So I’ve lived with clinical depression for over 40 years, or actually 56 years considering it’s hereditary, but it first consciously manifested itself during my formative and very tumultuous early teenage years. I vividly remember living with an OCD-like obsession of making sure all of my thoughts, my brain chatter, were expressed to somebody, anybody, just to get it out of my head. This was how I coped with the not-yet-conscious-to-me stressors in my life. Things like my Mother’s two divorces, the chaos that ensued as she navigated single life with four young children, my adopted Father’s remarriage to a teen-bride-cum-step-mother, the abandonment from three different parental authorities….all of this information is available in my memoir, which, by the way, is still in my head. I hope you’ll be able to read it soon. Otherwise, feel free to call me-I’ll spill all the gory details.
I first began talk therapy along with anti-depressants at age 28. I was single, with a good career (except for the shrouded horrifying embarrassment of blatant sexual harassment which I discussed with no one ever, not even my therapist-oh the stigma. Brutal). I had a lively social life but an unknown level of lack of confidence, so I was an epic failure at relationships with men. Each failure was so disappointing and it was for that reason I sought therapy. In a stunning fluke of timing, I met my future (and current) husband not too long after starting therapy and medication, which appeared to “cure” me and give me hope for a happy future. Since the day I fell for Alan, I’ve always said that when I reach age 60, I will have been officially happy for one -half of my life. I still stand by that statement with surprisingly enthusiastic hopefulness even as I’ve spent the last five years in various stages of mental illness, coinciding with the onset of menopause and the gradual yet unexpected cruelty of experiencing the emptying of my nest that consisted of three children. In 14 months, it will be nothing but an echo is this house that Alan and I will continue to share and I am sure to be bereft. It remains unknown as to whether I will survive it.
Which brings me to the main point of this essay, where I chronicle my intense yet determined attempt at mental wellness. Sadly, you will find the essay to be incomplete, as I have yet to achieve the level of positivity and hopefulness that I aspire to reach through acceptance, contentment and peacefulness for the remainder of my days.
Summarized in a list form first, then details of my results follows:
- Scheduled 30 days in a “Women’s Mood Disorder” treatment center in Florida. My cost, $10,000.
- Tried new anti-depressant (Trintellix) to the tune of $900 per month.
- Started weekly in-home yoga sessions.
- Joined the YMCA for swimming and yoga exercise.
- Began seeing a new therapist.
- Began taking Symbyax, known as medication of last resort due to its weight gain side effects.
- Started Nutrisystem to improve nutrition and manage weight.
- Attended week long 8 hour per day “Intensive Therapy. Retreat” $5,000 not covered by insurance.
- Purchased several self -help books on finding happiness, learning mindfulness (DBT), and memoirs, to name a few.
- Started meditating and breathing exercises.
- Attended two weeks of 3 hour a day group therapy.
- Attended classes at the Mental Health Association.
- Attended weekly support group meetings at The Women’s Resource Center.
- Attended two different 6-8 week Bible studies.
- Cultivated new friendships.
- Received three Electro Convulsive Therapy Treatments. (ECT)
- Consulted with a psychiatrist about trying TMS treatments.
- Spent one night in a mental hospital.
- Began working with a writing coach to chronicle my memoirs.
- Started a blog.
- Applied for SSA Disability Payments.
- Retired from my career.
- Have scheduled a full psychiatric assessment/evaluation/second opinion at Duke University Medical Center at the suggestion of my current long-time psychiatrist. Coming up soon.
So here’s how these interesting, difficult, sometimes stupid, pathetic attempts have worked out so far.
I flew to Florida for a month long retreat at a Women’s Mood Disorders Retreat Center program. It was going to cost $10,000 out of pocket and insurance would cover the remainder. Upon arriving in Florida I was immediately side-tracked by the Retreat Center’s medical team and sent directly to a rehab center for observation as I weaned off of Clonapin and Adderal. No one told me about this mandate and I was completely blindsided. I spent 3 days at the rehab, mostly sleeping, and had no problems withdrawing so I was then released to the Retreat Center. Upon my arrival there, I was doing all the intake paperwork while a technician searched my belongings for anything inappropriate. Inappropriate for what? This was a retreat center, not a rehab, correct? I’d made very sure of that during the decision process of taking this major step of going far away, leaving my family for an entire month, spending boatloads of money, and with no guarantee of a successful outcome. Purely blind faith and desperation. While the technician was doing his thing of searching my private property, the intake coordinator was telling me about the various rules of the center. So still denying that it was a rehab center, the technician began removing various items from my luggage such as nail polish, electronic devices, etc. I’m liking this whole vibe less and less, especially after already being ambushed at the airport to dry out from the two medications that were disallowed, having never been told about this protocol. The final straw was they confiscated my MAKEUP REMOVER WIPES BECAUSE THEY CONTAINED ALCOHOL. Seriously? Really? So this is apparently a prison I realize. I was already aware of the fact that I would only be able to contact my family thrice weekly for 15 minutes which I didn’t like but I did agree to it. But after 3 unnecessary days in rehab, I realized that it would be extremely counterproductive to my mental health to be cut off from my family and once the makeup wipes fiasco occurred, I was done. It took me over an hour of arguing with all manner of professionals including the Director himself who told me that he was waiting on a return call from my emergency contact (Alan of course) who he’d been trying to reach. Emergency? When and how in the hell did this become an emergency? Again, Seriously? Really? Bottom line, I was never admitted to the facility, paid them no money and Ubered my ass out of there to a hotel. I flew home the next day and it was honestly one of the most surreal-and very discouraging and disappointing- experiences of my life. I will never forget it. It felt like an out of body experience and like I literally lost five days of my life. Very sad, totally nonproductive and frankly a bit damaging due to the shattered hopes of such a drastic step I was willing to take together better. But I tried.
Next on the list was trying the latest, greatest antidepressant, Trintellix, which my doctor generously gave me free samples, and it seemed like it might have the potential to work, but it’s was not even an option once I learned that it was going to be $900/month after insurance. God how I loathe the entire pharma and medical community as a whole for obvious reasons. Incidentally, I’m trying Trintellix again right now, even as I write this because the price has decreased and I have new insurance. However, the jury’s still out and I’m not thinking that Trintellix is going to be the answer. But I’m still trying.
I realized that I simply had to incorporate exercise into my life even though I detest every form of it with my entire being. I joined the YMCA so I could swim and do yoga, each of which were remotely tolerable. Over the course of a year of paying monthly dues, I went to the Y exactly 4 times. Three for swimming and once for yoga. This failed experiment should come as no surprise to anyone. However, I did find a yoga teacher who agreed to come to my home weekly for private lessons. A lovely young man, extremely kind and patient and very good at his job. I was happy to pay him the rate he asked for. Oddly, though, my dear yoga teacher dumped me four days ago via text, saying he felt he’d done all he could do for me, I’d come a long way in his opinion, and I should continue yoga at the Y, thank you very much for the opportunity. Bullshit. To be fair, our schedule had been erratic for the last couple months as we’d both had to cancel lessons for various yet valid reasons and his break-up text came right after I’d texted him that I’d need to skip next week because I was going to be helping a friend that entire day. But our lessons had always been fluid and flexible so I now must lump him into the ever-growing number of people who I’ve “run off” over the past 5-6 years. And it’s really upset me at a time when people I care about are dropping like flies and not telling me why, leading to a great loss of confidence in myself, an obsessive desperation to know WHY, and a tremendous amount of loneliness. Just for the fun of it, I will include here the list of people who I was formerly very close with who no longer want to be a part of my life: Bess; Liza; Gayna; She-She; Kathy; Tracy; Brian; Nicole; Katie; Lisa H; Lisa F; and then there’s also a list of people who are still in my life but have hurt me deeply and I’m not too excited about trying to maintain a sustaining relationship with (forgiveness is not my strong point these days), Toby; Tabitha; Nathan; Dad; Mom; (essentially my whole family). And generally, the people I really love and care about simply do not have time for me although I take no offense, I just miss them very much: Darlene; Lynn; Alana; Heath; Gwyneth; Michelle; Lisa T.; Lucile. So basically I have no one really except Alan, Rosa, out of town friends Wendy; Melanie; Valerie; Carole, Debbie; Renata; Chris; George; Nancy. And I’m lucky to have a few peripheral friends for the occasional lunch date, but nothing more meaningful than that. But I tried.
But I digress.
I decided to try a new therapist who is with a very progressive practice and I really felt like a new and different perspective might me helpful. This young woman was very professional, a bit young, didn’t come across as very invested, and after 6 or so sessions, I realized that she just didn’t really get who and what she was dealing with when she took me on as a client. She was out of her league with the heavy burden of the likes of Amy Clapp. One positive thing that came out of this effort, however, was that she did a very intensive psychological assessment of me and was able to definitively and officially diagnose or classify me as MDD, PTSD, and Panic/Anxiety disorder which I am convinced was very instrumental in getting myself qualified for Social Security Disability benefits (along with the hell-ish ECT treatments which I’ll refer to later in this missive). And I did try.
My psychiatrist was at her wit’s end with medication suggestions and wavered back and forth as to whether I could be qualified as some level of bi-polar. She desperately insisted that I try Symbyax, which I refer to as the medication of last resort due to its brutal and completely unavoidable side effect of significant weight gain. Apparently, in her historical notes of my treatment I had indeed tried Symbyax in the past and experienced success but apparently stopped taking it because of the weight issue. So I finally agreed to try it again, even as I had just spent eight months on the Nutrisystem Diet with great and satisfying success. I convinced myself that I could control the medication’s side effects. Of course it all went straight to hell because over maybe 2-3 months, I gained 25 lbs. and the damn medicine did not work at all. So now I’m doubly depressed because I’m too fat to fit into my current wardrobe, I wasted 8 months losing weight previously, and I’d made zero progress in managing my illness. I’m still just so incredibly demoralized by this epic failure and cannot believe this has happened. Goddamnit. So, starting at square one with losing weight, and new medication. A year of my life wasted in my quest for wellness. But goddamnit, against every voice in my head telling me no, I tried.
The Nutrisystem Diet is the best program I’ve ever tried, and it absolutely works if you do it properly. And even more important to me is the excellent nutritional value it provides and I’m sure that must have some kind of positive effect. No complaints or disappointment in that decision, I’m happy to say I tried it and it worked.
In mid-November of this desperate year of my life, I was doing some research on local residential treatment centers. After the Florida fiasco, I was ready to try again to find the appropriate program for me. Much to my delight, there is an organization based out of Massachusetts that had a single therapist satellite office in Greensboro. The program is called The Trauma Institute Therapy Intensive Retreat Center (www.therapyretreat.org) and its premise is that the patient is thoroughly assessed and vetted for their personal need of treatment and begins the program with an 8 hour day, one on one, with a selected therapist, and the daily treatments are consecutive, 8 hours a day, for an undetermined length of time until which time the therapist and the patient agree that the work is done. It could be two days, it could be two weeks. It all depends on the needs of the patient. I attended for four and one half days, and Intensive Therapy it was indeed. My hope, my goal, was to purge all the trauma and continuous torture in my brain that I am convinced is literally driving me insane. It was a very positive experience. Quite self-indulgent, having someone’s rapt attention on you and only you all day long. But alas, it wasn’t a cure-all, even though I came away with a great sense of weight off my shoulders, and new coping tools that I’ve tried, but failed, to incorporate into my life, and of course an open invitation to come back anytime for any level of treatment- one hour session to another intensive daily session. So I tried, and experienced some level of success. However, this innovative program, with proven success, is not covered by insurance and the attempts of convincing the insurance representatives, which included talking to numerous departments within the insurance company, both by the therapist and myself, repeating the same information over and over and awaiting a final decision, was a bureaucratic nightmare, making it a further insult to those suffering from mental health issues. The final decision was decidedly, emphatically, senselessly a resounding no, thereby causing a $5,000 fee out of pocket and not applicable towards my insurance deductible.
Over the course of these many months, I have purchased a number of books that I thought might be helpful including, Spontaneous Happiness (Andrew Weil, MD); DBT Skills Workbook (McKay, Wood, Brantly); Hardwired Happiness (Rick Hanson, PhD.); Joy On Demand (Chade-Ming Tang); Choosing Happy & accompanying workbook My Happy Journal (Jen Frier); You Can Be HAPPY No Matter What (Richard Carlson, PhD.); The Body Keeps The Score (Bessel Van Der Kolk, M.D.; Mindfulness & Character Strengths-A Practical Guide To Flourishing (Ryan M. Niemiec); Happiness Comes From Within-How To Lift Yourself Up When Life Gets You Down (Amaria Luce); The Life-Changing Magic Of Not Giving A Fuck (Sarah Knight); How Lovely The Ruins (Various Authors); and, if you read nothing else, Darkness Visible – A Memoir Of Madness (William Styron), a brilliant book that I refer to all the time and you’ll note that there is a section of this blog devoted to a number of references from this book. Meanwhile, I’ve not completed most of these books but I’m not going to give up on them; I want to finish all of them because I made the investment and commitment to do so. They are just so repetitive, unrealistic, boring….I’m not a fan of reading non-fiction. I’d much rather be thoroughly engrossed in a great novel of my choosing. I’ve also subscribed to several apps that aim to serve the afflicted souls like myself, including Headspace (which seems to be known as the be-all end-all of these types of apps accordingly to several sources); Shine; Happify; Anxiety Relief: Relieve Depression; What’s Up; Virtual Hope Box; and of course the various Bible apps that have special areas such as My Daily Bible, which offers specific verses associated with a word that you type in a search box. I actually like all of these apps and most of them are free, but I’ve overwhelmed myself with too many apps and just can’t cope with the time and energy to weed them out. None of them have been life-changing obviously. I’ve watched/listened to a number of YouTube videos on every type of breathing and meditation method known to mankind. Again, all interesting and not a waste of time, but still, here I am and I’m just getting worse. But I’m still trying.
After one of my hospital stays, I think there have been 3 official admittances, two voluntary and one non-voluntary, and then the aborted attempt which I will discuss further down, anyway, after the completion of one of my stints, I attended a two week, 3 hour a day, daily group therapy session that was recommended, practically mandated. It was the most helpful two weeks of anything else I’ve tried and I wish so much that I could go every day for as long as I wanted but the program is not designed that way. However, I’ve tried to find similar type support groups and have not been able to replicate that format. I attended a few classes at the Mental Health Association but, again, nothing was penetrating and addressing my specific needs. I also attended a weekly support group at the Women’s Resource Center for 6 weeks or so, but it just wasn’t the right thing for me. But I tried.
I attended an 8 week Bible Study at my church and loved it! These are the types of things I’ve always wanted to do but could not because of work and family obligations. And the irony does not escape me that now that I have the time available, I don’t have the mental health capacity to enjoy any of it. This Bible Study ended and has not scheduled another study as of yet. I also did a video online Bible Study which included 6-8 women from all over the country, and of all ages and backgrounds, and enjoyed that immensely as well but it was a six week course and won’t resume until the fall.
Incidentally, I’ve truly made an effort to cultivate new friendships with the people I’ve met in these various group activities and I had high hopes for one woman from group therapy and we did stay in touch and get together a few times but as is my normal M.O., I’ve run her off, lost her desire to be a presence in my life, again, for unknown reasons, similar to what happened with my yoga instructor. I’m apparently toxic. My never-helpful mother says I’m too needy. Ummmm, maybe that’s because I was abandoned so much during my childhood, spent 13 years alone and completely independent and generally estranged from my family, and now, after so much damage to my soul, I need people. I don’t know. I simply do not know. I’m not a mind reader so I don’t know why I’ve suffered so much loss and abandonment. But I do know that normal life events life retirement and empty nests have been particularly, exquisitely painful for me because to me, it’s just more abandonment. So there’s that. I am one fucked up soul for sure. Nobody denies that. But I keep trying.
I researched, consulted my psychiatrist and made the decision to try ECT, Electro Convulsive Therapy, (which by the way has come a long way from “One Flew Over The Cuckoos Nest) and it was just a harrowing experience in every way. I don’t even know where to begin how to explain how surreal and freaky it was. To basically summarize, I of course had an extensive consultation with the ECT specialist (an MD of course), and I was scheduled for 8 treatments every other day. Alan would take me to the hospital in the morning, the nurses would do all my vitals, hook up the IV for the anesthesia and set me up on a gurney until it was time to go into the operating room. Each morning, there were about 8 patients scheduled back to back and what I remember so distinctly is that once we were prepared by the nurses and just put in waiting mode, it was literally like an assembly line of patients being rolled into the OR, one at a time for a total of maybe 10 minutes. Upon arrival to the OR, the anesthesiologist would say 2-3 words and then put on the mask. Three to five minutes later, the deed had been done, whatever the fuck it was, and I was awakened and rolled back out into the same place I started for a brief time of recovery, then I would walk out of there with Alan and go home. And do nothing because of course I never scheduled anything on those days, so I just hung out at home, reading, waiting for Gwyneth to get home from school- just whatever. I did not experience any of the horrifyingly possible side effects like memory loss, confusion, etc. but I’m telling you right now that I was not right. I was not myself. I was completely not present as my true self. I really don’t know how to explain it but I knew after 3 treatments that this was dead wrong for me on every level. So I stopped. But I tried. God help me, I tried.
Following the epic fail of the ECT treatments, I consulted a TMS (Transcranial Magnetic Stimulation) specialist. This treatment is essentially using magnetic impulses to your brain to stimulate nerve cells thought to control mood. It’s apparently a very simple, quick, non-invasive treatment with no side effects and is covered by insurance. Generally, you go five days a week for 4-6 weeks, which is indeed a long time commitment with no guarantees. And it’s possible that follow-up treatments may be necessary. Ultimately the doctor decided that I was not a good candidate mainly because I’d had no success with ECT even though they are not all the same thing. It’s also not appropriate treatment for bipolar patients and all through this years long process of treating my depression there has been the occasional thought that I may be bipolar; however, none of the medications for bipolar have been effective. For the record, I’m officially diagnosed with MDD. But I did consider trying the TMS.
One late night I was having a particularly bad episode of depression and I became belligerent and irrational which is unusual for me. I agreed to go to the hospital, called ahead to confirm they had a bed available (they did) and Alan drove me to the facility and stayed with me during the miserably long and tedious assessment (it was well into the middle of the night) and the doctor determined that I was to be admitted. And then I was informed that they had no beds. Oh, the incompetence! I was absolutely livid and demanded to go home. The doctor would not allow me to leave and instead I was transported to the main hospital which had a psychiatric ward. Upon arrival, again, hours into the middle of the night, I discovered that I was going to have to repeat the entire assessment portion before being given a bed. I’d sent Alan home by then, but called him to come back immediately all the while enduring the threats of the hospital authorities that I had to stay or they would be forced to call the police to detain me. In other words, this had turned into an involuntary commitment to the hospital. In a farcical episode of a race as to who would arrive first, Alan or the police, I sat outside, alone, in the middle of the night and waited. And Alan arrived and we raced home like fugitives, which is apparently exactly what I had now become, because a couple hours later, I kid you not, the sheriff knocked on our door and forcibly took me out of my home. Close to morning, but not quite, so still in the dark of night, I was transported to yet another facility for emergency situations encountered by law enforcement, went through, yes, another assessment, finally got a bed and passed right out until around lunchtime. Alan was unavailable, unreachable, but by the time I was reviewed by the on duty psychiatrist she immediately discharged me and by God, survivor that I am, I called a fucking Uber and went home. This is a true story, every word. I can’t really say I tried in this calamitous incident. The entire episode was absurd and idiotic. I own my part in it, but it wasn’t all on me.
I decided that maybe if I started writing it all down, this miserable life story that was mine alone, the constant brain chatter that tortures me daily would be transferred from brain to paper and set me free. I’d always been apprehensive about this task because I thought it would be too painful. Cause more damage. It was and it did. I’d hired a writing coach to help me with the mechanics of memoir writing, the outline, the structure, etc. and so I wrote the outline which we had decided to include birth to age 20; essentially all the terrible, formative years of my childhood, up to and including a disastrous but blessedly brief marriage to a horrible sadistic person, after which I put all of that behind me and began my new life in my 20’s as a single, career girl with a lively and enthusiastic social life as well as the requisite heartache and agony that goes along with that lifestyle and of course made worse by my undiagnosed and untreated depression. The outline ended at age 15. It was too difficult and I could not write another word. I wasn’t giving up, but I sent what I had to my coach and she presented me with very helpful critiquing as well as encouragement and an understanding comment about why I hadn’t gone beyond age 15. We met in person, for a coaching session and she is so delightful, an accomplished author amongst other successes, and although I haven’t done anymore work on the memoir yet, I do intend to keep trying. Which brings me to….
I started a blog. I have a lot to say- no one disagrees with that. For now, this seems to be the outlet that’s working for me. It’s fun, and therapeutic and I’m very committed to it, even though I have no idea as to how to get followers to read it. I’m working on that. I’m really trying hard with this project.
A had a friend who was diagnosed with bipolar and had to quit working, ending her career prematurely. She applied for social security disability benefits and was approved, based on her debilitating mental illness. She recommended that I apply as well, and at the time I was not working, having quit my last job and failed at several other meaningless jobs after my official career, and comfortable income, ended upon the illness and subsequent retirement of my employer. I always knew that day would come but my mental health had deteriorated and I was not able to do the quality work I’d done my entire career and I certainly wasn’t ever going to make any serious money again. And the failures contributed to my deterioration. It truly was a vicious cycle. I was done. It was over. And we have three children to send to college. We always had a plan; but we didn’t know that virtually nothing ever goes as planned. Like my illness. Like the stock market crash of 2008. Like the ridiculous amount of income taxes we pay due to self-employment work. Like the out of control medical insurance costs. Like the medical bills for mental health treatment not fully or properly covered by insurance. So I through my hands up in the air, with absolutely no hope at all, and applied, online, for disability. And of course I was denied. But having gone through the application process, it was clear to me that I am disabled by this crippling disease. And social security disability is my own money that the IRS has so generously mandated that I turn over to them for safekeeping until I’m too old to work, or, in this case, too sick to work. I hired a lawyer to appeal my claim and she was very clear that the government does not like to approve disability for mental health illness. It’s just not done. And once denied on that appeal I would have one final chance to get in line behind millions of people to go before a judge to appeal my case in that venue, with my lawyer present, a process that takes years. Yes, I said years. But…. But….. I received a phone call one day from a glum sounding monotone voiced man who I could vividly picture sitting in a cubicle with his mandated uniform of a short-sleeved buttoned-up shirt, ragged tie, average slacks, shoes, a couple dozen pens staining his shirt pocket, making phone calls all damn day long, every single day, monotonously, and this decidedly unexcitable man told me that I’d been approved for benefits………he went on with his canned speech of what I would get, when I would get it, etc. I wasn’t listening because I was sobbing. And all I can say is that I would give every penny back if I could be released from the living hell that I am in.
So I tried almost everything this past year and few months. A couple successes, mostly pitiful failures. I’m scheduled to see a specialist at Duke University Hospital for a full psychiatric assessment but I don’t have any reason to think that something will come of that. I am continuing to deteriorate, I’ve isolated myself, I’m actually not myself. I’m not who I used to be. My husband and children love me, but they can’t take this forever, anymore than I can. My future is completely unknown. But I’m still trying.
May 28, 2018