Eds. Note: We received this letter from a friend in Southern Oregon. If you can help, or would like to be in contact with the author Heika Wilson, send a note to firstname.lastname@example.org and we’ll try to put you in touch with her.
I am one of the approximately 2% of the population diagnosed with bipolar disorder. That diagnoses encompasses many individuals with many “flavors” of the disorder. My particular type is called Bipolar I, and within that group, the disorder is further defined. As specifiers in the world of DSM V, my disorder is characterized with mixed features, rapid cycling, and psychotic components.
What that means in easy to understand terms is that I have manic episodes mixed with depressive elements. I experience the extreme racing thoughts and chaos of mania right alongside depressive thoughts of suicide and self harm. As a rapid cycler, my disorder is a frequent, unwelcome visitor. Without medication to manage symptoms, I experience episodes four times a year or more. I also have psychosis in the form of auditory hallucinations and delusions that fade reality.
I came by this disorder honestly. It is biological and genetic. I inherited it from my dad, right along with his nose and eyebrows. My father had a less severe form of bipolar disorder, and lived in a different time. He was never diagnosed. Some members of my family would argue, in a mistaken belief that finds shame in this disorder, that he didn’t have it. But, he had symptoms very similar to my own.
I was first told by a therapist I was likely bipolar in the early 1990’s when I was twenty years old. I was experiencing the extremes of the disorder, and thought it was moral failing on my part. I sought help for the first time in the form of counseling. The counselor recognized my symptoms as bipolar almost immediately, and told me his belief at the end of our second session. He was casual about it, and urged me to seek help from a psychiatrist that could diagnose me and prescribe medications to help control it.
I left the appointment horrified. I was twenty years old, and already knew the consequences of impulsive actions upon my life. I dropped out of high school less than a month before graduation, with a 3.6 GPA, high SAT scores, and a scholarship to college. My life since that time was a classic example of untreated bipolar disorder. But, I was more afraid of having a disorder that had no cure and an unhealthy public stigma than I was of being told I was simply failing at life.
When I confided in my mom, she reassured me by agreeing with my conclusion that I wasn’t bipolar. She told me everyone was diagnosed bipolar, it was the new catch-all of the times, and I wasn’t. She believed I just needed to be more responsible and exercise self discipline. I took her thoughts to heart, and didn’t seek help for many, many years after that day.
And, my life proceeded on the path of a person with undiagnosed and unmanaged bipolar disorder. For twenty years, I fought against my own out of whack brain chemistry, trying without success to exercise self discipline. My life story could be the poster child of bipolar disorder.
In early 2012, I found myself at an end. I was newly sober, having just completed a long and scarring love affair with alcohol. I was attending 12 step meetings, and trying to piece a life together. But, without the numbing impact of alcohol, my brain chemistry had ramped up into an extreme episode of mixed mania. I was irritable, manic, and more than a little crazy. When my ability to sleep went away, I finally made the best decision of my life. Out of desperation, I sought help.
I went to Klamath Basin Behavioral Health (KBBH), the only place that accepted people without medical insurance at that time. I can’t say the experience was great. The first person I saw for an evaluation was impatient, rude, and chased me out of her office as I fled, yelling into the lobby full of patients that I was a drug seeker. I had told her that I couldn’t sleep, and that I really needed medication to make that happen.
It was a clear statement of my distress that I went back for a second try. A week or so later, I took my husband with me, and we spoke to the administrative staff at KBBH about my interaction with that first evaluator. They listened respectfully, and I was assigned to a different evaluator for assistance. All these years later, that first lady who accused me of drug seeking is still employed at KBBH. I hope the day she saw me was just a bad day for her, and no one else has had to experience what I did.
I was officially diagnosed as Bipolar I in 2012, by KBBH mental health staff. At the time, there wasn’t a psychiatrist on staff, to my knowledge. I saw a psychiatrist via video in the KBBH office, who prescribed medication to help control my disorder. And, yes, she prescribed medication that allowed me to sleep!
The world changed after that. I found a place I never knew existed. I understood consistency and moderation for the first time. I could exercise self discipline! I started a journey I hadn’t been capable of prior to medication. I started to become the person I always knew I was, but could never achieve. I know that sounds like a strange sentence. I believe I have always had my core beliefs and morals, but my disorder prevented me from living in a way that honored them.
I began to see an excellent therapist employed by KBBH. She guided me through the mess I had made of my life, and helped me to find focus and resolution. I was so grateful. At the same time, I started to see a newly hired nurse practitioner at KBBH, S, for medication management.
I don’t find myself to be a difficult personality. Some feel otherwise. I advocate for myself, and I am forceful when I feel my needs are not being addressed in a beneficial way. My first appointments with S were marked by discord. We simply didn’t mesh. Our personalities clashed. It was no more her fault than mine. I decided that, instead of requesting a different medication management professional, I would stick with S and make it work. For many years, I did. Over time, we began to work together more smoothly.
It is an unfortunate truth that medication for bipolar disorder loses effectiveness over time. What worked with incredible results initially becomes less and less capable of managing the disorder as our bodies acclimate to the drug. My first medication change happened a couple years in. It was a smooth process. I discussed the changes in my brain chemistry and how my symptoms were returning. S prescribed a new medication, and it was effective. I continued on with my new-found, stable life.
I apologize, as the dates for the following events are hazy in my mind. I can only give an idea and a general order of when they happened. But, this is the true reason for my letter today. Please forgive my long lead up. I feel that I needed to explain what life was like for me up to the point when all of this happened. I was an incredibly grateful recipient of public mental health care, and it was working wonders in my life.
Near the end of winter and the beginning of spring 2017, my brain chemistries began to find their way around the medication I was prescribed. I was having minor bipolar cycles again. I went to S and discussed those changes. She felt the cycling was minimal enough it didn’t need to be addressed at that time. I left the appointment feeling conflicted and concerned.
At that time, I was seeing an excellent doctor at Cascades East. I trusted him and his judgment. I had an appointment for an unrelated matter, and I discussed the return of bipolar symptoms with him. He offered to manage my mental health medication. After discussing it with my husband, and really considering my options, I made the decision to do that. I left KBBH medical management for the first time since I had been diagnosed. I continued to attend therapy at KBBH. My original therapist had long since left the organization, and I was seeing S. S is also an incredible therapist, and his assistance has made an impact upon my life.
Dr. D took over management of my mental health medications. He increased one of my medications, and all was well for a few more months. Then, the symptoms started again. By early fall, I was beginning to experience instability. To my dismay, Dr. D had graduated and left Cascades East. I made a formal request with Cascades East to be assigned to a resident with knowledge of mental health, based upon a recommendation from a friend. And, in classic fashion, I was assigned to someone else. My new doctor was Dr. E.
Dr. E. I wish I had positive things to say about him, but I just don’t. To put it simply, my medication management with him did not go well. My final appointment with him was baffling, to say the least. By this time, it was December or so, and I told him of the continued progression of symptoms that were not being minimized by the medication I was prescribed. My bipolar symptoms were returning, in all their glory, after many years. I was irritable, impatient, and short tempered. I was having racing thoughts and desperately trying to keep impulsive decisions in check. I was isolating myself out of shame and fear. And, the worst for me, sleep was disappearing. A simple internet search of bipolar symptoms will bring up multiple lists, on multiple sites, listing these as common symptoms of the disorder. Dr. E looked confused for a moment, and then said, “Well, you can’t be bipolar, then. Manic means you are happy.” I left the appointment without a change in medication that helps to manage bipolar symptoms, because Dr. E decided I wasn’t bipolar.
Knowing I was in a very dangerous situation, I contacted KBBH to reestablish medical management care the following day. By this time, my relationship with my therapist S at KBBH had become tenuous. I missed an appointment with him due to scattered thinking from a lack of sleep. I confused days, and no-showed an appointment. He was the only person who could have helped me navigate the KBBH system, and my no-show meant he was no longer a resource. I was told I would need to reestablish care during walk in hours, and appointments were gifted on a first come, first serve basis. With sleep eluding me, and manic symptoms returning full blown, I stood in line behind other desperate people seeking help in the predawn winter mornings outside of KBBH. At that time, the office opened for walk in appointments at 7:00 a.m., and, to have a chance at being seen, I needed to arrive at the building by 6:00 a.m. Over the following two weeks, I stood in line four times. Each time took monumental effort on my part, due to the return of symptoms. Scattered thinking and no sleep were playing havoc on my ability to function.
The first three times, I stood in line for over an hour in below freezing temperatures on the porch of KBBH to be told I was too far back in line to be seen that day. The fourth time, following yet another sleepless night, I arrived at KBBH at 5:15 a.m. I stood in line behind one other person who was just as desperate for help as I was. We were the lucky ones that day. We were selected to be seen.
I was scheduled to see Dr. J. I came back to the building to see him at my appointment time, and, with the scattered and chaotic thinking that were becoming signature for me, I told him my symptoms. He increased the medication that I was already taking, and prescribed a new medication as well. Reassuringly, he urged me to call for assistance if I had trouble with the medication changes. He told me to schedule an appointment for his next available opening on my way out. I stopped at the desk and tried to do that, but because the holidays were approaching, they didn’t yet have a schedule to put me in to. They said they would call with an appointment.
I left that day, relieved. I took the medication as prescribed, and discovered I could not tolerate the new medication at all. With all psych meds, there is a wait time to begin realizing their effectiveness. I continued to take the medications, but my symptoms were escalating. In early January, I called KBBH to make an appointment, as I hadn’t received a call back. They again said they would call me back with a time. After another week without a call, I called again. I was told I missed my appointment, which was scheduled without my knowledge or notification. My file at KBBH has two telephone numbers in it, and both are cell phones. They show missed calls, and mine didn’t have any from KBBH. There were no recorded messages that I might have missed, either.
I was frantic. I was engulfed in a mental health crisis. My disorder was in full play, and I was experiencing hallucinations and delusions. Sleep was impossible, and I was no longer driving because I didn’t believe I was stable enough to do so safely. The impact was enormous. Self sufficiency left me. With the return of symptoms and a major mixed manic episode, I was barely able to shower, let alone take care of day to day tasks and chores. I wasn’t even capable of attending the 12 step meetings I relied on for ongoing support and friendship.
I asked KBBH for an emergency appointment. They said someone would call and discuss it with me. I called 4 more times in the following days before receiving a call back. I spoke with a nurse, who asked the hallmark questions of mental health. Are you suicidal? Are you homicidal? I answered honestly. No, I wasn’t. And, with that, I was scheduled for an appointment at the end of March, with the promise of a call if there was an earlier opening.
In the months following that phone call, my life became very small. I was reduced to survival level. I slept when I could. I showered if I was able to. I no longer left the house, and no longer answered phone calls. I couldn’t drive. Family and friends called, concerned. Ashamed of my condition, I isolated myself. Delusions, hallucinations, and long sleepless days and nights were my occupation. I felt like I was in hell.
During those months, I called KBBH many times, requesting to be seen. I never received another call back. I emailed them one night, in the middle of another long stretch of sleeplessness. This is the email.
- 3/7/2018, 1:23 a.m.From: (
email address deleted
- Subject: Appointment with Dr. J
- To: email@example.com
My name is Heika Wilson, and I am a client.
I am bipolar I, and have been in a severe mixed/manic episode for quite some time. I have an appointment with Dr. J near the end of March, but I am nearing the point where I simply don’t know how much longer I can do this. I am exhausted and frightened. This episode just continues to get worse, and I see no end in sight without some immediate help. I need to be able to think clearly, and I can no longer do that.
It has been many months since I have been medically stable. The impact on my life has been dramatic. The medications I am currently prescribed are not working.
I am out of ideas, and very close to simply checking in to the hospital. I don’t even know if that is a thing, but I just don’t know what else to do. I can’t keep doing this, though.
Can you please try to work me into a slot to see Dr. J? 15 minutes of his time is all I need. I live within 10 minutes of KBBH, and can arrive with short notice.
You can call me at (number deleted) .
I believe my spouse is authorized to speak to you as well.
M Wilson’s number is (number deleted).
As an FYI, the email contact form on your website isn’t working. That was a bit frustrating.
Thank you for any help you can offer.
I did not receive a call the following day, and neither did my husband. On Friday morning, March 9, I called KBBH again, requesting to speak to Dr. J. I was told my message would be delivered to him. I discovered shortly after 5:00 p.m. I missed a phone call at 4:30. Dr. J left a message, saying he was trying to reach me. As it was after office hours, I couldn’t return his call.
It was a long weekend. By Monday, I couldn’t function. I was no longer capable of clear enough thought to call KBBH. My husband did it for me. The receptionist told him Dr. J was on vacation until March 22nd, the day of my scheduled appointment. He asked for an emergency appointment with whoever was available. The receptionist told him I was scheduled on the 22nd, wasn’t that soon enough? He told her it wasn’t due to my mental status. The receptionist transferred him to the nurse, R. He left a message, expressing his fear and desperation on my behalf, and begged for an appointment. We never received a call back.
I am not sure if I can share the dread I felt when my husband told me the details of his call to KBBH. With barely suppressed panic at my own impotence, I tried to encourage myself to continue to hang on. I just didn’t know what else I could do. 10 more days. In the madness I had been reduced to, it was an eternity.
On the 13th, my 46th birthday, a friend reached out to me via Facebook messenger. We hadn’t spoken in some time, as I was still trying to hide the crisis I was in. Impulsively, I told her in a scattered, frantic way what was happening in my life. And, that friend helped me. I am not sure I would have survived to today, March 23rd, if she hadn’t. She told me of a friend who established care with a psychiatrist via the internet, using video appointments. I had no idea it was even a possibility.
With a small and uncertain spark of hope, I googled. I found them, the ones in Oregon. None of them accepted my insurance, and I no longer cared. I emailed four of them in the middle of the night. I tried, without success, not to beg for help. Of those four, two responded. One told me they couldn’t help, even with cash payment, due to the type of insurance I have. The other said she would help me. I don’t believe I have ever experienced as intense a wave of relief as I did when I read her reply.
I filled out her paperwork and agreed to pay her our negotiated fee. I met her via video chat on the 15th, and received what I so desperately needed. Help.
I started on new medication the following day. I experienced some relief almost immediately. The medication is not yet at full dose, and I am still having symptoms. But, they are less than they were, and they continue to improve as the days pass. Knowing an end is in sight makes them bearable.
Although it is expensive on my fixed income, I agreed to sign on to a concierge service with my new psychiatrist. What that provides doesn’t have a monetary value. The promise and knowledge of immediate assistance is invaluable. I never want to feel the agony of the past months again. I won’t survive another episode as tormenting as the one I am starting to recover from. The monthly payment for her service is well over 10% of my income, and although I can’t afford it, I can’t afford to be without it. So, I pay for services that should be readily available in my own town through KBBH. Because I need that promise. I need the comfort of knowing I won’t be abandoned. When I need help, she will be there.
And, now, the part of this long chain of events I struggle with most. My husband also receives services from KBBH. He suffered a death in his family that sent him into a tail spin, and sought help at my suggestion around a year ago. His doctor is also Dr. J. He has been sliding deeper into a depression of late. I am sure his depression is partly due to my mental state, which forced him into the role of caregiver and advocate for me. He sees a counselor, and his counselor called KBBH on his behalf yesterday afternoon. He requested that Dr. J call my husband and discuss an increase in antidepressants with him. Within half an hour of coming home from the appointment, Dr. J was on the phone with him. He made the changes my husband needed over the phone, and my husband picked up the newly prescribed medication this morning from the pharmacy.
While I am happy my husband was able to receive the care he needed in a very timely manner, I have to ask, why wasn’t I given the same kind of care? I was in crisis, suspended indefinitely by brain chemistry gone very, very wrong. Desperate for help, I urgently sought it for months.
A friend with intimate knowledge of KBBH operations asked me yesterday if I was “black listed” by KBBH. With evidence of the prompt care my husband received, I reluctantly speculate that I am. I don’t know what I did to earn my spot. If I am on it, are other people also on this suspected “black list”? Does a carefully monitored, private list of individuals, singled out for special treatment, exist? Do those people also struggle with unreturned phone calls, ignored pleas for help, unavailable appointments, and appointments made by staff who don’t take the crucial step of communicating date and time?
I have a major mental illness. It isn’t something I asked for. I had no more control over its arrival than a person with epilepsy has over the arrival of their illness. It has impacted my ability to make a living, to have a stable home, to maintain friendships, to stay in relationships. It has been a single, defining feature in my life.
I wonder what it would be like if emergency rooms operated like our mental health facilities. Can you imagine going to the emergency room for help, only to be told you need to return the following day during walk in hours? And, that only a few people would be lucky enough to receive care that day, so be certain to arrive early. Don’t let the symptoms you need emergency services for interfere with your ability to stand in line early in the morning, in freezing temperatures, for a long time. If you do, you won’t get help and will have to come back another day to try again.
When I discovered that proper medical management gave me opportunities, stability, and a way of life I never even knew were possible for me, I mourned the loss of over twenty years of my life to the chaos of this biological disorder. For nearly six years, I enjoyed a level of living I didn’t know existed. I gained confidence in my abilities and in myself.
And then, this crushing episode. It is a harshly taught lesson in vulnerability. Stability, confidence, joy, and even survival can all be stolen with ease, just by withholding critically needed help. I know the anguish of being ignored and the impotence of praying for a five minute phone call that holds the power to vanquish a nightmare and restore sanity.
I am one of the lucky ones. I have a loving husband who protected and supported me these past many months. It would have been incomprehensibly worse, probably fatal, if he hadn’t been here for me. I have the benefit of loving, caring, family and friends. They express their love, and try to help. I am fortunate to have a mind that can somewhat function in even the worst state, and advocate for myself.
I have a question for those of you that have made it this far in this long, drawn out letter. What happens to the people who don’t have a loving family member? Who helps them when they are incapable of advocating for themselves? Are the mentally ill in our community simply dying due to a lack of assistance when needed? Or, do they lose everything? Do they lose their sanity right along with their home and their children?
I wrote this long letter because of those people. I am safe now. I had the presence of mind, the opportunity, and the cash to find help. I fear the repercussions of this letter. I now understand that an agency doesn’t need to deny services. They can just make them unavailable through a mixed strategy of unreturned phone calls and inaccessible service. I know the risk I take by shining light upon my treatment. I am reluctantly pushed into a position of advocacy that I would not willingly choose. I cannot bear the fear that others are treated with the same disregard for life I have been. It is with trepidation and unhappy responsibility that I am forced into action.
Civic leaders, mental health advocates, whoever you may be, reading this. I am one person with one experience, and it wasn’t a good one. It nearly led to my death, and it did lead to my insanity. Does my life have value? Am I, as a mental health patient, as valuable in our world as any other person? I like to think that I am. I like to believe my contributions to the world around me have meaning.
Please feel free to share this letter if you feel inspired. Use my name. I am willing to speak to you on behalf of those people who may not be getting the assistance they need. I feel that the stigma of my mental health disorder and any repercussions I face are small price to pay if my story helps save the life of someone else.
It is in your hands now. Please, try to fix it.