Janet’s Room –>

Janet’s white hair frizzes untidily; her face is lined with wrinkles that frame eyes scared and confused. “Where am I?”

“You’re in a hospital,” the other woman tells her soothingly.

“I want to go home!”

“You can’t go home right now,” says the other woman. She can’t go home either; both are currently patients on a locked unit of a psychiatric hospital. For them, for now, this hallway of bedrooms and one dayroom, with locked doors on either end, is the whole world. “You need to stay. You’ve been here for three days.”

“I have?”

Still calm, soothing: “Yes. We’re drawing. Do you want to join us?” She guides Janet to the table in the dayroom, where the staff have provided coloring books and colored markers for the patients on this adult unit.

Janet sits at the table, picks up a marker, and inspects it as if it is a strange artifact. “Is this the pen you use?”

Over the last three days, Janet has earned the resentment of both patients and staff. Patients don’t like her because when the payphone in the hall (that connection to loved ones and support outside these walls) rings, she answers it and then hangs up if it isn’t for her. Staff do the bare minimum of their duty towards her, frustrated by having to tell her every five minutes where she is and why they’ve put her purse in a locked cupboard. They’ve put signs up all over the walls: “JANET’S ROOM –>” but it doesn’t help.

Only that one woman never loses her temper with Janet. Surely she has her own story of why she’s here—terrifying voices and beliefs she isn’t sure she can trust to be real? crippling suicidal depression? memories of unspeakable trauma? No one knows what her story is; she doesn’t share.

But whatever her personal agonies, she never lets them tinge the kindness with which she treats Janet. Every morning, when Janet wakes up terrified in a strange bed, this fellow patient tells her where she is, and how to use her plastic fork to eat her lukewarm breakfast. When Janet cries that she misses her husband, the other woman tells her about his visit the day before.

“Did I kiss him?” Janet asks.

“You sure did!”

And Janet’s face lights up with joy.

Advertisements

“I keep on going”: Getting through subway entrances and life

Once Claude and I are settled in her home office, I offer her the bottle of spring water I brought. It is Yom Kippur. When we had arranged to talk on this day, she mentioned that ordinarily in her tradition she would neither eat nor drink on this fast day, but that she has to drink water for medical reasons. She makes this concession but still keeps the fast in her own way by not eating. I soon learn this is typical of Claude: She does not resist doing what she must to deal with her illness, but neither does she let it interfere with her life one inch more than necessary.

She takes the water with thanks, pours us each a plastic cupful, and begins her story.

Claude was diagnosed with secondary progressive multiple sclerosis 15 years ago, when she was 35, just three years after she moved to this country from France. “As weird as it can sound, I was relieved because it showed that I was not completely nuts, that I was not just imagining. My mother used to call me Miss Catastrophe. My specialty was losing balance, just because the crack in the floor would be for me and I would zoom!

Claude briefly explains multiple sclerosis for me by comparing nerves in the human body to electric wires: “You take an electric wire. You have a plastic coat around it to avoid short-circuit and prevent people to burn themselves. My body has decided that this coating is a foreign body and must be attacked.” She says that besides being physically debilitating, it is extremely painful. She does not dwell on this subject.

Many people with multiple sclerosis are not visibly different from anyone else. Looking at a stranger, you cannot tell whether they have multiple sclerosis or not. There is no known cure.

Claude herself uses a walker and a wheelchair at home and an electric scooter outside. She is very fond of her scooter. “My scooter is my legs. I go out without any worry or shame.”

Not far from Claude’s home is a subway station. Since she cannot drive, and her scooter cannot go far due to limited battery life, the subway is a primary method of transportation for her. The elevator in this underground station has been broken for over two years, she tells me. Claude does not allow that to deter her! She tells me of driving her scooter down the tunnel entrance intended for buses, the one marked “No pedestrians.” “The bus drivers, they know me,” she says. “I’m bold.” She pulls out her French/English, English/French dictionary and quickly looks something up. “Yeah, that’s what I am. I’m bold. I’m proud. I do things on my own. I am not someone who is going to be stopped by a disease.”

She also takes public buses. When a wheelchair or scooter user is a passenger in a bus or van, it is vital to their safety that their wheelchair or scooter be strapped down properly. The local bus drivers do not always do this, Claude tells me. “What should I do, clutch the bar, ‘Oh, oh, oh! I’m going to die!’? No.” She calls the MBTA authorities. “You report exactly what happened. What he didn’t do, and how endangered you were.”

She refuses to feel sorry for herself, or to let anyone else feel sorry for her. “My life is a little bit different from most people. I have more physical struggles. But let’s be honest: I’m blessed. I have health insurance. My husband has a job; I touch wood. Do you feel sorry? Come on! I’m blessed! You cannot say, ‘Poor Claude.’”

She is not always able to put on such a brave face. “I fall down. I cry. I cry and you won’t stop me, because life is not fair.” However, she adds, “I don’t want to talk about those moments. Carpe diem. You live on a daily basis and you try to have as much fun as you can, because you don’t know what the next day is made of. The next hour. I have always lived like that.”

Carpe diem—Latin for “Seize the day.” So what has Claude chosen to do with her days? “I said to myself, ‘Claude, you’re tired; you’re sick; it’s going from bad to worse—actually, from worse to worse. Why not do something you’ve wanted your whole life?’ I ended up doing my dream, which was writing.” She is currently working on a fictionalized history of her grandmothers’ lives. “I write for my son. I want to leave him something. I would like him to know about his heritage. I want him to have a sense of what it was and where it was. Also, I want him to know that his mom could be funny. I want him to find me in these writings.” She gestures to the tower of papers on her desk.

“Some people just give up and expect others to take care of them. ‘Oh, poor little me! Look what life is doing to me!’ This is beyond my understanding. The other solution is to keep on going. So I keep on going.”

“Family should be a safe place where you could have your worst days and still be loved.” -An interview about depression and family

“I was pretty sure his depression hadn’t passed, and he was on acting mode now.  I wasn’t sure how I felt about it.  Mum once said he trusted us and needed us to be ok with things; that’s why she put up with a lot.  Family should be a safe place where you could have your worst days and still be loved.” 

T. J. Wooldridge wrote the above passage about a character struggling with bipolar disorder in her new book, The Kelpie. (Available everywhere books and ebooks are sold December 2013) I include it here to introduce the following interviews with family members of a woman who lives with depression. They kindly agreed to be interviewed on condition of anonymity. N also agreed to the project on the same condition.

N’s immediate family is composed of her mother, father, younger sister, younger brother, brother-in-law, niece, and nephew. Her depression manifested when she was a teenager, went into remission with the help of medication for several years, and then reappeared. During the remission period, her sister married her brother-in-law, so that when her illness resurfaced, he had to adjust to what the rest of the family already knew well. Frequently, N’s depression worsened to the point that she experienced suicidal thoughts, which led to stays in psychiatric hospitals.

I met N’s father at a conference, and I told him that I often write blog posts about disabilities, especially invisible ones. He shared with me some stories of living with N and spoke movingly of the need to educate the public on this topic, which is too often stigmatized and hushed up. Our conversation ended with his suggestion that I interview his family about their experiences living with N and her illness. I am very grateful to all of them for being so open with a stranger on such an intimate topic.

N’s parents talk about the challenges of parenting a child with mental illness.

Mother: There we were, lying in bed, and the police officers came in and flashed their flashlights at us and said, “Your daughter is suicidal and we’re taking her to the hospital.” Such an invasion of privacy! Robotically, I got out of bed and dressed and went to the hospital. I didn’t have feelings until later. I had a job to do: I had to make sure N was safe.

Father: Having a daughter with depression is more challenging than I knew child-raising could be. We were constantly scrambling to play catch-up with a changing situation as it unfolded.

Mother: My daughter would cry at times at night in her room, and couldn’t explain why or what made her sad, and for me it was such a helpless feeling. I didn’t know how to help when I didn’t know an event that made her sad. There was just tears and sadness coming from inside. I never gave up the hope of understanding her, but there were lots of times I just didn’t get it. I couldn’t connect with my own daughter. It was a very, very lonely feeling.

Her siblings and parents had to contend with the fear and knowledge that N might harm herself.

Brother: The whole thing is twisted by my age at the time. I didn’t know what was going on. N used to ask me, “If you were going to kill yourself, how would you do it?” I didn’t know that was an unusual thing to talk about with your big sister.

Mother: I got a phone call from one of my daughter’s friends that my daughter had talked about suicide. I called the doctor; she told me to take my daughter to the hospital and she would be checked out by a process that I knew nothing about. That’s when I was told that she’d been self-injuring—she’d been cutting herself—and she was exhibiting signs of depression. I felt like I was in a strange country. I didn’t know the language. I didn’t know the people. I didn’t know what to do. I’d never heard of cutting. I was—I’m sure I still am—very naïve.

Sister: I remember when Mother and Father sat Brother and I down at the table and told us that N had written a friend a note that said, “Please don’t let me kill myself.” It was very scary and shocking, but I didn’t quite believe it. Like, really? As a kid, you adapt. I remember all the knives in the kitchen were locked up, which is pretty odd, but that just became the norm. We had to have these different little things. It became my life.

Father: It got to be that at the end of every day, exhausted from not sleeping well the night before, she’d have long, tearful phone calls with friends, in her room with the door closed. We’d wonder if she was okay and want to check on her, and especially wonder if she might have tried to kill herself. But if we tried to check on her, we might wake her up and make things worse. So that was really hard, and made it really hard for us to go to sleep and get a good night’s rest.

Father: There’s this possibility that’s always there that her suicidality will drive her to terrible action. It’s relentless. You have to stay with it and you can’t relax. It can be tremendously discouraging. You don’t see if it can ever end.

Mother: Gradually the illness, for want of any other word, blossomed. Things were coming out in the open that I hadn’t even known about. There were upsets; there were angry times.

N had to be hospitalized nine times in less than two years.

Father: I remember getting a call at work from a hospital that I didn’t know, saying that N would be admitted to a psychiatric ward. It was just startling. I’d never been to a psychiatric hospital. I didn’t know anything about it.

Brother: I remember the first time we visited N in the hospital. I wasn’t old enough to come in to see her and it kind of pissed me off. Come on, I came out to see my sister and I want to see her!

Mother: We’d all come to see her; we’d bring the other kids; but oh, it was just so hard.

Mother: One time I took her to the hospital by myself. I just fell over crying. I just couldn’t function. The nurse held me. She said, “She’ll be okay. We’ll take care of her.”

Brother: I do remember N leaving at one in the morning in an ambulance one or two times, and being told, “Why don’t you go back to sleep now?” And I’m like, “Really?”

Mother: We tried to keep the other kids’ lives relatively normal. In a way, we stopped paying so much attention to the two of them. To this day I don’t know how they felt about that.

Mother: Such a busy time. It felt like we were living three lives at one time. It seemed like there was always something new around the corner that you didn’t know what to do with, but you just did the best you could.

When the depression worsened again, N’s brother-in-law and her niece and nephew had to deal with the fact that N had an illness.

Brother-in-law: I loved N as a sister. When she got sick again I was really scared. I’ve never known someone with depression, not to the extent of harming themselves or getting so sad.

Brother-in-law: I don’t know how hard it is on her. I just know how hard it is on everyone who loves her, because I’m one of those people. It didn’t seem right for someone I loved to go through that.

Sister: Bringing Niece to the hospital didn’t feel like a huge deal to me. We talked about how she wouldn’t catch what N had. She was just like, “Oh, okay.” N having this thing is just a part of my life. Bringing my daughter is the next step. N’s in the hospital and I wanted to visit her so I brought Niece.

Sister: N watching Niece, the whole babysitting part, that’s a little…I don’t know if scary is the right word. That unknown: that you can’t 100 percent depend on what might happen. It’s not N. She’s 100 percent dependable. It’s…unpredictable, I guess is the way to put it.

Brother-in-law: Now that I’ve seen a glimpse into something, there’s always a little hesitation with Nephew and Niece, to be honest.

Brother-in-law: But getting to see the N in her, getting to see the N I knew. It’s almost like there’s a stranger in her. A stranger that’s just so sad. And that’s what I’m hesitant about. I didn’t know that person.

N’s illness has made the family realize the strength of their bonds to each other more than they might have otherwise.

Mother: A turning point for us was in our Christmas letter. We wrote, I think “manic-depressive” was her diagnosis at the time. That brought letters from family and friends who either knew something or just wanted to offer their love. And that was wonderful. But we were also left with how to help N and that wasn’t clear at all.

Brother: In general, when someone is continually sad living with you, you take some on yourself. And I’m sure N takes some on herself.

Father: At times we can’t help but see it as some people expect: that this person is choosing to make her and our life difficult and to some degree it’s her fault. But if you’re close enough to it, you know nobody chooses this, that it’s an affliction that strikes. You feel motivated to help, the same way you would if your daughter had been struck by a falling tree or any other calamity.

Sister: It changes your perspective on mental illness. My perspective is definitely different, more understanding, because I have someone in my family.

Brother-in-law: I don’t know if it’s because of the depression that N has become closer to her family than most.

Father: That sense of family is strengthened by the shared struggle to advert this threatening thing.

Brother-in-law: I’m really happy she’s my sister. I married the family; I didn’t just marry Sister.

Sister: We all still love her.

Father: Is there any limit to how much a parent loves their kid? I mean, we’d do anything.

Mother: I don’t love her even though she’s sick. I love her because she’s who she is. I’ll love her no matter what.

Angels

“You’re such an angel,” the woman said to me.

What had I done to earn such a compliment?

And why did her compliment make me so angry? Outraged.

I had arrived at work that morning and let myself into the residence where my five clients lived. I waved hello to my coworkers, busy with paperwork and other chores, and the clients, sitting in the living room. The notes from our program director said that two of the clients were planning to go to Dunkin’ Donuts for breakfast that morning. It was one of my favorite things to do with the clients: go out for meals and just hang out together.

My coworker and I got the two clients into the wheelchair van and down to the local Dunkin’ Donuts. Other customers kindly held the doors for us as we maneuvered the wheelchairs into the restaurant. We got the food and money all figured out and arranged the chairs (two restaurant chairs for my coworker and me; two empty spots at the table for the clients’ wheelchairs) so we could all enjoy our breakfasts.

I bit into an egg-and-cheese sandwich. My coworker spread cream cheese on a bagel. One client ate a donut. The other tried to lift a cup of lukewarm coffee to her lips and spilled it all down her shirtfront.

It happened sometimes; her hands weren’t always steady enough to hold drinks level. I was ready. I jumped up with napkins in hand.

I was helping her get cleaned up when the woman at the next table over spoke. “You’re such an angel,” she said to me.

At the time, I was simply confused. An angel? For not making my client sit in a puddle of coffee? For having breakfast with her? Or was this woman saying that my choice of profession somehow made me an angel?

I think I muttered, “Um, thank you,” avoided eye contact, and wondered why her well-meaning compliment made me feel angry.

That was over a year ago, and I have had a lot of time to ponder the possible meaning of that brief statement. Is there something angelic about helping someone drink a cup of coffee when that person is unable to manage the cup on her own? Is there something angelic about deigning to hang out with a disabled individual? Does doing my job (for which I do get paid, after all) make me an angel?

It’s the second possibility that makes me angry. It’s as if that woman implied that disabled folks are so difficult, even unpleasant, to be around, that anyone who sits with them and munches on an egg sandwich must be of a higher order.

And she implied this right in front of them, as if they couldn’t hear, or understand, or feel insulted.

And apparently thought she was paying me a compliment, performing a good deed, by doing so.

I was outraged on my client’s behalf.

Months after this event, I developed a health problem and had to take medical leave from work. In accordance with the federal Family and Medical Leave Act, I arranged to leave work for three months, after which I hoped to return with a doctor’s note saying I was fit to resume work.

It was a hard three months. I was used to taking clients to doctor’s offices; I was not used to being in a doctor’s care myself. Gradually I got used to the idea that I now had a disability. I endured tests, medications, and a hospitalization. A family member had to take FMLA from her job to help care for me, for which I was grateful and ashamed. Every day was a struggle, medically and emotionally.

After three months, I returned to work, note in hand. It said that I was fit to resume, but cautioned that due to a medical reason I should not do the overnight shifts I had been doing previously.

A coworker welcomed me back and asked if I would be doing all my old shifts again.

“No; my doctor says I shouldn’t do overnights any more.”

She threw her head back and laughed. “Doctor?! You’re not sick!”

Again, I was confused and not quite sure why I felt angry. I immediately invented an excuse to leave the room.

This time I was offended personally.

So. We have people in our society who are obviously, visibly disabled, and some people seem to think they can’t hear or understand what is said around them. And we have people like me who, while following doctor’s orders and trying to act “normal” in public, are outright laughed at when they share that they have medical limitations.

Where do you fall? Are you visibly disabled? Or perhaps you look “normal,” but some things are hard or even impossible for you: walking up steep stairs, seeing things in your peripheral vision, eating nuts. Or perhaps you are one of the lucky few who is able to do everything you choose to do, and struggle to understand the rest of us.

If we stumble along together, without drawing lines and ostracizing people, does that make us all angels? If so, there are an awful lot of angelic people.

Or maybe treating a differently-abled fellow human with decency should be simply required, part of being a member of the human race, and the word “angel” should be reserved for those who have in fact done something special. Which I have not, that woman’s well-meaning compliment to the contrary.