Editor’s Column
Sandy Siegel

I have very little patience these days.  I anger quickly, and as I tip my husband Steven forward in his wheelchair to help him get into a more comfortable position, I find myself shoving more than tipping.  I resent the nighttime tasks of getting him undressed and into bed, and especially the middle-of-the-night cathing.  I cry easily.  In short, I am burned out.  As I was helping Steven with something (I can’t even remember what right now), I just lost it.  I screamed at him, “I can’t do this anymore.”  He said something in response.  I didn’t hear what, and at that time nothing he said would have calmed me down anyway. “Don’t you get it?” I shouted.  “I just can’t do it anymore! I don’t want to do it anymore!”

These words were written by Suzanne Mintz in an article entitled, “Recognizing Burnout” (Take Care! Volume 15, Number 1, Spring 2006, 3).  Suzanne is the President and Co-Founder of the National Family Caregivers Association; Steven is her husband and he has MS.  She wrote an article about becoming burned out and needing to find help to care for Steven.  I was totally riveted to her words.  My mind wandered to the following thoughts as I pondered Suzanne’s situation.

Pauline was in an acute care hospital for a week after her attack.  Once she received IV steroids and her doctors were comfortable that her condition had stabilized, she was transferred to a rehabilitation hospital.  After a week in this rehab hospital, we were told that Pauline could come home for a weekend.  On my way home from work on Friday night, I picked up Pauline from the hospital.  I filled my car with an assortment of adaptive equipment and we headed home.  I could easily fill up the entire Journal describing that weekend.  I will, instead, just tell you that it was the most emotionally and physically exhausting experience of my entire life.  I took Pauline back to the hospital on Sunday afternoon.  As we were rolling past the nurse’s station on her floor, I almost said to the pleasantly smiling nurse, “Wow, you aren’t going to let her come home every weekend, are you?”

Spending that weekend with Pauline totally shook me to the core.  Pauline was completely paralyzed from the waist down.  She had absolutely no bowel or bladder control.  She could move nothing below her waist.  Our bedroom was on the second floor.  We had steps into every entrance.  There wasn’t a doorway in any room in the house that would accommodate a wheelchair, including any of the bathrooms.  Transverse Myelitis?  No clue.  The TMA did not exist.  The TMA web site filled with information did not exist.  The Johns Hopkins TM Center did not exist. My simple, little brain was bombarded with confusion, fear, anxiety and anger.  What was Pauline’s life going to be like?  What was my life going to be like?  Was I going to be able to handle this situation?  Was she going to get better?  Was she going to get worse?  Was our relationship going to survive this challenge?  Could I stay in a relationship with a person who was paralyzed?  Was it possible for me to leave a person who was paralyzed?  What kind of human being was I really?

I don’t remember what I did after I got home from returning Pauline to the hospital.  I have no doubt that it involved my head spinning in 360 degree circles on my shoulders like the girl in the Exorcist. 

I would love to report to you that I had absolutely no doubt in my mind from the time Pauline became paralyzed that I would remain by her side for the duration.  I cannot honestly make that report.  I had no idea what I was doing or what I was going to do.  I was frightened, I was very confused and I was consumed with self-doubt.  I was in a place I had never been before.  I knew how I wanted to see myself, but I didn’t know if I was really the person I very much wanted to be. 

It’s not easy to deal with change when you can see it coming – when you can prepare yourself or plan for it.  Even the most exciting and joyous events in our lives, such as marriage or becoming a parent cause us emotional and psychological stress, because change is stress.  Getting TM or NMO or ADEM is another kind of stress.  It is the worst kind of stress.  There is nothing positive about getting sick and being left with permanent spinal cord damage.  It happens without warning so that no one is given any chance to prepare themselves for it.  And it happens with such immediacy that no one is given a chance to adapt.  There’s nothing great about breaking one’s neck in a car accident, but there is an understandable cause and effect.  One might be pretty resentful or angry or bitter about a football injury, but they aren’t going to be particularly confused about how they became paralyzed.  This is not the case with these disorders.

Pauline was getting dressed and bent over; instantaneously she was totally paralyzed from the waist down.  It was beyond her ability to comprehend.  It was definitely beyond my ability to comprehend.  The emergency medical technicians didn’t comprehend it, but they did carry Pauline out of the house on a board. And as it turns out, the emergency physician took about nine hours to begin to comprehend it.  We were the entire congregation of the not comprehending. 

No one is told by a doctor, “I’ve got some bad news for you.  We just got back your test results and you are going to be developing some pretty challenging symptoms.”  No, with these disorders, all of the symptoms happen – some time between right now and tomorrow morning.  After you are completely paralyzed, unable to urinate, unable to have a bowel movement, having horrible spasms and/or nerve pain, some doctor tells you, “well, you know the bad news, and it’s called Transverse Myelitis or Devics or ADEM.” 

These disorders are the perfect storm of emotional and psychological chaos – without warning, inexplicable, immediate, aggressive, severe, and for many, permanent.  Getting TM or ADEM or NMO is like the nuclear explosion of human experience; no one will ever have a more memorable event in their entire lives, regardless of what else happens to them.   

I’ve had a lot of time to think about all of this emotional and psychological chaos.  First, I had a front row seat in watching this happen to the woman I love.  Then I found myself in this incredible role of picking up my telephone almost every evening of the week (after I get home from work) and listening to people recount similar experiences for themselves or their children or their siblings or their parents.  I have devoted a lot of time and energy into trying to understand how and why people think and emote and behave as they do.  It is the anthropologist in me.  It is personally important for me to come to some understanding about and to ascribe some meaning to something that has so dramatically and permanently changed Pauline’s and my life. 

In contemplating Suzanne’s article, I wasn’t focused on her becoming burned out; I was fixed on her emotional honesty and candor.  It was absolutely compelling, because it was so real and so incredibly human.  I was overwhelmed by the risk she took personally to be so honest in the sharing of her thoughts and feelings. 

Human beings feel what Suzanne was describing in her experience with Steven.  Human beings experience what I thought and felt about the weekend Pauline came home from the hospital.  Suzanne’s and my disclosures are so important.  By our sharing these experiences with you, we are assuring you that you are not the only person in the world who has these thoughts and feelings.  In a way, this sharing offers you some “permission” to accept these thoughts and feelings in yourself.  You aren’t crazy and you are not a horrible person.  You are not alone; this is what human beings do.

When horrible things happen to people, not everyone reacts with heroic and virtuous thoughts and behaviors 24 hours a day, seven days a week and 52 weeks out of the year.  Most of us want to think of ourselves in only the most positive ways.  When bad things happen, we want to believe that we will handle these experiences consistent with our highest ideals and values.  I am often somewhat taken aback at how judgmental people can be in reflecting on how someone else handled a particular situation.  “What kind of parent let’s their children do that?”  “How could that guy treat his wife in that way?”  I hear these sorts of judgments from people all the time.  I’m sure we all do.  I have come to believe that none of us know how we will handle a situation until it happens to us.  I don’t presume how I will handle anything, so I work at not judging how someone else is doing it. 

We are all human.  We are all selfish.  We all have wants and needs that we think about and feel more directly and immediately than anyone else’s wants and needs.  I would love to spend all of my time being an altruist, but my “me” so often gets in the way.  The difficulties we experience in being selfless might be the reason we’ve invented shame and embarrassment.  Shame helps us to keep our “me” on the “right track” from within ourselves and embarrassment is society’s advocate for controlling the “me”.  Thank goodness I don’t have to do all of this behaving myself on my own.     

How does one experience an intense tragedy and life-changing event without running headlong into some self-doubt?  I have had significant questions about my character throughout this entire experience with Pauline’s illness.  I have experienced a significant inner struggle between who I am as a human being and the person I would like to be. 

Sharing in what Pauline has been through physically, psychologically, socially and emotionally has been so complicated and challenging.  I can see how horrible her life can be when she is frustrated by falling down or doesn’t have the strength to walk across the street or how miserable beyond words she is when she is depressed or how beaten down she can feel by fatigue, or how despondent and defeated she can be when the pain will not subside or how fearful she can be about accidents or how embarrassed by having one. 

I don’t have any of these symptoms, but when you like, care for, love and respect someone who is going through all of this; it can be entirely mind, heart and soul numbing.  I feel so badly for Pauline, but I also feel badly for myself.  I have had to mourn losses in my own life.  Life would be so much easier for her without all of these issues, and it would be so much easier for me, as well. 

When I got Pauline back to her room at the hospital after the weekend at home, I didn’t share my feelings with her.  I didn’t announce to Pauline that I had all of these doubts about myself.  It would have been massively unkind of me to give her my issues to deal with while she had so many of her own.  She had more than enough to fill her brain with during her stay in the hospital and for years afterward.   To the best of my ability, I put on the brave face, took on my role as gladiator with the insurance company, tried to do as much problem solving as possible and then waved my pom poms around wildly as I provided as much emotional support as I possibly could.  I knew that I needed to sort through these issues on my own, and depending on how I resolved all of this for myself, I may or may not have ever shared any of this mental and emotional gymnastics with Pauline.  There are some issues that we need to sort through for ourselves and find a resolution before we decide to share these with the people we love.  That’s certainly what happened between Pauline and me.  

I also didn’t come home and tell everyone in my family that I was concerned about spending the rest of my life hiding under the couch.  I would have felt horrible guilt and shame about sharing my emotional and mental turmoil.  And if I had taken up permanent residence under my couch, I wouldn’t be writing this column.  So, I’ve made my way through the journey to this place and time, and you get today’s status report.

Complete honesty and candor is difficult.  We often don’t share because we don’t want to be judged.  We want to be accepted, liked and loved.  And we want to like and to love ourselves.  We have some conception of the kind of person we want to be.  That model is what we use to judge our personal successes and failures, when we are being honest with ourselves.  These composite models are formed and continue to be formed from our experiences in life.  There are significant contributions made to these models by our parents, grandparents and other family members, by our teachers, by friends, and by the many cultural institutions that help to shape our values and beliefs, such as religious organizations, schools, social and community organizations. 

My common sense leads me to believe that we create some serious conflict for ourselves when we don’t achieve some convergence between how we would like to see ourselves and how we actually think, feel and act.  The amount of difference between our ideals and our actual feelings, thoughts and actions probably bears some relationship to the amount of conflict we experience.  I’m not a trained professional, but I’m guessing this is how it works.
 
Some people seek help in reconciling this conflict between how they want to be and how they are.  People often turn to their religious institutions to find comfort in this personal conflict.  Some will rely on talking and getting feedback from family and friends.  Some people go to counselors.  All of these approaches are good.  Getting help is a very good thing.  Sometimes when we use only our own brains to provide us with feedback on our thoughts and feelings, and particularly when they are not healthy thoughts and feelings, we can reinforce a negative pattern without finding a healthy way out or an alternative.  We all need other people to help us think about ourselves – who and what we are.  This is one of the important things we do in our interactions and relationships with people – they help us to think about and to test our own ideas about who we are.  This is one of the reasons why we don’t live in caves by ourselves.   

Am I thrilled with the thoughts and feelings of self-doubt I have swirling around between my ears on occasion?  No, not really.  I’d prefer that my head be filled with the stuff that filled the brains of Gandhi or Abraham or Moses.  But then we really don’t know what those guys were thinking about before they decided to either act or talk.  So, I may feel weak, or confused, or be filled with self-doubt, but, fortunately I only get judged for my behavior.   

I have come to appreciate the responsibility I have in writing these columns and their potential value for people who can relate to the experiences I write about.  I know that by exposing my honest thoughts and feelings, no matter how uncomfortable or how human, I am helping someone who is trying to come to terms with their own humanness.   

I owe an enormous debt of gratitude to Pauline for allowing me to do this writing.  I don’t publish anything that I don’t have Pauline read first and approve.  I do this because I love and respect Pauline.  I also do this because I’d prefer for her not to put her pillow over my face in the middle of the night and sit on it. 

Pauline and I are close to being on different sides of the planet when it comes to exposing our feelings and how we talk about our experiences.  First, I have no trouble exposing almost everything about how I think and feel.  Secondly, it is a natural part of my personality and world view to be able to laugh at just about anything.  There’s a good chance that I will cry about the same things, but finding a way to laugh about them is also going to happen.  Pauline does not find a shred of humor in tragedy.  Pauline finds overwhelming sadness in tragic events.  She is often times appalled at my willingness or perhaps my need to find humor in everything.  There are times when she draws a bright line and insists that I keep my brilliant wit and charm all to myself.

We are who we are.  All of life experience is filtered through our personalities, our value systems, our life experiences, our belief systems.  Some of our filters are shared, but we all have a very unique combination of these filters through which we understand and incorporate all of our lives’ events.  No two people will perceive of the same event in the same way.  We are just all way too complicated for our own good.

Pauline is a very private person.  If Pauline were writing this column, she would tell you everything you wanted to know about our house plants or our plans to paint our garage her favorite shade of purple, or she would wax philosophic about the amazing healing powers of chocolate.  Her bowel or bladder problems?  Don’t think so.

I wrote a column in July 2000 about sexual dysfunction.  I didn’t write this article for the purpose of torturing Pauline, although if one had observed her reaction to my article, you might have concluded that this was my goal.  I wrote the article because I intimately understood that sexual dysfunction was a symptom of these neuroimmunologic disorders.  The assault on sexuality in TM, NMO and ADEM is ferocious.  (How else might one find a rational explanation as to why a woman wouldn’t be interested in sex with me?)  There are the physical problems which result from the spinal cord damage; and given that the nerves that are involved in sexual function are so low on the cord, there is the potential for significant numbers of people to be impacted.  Many of the medications people take for depression, nerve pain, fatigue and other symptoms can have the side effect of diminished libido.  And then there are all of the self concept and body-image issues people may struggle with in coming to terms with their sexuality.

I knew that the prevalence of sexual dysfunction with TM was significant.  I also knew that people weren’t talking about it.  Out of 815 respondents on the TMA survey, only a very small number identified sexual dysfunction as a symptom.  It would be hard to imagine that there is anyone in the world who speaks with more people with TM than me.  If I don’t raise the issue with people, sexuality does not get talked about.  If I raise the issue, there is ordinarily a lot people want and need to talk about.  Pauline has been cared for by some wonderful doctors over the years, and sexual dysfunction has been very rarely discussed.  I have assumed that if Pauline’s doctors were not raising the issue with her than many doctors were also not initiating this discussion with their patients.    

It was perfectly clear to me that I really needed to cover sexuality in my editor’s column.  So, I wrote the article that needed to be written.  I knew that it would stimulate people to think about and talk about the issue, and that is all good.

When I finished the article, I handed it to Pauline and I asked her to read it and to give me permission to publish it.  She finished the article and then looked at me like I had just purposely backed over Bambi in the driveway.  She then asked, “Does everyone in the world need to know about my sexual issues?”  I was holding a copy of the article in my hand and out of frustration, flipped it up in the air.  As the pages fell down around me like large snowflakes, I considered that I was experiencing the end of my stint as a newsletter editor.  If I wasn’t going to have permission to talk about sensitive or personal subjects, there was going to be little of real significance that I would be able to write about that would help people with their very sensitive and personal issues.  The best I can do is to take these difficult subjects out of the shadows and to shine a big light on them.  I want to communicate that it is normal and healthy to be thinking about these issues and to be talking about them.   

By the time it had stopped snowing, Pauline came around to accepting that she and I had a responsibility; we had to be able to expose our lives and our thoughts and our feelings.  I got permission to print the article.  Pauline is, however, always relieved when my column is devoted to begging for money.  

I do all of my writing from the perspective of a caregiver.  It is what I know.  I can’t write as a person who is paralyzed; or a person who has TM, ADEM or NMO.  The closest I have come to knowing paralysis was when I was 32 years old and got Bell’s Palsy.  I woke up one morning, and the entire left side of my face was paralyzed.  I was lucky; it only lasted for a few months.  My accommodations were not complicated.  I deftly moved the cigarette from the left side to the right side of my mouth.  (Hey, when I figured out -- with great consternation and shock -- that the concept of mortality also applied to me, I quit smoking).  My facial expressions became very confused, my speech became a bit awkward and eating was messy.  I don’t know paralysis; I know caregiver.

I have understood the importance of this sharing from the very first publication of our newsletter.  This is precisely the value of the In Their Own Words articles.  In every publication, there are people who share their personal experiences with TM, ADEM and NMO.  The sharing is invariably about the onset experience – for the reasons noted above, this is the experience people need to talk about.  We owe a tremendous debt of gratitude to the people who are willing to do this reflecting and sharing.  They, too, are taking a risk by exposing their experiences, and their thoughts and feelings. 

This is a good place for me to remind people that when you publish an In Their Own Words article in the TMA newsletter and journal, your article is printed and then posted on our web site.  It is important to keep in mind that should someone do a web search using your name, your In Their Own Words article is likely going to come up in the search.  There is no way to convey the incredible value these articles have for people who read them when they are published, and the value they have when people find these stories on the internet when they are searching for information about TM, ADEM and NMO.  Just think about it … when you got TM, NMO or ADEM, what would it have meant for you if you had the opportunity to spend a few days reading about people’s onset experiences?  Yeah, it would have been the same for Pauline and me.  We would have been totally freaked out, but we would have been relieved to know that we weren’t alone.  And most of these articles provide contact information, so we could have reached these people to talk to them.  What an incredible blessing.  And these people will serve as this wonderful resource for many years to come.  I hear from people over and over again that they spend many hours on our web site reading the In Their Own Words articles after they find our web site.  People who write these articles give up some privacy by sharing their experiences, but what they give in return is a remarkable act of kindness to people who are newly diagnosed and their loved ones. 

I use the editor’s columns to introduce new or important ideas or programs to our community.  I also use these columns to ask for your financial support, because it is imperative that I remind you that we can do none of the important work that is being accomplished without this support.  But the most important goal I have in these columns is to help you to better help yourself.  My editor’s columns are meant to provoke your thoughts and to encourage you to share your thoughts and feelings with the people who care about and love you.  Or to share your thoughts and feelings with your physicians and other medical professionals who are responsible for your care. 

So many of the symptoms of these disorders are not just physically challenging; they are also socially, emotionally and psychologically challenging.  By raising these issues, I hope to light a spark of motivation for you to become more informed and to more aggressively advocate for better treatment of your symptoms or to help you find a way to a more positive place for yourself.  I know that there is some relief in knowing that someone else is confused or anxious or frightened or angry.  It helps to know that what you are going through is a shared experience.  It is also my hope that by talking about subjects that I know some people have a difficult time with, we can help people to think about and talk about these issues.  And it is my most fervent hope that people will use these discussions as motivation to seek help with issues that are beyond their personal abilities to manage or resolve for themselves.   

Pauline’s and my journey has been difficult but it has also been exhilarating and wonderful.  I do the best I can to manage my self-doubts and my fears.  Do I fail my conception of myself?  Yes.  I am most definitely not the person I want to be for Pauline all of the time.  But I have a better sense of the divergence between who I want to be and who I am and the work that I need to do to close that gap.  Will it ever be totally closed?  Well, probably not.  I just keep telling myself, the gap is what makes me so irresistibly charming.  I have no doubt that Pauline sees the gap as looking more like the Grand Canyon and which makes me so incredibly annoying.

We are blessed.  Mine and Pauline’s relationship is stronger and more positive than it was before she got TM.  We respect each other more, we have a stronger bond, and we have deeper feelings for each other today than we did twelve years ago.  We also have a more focused and shared set of priorities in our lives, i.e., the hundreds of my small behavioral quirks don’t irritate her so much; it is the four or five major character flaws that have become the focus of her unwavering attention.  Hey, I’m evolving as fast as I possibly can. 

The emotional journey of our relationship has not been a straight path from there to here.  We’ve been everywhere; from the dark and difficult to peace and contentment and everywhere in between.  It has been and it remains a very human journey.

Please take good care of yourselves and each other.