(Trigger Warning: This post covers a lot of things that I think could be potentially triggering, though none of them graphically. I can’t really delineate anything here, because there is nothing especially specific to warn you of. I’m not entirely sure this is even necessary. But I will err on the side of caution.)
We don’t ever talk about it, we don’t ever even want to think about it, but lately I have had to spend a lot of time and energy focused on a terrible reality, and I feel it needs to be discussed. In this wonderful online community that exists as a support network for those who deal with severe trauma and mental illness, where nothing is judged as taboo, where everything can be talked about, one thing never is. It is the ultimate boogeyman.
The idea of permanent non-recovery.
I don’t mean something so stark as depression that ultimately leads a person to suicide. Nor do I make reference to individuals who are “non-compliant,” who consequently cannot effectively utilize medication, therapy, treatment, etc. to improve their psychiatric and psychological states.
What I am talking about is every bit as heartbreaking as suicide, and in the particular instance I have been dealing with does involve something that some would call periods, or perhaps episodes, of non-compliance. But I will tell you, lovelies, they would be completely incorrect to make that assessment.
I have a friend, I will call her Ophelia, both to provide complete and total anonymity, and because it seems the only name befitting someone so beautiful and undeniably tragic. I have known Ophelia for about two decades, and while we drifted from time to time, we have always had an intimate, honest, preternatural bond.
Ophelia has struggled with many things in her life. She is diagnosed with Bipolar Disorder (type I), Borderline Personality Disorder, and Post-Traumatic Stress Disorder. Ophelia is an alcoholic in recovery, an addict in recovery, and was hospitalized numerous times in her teenage and young adult life for anorexia and bulimia. I also witnessed her go through a very serious bout of postpartum psychosis.
She has attempted suicide at least a half-dozen times. These attempts were all serious enough to warrant 911 calls, ambulance rides, and hospitalizations, but knowing her as I do, I would say that they would be most rightly classified as parasuicidal. Death is not her intention, rather she becomes so distraught that she feels the only way she can communicate the full depth of her torment and truly express how desperately she wants help to become well is to take the ultimate gamble. As I said, this is my assessment, she has never told me as much. I don’t believe for a second that she even is consciously thinking about anything but ending her life. But I know that my evaluation is correct.
So Ophelia has a deck that is just about as stacked against her as it could possibly be. Oh, I forgot to mention that she also has a number of somatic conditions that would make her life incredibly difficult even in the absence of mental illnesses. Combined with them, it is truly a wonder that she is still alive today.
That is Ophelia the patient. Ophelia the woman is vibrant, loving, intelligent, educated, compassionate, loyal, articulate, beautiful, and wickedly funny. She has a family, a husband and small children, she had for many years a very successful career, she advocates for the things that afflict her. She was raised in a relatively stable and loving home, her parents try to be supportive of their daughter, her husband loves her and is learning – or trying his level best – what he can do to help her as much as anyone is able. Her little ones absolutely adore her, and they should, because in spite of that stacked deck, she is an amazing mother, absolutely devoted and determined that her kids will not be negatively impacted by all of the things she deals with.
She takes her medications compliantly, for the most part, and she has been through years of intensive therapies, both inpatient and outpatient, to try to get to a place where she can find her footing and live her life. And for a while, she could.
But not within the past few years.
Ophelia started to decline about two years ago. At the time it was easy enough to explain. She was pregnant with her second child, she was over-extended in her work, she had a ton of other life stressors that were triggering her. And as these last two years passed, there was always some way to rationalize why she couldn’t remain stable. This girl has had an enormous number of very serious life events, one right after another, sometimes concurrent or overlapping, one into another. There has never been a chance for her to truly stabilize.
So I told myself, for a long time, and up until the end of last year it may have been true. But the past six months or so, things have been very different for Ophelia, and I have been forced to reevaluate her condition and face some realities that are. . . heartbreaking, painful, distressing. . . Those words don’t even come close.
She has reached a place of very serious cognitive decline. She is still so breathtakingly intelligent, but she can’t apply it, can’t use it for anything but ill, because her ability to research and understand has turned on her. She forms obsessions, about herself, about others, and about the world at large. She is often quite confused about reality, and will leave me messages that make little or no sense. She becomes fully delusional. Her periods of depression and mania have become drastically more intense and frequent. She has episodes of abuse of prescription and non-prescription drugs (I feel I must stress to you that she still manages somehow never to put her children at risk).
Her periods of stability have become fewer, shorter, and much more tenuous. And even though she sees her doctors regularly and goes to support groups and therapy, I really don’t know how useful all of that could possibly be. Because the most frightening part, to me, is that she has no concept whatsoever of how profoundly ill and diminished she is. I honestly don’t think anyone does, other than me. What I see is a product of all of our years, the complete transparency of our relationship, and my own personal knowledge of living with mental illness.
I honestly do not believe that Ophelia will ever recover. And that was an extremely difficult place for me to come to. I don’t know what her path will be. I am terrified that she may eventually get one of her parasuicidal attempts wrong, that is to say succeed in taking her own life without meaning to. I have already detached myself to some extent, because I know I cannot save her, and it was destroying me to deal with her unrelenting outcries for help. She may not understand the depth of her madness, but somewhere inside she feels herself drowning, and she is grabbing on to the most stable and constant person in her life. And I will stay with her forever, come hell or high water. I have drawn my own lines, because I have come to understand that I can only do so much to help her, but I will never let her go, no matter what is to come.
© Ruby Tuesday and A Canvas Of The Minds 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ruby Tuesday and A Canvas Of The Minds with appropriate and specific direction to the original content.
Reblogged this on I Was Just Thinking. . . and commented:
A Canvas post that I wrote. It’s worth reading. Trust me.
Dearest Ruby, what a heartbreaking story. Devastating. There is nothing worse than seeing someone you love deteriorating before your eyes, and knowing that despite there best efforts of everyone involved, the condition is in a downward spiral. My heart goes out to Ophelia, her husband, her children, the rest of her family, and especially you, dear, because see how much you love her and how devastating it must be to be unable to help her. Stepping back is the only healthy choice, I’m afraid. You will continue to love her, yes; and you must take care of Ruby, make sure she is safe and protected.
Sending love and healing vibes,
Laura, you are so, so sweet. This was a really hard post for me to put together, and not even because of all of the emotional aspects involved (though of course there are many). It was just very, very important to me that I tell her story right. Kind of to honor her, you know?
I spent a lot of the past few years trying to run around and paste together shattered pieces and put Band-Aids on gaping wounds (which we all know I was not in any place to be doing). She never wants anyone in that role, I think one of the hardest things for her is when she realizes just how much she has been leaning on people, even when they love her and are willing. And she has, up until recently, done a superlative job not just of being cognizant of my own emotional and psychological needs, but actively being a support to me.
So yes, I made a decision of where to draw my boundaries, not just for my sake, but for hers as well. If she is to improve (and of course, despite what I see, I will always hold out hope), she needs the help of dedicated professionals who can teach her how to best manage her issues. I can be a friend, and I can be an insight and support, but I was definitely not doing her any good by being her 24/7 crisis counselor.
And actually, it has been easier now that I have come to the hard realizations, one of which was that I had to make sure I was putting myself first. We are none of us any good to others when we are not taking the best care of ourselves.
Lots of love back to you ~
Ruby, thank you so much for sharing.. it makes me silent.. take care.
edith, I, in turn, thank you so much for your comment. Sometimes the most poignant responses come from people who just needed to let you know they appreciated your story. Take care of yourself, too.
Wow, I felt that you were describing me, for the most part.
I’ve been doing extremely (and shockingly) well since I had major abdominal surgery this part January. I don’t know why and I’m terrified it won’t last but I’ll take it for as long as it lasts.
Hope Ophelia can get that kind of a break too
Thank you, SSG, I’m really glad that you are doing so well, especially because it sounds like it was against the odds. I’m also so happy that you are embracing it. I have learned that so much of the time, it is better not to dwell on why the good is happening, but just to be grateful for it, however long we have it (much as you said).
Take good care of yourself, and I and all the people who love Ophelia will do everything we can to see that she has every chance she can get.
Thank you for sharing this Ruby, it’s beautiful & heartbreaking and it’s helped me make some sense of a difficult area of my life. Much love and credit to you for speaking so bravely & honestly about your friend, I wish I could say more but I think you said it all sweet girl, you’re amazing xx
P.s I forgot to say how sorry I am for both you and Orphelia, much love xx
voiceofautumn, I’m very grateful if this piece could be helpful to you. You’re so kind to say such wonderful things about me. I appreciate your love and sympathy greatly, and Ophelia will feel it, too, because all of this support and kindness I will pass along to her, though she won’t know from whence it originated.
Love to you ~
You’re a wonderful person from what I’ve read Ruby, I feel a kindred spirit, I think sometimes all we can do is send our love out to the world in the hope it has some force or effect…I hope you’re doing ok lovely xx
You are wonderful, too, and I definitely feel that kinship. You are right about the love: send as much as you can out there, it makes an enormous difference, even if we aren’t the ones who see first hand what it does. For example, having you (and others like you) in my life keeps me strong, happy, loving, and driven to pass my love and strength and support along. Thank you for that.
Thank you too 🙂 xx
Thank you so much for honoring Ophelia with this post and for sharing it with us. I’m not sure what to say, but I wish you as much peace with your necessary decision to draw boundaries as possible.
Tiffany, thank you so much. I think that you said exactly the right thing. I’ll try to find my peace, and I wish you peace as well.
You are welcome, and thank you 🙂
Thanks for sharing this. I certainly know that fear for a friend, and I guess people thought that way about me in the past. What I like most is your last statement, that you will never let her go. I love that, although I recognise that is a hard commitment to make to a friend.
Cate, I’m so sorry that you ever got to a place where people feared for you, but you also give me some hope. As for not letting go, well as I have stated, I just can’t even conceptualize it. I understand we all have to make choices to protect our own mental health, and I’m not passing judgments on others, but for me there is no other way.
I am heartbroken after reading this – for you and for her – but also because I have someone in my life who I have needed to come to terms with that this is possibly her reality too. The fact that you are still there for her when things are obviously very, very hard, and that you intend on being there for her in the future just shows what a truly beautiful and compassionate person you are. Take care of yourself xo
Tulip, I am so very, very sorry to know that you may be facing a situation like this with someone whom you care about. I hope that it doesn’t ever come to this for you, but know that I am always here to talk if you feel like you need to speak privately to someone about this. I don’t know, you may have people in your life who are going through it with you, but my email is firstname.lastname@example.org.
As far as my commitment to being in her life now and for the future, well I just can’t imagine it any other way. As I said, yes, I have drawn boundaries, but having been profoundly ill myself, I cannot begin to think of walking away. You take care as well.
thank you for sharing about your struggles and, of course, Ophelia’s. I can understand much of where you are both coming from – having been on both sides of this myself along the way. Each person’s story is different though, so I refrain from suggesting I know what you are going through. I don’t. I really do hope and pray you both come out of this well one day. Soon.
Ken, you are truly wonderful. I’m sorry that you too have been in this type of situation, and I really appreciate how well you comprehend the uniqueness of each individual case. Knowing that we have your prayers and hopes helps tremendously. Thank you.
This is so sad. I wonder how many of us with mental illnesses end up declining this way; that’s one of the more discouraging things about a bipolar diagnosis – it’s just expected to get worse over time. It’s one of my worst fears to end up like Ophelia.
Mine too. I just had an interview with a social worker who is on my Social Security Disability case, and I spent the weeks leading up to the appointment in fear of what it would be like. He turned out to be this very nice man who, with hardly any sleight of hand, drew forth from me the true horrors that dwell just below my fairly polished finish. It was terrifying to see the map of how dysfunctional I truly am laid out in front of me. He ended the interview by telling me that my disease is sufficiently severe that he is quite sure (no guarantees, but sure) that the judge will rule in my favor and I’ll get my SSD. I walked out wondering just how Ophelia-ish I am going to get….and now? I shudder.
DeeDee, Laura, I actually wouldn’t worry too much on this front (I don’t). One of the first questions I tackled when faced with my own diagnosis was: How bad is it ultimately going to get? Or I guess, more rightly, how bad am I ultimately going to get? All the research I did says the same thing. Bipolar is usually not a degenerative disease when help is sought and treatment received. Even my current psychiatrist, who has been treating this illness longer than I have been alive (by a good margin), and whose opinion I very much respect, agrees. With treatment and lifestyle adaptations, any kind of worsening or cognitive decline is rare.
I think Ophelia’s condition is a combination of years spent battering her body and brain with very serious substance abuse, as well as organic physiological abnormalities. She is barely 30, and already the deterioration is very evident. I know this is something which is a big concern to us all, but I think that for most of us, it’s baseless. It’s the monster under the bed, something that frightens us and seems so real, but if you lift the bed skirt and shine a light in, there is nothing there at all.
Ruby, your last line here delighted me so much thati want to share a poem by the late Shel Silverstein:
Late last night
I’d a terrible fight
With a Wild Gazite
With eyes of white
And he gave me a fright
When he gave me a bite
But I fixed him all right–
I turned on the light!
Laura, I love that poem! (And I love Shel Siverstein!)
OK, that’s encouraging to hear! None of my docs have ever bothered to talk about long-term issues with me. At this point I go in, rattle off symptoms, talk about meds, and I guess they assume I know what I’m dealing with. And I do, for the most part. But it would be really awesome to have someone who was truly an expert on bipolar to do a little course on “what to expect when you have a bipolar dx.” Even if you read a ton about it, there are still surprises around many corners.
I did in fact go there with my neuropsychiatrist last fall when I noticed some nagging cognitive issues and went for cognitive testing. Sure enough, there was a very delineated focal processing deficit. I promptly freaked out and made a bee line for his office, hysterical that might end up like Ophelia. He calmed me down, told me that the hole in my cognition was due to bipolar, yes, but that it would neither get worse nor generalize, and that the natural history of my disease is pretty much what it looks like today, no better, no worse. Being who and what I am, after I calmed down I plumbed the depths of Medline and found tens of articles backing up just what he’d said.
I did have a fairly significant exacerbation in the depression department during menopause, which I suppose is to be expected. Postmenopause is relatively stable, which is delightful. I do take estrogen, which helps immensely.
I think it would be a marvellous thing to survey people with bipolar in all demographic groups, to get a realistic picture longitudinally.
btw, I was just accepted for life insurance by a AAA+ rated company. If they’re not worried about my longevity, I think I won’t be either.
You are such an amazing person, perfectly wise and always such an amazing force in my life. I value your friendship and I am sure Ophelia does to. You are right to draw the boundaries where you can as difficult as it may be at times. Having people like you in my life despite your own struggles makes me incredibly thankful to call you my friend.
I could say pretty much the same about you. It means so much to me, knowing I can turn to you and find someone who not only understands, but who can give me an honest and rational answer as it applies to my life. And, most importantly, a friend who will always be there.
Love to you ~