Wednesday, October 3, 2018

A Guiding Light in the Darkness of Chronic Mental Illness

Two days in New York City, one of my favorite places, not just because I lived there for 8 years as a student, then a professional, but because there's nowhere like it. Lucky for me, my 8 1/2 years old daughter loves it, too. My husband hates cities, so he was not invited to our girls' weekend away visiting my brother and his boyfriend. No matter, my daughter and I needed this time to maintain and strengthen our connection as I know she is very aware and senses my ongoing struggle with depression, a lot of anxiety and never-ending OCD. I am usually at my best in NYC. It feels like home.
The first part of the first day went very well, seeing my niece at Barnard and spending some time with her. I had more difficulty with my irritability later in the day and snapped at my daughter a lot. For some reason, she is very forgiving, in an unspoken way. I redeemed myself on day two though and we had a wonderful time. We took a lovely walk in the morning, talking and laughing. We then went down to 42nd Street, not my favorite place in NYC, but she was in heaven. She loved it all. We then went and saw the play, School of Rock, her first Broadway play. I watched her face as she took it all in, and the smiles, laughs and her intention were only part of what continually brought tears to my eyes for over 2 hours.
Going to a Broadway play is not on a list of "needs" for my husband and myself. This was a treat, courtesy of being paid from another piece I wrote about my experience with mental illness. This was very special as I never would have even thought of this as an option now. Seeing a Broadway play is a “want” not a “need” for our family.
When you are sick with a chronic illness, you may be able to recognize those special times in life and not take them for granted. This was one of those times. This was perfection. Being with my light (her middle name is Liora, which means “my light,” so it is fitting) and sharing a great experience. Most importantly, being here on earth to be a part of it. This is why I cry at every one of her performances and school presentations. It's not simply about me feeling proud of her, it's me reflecting on the times when this all could have slipped away because of a relentless illness. I was and am here, doing the best I can, which is not following a linear path right now, but here I am.
While she may not understand the significance of Andrew Lloyd Webber coming onstage at the end of the play and why I cried at that moment, she hopefully will one day. It wasn't just that I was in awe of this extremely gifted and talented man, it was, again, something so special I shared with my light.
When we left the theater, we were in sync, holding hands, talking about the play. She repeatedly told me to "calm down" as I tried to explain the significance of Andrew Lloyd Webber's appearance. I told her I couldn't calm down because I was amazed. I had to express how I felt. She said she understood, then made fun of me, which was fine. We held hands walking to the subway. We were together in many ways and at least for one day, it was consistent. I was consistent.
I got a day. I had a day where I was (mostly) with my light, not just in body but in soul. It may not seem like a lot, especially for those who experience more days like these than not, but for me, it was as close to perfect as life could be. I will be honest and say this didn't continue into the next day when we went home. This didn't surprise me. It can be the everyday activities that bring about my intense anxiety and most definitely my OCD, so coming back to the “reality” of being home only triggered the increase of my symptoms. I know I have a chronic illness that will not magically disappear although not everyone understands this. Some see me smile and think I'm all better. I wish.
Two days in New York City, living with my mental illness and being “present” with my daughter. This filled a hole that sometimes has too much open space. For me, I know I will hold this and try to use it when I have a tough time with my symptoms and when I have difficulty feeling present with my daughter, her bright light guiding me along.

Thursday, September 27, 2018

One Day: A Daughter's Questions and Answers to the Terrifying World We Live In

One day, my daughter is going to want to know more about how women got the right to vote.
One day, my daughter is going to want to know about the Holocaust.
One day, my daughter is going to want to know more about the civil rights movement.
One day, my daughter is going to want to know why swastikas were spray painted on a synagogue the week prior.
One day, my daughter is going to want to know why a black man was shot by a white police officer for simply walking down the street and suffers no legal consequences.
One day, my daughter is going to want to know more about why people are upset about men creating families together and women creating families together.
One day, my daughter is going to want to know why a man with the same job title and experience is making twice as much as she is.
One day, my daughter is going to want to know why women are targets of ridicule and disbelief when they bravely come forward revealing a history/current sexual abuse by men.
One day, my daughter is going to want to know why women are not believed.
One day, my daughter is going to want to know more about why people with mental illness are discriminated against.
One day, my daughter will want to know why people’s differences are a negative and not a positive.
One day, my daughter will stop asking questions and develop the answers that promote a positive society:

  *Where women feel safe
  *Earn equal pay compared to men
  *Talk openly about the Holocaust
  *Refer to when women gained the right to vote
  *Discuss the reality and struggle of the Civil Rights Movement
  *Talk honestly about Anti-Semitism
  *Discuss the racism rampant in our society
  *Talk of those who suffer repeated discrimination by others

One day, we need to decide to raise our daughters to develop the answers to these questions. It’s already begun, but the urgency continues to increase with each passing s-e-c-o-n-d. It started and should never stop.
One day is NOW.

Monday, September 17, 2018

FYI, Feeling Suicidal is a Symptom

It's Suicide Prevention Awareness Month and I have been thinking about the numerous aspects of what this represents.

Many people understand that suicide is terrifying and some people see it as a separate illness. So far, the psychiatric world does not see it that way and it can be a symptom of several mental illnesses. Some people believe that those who are thinking suicidal thoughts and/or acting on those thoughts are looking for attention. That is far from the truth. Having suicidal thoughts is not a choice. One does not choose to have them. They are uncomfortable to say the least. I speak from experience.

Unfortunately, having suicidal thoughts, plans and intentions are symptoms of many mental illnesses. I have experienced them many times and I can tell you quite clearly that I felt terrified of them, even at my worst when I had no clear cognition and truly believed everyone would be better off without me. I was not being selfish. My illnesses took over, which is what happens with this specific symptom. Again, it is not a choice, even when one "decides" to follow through with the thoughts, making a plan and acting on it. It is due to the state of the brain at that moment in time. It, in and of itself, is not a disease. It is a symptom just as change in appetite, low energy and helplessness is of depression.

Too many people do not understand this phenomenon and too many people with mental illness who have suicidal thoughts and/or died by suicide are blamed, as if we have emotional and cognitive control at those times. Our brains work differently than others who have not experienced these thoughts. We are wired differently. It does not mean we are "bad" or completely "fucked up." Unfortunately, I have heard these adjectives in relation to my own illnesses, when I have been open about having suicidal thoughts when I was very ill.

I do not necessarily blame people who have these misunderstood beliefs. This is why I am so open about all of my experiences with mental illness. People need to have a better understanding of the realities of what it is like living with these illnesses and need to be educated. It is certainly not easy and no one should ever be blamed for their suffering. One would not blame a cancer patient for having cancer. That would be cruel.
Hint, Hint: it's the same for someone suffering with mental illness...we should not be blamed.

Feeling hopeless, fatigued, having difficulty sleeping and eating, not enjoying things we used to and having suicidal thoughts do not warrant blame. In reality, suicidal thoughts and actions are not conjured up for no reason. It is due to illness, plain and simple. Just as I suffered from a sinus infection and dealt with symptoms of facial pain, difficulty breathing through my nose and a fever, I suffer from symptoms related to my mental illness. Very different symptoms but still symptoms nonetheless.

Doesn't this make sense?

*Spread the word during this month: Suicide Prevention Awareness Month (and always). 

Monday, September 3, 2018

The Sound of Silence

I wear one several times a week and I hear nothing. I walk miles each day wearing it, passing many people and I hear nothing but the vast noise in my own head: my OCD thoughts and never-ending emotional worry. I try to focus on listening to the music through my ear buds, my 90s favorites. As I walk, I receive some smiles, friendly "hellos," but otherwise silence. It's deafening. They walk past, children and adults, and clearly read the message on each one. If eye contact is made, they either look away quickly or look past me almost pretending they never read it at all.

I know my expectations are very high. I want to be stopped, told how great the message is that I am wearing, that it's so important, but, again, there is only silence. I want so much for people to engage, say something, let me know they get it. I want to hear how glad they are I am promoting such a critical message and fighting the stigma of mental illness.

The reality that faces me, however, is a quiet one. People do not comment on others' messages on their shirts. I know I have never stopped someone to comment and perhaps it would be weird to do so. My passion gets in my way, at times. I know this and I am not na├»ve about this. Right now, I am feeling pressure, which ebbs and flows over time and that I have written about in the past. I am feeling the pressure of needing to be louder about my experience with mental illness, with multiple diagnoses and multiple treatments. I feel desperate that people will never get it and this is only added to my worry about the never-ending stigma that is rampant in society. I am so sick of it, of hearing about it, of living it. I am sick of hearing about people who have become outcasts from their own family and friends after a hypomanic episode, a psychotic episode or a depressive episode. We need support from those who know us and love us. Recovery simply cannot work without these people who are vital to our living the best we can. I cannot imagine living my life without the support I receive from those who have always loved and cared about me, during the difficult times as well as the better times. 

So, I am angry. I am fighting. I don't really care when someone says, "I am so OCD about..."I simply hope s/he knows or is willing to learn about the reality of someone who lives with the real OCD. I don't care when someone says, "I am having a bad day and I'm sooo depressed." Again, I hope s/he can learn what it is like for someone who is living in a major depressive episode. I do care when someone says, "My husband and I had a fight about the laundry and I just want to kill myself because I am so annoyed." I care because that person had an argument, which we all have with our spouse, but doesn't mean she truly wants to kill herself as a result of that argument. She is using it as normal everyday jargon and that upsets me. Again, I know I have those high expectations of people, but saying that in front of someone you know has struggled with mental illness and/or has been suicidal or even a complete stranger, immediately stigmatizes not only that person but the term itself. 

September is Suicide Prevention Month and it is imperative that we educate one another, share stories and experiences and support those who are struggling and have struggled. You never know what another is going through unless s/he tells you, but even then, we never share every single thing that we experience. No one does. 

When my 8 year old daughter is angry, I ask her to talk and communicate about it and that is what I am doing here. I want people to say something, smile, give a thumbs up...anything to let me know they get it. So comment when someone is wearing any shirt that supports any illness or cause. We wear it for a reason.

My depression is treatment resistant, but erasing stigma doesn't have to be.

Monday, August 27, 2018

My Therapist's Vacation and a New Diagnosis

It's no joke when your therapist goes on vacation and you are struggling. People always say, "the worst time is when your therapist takes a vacation." I completely agree. I have always felt anxious when my therapists have been on vacation, especially when I am ill or having a hard time.

For me, it's no joke, no joke at all. My name may mean "laughter" but I am definitely not laughing right now.

It has been a busy year with ups and downs for me: switching therapists, getting to know my new therapist and vice versa, remembering being sexually assaulted, experiencing a moderate depressive episode (the PTSD I experienced after remembering my sexual assault most likely brought about the depression, which luckily did not become severe as it always has in the past. An increase in my newest medication is helping to alleviate my symptoms, slowly but surely). And now, the intense increase in my symptoms of my now diagnosed OCD.

I never told anyone about my obsessions and compulsions as to me, they were simply "anxiety-related," and many of them began in childhood, therefore I became accustomed to experiencing them. I never told a family member, friend or therapist/psychiatrist about these behaviors because I was incredibly ashamed and embarrassed. My symptoms dramatically increased over the past 6 weeks and finally came to a point where I knew I simply could not live like this anymore. The battles going on in my head can last for hours at a time:

  • I turn off my iron and unplug it and then stare at the empty outlet and say over and over and over to myself (out loud) that I did unplug it. I can stand there for many minutes and even when I finally walk away, my anxiety is out of control with worry.
  • I check my alarm, once it is set, at least 10-15 times in fear of it not going off at the right time in the morning
  • Whenever I see a digital clock, I have to add up the numbers
  • I wash my hands with scalding hot water numerous times a day for fear of getting sick
  • I act on obsessions of picking at my skin until it bleeds and pick at my lips
  • I have to perform things in a certain order (I can only eat chips on a plate from smallest to largest)
  • I write lists for when I run errands and once I complete one, I cross it off but then need to write the "updated" list all over again
  • Several times a day, I have intense worries that something violent will happen to Ken and/or Iliana
  • I spin my thinking from obsessions to compulsions for hours each day, for example, I will return home from work mid afternoon and feel completely overwhelmed with folding laundry, emptying the dishwasher, making dinner, etc. (all things that are not emergent in the scheme of things). I will state out loud to my empty house the order of doing each task numerous times and change it midway thinking my initial plan won't work. I will spin all of this while conducting each task and rush due to the intense anxiety I feel. As I perform each act, I figuratively beat up on myself for being caught up in these obsessions and compulsions. These acts also need to be completed before my well-being can be tended to, even if I feel dizzy from hunger. This "spinning" is a key symptom of OCD.
The letters OCD are thrown around a lot to describe people who are particular and like things to be clean and tidy. The reality of OCD for me is experiencing the above symptoms, plus many more, in an intense never-ending, life-interrupting way. It is torture. I am mostly aware of what is happening during the obsessive thoughts and compulsive behaviors. I can't stop myself. I want to, but I simply can't. The basic visual descriptor of OCD is circular: 

I don't follow this. For me, there is never relief after completing the compulsive behaviors. This isn't simply that I want to keep the germs away so I wash my hands a lot or that I worry that I kept the iron on. It is so much more complex and disturbing. This was made more complicated after having ECT as my short term memory is impaired. This does not help. It is unnerving and never-ending.

I told my therapist a little over 2 weeks ago. She had asked me in the weeks prior about any OCD-like behaviors as she was picking up on some through our conversations but I lied and told her there weren't any. I was terrified to tell her because of the intense shame I felt. That night I told my husband and, as usual, he was completely supportive. To me, it was just one more thing "wrong" with me and I could not accept the thought of sharing it with those close to me.  I felt more shame and berated myself for having so many "problems." My therapist said, you are stigmatizing yourself and that is not why you work so hard on behalf of those battling mental illness. You wouldn't treat anyone else who described his/her OCD the terrible way you treat yourself. Intellectually, I knew she was right, but I can't escape those negative feelings toward myself.

Since my therapist's 2 week vacation was coming up, she wanted to have a consultation with a leading expert in OCD at Yale, whom she knows. She spoke with him and then I scheduled an appointment. I, of course, did my own research before meeting him and was very enticed by his education and experience. I knew though that many people can look good on paper but it is the actual human interaction that is most meaningful. Having an M.D. and Ph.D. is certainly impressive but there is always more to an individual.

I went to my appointment with some apprehension as it is always difficult for me to see someone new and have to relay my past and present life of having mental illness. Driving off of the highway, the same exit that one takes to Yale's Psychiatric Hospital where I have spent much time, not only as an inpatient but where I also received ECT and ketamine infusions, was traumatic. Parking across the street from the main hospital where my husband brought me to the ER before my hospitalization 4 summers ago was traumatic. Walking into the health center and going through security was traumatic. It was traumatic sitting in front of this sign while waiting for the doctor. I felt like a lab rat.

I met Dr. OCD (I made this up prior to the appointment as I needed some way of getting through this with some sarcasm) and he was very nice. In person, he was polite, kind and obviously brilliant. This is where the positives ended. He listened to me and we went over my precise symptoms (which I brought in list form in order not to forget) and he diagnosed me with OCD. He then went on to say that phrase that no one ever wants to hear from any doctor, "Not to minimize your experience, but..." I can handle a doctor saying this to me once or twice but it was many more times that Dr. OCD said this to me. He basically, completely and utterly, minimized my experience, my hell that I am living in right now because the two options to help me do not make sense for me at this time:

1. I could see a CBT (Cognitive Behavioral Therapist) and practice exposure therapy where I would need to sit with and tolerate my anxiety regarding specific obsessions.

2. I could try a medication that he has used in just 2 other patients with the same complex mix of diagnoses and symptoms. I agreed about not starting either as I am not in a place to fully take part in CBT and I definitely do not want to add another medication to the mix when I am still coming out of my depression. He repeatedly said he understood that "this week" has been bad as it was leading to my therapist's vacation and I had to correct him a couple of times by reminding him that it has been the past 6 weeks or so that have been worse, not only "this week."

And that was it. Almost 2 hours telling this stranger very personal and embarrassing obsessions and compulsions I was told, yes, I have OCD, but there's really nothing else to do right now but continue with my current medications and therapy. After about two hours and a $400 bill (I will submit and be reimbursed for this from my insurance companies), I left feeling completely misunderstood and not heard. I never expected a miracle cure but I expected something concrete I could do to help combat my painful symptoms. All he left me with was to wait a month and see how I am feeling in terms of possibly moving forward with one of the options discussed.

He is a researcher, studying medications and treatments to treat OCD and I walked in feeling like a lab rat and walked out with the same feeling. My sister-in-law said since I didn't fit his research profile, I was dismissed. I agree with her.

I sobbed as I drove home. I dreaded seeing my therapist the next morning, the last session before her vacation. I told her how it went and she felt so badly and responsible. I told her she did nothing wrong and did everything right. She sent me to an expert for a consultation in order to help me and inform our treatment together. The session went along with me feeling completely understood, validated and taken care of. And then it ended.

My normal schedule of appointments with her are on Mondays, Thursdays and Fridays, with 15 minute phone check-ins on Wednesdays and Sundays. That's a lot of contact and support, particularly when I have so much happening in my head. It's a dramatic change in my schedule and life for these 2 weeks.

I can email her over the next 2 weeks and she asked that I do so as she wants to know how I am getting along. She referred me to a colleague to see while she is away and I have an appointment this week. We'll see if I make another the second week. I simply don't feel secure left on my own with so much turmoil in my head.

So, yes, the worst time is when your therapist takes a vacation but when I say this now, there is no sarcasm or joke involved. I'm trying to focus on getting through each day, as I did prior to her vacation, and I know she will return refreshed which benefits her and benefits me.

But for now, her vacation is no joke and I am not laughing.