpful to the rest of us, and I think it’s especially great to try and have more people with illness speak in their own voice. We have family who also endure bipolar life and this is truly important stuff to hear. Be well, find peace

wow, what a well-written piece. (too bad most college grads are not so well versed.)

Just outstanding. Kudos to ML-Son for the personal sharing, and to ML-'rents for posting.

ML, can I add something of an answer to droppedit? Delete it if you don’t think it’s appropriate. The thing I really remember during that time is how he became injured and could no longer run – a big physical outlet for him. As a former runner who knows how important it was for my mental health (they don’t call it a runner’s high for nothing), I always thought the injury contributed to the timing of when his mental illness presented. Continuing to run wouldn’t have stopped the mental illness, of course, but the timing always struck me.

You have every reason to be very proud of this young man, ML. He has climbed mountains most of the rest of us will never see.

Maine, thank you. Hugs.

Nice talk. Very interesting to hear his point of view.

Thank you. Hugs to you. Thanks to him for sharing and educating us.

ML- thank you for sharing this. Your son’s story, especially told in his own words, offers much information and hope. What a milestone that he has decided to share it. All good thoughts to your family.

@MaineLonghorn thank you for sharing. Wishing you and your family many blessings this holiday season and in the new year.

Congratulations to your son for turning his pain into advocacy. I know that from a parent’s point of view things have unlikely been as smooth as it turns out in writing. I am proud to be a fellow Mainer.