Can One Become Resilient To the Ongoing Threat of Trauma

I once supervised a young woman who grew up in Jordan, here in the States for her graduate school training to become a psychologist. At the time, some of the cases we discussed were trauma-oriented, thus we often spoke about coping with trauma. This was also around 9/11 and no one here was untouched by that traumatic day. I recall her telling me that, growing up in Jordan, she was used to the sounds of explosions because it happened so regularly. It was almost as if it didn't faze her anymore.

I came across this article on CNN's website about Israeli psychologists finding their way to work with Parkland, Florida's Marjory Stoneman Douglas High School students, equipping them with coping skills that have been found to be useful in many Israeli areas, given constant awareness that a bomb might hit...and how to manage living day to day, moving forward, doing regular things without that fear getting in the way.

A Survivor's Story

This is an exceptionally brave man. Not everyone who's been sexually abused talks about it as openly as he has here. Not everyone who's been sexually abused as a child even tells the "non-abusive" parent because of fear of imagined or threatened repercussions, but he did tell his mother...and she kept him in the lion's den of rape. It is often said that it is NOT the abusive adult committing the violating behavior that is most to blame, but it is the absent parent who bears the most fault - in this case, even if the author hadn't told her, the theory is, she MUST have known - she is his mother after all, she lives in the same home. Mother's know. That's what is said. However, in this case, she was told by her son this was happening, kicked her husband out, allowed him back in and when he physically abused her in earshot of this paper's author, she didn't kick him out again. Childhood rape leaves indelible footprints on its victims. In this man's case, it seems like he kept trying to find his way through...that takes hope and a desire for self-preservation. Not always easy to access when you're led to believe that being raped is part of the normal fabric of your life. Please read this.

Repeat Offenders

 was asked to speak about domestic violence yesterday for this piece on Inside Edition. While most of the interview was cut due to time restraints, I spoke about the seeds of domestic violence for the violator, that it takes OWNING the responsibility for being abusive in order for change to happen (and Rob Porter vehemently denies all charges); how people in relationships in which there is domestic violence have enormous difficulty extricating themselves from the relationship and the reasons why. I was asked if Hope Hicks is in danger of being abused because she is dating Rob Porter - I acknowledged that she is already in an abusive relationship by working for a man who is a BULLY and abusive and thinks it's ok to grab a woman by her genitals because of who he is, a man who was accused of rape by his first wife...perhaps it's a dynamic that Ms. Hicks knows and, therefore is drawn to Mr. Porter's dynamic familiarity that puts her in a position of being vulnerable to abuse. I can't say for sure (no one can) if she will be abused by this man, but I do believe that, until Mr. Porter recognizes his behavior and acknowledges it fully for the impact it has had and the danger he presents, she is best to remove herself from the relationship while it's in its early stages...if she can and if she has sufficient support and resources to help her do so. It's so often a task of removing oneself that is impossible to do on your own.

Men are saying "Me Too."

If you ask around, most people believe that eating disorders are the domain of the female population. Whenever this "belief" arises in conversation, I counter with the argument that, while it might seem that women suffer from eating disorders more than men, I believe it's MORE about the space that is given to women to talk about their eating disorders....and the absence of that for men to surmount their own shame to address their self-destructive relationship with food and body. In the same way that people are now wondering why it seems that there are so many more people today being abused, I argue that it's not that there are MORE people being's that there is more of a forum of acceptance for discussing it and addressing it than ever before. Abuse. Eating Disorders....these and other horrors people endure, have been going on forever. Voices to speak of them seem to be more amenable to shouting these days. And everyone benefits from that phenomenon.

Why Speaking Up Continues to the Most Important Thing

Another powerful and important opinion piece. A good follow-up to what I posted last night. It is true that as women, we often expect men to read our minds without us having to speak up about what we really want, feel, need. It is true that men cannot read our minds. The problem is that nothing gets communicated clearly, misinterpretations are bound to happen and, in one's perception there was a misunderstanding and, in another there is a feeling that "my signals" should have been clearly understood. It doesn't work that way.

The Murkiness Around What Constitutes Consent

This is a very important article for both men and women to read. I think everyone reading it will recognize either themselves or someone they know from past experiences of "agreements" made that did not feel as if consent was actually being given...or that consent was actually heard. But first I have a few things to say:

Not long ago, when a colleague’s daughter was just entering her teenage years, I was told that she noticed her daughter’s friends wearing different colored beaded bracelets on their wrists, commenting about how pretty they were. Her daughter, given the open relationship that they have, told my colleague that the bracelets were not worn for aesthetic purposes, but that they were signifiers of having engaged sexually in some way or another with similarly-aged boys. Each colored bracelet represented a different “activity.” For example, pink for kissing, blue for letting a guy feel her up, green for giving a guy a blow job, etc…Understandably my colleague was horrified at hearing about this, as was I learning that this was going on in a very upper-middle class suburban area – there’s my naiveté. 

I wonder, in the context of our current climate of discussing variants of sexual abuse and harassment, how did these sexual activities get negotiated? Is there consent between pre-teens? When it’s an adult and a minor involved, there is no such thing as consent. Of course, we need to assume there was peer pressure involved. Some coolness factor? Badges of success gotten amongst the group with greater admiration derived vis-à-vis the more bracelets you got. And who bought the bracelets? The parents? Did they know what they were contributing to by purchasing a pretty trinket that served to BRAND their respective daughter? Is that implicit consent? Complicit consent? 

In college, I knew a girl whom I referred to as “peach jacket.” Yes, she has a name, but her peach leather jacket was so fabulous that it became her identifier. But she had another identifier amongst the guys….and the girls: Blow-job Queen. As I understood it at the time, and not from her words, this meant that, if she was hanging out with a guy, either he would ask or she would offer, and down she would go. I don’t know if she knew that this is what people thought of her. In all other respects, this was a young woman who seemed confident and fun, with many friends and without struggle. But I bring her up because I now wonder how she agreed to enter into such an a priori known with these guys? Was she actually consenting? She was of age, so consent, legalistically pertains. But was she consenting WITH also having DESIRE? Or because she felt she HAD to in order to, I don’t know, be popular with the boys, elicit envy from the girls because of her popularity? Was she re-enacting some earlier trauma that had not gotten respectfully and compassionately addressed? I’ll never know. 

But read this article and ask yourself these questions about why YOU might have participated on either side of this dyad once, twice…. many times. What was going on for you that, while you didn’t want to do something, you did it anyway to be liked, for example, or for many other possible reasons. Why you seductively pressured a woman into a sexual situation that, on some level, you KNEW she didn’t want, but because she didn’t outright say “no,” you negotiated your way into her pants? Not caring before, during, or afterwards that this woman might one day reflect back on that occasion and not see it as a “stupid thing I did,” but rather as an assaultive experience about which she feels shame and guilt and anger.

Why I Can't Yet Say "Me Too"

I recently opened up about my history in a certain work setting in which the environment was burdened by a sexual harassing vibe. I wrote how it affected me personally, how I saw the effects on those with whom I worked and those I heard about after I no longer worked there, I wrote of how no one said a word - well, I did say something to the perpetrator, but the conversations usually were laughed at or turned into some kind of a joke....or simply more flirty-over-the-line discourse, in which I participated. I wrote about how uncomfortable this environment was for me. I also wrote about how I benefited from this "attention," professionally, AND how it served to stir rumors about me that were wholly unflattering and untrue. 

I had the bold idea of speaking about it in a public forum - truly speaking out. Without naming names, as was the case when I originally shared my story. I thought that it was about time. And then I was thoughtfully asked if I really knew what I was doing by offering my story in a public setting? The rational side of me knew that, even if names weren't included, I work in a profession in which many people are known to each other. It wouldn't be difficult to figure out the people about whom I was discussing. And as I was deliberating whether or not to do this, I could see the look of alarm on the faces of those who were offering me the forum. I could hear their concern for me and my professional mobility should I do this. While no one used the term, I could almost hear them telling me I'd be blacklisted should I go forward and speak.

I decided not to go forward and I feel very torn about it. I feel my decision IS the very thing that keeps this deplorable behavior going on. I'm complicit in its perpetuation by being protective of my professional future, even though it's no longer affecting me. I'm sure it's still affecting other women presently. But unlike the celebrities who were brave enough to speak out about their professional compromises over the course of their respective careers, I am still building my career. These women in Hollywood seemingly are in positions where screaming "j'accuse" will not boomerang back on them any longer. I am in no such position.....yet. 

I am successful, skilled at what I do, I'm ambitious and I believe in speaking up. At the same time, my need for self-preservation is at odds with the latter point. This IS the very cycle of abuse that you hear about in situations of domestic violence, for example. The battered wife who stays (while others think she is nuts and weak) because the alternative seems more dangerous. Now, I'm not being battered or abused. I'm feeling a self-imposed silencing that, particularly because of the current political wave of "Me Too," feels abhorrently difficult to tolerate. But I will. 

Until the moment feels more right. And then I will shout. 

The Cycle of Trauma in Chicago

I'm watching live this powerful story/narrative of the cycle of trauma in Chicago, with much emphasis given to the Mental Health effects of constantly living in a place where violence has happen, is happening, and will happen again and again. Discussions with kids about PTSD symptoms with Trymaine Lee. Worth watching. Excellent discourse about trauma in understandable terms. And this obviously is not just happening in Chicago. 

Emphasis on how mental health care is inadequate, marginalized, not adequately (if at all) covered by health insurance...and how seeking mental health services continues to be a source of shame and how there is a DESPERATE need for treatment seeking to be normalized and dramatized as NECESSARY for moving forward in life, particularly in the face of chronic trauma situations.


When You're First Diagnosed: Managing the Initial "Attack"

Shock. Disbelief. Confusion. Relief at having an answer. Depression. Anxiety. Fear. Feeling betrayed by one’s body. Loss of control. Feeling unsafe. Why me? I’m sure many of you who were diagnosed with MS and are reading this, recall feeling at least one of the listed emotional experiences when you were told you had this disease. Hopefully when this diagnosis was transmitted, you had someone in the room with you to help you process what was being said, to serve as your ad hoc memory stick, so to speak, (since there was no possible way you could really hear much more than “yes, you have multiple sclerosis”), to hold your hand and tell you that everything was going to be okay...even if you felt, at the time, that your world had just fallen apart. You might not have been able to speak. You might have prepared many questions to ask the doctor, but were finding yourself unable to recall any of them at the time of your appointment. When given the opportunity by your doctor to inquire about what’s next, and what this diagnosis really meant for you—you probably were at a loss for words.

Depending on your symptom picture and your brain/spinal cord lesion activity at the time of diagnosis, your doctor likely wanted to discuss medication options with you, asking you to consider one or several of the available treatments, encouraging you to make a decision as soon as possible. The medications are meant to slow down disease progression and your physician probably wanted to help you manage your illness in the most proactive way possible. However, at the time of diagnosis, your head was likely spinning in all directions and the thought of making a decision as important as medication may have seemed impossible to you. And that’s okay.

What I want to emphasize is that it is perfectly normal and acceptable to feel overwhelmed and shut down when you have been informed you have MS. It is a life-altering piece of news...NOT A LIFE SENTENCE, but something that will take time to digest, internalize, accommodate to and incorporate into one’s life in a way that can be quite manageable and productive. In my opinion, it is important, if not vital, to give yourself some time to reflect on what has been said to you by your doctor before any next steps are determine what you actually were able to hear and attend to, versus the information that did not penetrate. With this said, once you find yourself a bit more grounded, I would suggest seeking out ways to ask or re-ask questions about MS...particularly YOUR MS, UNTIL you feel more secure in understanding what is happening in your body, what your options are for medical and self-care and what kinds of resources are available to you to facilitate this NEW experience being incorporated into your life in the least toxic way.

I often hear patients talking about how they feel "out of control" following diagnosis, how their bodies seem to be acting as independent agents and how frustrating and helpless they feel as a result. Despair and hopelessness seem to take center stage. I completely empathize with this experience, affirming the importance of feeling empowered and having a sense of agency over decisions and the path one chooses.

MS has a way of making people feel disempowered - yet giving yourself some time to work through the initial shock of being told you have MS, finding ways to ground yourself vis-à-vis asking questions, seeking information in a manageable (not overloading) way, reaching out for support from existing networks or new resources...ALL of these actions have the marvelous capacity to help one feel stronger, more engaged with one’s body and generally more empowered over decisions in ways that can make living with MS possible...and perhaps even acceptable, even if at the time of initial diagnosis that idea seemed inconceivable.

Wording What Feels, But What Feels Unwordable

Bromberg, in his seminal paper "Speak That I May See You," (1998) wrote of the intersubjective conflict between the dissociative function that has the capacity to fragment words and various self-states from emotional experiences in trauma (in particular, but also in everyday conflictual experiences) and the demand of the psychoanalytic space for a mutually accepting and understandable languaging of what haunts and often shames the patient. Referring both to Socrates and Freud, Bromberg cites the demand of the listener for the speaker to “speak, that I may see the speaker hidden in his words. Speak everything that comes to mind, and I will discover the person you wish to hide.” (Bromberg, 1998, p. 246), He beautifully elaborates about the nature of trauma and the psyche's need to extricate meaning from experience in order to not consciously function in a perpetually fragmented, or even what can be felt to be a dangerous state. Bromberg expounds more profoundly, more complexly and in more analytically contextualized language than suits the scope of this current piece of writing, but his ideas resonate and relate, nonetheless.

What therapeutic treatment can provide is a "safe" space to integrate traumatic experiences that may be felt, but which have no language, either due to the age of the person when the trauma occurs (e.g., a pre verbal child), or the advent of remarkable defenses that relocate a person, so to speak, to a preverbal or other self-state for protection...after all, isn't that what our defenses are for: to protect? So a patient can choose to speak to someone who wants to listen, to someone with an integrative function, to someone who can provide language, understanding, compassion, and validation for what had been unspeakable. This is a risky proposition for most. And vis-a-vis this speaking, clarifying, labeling, and giving meaning to what had been too terrifying or difficult to previously give meaning to, healing and integration can become possible. There are so many pieces of this process that are challenging for both speaker (patient) and listener (therapist), one of which is the patient's fear of not being understood sometimes simultaneous with the therapist's struggle with understanding. The patient ostensibly wants to be understood (I say "ostensibly" since it is more than likely that there is such anticipatory fear of not being understood and/or terror felt at taking the risk of speaking what has been unspeakable or confusing and not knowing what lies ahead) and the therapist wants to know...maybe needs to know. Needs because, how else can we help if we don't know what happened? And putting experience into words is the way we communicate in relationships; without that, we can remain in state of isolation, confusion, and feeling unknown. 

When I work with patients who have MS, I view the experience from a trauma model of care. In fact, I see being diagnosed with any chronic illness to be traumatizing, potentially in ongoing ways. One aspect of the MS experience that I hear over and over again in my practice and in my hospital work speaks strongly with this idea of wording what seems to not have words, specifically in regards to symptom experiences. Please know that I am not in any way suggesting that finding words for symptoms is part of a dissociative struggle; of course much dissociation goes on in the life of MS patients, but the scope of this discussion is more about the issue of wanting to speak and be understood (patient) and wanting to know the experience (doctor), most often resulting in the patient not feeling understood and the doctor taking for granted an understanding of the symptom specifics that often are vague, at best. As far as treatment protocol goes, in many respects, to patients, it seems to matter little for the doctor to understand entirely what the patient is contending with; often for the physician, if a patient is having an exacerbation or a pseudo-exacerbation, it frequently comes down to a decision between a steroid script or nothing at all, pain medication sometimes, and anxiolytics other times. Temporary palliatives, but not understanding. This often leaves patients feeling placated, frustrated and as if their treaters have no real idea (or sometimes even interest) in what they are going through.

Part of the difficulty, as I see and hear it, is that the physical symptoms of MS feel to not fit in any known languaged construct that is regularly used or understood...or to them, it sounds crazy. In fact, many patients, prior to finding a knowledgeable physician who could diagnose MS contended with many naive physicians who, upon hearing these "strange" symptoms would tell them "it's all in your head." It's as if the disease has a language all it's own, and many feel that you have to have it to know what it means. This often is why patients find more comfort in speaking about their MS to other MS patients than to friends or family members or even doctors...being understood without having to explain, much like the preverbal child whose mother knows the meaning of each nuanced comforting to be known, especially with a disease like MS that carries with it so many unknowns.

Another factor that many MS patients struggle with and feed their reluctance to language their experiences to those who might not understand is that many of MS’s symptoms are hidden, and unnoticeable to the casual onlooker. “But you look so good,” has become a cursed phrase for many MS patients – something they hear so often not as a compliment, but as an invalidation of what sufferings are happening beyond what the naked eye can see. They often report feeling as if they are not believed when describing what they are feeling because the evidence of their pain or “scar” is not something that is externally visible. I assure you that such repeated reactions do not inure people with MS to feel that telling someone of their symptoms is a safe and reasonable thing to do. 

These are some of the symptom experiences I've heard from patients: "it feels like I have shocks going up and down my arm," "my whole body is exhausted and I just slept 12 hours." "it feels like there's a furnace in my leg that turns on and off and I don't know when it will end," "I feel this drawing feeling in my leg," "I feel like my spine is pulling apart," "my foot just stops working," "I can't feel my vagina...I know it's there, but when I pee, I can't feel where the pee is coming from," "I didn't know I had to go to the bathroom and, before I knew it, I had gone all over myself and didn't even feel it."  I suppose all of these, written in words that are known to all of us make sense, but none were said with ease, all with hesitation and most with shame. Why shame? As with most traumas, the experience of having someone bear witness to something that feels out of our control, forced upon us, and upsetting to speak of, can feel shameful and often perceived as not being worth it to even speak of in the first place.

So is MS really unwordable, is it not welcomed to be heard or, like other traumas, does it just feel too shameful to word?

Bromberg, P. (1998). "Speak That I May See You." In Standing in the Spaces: Essays on Clinical Process, Trauma, & Dissociation. Hillsdale, NJ. The Analytic Press, pp. 241-266.


The Fallacy of the MS Vacation

Denial happens to be one of my favorite defenses. Intellectualization and rationalization also top the list, as this trio seems to facilitate a great "pretend" or ones that could be far more pleasant than what reality bears. They're probably no better than any of the others in the defensive spectrum, given that all are meant to protect, keep us from knowing, facing, accepting those things that are painful, have been painful or are anticipatorily painful.  One of the most important issues that I try to impress upon my patients (those with MS or not) is to be mindful of oneself. What do I mean by that? The notion of mindfulness has many implications. 

According to Bhante Gunaratana (in Salzberg, 1999), a Buddhist monk, mindfulness is "non-judgmental observation. It is the ability of the mind to observe without criticism." He goes further to say that, in order to fully observe something, we have to fully accept its existence. The next point is perhaps as, if not more important than the prior: "Mindfulness is impartial watchfulness. It does not take sides. It does not get hung up in what it perceives. It just perceives."  Not an easy process to achieve. And it IS a ongoing, conscious, highly important way of truly coming to know yourself...ALL of you.

Returning to the initial topic of denial, I find that, as with any trauma, loss or major stressor, descriptors that all seem to fit with getting a diagnosis of MS, it is common to experience some stage of disbelief that this is really happening to you. You might have a symptom here and there, maybe even serious, noticeable, debilitating symptoms AND your doctor may have shown you an MRI that has lesions corresponding to the symptoms you are experiencing, but it can still remain almost impossible to believe. While I find that many patients respond to their diagnosis by diving into learning everything they possibly can about their MS, just as many (more?) want to know nothing more than what their physician has told them, preferring to act as if they accept having it, but choosing to remain naive to its full meaning and impact on their lives. Many say that to think about it at all makes it worse, makes them upset, so why think about it? Others say, "it is what it is, there's no cure, so what's the point in spending time thinking about it at all? When I do, I can only imagine it will progress so badly that I will be in a wheelchair one day, which will make me a burden to everybody, and I just can't think about that." In fact, most of the MS diagnosed people I work with don't want to spend any time thinking about, talking about or knowing about having MS.

Ergo, interesting situation for treatment when a) many who see me for therapy see me at an MS Care Center, and, b) many who see me at this center have their therapy sessions in the very room in which they were either diagnosed or have their medical check-ups ABOUT their MS with their treating neurologist. At least when there, it's kinda hard to escape. it. Even on days when you feel really good. I.e., when your fatigue seems to have disappeared and you feel even spritely, when your pain and numbness is barely, if at all noticeable, when your spasticity has miraculously evolved into flexibility and elasticity...the MS is still there. Typically I hear about these days after the fact, and boy, do they sound wonderful. I am regaled of long walks taken, massive amounts of errands ran, going out partying, even dancing. And these events are described with joy and excitement and relief that it could be done, after time fearing that MS had taken away and would continue to take away the ability to be active and lively. This is usually accompanied by "for a day, I didn't have MS." Like a disease-free holiday. And my experience is that the day is truly experienced that way. Hello denial. Either active or unconscious dissociation of awareness that, despite what their respective experiential state might be conveying to them, demyelination of nerves remains part of their physiologically internal world. Mindfulness? Out the window...and seen more as an intruder and joy-kill than as an important aspect of self care. And then I ask how he/she felt the day after? Invariably, I hear some version of "I crashed. I couldn't move."And when I try to explore their respective awareness of how having over done it directly caused the crash, I usually hear little regret in response. More like "I'd do it again in a heartbeat."

At these moments, I try to bring them back to the idea of being mindful, of trying to be well acquainted with their bodies, with their MS and how they can actually take charge of some parts of their functioning via this awareness and mindfulness. I emphasize how vital it is to find ways to feel in feel empowered over their bodies ESPECIALLY when MS is so good at making its victim feel utterly disempowered. I suggest that, on feel-good days to not go full do what they want but maybe at half the speed they might have the energy for, so that they won't crash the next day (s). I know they don't like crashing and the subsequent effects it has on them and the people immediately around them. I typically get nods of agreement, but looks as if to say I'm the biggest joy-kill to them. Why can't I let them have their fun? Why must I ruin it?

What does it mean to simply know you have MS? Without judgment. Without criticism. Just letting yourself know it. Some would argue it’s impossible, since it’s rare (at least in my experience) to find someone with MS who doesn’t have some accompanying anger or sadness or fear the moment their awareness of their MS comes to mind. No, those aren’t judgments or criticisms, but these feelings without a doubt color the awareness in one direction or the other. So can looking at MS be a neutral endeavor? And if not, does it mean that it can’t be thought of as complex AND something necessary to have some constant awareness of in a way that doesn’t have to intrude on, impede or distort one’s experience of oneself? 

My intent at imploring mindfulness is not to negate the possibility of pleasure; it's to help MS patients have more opportunities and more days of feeling in charge of their bodies with a disease that does not take a vacation...even if we'd want it to do so. 

Gunaratana,B. (1999). “Mindfulness.” In S. Salzberg (Ed.) Voices of Insight.
(pp. 133-142). Boston, MA. Shambhala Publications, Inc.

The Unknown Known

We know the neurological meanings of MS. We know for some people, those that begin with a progressive form of the disease, there is an awareness at the outset that things will get worse. For others, with a relapsing-remitting course, things could get worse progressively at some point in time or symptom flare-ups could occur, echoing already-experienced symptoms or brand new ones, and these "problems" could either eventually go away entirely or abate to a point where they are always hovering and noticeable, and potentially be new matters to accommodate to, but not necessarily in a flagrantly interfering kind of way.

We know that there are disease-modifying medications that, when taken as prescribed, have some chance of preventing disease progression but none of these are seen as cures. Meaning, even on these meds, one's MS can progress. Essentially then, you take the meds because it's what's available and advisable, but to be fair, it's truly a crap shoot if any of these medications do what they are purported to do. It's better than doing nothing, most neurologists would agree. And taking a supported, approved medication can be seen as a proactive act of self-care. Does that or can that idea inspire confidence when disease progression is still possible even when on any of the available medication therapies?

What I find to be the number one issue that makes MS intolerable, rendering the most anger, fear and resentment, is its very high level of unpredictability. While all of us live with massive amounts of unknowns everyday, we find ways to tolerate that notion by various forms of defense, most likely via the one called "dissociation in the service of the ego." Simply put, this defense functions by slicing out much of the stimuli and information that comes at us constantly from all directions, because we couldn't begin to have the capacity to process the amount of data hitting us at any given time. We have to shut a great deal out of our consciousness in order to function and do what we need to do; otherwise we'd be objects of constant distraction and confusion as to what to pay attention to or not.

What occupies the minds of most people with MS if you ask them, is the matter of how their disease will progress. And it’s not an "if," but a certainty of "how," even if no progressive certainty was ever communicated, postulated, or assumed by anyone. Probably having been told that their respective MS has the likelihood of progressing (as is communicated by many doctors based on many data points in consideration, even if the chance is considered very slight), the "likely" in my experience with the patients I see, almost automatically mutates in their respective heads into a "definitely," and all sorts of despairing MS scenarios ensue: as imaginings of a future filled with certain debilitating demise, even though part of the unpredictability of the disease is that it MIGHT NOT CHANGE AT ALL from the time of initial diagnosis. 

As in the general population, worrying about something in the future is often viewed as a way to control the emotional reaction to what eventually does or might come, and even thought to have powers to control the event itself. And many of those with MS spend a great deal of time and energy focusing on and imagining the worst for their respective MS course as a way to prepare for, control, and even avoid "the worst" from happening. As if worrying in and of itself bears such power for any of us!

None of us know what will happen in our future. Sure, we can pay attention to what’s in front of us, make conscious decisions using the information we have at the time, but prognosticating...that we can't do.  And even if we could, what would we focus on?  So much stimuli, not enough time, too many things to do in a given day. In other words, it's very problematic, and I think impossible to be or to feel the need to be constantly vigilant of every possible eventuality that may come our way, good or bad. There's just no way to do it without becoming utterly immobilized. My opinion. 

By focusing so much on what could be, we are missing out on what is happening now, and; in worrying or anticipating or predicting what will happen to us next, we are both presuming that our conscious focus will somehow give is control over what's to come (it does not), besides the fact that we are expending a tremendous amount of energy prognosticating about what will be. When the truth is, for all of us, MS or not, WE DO NOT KNOW WHAT WILL BE!! 

We know life carries much uncertainty. That can be scary and mentally flattening if we consume ourselves with that notion. What we can do is find ways to empower ourselves with the knowns we have awareness of and make constructive decisions about those things...thus allowing us to feel less in the unknown dark. 

Bringing Myself In

I’m a pretty private person. In my practice and elsewhere. Those who know me hear me use the term “boundaries” a great deal. While I think I’ve become less stringent about my privacy over the years, both personally and professionally, there still are some areas that feel preciously mine and worrisome to put out there. As an analyst, I work very diligently to keep the analytic or therapeutic space as “clean” as possible…while I get that I am in the room and that patients can read and know a lot about me from my décor to my dress, to the visibility of bags under my eyes on certain (lots) of days, I do my best to not taint the space with my shit so that my patients have as much freedom to not censor or limit what they say or do in treatment.

But I’ve decided to share something because it feels like time. It’s an issue that overlaps with many of my patients, not all in the same way of course, but because it does in significant ways, I wanted to talk about what that’s like: dealing with something simultaneously with your patients. This happens with all clinicians at some point…but for me this is an ongoing matter that poses great emotional and mental challenges at some points, relieving moments of identification and understanding at others, and a general feeling of unfairness that THIS is the thing that overlaps.

I have Multiple Sclerosis. There. I said it. I was diagnosed about eleven years ago, while I was actively working (still am) at an MS Care Center in New York. Prior to my diagnosis, this was a population of patients with whom I’ve worked for several years. Ironic, huh? I have Relapsing Remitting Multiple Sclerosis…that’s considered the least problematic of the types of MS and my doctors have felt optimistic about what they think my course of disease (hate that word) will be, based on how I’ve expressed symptoms and recovered from them. Benign…that’s the word used to describe my anticipated course. BUT, as I’ve found in my work, because this disease is unpredictable and because progression can happen at any time, feeling like a ticking time bomb isn’t far-fetched. However, I don’t really think that way.
This is me:
I am healthy (except for having a diagnosis of MS),  I am very active (have completed 3 Olympic triathlons, finish regularly in the top 10% of women in NYRR races I enter, top 2-3% of my age group, just trained for my first marathon), I am strong, I take care of myself and my MS is mostly silent. That’s what I remind myself of…I don’t have to remind myself as regularly as I have before, but sometimes I do and it’s not always easy. When my patients who are more progressed in their disease than me enter my office, I sometimes feel scared that I will face the same difficulties they now face; on days like that, I find it harder to do my work with them. I also find it hard to do my work sometimes when I feel really good and strong and I hear them talk about the loss they feel at not being able to do what they used to be able to…sometimes mentioning activities in which I am quite capable and powerful.

My patients either whom I’ve told I have MS or who have guessed (oh, the unconscious is so amazing…and so scary) have all surprised me. My surprise has solely been based on my own projections of how I imagined they would react knowing this. Every single patient with MS who knows I have MS has been “happy.” I’ve actually heard the word “happy,” which has felt odd…they clarified that they were not happy I have MS, but happy that I “get it.” They felt more connected to me, more understood by me, closer to me.

I haven’t told all of my patients with MS (and none who don’t have the disease)…and only old those who now know when it seemed appropriate and useful for our work.
Those I didn’t tell (who might know now from reading this) seemed to not be ready to know this about me, seemed to need the therapeutic space to be more
for them, and that I understand.

There. It’s done. I’ve survived this part. But oh, there is much more. Issues that get discussed that I too concurrently struggle with, and how I deal in those moments, and there are several topics under that heading, such as dealing with aspects of romantic relationships/partnerships, family coping and workplace  disclosure. That can wait for another posting. Digesting this one seems important for the t

Eating Disorders or Not?

It is my opinion that Eating Disorders are far more prevalent an issue than DSM diagnostic criteria can categorize. People having distorted relationships with both their bodies and's in Hollywood, on magazine covers, on TV...but I think most importantly it exists amongst everyday "normal" people like you and me.

I'm not saying that more people should be drafted as members of the "Team Eating Disorder" diagnosis, but there are MANY more people around with body and food issues that clearly are existing problematically in these areas and, to me, that's concerning!. There is no arguing hat eating disorders are real psychiatric diagnoses...if of course they meet certain criteria outlined in the DSM. Eating Disorders are serious, potentially dangerous, life-threatening, pervasive illnesses that, according to NEDA,“ impact millions of people every year in the United States (NEDA, 2013).” The eating issues, such as overeating and using exercise excessively. Maybe these will be addressed in the DSM 6. Maybe. But despite these criteria-met diagnoses, I don't know of one person in my life who doesn't have some odd relationship with food and consequently or reciprocally, their body. And truthfully, who's to say it's odd? Or even diagnostic? I guess because I'm a psychologist, it's within my purview to wonder of either possibility, but I'm thinking about the lines between "diagnostic" and a peccadillo or streamlined, disturbing thinking. And we should not diminish the concerning elements of these non-diagnostic, but glaringly noticeable and interfering relationships with food and body-experiences…because they are everywhere.

Who doesn't know someone (or who is that someone) who, for example will "enjoy" a nice meal with lovely people and then be overcome with anxiety about the calories consumed and what it might do to change his/her body? As a result they might then compensate by either exercising more than usual or making sure to pull out every last bit of bagel flesh tomorrow morning so that all that’s left to consume is the bagel “skin” that remains. Eating only this part feels safe. Come on! That's a little nutty...but we all know people who do something like that (or exactly that) regularly and they don't fit the criteria of having a "restrictive" type sub-categorical diagnosis of Bulimia or Anorexia Nervosa. And what about the person who is an avid marathoner who increases her regime to training for an Ironman®, and also starts doing multiple relay races that involve running huge numbers of miles over the course of a 24 hour period of time...and simultaneously does a juice cleanse (inadvisable to exercise vigorously or at all when doing one [Juice Press Guide to Nutrition and Juice Cleansing], 2012) because it's supposed to be good for you? These chosen behaviors are likely ego-syntonic  (i.e., feel comfortable, don’t cause conflict) as in the case of most eating disorders, but these extreme “gestures” do not necessarily (again) meet psychiatric diagnostic criteria, even though they seemingly (obviously?) are on the hairy edge of being dangerous, at least.

Then there’s my concern about actual disease-“healing” diets that are being used to lose weight, suchas both the Paleo Diet (Cordain, L. Miller, J., Eaton SB., Mann, N., Holt, SHA., Speth, JD., 2000) and the Gluten-free movement, the latter of which is primarily meant to help those with Celiac disease, the former “is based upon extensive scientific research examining the types and quantities of foods our hunter-gatherer ancestors ate.”  The Paleo way of eating is being marketed to help those with autoimmune diseases such as Crohns Disease, IBS, Multiple Sclerosis and others. Whether it works is a very serious matter of debate amongst experts in the medical field. 

Recently there was an article in The New York Times (Chang, K. 2013), about the wave of proponents abiding by a Gluten free diet, originally determined primarily as a consumption
solution for those diagnosed with Celiac disease, as referred to above. The article speaks about the issues of gluten-insensitivity and how the diet can truly make a difference for those with Celiac disease. It goes further to indicate how there have been discoveries of a sub-category of “gluten or wheat intolerance,” with some credence given to the benefits of partaking in ancestral eating habits, proffered by this eating plan. Also noted was the awareness of  a particular protein found in gluten that some people have an “allergic reaction” to, but a whole lot of skepticism about the true benefits of not eating wheat and, thusly the possible missed-out on nutrients as a result of eating such a restricted diet. And while the article cites Miley Cyrus’s claim that “my skin, physical and mental health [are] amazing” as a result of going gluten free, it doesn't say and most definitely can be heard via word of mouth (as I heard it recently) that certain celebrities are "going gluten free" as a way to fight bloating.

Ergo, we have yet another way to facilitate problematic tendencies to achieve distorted body images that many of us (all of us?) at times ascribe as ideals to achieve. Bottom line…even though some eating and body-related behaviors do not (yet?) meet DSM diagnostic criteria (which is also a bit arbitrary if you think about it), this is not to say that these behaviors are not of concern and signs of struggle and some kind of body dysmorphia. Should that be paid attention to or fed into, so to speak…can’t fight it with the arm of a diagnosis, so just let it be? Letting it be without an argument or show of concern seems ridiculous, but what can be done?

American Psychiatric Association,2012. DSM-5 Development. 2013. FromURLChang, K.(2013, February 5).

Gluten-free, whether you need it or not. The New York Times, pp. D1, D7.

Cordain L, Brand Miller J, Eaton SB, Mann N, Holt SHA, Speth JD. Plant to animal subsistence ratios and macronutrient energy estimations in worldwide hunter-gatherer diets.

American Journal of Clinical Nutrition, 2000, 71:682-92.

Juice Press, 2012. Guide to nutrition and juice cleansing. Can I exercise during a cleanse? 2013 From URL. NEDA (2013). Statistics. 2013. From URL.

Delusion in the Service of the Ego

I'm considering the title above. Ifwe look at delusion as a defense (versus a diagnostic criterion), then ofcourse it would be operating in the service of the ego. So what's my need toemphasize it as a title to this entry? I think it's my intellectualized way ofdefending against MY difficulty in tolerating what feels like a recentand be made to  "disappear" through means of certain diets and homeopathic remedies, and the occasional promise from a medical professional. Healed completely. Well, why wouldn't someone with MS want to believe that? It sounds wonderful. Hopeful. Makes one think things can return to normal, the old pre-MS versus the new, not fully integrated “I have MS” normal.

Someone I met recently, who is studying to be a homeopath, wanted to know if I work to help my patients accept their MS, versus encouraging their hope or belief (like hers) that MS can be cured through diet and herbal remedies. I didn't know how to respond, given that I just met this woman and that it didn't seem like the best context (a Shiva house) to debate her aforementioned beliefs and her additional conviction that Lyme's Disease causes MS.  Is the last suggestion that relevant to the main point I am making? Not directly, but I mention it because, to me, it’s an example of connections being made that seem rather random, done in the service of ego soothing. This, versus tolerating the information that is real and valid, based on actual research and scientific inquiry. Information, that to many, betrays hope. For example, having a conviction that the Paleo diet CAN cure MS engenders hope, and I wonder if that is a problem to be challenged? This is one of my quandaries. I tend to operate around this issue with the philosophy of “if it’s not hurting you, and it’s helping you feel like you have some control over your disease, when otherwise you do not, go ahead.” And the Paleo diet actually is quite healthy, so how do I argue against one engaging in it? It’s not the incorporating of the diet that’s the issue; it’s the belief that this diet IS
the MS cure that has me concerned. I believe very strongly in the way I practice as a psychologist.

I also believe and trust the physicians and other MS experts whose work and research have produced as clear an understanding as is currently possible about how MS functions and how it can be treated...and how it cannot be cured...yet (or maybe ever). So when patients come to session asserting that certain diets (Eg., Paleo, Swank) are KNOWN to eradicate all that is MS, or worse, hearing from a medical professional promises, yes, promises that this professional WILL find a cure for MS, I am left with my mouth horror-struck (no one ever said I have a poker face)  and feeling flummoxed as to what to say. I feel awash in conflict. On the one hand, I feel it's my responsibility to provide space for reality testing and grounding. On the other hand, I can see the glint of hope in my patients' faces, and I believe having hope is immensely constructive in managing the uncertainty inherit in an MS diagnosis. But, just stated to me far more articulately than I will reiterate, one can support a patient's need and desire for hope, but not if the hope is derived from false claims and inaccurate information. Ergo, it would seem my job would be to encourage the wish for something better, AND disempower the delusion of a cure, since it doesn't truly service the ego if its based on fallacies, right?


Managing Multiple Sclerosis: How an MS Diagnosis Affects More Than Just the Patient

Originally posted on September 27, 2013 by MSAA

When thinking about the idea of “managing MS,” more than likely you immediately think about the patient and how he/she is dealing with, incorporating, accommodating to, accepting, grieving…and having many other reactive and thoughtful coping styles for getting used to being diagnosed with multiple sclerosis. Certainly in my work, this is something that I focus on regularly with my patients: how to help them manage their MS. Whatever that might mean for the individual.

But managing MS is NOT JUST ABOUT THE PATIENT. It is simultaneously about the microsystem surrounding the patient, including partners and other family members. We can consider that “managing MS” needs to be looked at more globally, relationally and more systemically than just individually. That the trauma of MS diagnosis has many fingers of whom is affected and therefore who has to manage it.

My work more often than not involves discussions about my patients’ respective relationships with the people in their lives, particularly if a partner is involved and always when there is no partner, but the wish for one remains. Many relational areas get covered in sessions, but thematically, I hear over and over again the feeling of or actual act of being rejected; the reasons given are either directly stated to be because of the patient’s MS or indirectly communicated that MS has interfered so substantially in the relationship, the situation is no longer viable. Then there are the rejections that occur in which the partner/family member/friend remains as a figure in the
patient’s life, but creates enormous distance between themselves and the patient, with the space between them being filled with uncertainty, anger, resentment, loss, sadness, disconnection and the like…feelings felt by both patient and their “people.”

And while I absolutely empathize with patients who feel rejected/are rejected by their “people,” I also have great empathy for the “people,” who are the ones patients rely on, who become the caretakers, who are tasked with increased responsibilities they may not be prepared for nor wished for when they got involved with said-patient. They didn’t sign up for this! Managing MS is NOT just about the patient, as I said. I work with people whose partners have had very strong reactions after a diagnosis of MS was given: some may reduce or stop sexual intimacy; or become increasingly snappish and intolerant when the patient struggles to do tasks at home that were previously rote and done with little effort, like removing dishes from the dinner table and bringing them to the sink; increasingly spending more time out of the house and away from the relationship, finding the patient’s symptoms too difficult to tolerate and too
frustrating to face regularly; in some cases a partner may even leave thepatient after diagnosis never to be seen from or heard from again. In one case
a partner telling the patient that he needed to break up because he could not deal with her MS, even though she was asymptomatic and, in a meeting with the doctor (requested by this boyfriend), the doctor presented a very optimistic picture of the patient’s likely path with her MS. That boyfriend apparently did not want to pay attention. He was mostly concerned that the patient would end up in a wheelchair and he would have to take care of her, which he did not wantt o do anytime soon.

In all of these examples people are reacting to a situation (MS diagnosis and its sequelae) in ways that speak to how awful and traumatized they are feeling about what is going on. These are not the only examples I have; there are ones in which partners step up, learn about MS, specifically their partner’s MS, where they are supportive in loving, generous ways, when they actively participate in their partner’s treatments and step into not out of what is happening. But even those “angels” have to face and deal with the trauma of being with someone with a progressive, chronic illness. No one is immune from the impact of that. I frequently see or hear about relational pathology as couples/family members adapt to an MS diagnosis. But, I also see that many of
the partners or family members willingly participate in treatment or get their own treatment or even join a group with others who have a person in their life with MS and are having difficulty managing what the diagnosis means to them.  All of these latter tactics can be very constructive…and all are a process, as is managing MS…it IS a process that is evolving and ever-changing and one that needs to be open to the idea that it’s NOT JUST ABOUT THE PATIENT.

This entry was posted in Caregiving & Multiple Sclerosis, Multiple Sclerosis Association of America, Multiple Sclerosis Tips, Uncategorized, Well-being & Multiple Sclerosis and tagged caregiving, caring for a loved one with ms, caring for someone with MS, caring for someone with multiple sclerosis, effects of MS, effects of multiple sclerosis, Gayle Lewis, ms, ms diagnosis, MS psychologist, MS symptoms, multiple sclerosis, multiple sclerosis diagnosis, multiple sclerosis psychologist, multiple sclerosis symptoms, multiple sclerosis treatment, psychologist by MSAA. Bookmark the permalink.


The Journey or the Pace?

“What was your time?” “How long did it take you?”

I finished my first marathon last weekend. The New York City Marathon. A big deal. A HUGE feat. Just to finish, since many do not AND most don’t even try. But it would seem that, in my small world at least, it’s not as important that I finished, but more so in what time. Extraordinarily to me is that I am mostly asked for my finishing time by people who themselves are not runners. People, whom when I was training would claim to be capable of running no more than a few miles before collapsing. Seemingly impressed if not awed by my plan to be a marathoner. BEFORE the marathon, the feat itself was THE THING. After….it’s about how long it took me and did I even finish? 

I can’t help but associate to psychotherapy and psychoanalysis when I think about the idea of approaching, starting to run, facing the ups and downs of the course, feeling and trying to acknowledge and push through the inevitable aches and pains that arise and then seeing the finish line….crossing the finish line. The last part of that idea…finishing….such an amorphous notion in the world of treatment. Over the years, I have myriad patients ask, as they start the process of therapy, “how long will it take?” After exploring the question, I often would say “it’s a process and I cannot say how this treatment will go.” Something like that. I can’t promise where the finish line is and how long it will take to get there. But I have faith we will try to get wherever “there” is together. My patients usually find my answer frustrating. We like to see finish lines. It brings a sense of order to a process that is filled with a lot of disordering and difficulties. You take on treatment and you take on a marathon of introspection and relational dilemmas/solutions, self-understanding, increased knowledge of your capacities and shortcomings.  So many similarities to an actual marathon.

One matter I associated to in this regard is the idea of competitiveness. Now, for me, this is a significant part of my approach to many matters, especially matters of sport. Yet, I do remember more than once wondering whom would finish treatment first, the woman who I always saw exiting her session before I entered mine, or me? Who would get better more quickly? Figure “it” out faster? Self-realize sooner? Yes, I know it’s not a competition and treatment, just like running a marathon…is a process…a “marathon,” not a 10K race. A marathon is about YOUR journey; a 10K race can be about that too, but for me, it ‘s about kicking the
ass of anyone who’s getting in my way.

When I got to mile 22 in last week’s marathon, my quads were screaming bloody murder and I was having a very hard time ignoring their bellows of agony. I knew that this was the time to know the pain was there, but to draw upon my mental reserves to get me to the finish line. I’d come that far, I needed to just keep running. But….I stopped to walk….a few feet. And then I resumed running. It reminds me of those ebbs and flows that I see in treatment with patients where they seem to be plowing ahead with a great insight and they feel really good, since it took a lot of work to get there…and then they get stuck again. And things feel shitty and immobilizing and the pace slows and they might even feel hopeless and despairing. But hopefully they keep on at it and find their inner resources to keep them in the process. I think that’s what my little walks were about. Yes, WALKS. I took about three. All about the same distance…a few feet. I was trying to get my bearings. In those moments, I could not see the finish line. Ironically, I was closer to it than ever before and I could really picture it, but it seemed so far away. And I couldn’t go as fast as I wanted to go…as I usually can go when the race is shorter. And I had to tolerate that experience and readjust my process and expectations. This is what happens in treatment all the time. And, likewise in life. 

Well, I crossed that finish line with such overwhelm and pride and frustration…because I did it! Yes! But, I knew I didn’t make my goal time. My goal time that was based on something arbitrary…a competitive urge in me towards someone I have no right competing with, especially in regards to marathon running. But it had given me a goal, something to shoot for and aspire to as I involved myself in this arduous, rewarding, exciting, challenging, painful, self-realizing process of deciding to do….what was it a marathon or treatment I was talking about? Hmmm….