He knows about teeth, but…

When my grandmother Agnes, whom I called Nana, was in her 90s, she developed a dental problem that required surgery. She found a dental surgeon near her home who accepted her insurance and arranged for my mom to drive her to the appointment. On the day of the appointment Mom helped Nana down the hall and out the front door of her assisted living complex, got her and her walker into Mom’s car, and took her to the doctor’s office. There they found that at this doctor’s office, teeth would be the least of Nana’s problems.

Mom tells me about it: “We went up the elevator and then into the office, and there were two wide steps down. When we turned the corner, there were two more steps down.” For Nana this was a huge obstacle. She had had both hips and both knees replaced and walked with difficulty, even with the help of her walker. Mom remembers those four steps vividly: “She was not about to change her plans and see another doctor. She was moving forward! I just kind of held her around the waist while she went down. It was scary. She could have fallen. We both could have fallen! If she was in a wheelchair, we wouldn’t have been able to get to the doctor” at all.

“I asked the receptionist about another way to get to the doctor’s office,” Mom tells me. “I was greeted with a blank look—‘Huh?’—and then a strong answer, ‘Oh, there is no other way!’”

Once inside the examination room, Nana faced a different obstacle. After the doctor examined her, Mom remembers, he “looked at me and started telling me all about her mouth.” Nana was perfectly capable of conversing with and understanding the doctor; more importantly, she was a human being entitled to respect. White in her wavy hair and arthritis in her knees and hips had affected neither of those facts one bit. “I tried to redirect him,” Mom says. “I’m kicking myself now that I didn’t say forcefully, ‘Talk to Agnes. She’s your patient.’”

But Mom didn’t say that, and the doctor kept talking to her rather than Nana. Nana didn’t ‘fuss’ either. The surgery went forward, and Nana had her dental problem fixed. The other issues were never addressed.

Mom sighs with shame and defeat. “I guess he was a good dental surgeon, and he was in [her area].”

I want to believe society is changing. Nana is gone now and will never see it. But I want to believe that when Mom is in her 90s, she will be able to go to a doctor that sees her as a whole person, not just a broken body part.

A son and a father: Movement and laughter

Twenty-nine-year-old Josh is standing in front of the mirror at the YMCA gym, doggedly lifting his knees in turn, up and down, up and down. He is supported in this effort by the braces on his legs and his father Ross, standing behind Josh with his arms wrapped around Josh’s chest. Ross is the executive director and founder of AccesSportAmerica, a non-profit organization that uses sports to inspire higher function in people with disabilities. Other AccesSportAmerica athletes are also in the gym, working with other AccesSportAmerica trainers; today Ross is helping his son, his inspiration, while I stand by with my notebook.

Josh is telling me about something that happened recently: “I open the van, open the door with my hand. My hand open the door. I can’t get the van to go down and then up.” He does not make eye contact and seems intent on his exercise routine. His voice, like his gait, is somewhat jerky. The words are clear, but I am not sure what they mean.

Being Josh’s translator is obviously a role Ross is used to and comfortable in. As he helps Josh exercise, he explains easily: The lift in the wheelchair van Josh rides in has been having mechanical problems. Damien, who works with Josh, has been working on fixing it.

“He helps with the van?” I ask Josh, hoping the prompt will get him to tell me more.

“Yeah. The van went down and up. Black van.”

Josh finishes his mirror exercises and we start towards a leg press. Ross talks enthusiastically, apparently undistracted by constantly watching and supporting Josh’s movements. “Josh did some exciting things this year,” Ross tells me as we walk, his muscular arms still around Josh’s chest and his front pressed to Josh’s back. Josh walks with strength and determination, making his way across the room. When we reach the leg press, Ross helps Josh sit on the machine and move his brace-supported legs. I perch on a nearby piece of equipment, notebook and pen in hand, to watch and listen. I am impressed by Josh’s power and stamina; I am not sure I could work so hard for so long.

Among other adventures, Ross tells me, the family visited Josh’s sister, who lives in Hawaii. “We go surfing in Maui. Josh really enjoys that. Right, Josh?”

Josh’s comment on this story: “Trip. Trip. Trip. Trip.” He gestures as he speaks, with jerking, almost violent movements of his arm. It seems to me that he has something to say but cannot form the words, and that this is incredibly frustrating for him. I wonder what is happening in Josh’s mind, what stories and insights he has that I am not hearing. Ross doesn’t seem to have this difficulty; his relationship with Josh is so close that he seems to have a window into his son’s thoughts that is closed to me.

Returning to the topic of Josh’s wheelchair van and other vehicles, Ross asks me if I have a car.

“Yes, I do,” I tell both of them. “I drove it here today. It’s black too, like your van, Josh.” I hope that Josh might show interest in this detail, but he seems very involved in pumping his legs and does not comment. I drop the subject.

Instead we talk about another recent adventure. “I raced in the marathon,” Josh tells me.

This was an AccesSportAmerica marathon, a mile and a half long. Josh made it in an hour and a half with Ross assisting only by holding one hand, Ross tells me with pride.

Josh does not express pride nor any other emotion about the marathon as a whole; he is focused on a detail of the memory: “I hurt my leg,” says Josh. “I had a band-aid.”

After Josh leaves the YMCA in the van with his helper, Ross invites me across the street for a slice of pizza. He tells me that Josh has aphasia, a condition that makes language difficult. “There’s a lot more to Josh than he expresses,” he says. “Each day he says something or points out an issue which surprises me about how ‘in-tune’ and perceptive he truly is. For all his cognitive challenges, Josh is one of the wisest people I know. He can laugh when we are stressed.”

Before Ross returns to complete his work day with the other athletes at the gym, he chuckles and says, “Josh is going to talk about your black car tonight. That’s the kind of thing that matters to him.”

I stay sitting in the restaurant, going over my notes in preparation for writing this article. One moment stands out in my memory:

Ross’s capable hands helping him, Josh is using the leg press. Ross is telling me about Kim, Josh’s speech therapist. “She farts in front of Josh,” Ross confides. Josh laughs unconstrainedly at the universal humor of fart jokes, mouth open, eyes lit up with delight. Ross and I laugh too, and I see the love shining in Ross’s open face as he looks at his joyous son.

For more information on AccesSportAmerica, see http://www.accessportamerica.org/.

“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.