Hang out at a rehab hospital for any amount of time and you’ll probably overhear some iteration of the following comments: “He’s paralyzed and needs to use a wheelchair — of course he’s depressed! What do you expect? Who wouldn’t be depressed?”
Conventional wisdom, which is widespread and dies hard, holds many misconceptions regarding the emotional repercussions of SCI. Think of it as the social construct of SCI that the general public — and many wheelers — buy into: Paralysis is a fate worse than death, and if you’re not depressed, you must be in denial. Those beliefs often accompany popular notions regarding mental-health therapy: that it doesn’t work; it’s for the weak; and mood-altering drugs don’t do any good, either.
The problem is that depression is often like beauty and contact lenses: in the eye of the beholder. It’s a term that’s bandied about and used cavalierly and generously to describe moods ranging from the blues to serious grieving, anxiety, loss, bereavement, despair and clinical depression.
“The DSM IV — Diagnostic and Statistical Manual of Mental Disorders —doesn’t really apply very well to SCI,” says Lester Butt, head psychologist at Craig Hospital. “So many of the criteria normally used to define depression, especially the physical variables, such as weight loss, fatigue, loss of energy and psychomotor retardation [slowing down of thought and reduction of physical movements], are symptoms that most everyone experiences immediately following SCI. Some symptoms may be tied to medications. But clinical depression is very different from loss, grief or bereavement. As a result, I look for cognitive markers such as helplessness, hopelessness and worthlessness, all of which, I’ve found, are far more indicative of significant clinical challenges.”
Hopeless, as in nothing will ever change and things will always be this bad; helpless, as in I have no power to change things and make them more tolerable; and worthless, as in this is all my fault and I probably deserve it.
So just how prevelant is depression after SCI?
“Figures vary,” says SCI psychologist Toby Huston of Craig’s Rocky Mountain Regional Spinal Injury System team, “but if you mean clinical depression, somewhere between 11 percent and 30 percent. If you’re talking about grief and mourning masquerading as depression, then it’s more like 85 percent.”
And depression can show up at any time: in rehab, several years post-injury or decades later. Think of depression as a gift that SCI can keep on giving. Then take heart that there are effective ways of dealing with it.
Depression Following Injury
Keith Sackin says he was diagnosed as clinically depressed while in Shepherd Center for his initial rehab 10 years ago, following a fall from a third-floor balcony.
“I couldn’t sleep, had night sweats and regular panic attacks, and next to no energy,” the 30-year-old T10 para and professional photographer reports.
“I felt like I was grieving. I had lost a huge part of my life, and it felt absolutely earth-shattering. I was constantly worried about the future, how I would take care of myself, how I would do in the world.”
Sackin’s situation was complicated by chronic pain and the medications he was taking to deal with it. He says the first three months were the most difficult for him and credits a combination of meeting with hospital psychologists and a regimen of SSRI inhibitors — basic antidepressant and anti-anxiety medications — with taking the edge off the worst of it. Once out of rehab, he traded the Percocet and Darvocet for ibuprofen, Neurontin and relaxation exercises.
“After rehab, I continued in the Shepherd Day Program. I learned how to drive and began running errands. I gained more control of my life. I also continued to see a therapist.”
Sackin says he stayed in therapy for a couple years, as he found talking about his feelings to be helpful.
“Toward the end I began to slack off, not going as often, and eventually decided that everything was good. I had some anger issues at first, a lot of it directed at myself. I blamed the injury on my own carelessness in slipping and falling over the railing. Initially, I was in a bad mood, but not toward others. Mostly it was self-directed.”
Many people may be reluctant to see a therapist, either believing that doing so is a sign of weakness or being uncomfortable sharing intimate life details with a stranger. Having been a psych major at the time of his accident, Sackin says he had no issues with the intimate aspects of therapy, though he did run into problems regarding insurance coverage.
“Therapy can be quite expensive, and I was worried about future coverage and if later a ‘pre-existing condition’ would come back and bite me.”
This Too Shall Pass
Huston has found it not unusual for people to need case management as much as therapy as a way of escaping the rabbit hole of being so overwhelmed with problems and difficulties.
“Using the Western medical construct, we have to pathologize conditions, so we call it depression,” he says.
“If we have no time to do talk therapy, we prescribe drugs. What people need is time.”
Time to deal with all the problems that normally contribute to the social definition of depression: figuring out how to navigate the system, accessing resources, connecting with other people and finding support, identifying funding sources and getting transportation in place.
So perhaps people would be just as well off going to an independent living center as a therapist?
“Possibly,” Huston says. “It depends on the person. Some need treatment for depression, some need the connections an ILC can provide, and some need both.”
That description could well fit Maryanne McCauley of St. Peters, Mo., who became disabled four years ago due to a spinal clot.
McCauley was given the antidepressant Lexapro during rehab after reporting feelings of fear, confusion, anger, mourning and “generally trying to put on a brave face and attempting to suppress any negative emotions. It was hard because I felt so scared and alone in rehab, 200 miles away from my teenage son and my father. They recommended that I see a psychologist when I was discharged, but I found that thought too depressing.”
Things didn’t get much better once she got home to a non-modified living space. She continued with physical therapy for a couple of years, until return of physical function plateaued.
“This past year my dad, who has helped me a great deal, began having health problems of his own, so we decided to move to Missouri where he could have more family help. Since we got here I’ve struggled with getting things in place: the Medicaid bureaucracy, doctors, bowel program and such. I have a lot of anxiety and feel like a burden. Basically, being disabled sucks.”
McCauley’s litany of complaints and problems — not unusual when people plateau physically and then have to face unrelenting everyday reality — sounds ready-made for case management and a good independent living center worker to help with securing needed services in a new community. But sometimes a proactive decision or unexpected change in circumstances can turn the tide.
“Last December I got a service monkey,” McCauley reports. “She’s very entertaining and doubles as my shrink. She’s quite therapeutic.”
Facing Temptation to ‘Pull the Plug’
Nick Pearce had the world by the tail in the fall of 2009. He was a middleweight mixed martial arts/cage fighting champion with a girlfriend on his arm. Then he broke his neck in a training accident in South Dakota. He showed up at Craig Hospital in Denver a couple of months later with a nasty bedsore that hampered rehab. That’s when the girlfriend split, leaving with no explanation other than what he calls, “the obvious.”
“I spent about six months in the dark alone healing that sore. I went through most of the rehab on my own with little to no support from my family. I went from a middleweight champion with a girlfriend to being alone and paralyzed in a hospital bed. I actually went online and ordered Nyquil and Tylenol PM in order to try to finish myself off.”
Because the Nyquil bottle broke during shipping, the package had a recognizable odor when it arrived at the hospital, and his plan was foiled. Initially on a vent, Pearce managed to text his brother, asking him to come to the hospital and pull the plug for him, saying “I don’t want to live like this.”
“I was truly in the depths of despair. Those ‘thought monsters’ will get you and eat you alive. I kept looking at that overhead lift in my room, thinking of ways to end my misery. It’s scary to be thinking those thoughts.
“They had me try many different antidepressants while in the hospital. I’m not sure if the pills worked, but the psychologist I saw there sure helped a lot. He understood the injury as well as anyone who’s not in a chair can. Having someone to talk to helped a great deal. He didn’t judge me, and he let me vent and talk about my fears.
“The absoluteness of the injury was what scared me the most. Cage fighting had helped me turn my life around, but now I felt like it was all over. All I kept thinking was, ‘I blew my shot.’”
Pearce says the hardest thing for him was going from physically fit, macho fighter to living in a chair and trying to be around other men.
“So many of these guys in rehab were doing so well and acting like being in the chair didn’t bother them. For me, being in a chair was all I was thinking about.”
Sexuality complications didn’t help matters any. Initially he saw the staff psychologist several times a week, then once a week, and still stops to chat and catch up when he runs into him during hospital visits. But he’s slowly putting his life back together: He’s back into contact sports, playing rugby (“being around other quads is soooo good”), and is living with a new girlfriend, whom he met while in rehab. He will start attending college in fall and is looking forward to getting back to driving.
“I don’t want to go back to that [mental and emotional] place. I’ve put in too much work to give up now. I’ve found something valuable in my life to live for. Having someone who’s a professional to talk to was really helpful and made a difference.”
Drugs or Therapy?
Sackin’s and Pearce’s experiences with talk therapy and drugs are fairly common and raise the question of which one is more effective.
“To be honest, I’ve been underwhelmed with the effectiveness and utility of the sole usage of psychoactive drugs,” Butt says. He asserts that talk therapy, or talk therapy used in conjunction with drugs, is far more effective than drugs alone in bringing about emotional stability. He describes therapy following SCI as “coaching people to access internal strengths and external resources, along with teaching some fundamental skills.”
The “go-to” therapeutic approach is often cognitive behavioral therapy. CBT is based on the idea that feelings are the result of thoughts and beliefs (cognitions). Advocates of CBT posit that if you can change the way you think about things, you will change the way you feel. Good therapy emerges from the idea that depression improves when people are more engaged in meaningful activities and when they regain their positive beliefs and attitudes about themselves, their world and their future.
But first they must express their fears and be honest about their feelings. “Often I see people here who are busy taking care of their family, being psychologically strong for them and not wanting them to know how they’re truly feeling,” Butt says. “Sometimes what they need is to be forthright as to how they see their circumstances. One’s willingness and ability to verbalize concerns within the context of a trusting therapeutic relationship is where the effectiveness lies.”
Doubts and uncertainty need to be openly expressed. “People don’t want their families to hear them say, ‘Maybe I’d be better off not being such a burden. Maybe it would be better if I wasn’t here.’ But they can feel safe and get some relief saying that to a therapist,” Huston says.
Blinded by the ‘Black Cloud’
Fourteen years ago Deborah Krotenberg, then 30 and two years into living with a C5-7 injury, had been working full time and was quite proud of how she was doing. Then, one day, while driving along the highway next to the concrete median barrier, it occurred to her how easy it would be to flick her wrist, hit the barrier and perhaps take herself out.
“I didn’t know where the hell that came from,” she says. “I spoke to my sister, who’s a school psychologist, and she told me to tell the therapist I’d been seeing — quickly! — and suggested I get on an antidepressant. Krotenberg’s psychologist immediately suggested a drug regimen of the antidepressant Zoloft.
“About two weeks later, the black cloud lifted and I began to feel a bit better.” She remained on Zoloft for a couple of years before switching to a different antidepressant, which she continues to take.
“At first I resisted an antidepressant because I figured that the drugs would make me go around with a smile pasted on my face, but that hasn’t been the case. My sister suggested that I was questioning her experience, education and professional training, so I gave the drugs a try. I didn’t even realize that black cloud was there. Up until then I was getting stronger, gaining more independence and generally improving. Then I pretty much plateaued and realized that this was it.”
She had been seeing a psychologist for some time, and says the weekly sessions helped her adjust to life on wheels, providing a safe place to go and mourn. “Up until then I had been putting on a good face for everyone to see.” Possibly that face she feared the drugs would give her.
Krotenberg continued with therapy for a number of years, for the most part addressing various adjustment issues. “The last hurdle was dating.” Eventually she realized she was talking about the same issues over and over, so she stopped going. “Therapy taught me a great deal about myself and gave me tools,” she says. “The biggest one was learning to not blame everything on the injury.”
Though Krotenberg was never formally diagnosed with clinical depression, thoughts of suicide or self-harm are a key indicator and should not be ignored. Other signs include feeling sadness throughout the day, nearly every day; loss of interest or enjoyment in favorite activities; feelings of worthlessness; excessive feelings of guilt; or trouble concentrating.
Will Depression Go Away if Left Alone?
Some may feel that depression will run its course and they just need to “get over it.” Untreated, depression can severely affect a person’s ability to function in day-to-day life, making pain worse, sleep difficult, sapping energy, taking enjoyment out of activities and causing difficulty in health maintenance. Thoughts of death are common in depression and the risk of suicide is higher while someone is depressed. Untreated depression can last as long as six to 12 months or more.
Then again, as people gain more control and essentially “learn how to be disabled,” they gain self-efficacy and self-esteem. Their mood elevates and their locus of control shifts as they gain more confidence and control of their lives. That’s where the passing of time combined with therapy — or a good independent living center — can help.
The therapist helps clients find or resume meaningful or enjoyable activities and provides support much like a coach to help resolve problems. Doing so also helps in recognizing how thinking becomes more negative in depression and how, through experimentation and logic, the client can improve outlook and build confidence.
Our vulnerability to depression extends far beyond those first few years and well past any plateau stages. I still vividly recall a conversation with my wheelchair “guru” a couple of years after my injury. “I went through two periods of depression,” he told me. “One shortly after I was injured, and another, about 20 years post-injury.”
How to account for depression so long after injury? Theories abound, but it’s safe to say that depression is part of the human condition, and we’re all susceptible, some more than others. Aging adds numerous issues and challenges to life, apart from disability. Life on wheels consists of an ongoing negotiation process, a bargaining back and forth over what’s possible and what’s not.
Loss of function accompanies aging for nondisabled people and wheelers alike. Hard-fought independence often hangs in the balance, and new negotiations and difficult decisions — whether to turn to a power chair, home health care, a ramp van, more equipment or home modifications — become inescapable. New health issues, such as heart disease, stroke, cancer, skin issues or worn-out shoulders and chronic pain can easily throw people back into feelings of anxiety, fear and loss not felt since onset of injury. Dealing with the unknowns of aging creates a great deal of ambiguity similar to that during rehab, putting people at risk of depression.
But the good news is that rates of depression actually decrease as people age, quite possibly adding some credibility to the adage of wisdom coming with age. Certainly experience plays a large part. People with disabilities usually learn to be masters of coping and resourcefulness. As long-time para Don Dawkins says, “Forty-five years in a chair have given me an almost perverse sense of confidence about being able to deal with what life throws at me. I know I can ride the whitewater.”
|MS, TM, and DepressionWhile depression may be a problem among SCI survivors, it’s more like an epidemic for those dealing with multiple sclerosis and transverse myelitis. According to Adam Kaplin, principle psychiatric consultant of the MS and TM centers at Johns Hopkins Hospital in Baltimore, depression occurs at a rate as high as 50 percent for those with MS and ranks as a leading cause of death for those with TM. But there’s an upside.”Depression in this population is not a weakness,” Kaplin says, “but a chemical irritation of the brain. It’s very treatable.”
Basically, any autoimmune insult to the brain results from activation of the immune system gone awry. When present, chronic stress leads to prolonged production of cortisol, a steroid that acts as the emergency brake on the immune system. With chronic stress, the emergency brake can wear out, leading to overactivation of the immune system. The risk of depression is greatest when the immune system is activated and the brain is under attack because the brain then releases a host of chemicals which trigger depression.
“Anti-inflammatory medications seem to have antidepressive qualities when used in combination with commonly prescribed antidepressant medications such as Prozac or lithium,” Kaplin says. “We’ve found that treatment for depression stabilizes the immune system as well. The less inflammation in the brain, the lower the depression.”
One might surmise that because the depression is chemical in nature, chemical treatment alone would solve the problem. Not so, Kaplin says.
“I tell people I can sit here and pop pills down your throat all day and you’re not going to get any better. The medications act as a catalyst and synergize with talk therapy, exercise and healthy activity.”
Kaplin reports that depression is the number one correlate of quality of life for people with MS, with a larger impact than any physical or cognitive effects. Worse, depression rates runs very high with TM, explaining why suicide ranks as the number-one cause of death in that population at the Johns Hopkins TM Center.
“People get into a vicious circle. Depression worsens MS because people become less active, are less likely to exercise or eat right, and tend to sleep poorly — all the things which mediate symptoms. Depression adversely affects people’s motivation. Autoimmune-mediated depression is much more difficult to treat because of the ongoing brain insult causing inflammation.”
Much of Kaplin’s work has focused on investigating the biological basis of depression and cognitive impairment in autoimmune CNS diseases such as MS and TM. He has also focused on developing novel treatments for depression that prevent the potential suicidality that has been associated with SSRIs, and which led to their black-box warning.
And what are these “novel treatments”?
“Basically it comes down to our having a theory, for which we have experimental support, that SSRIs can acutely lead to increased impulsivity associated with suicidality based in part on their dosing,” Kaplin says. “We are testing in animal models ways of combining other medications with the SSRI’s that will make them work more efficiently and rapidly, and without increasing impulsivity. The experiments are underway today, but it will be [some time] before we have our answer convincingly demonstrated.”
|Alternative Therapies for Treating DepressionSome turn to alternative therapies due to the cost of traditional therapy and medication. Many prescribed medications have adverse side effects such as weight gain and sexual dysfunction. Pregnant and nursing women in particular have to be concerned about how medications could affect breastfeeding. Many simply prefer a more natural way of coping with depression.A 2001 survey estimated that over 30 percent of Americans, and 60 percent of those seeking professional treatment, use complementary and alternative medicinal treatments each year and find them to be comparably effective to traditional therapies. Alternative therapies, either as a standalone approach or in addition to conventional treatments, can help people cope with depression, but there are no guarantees or magic bullets for treating depression. Think of depression as a barometer measuring balance in your life. Alternative therapies combined with professional treatment can help restore that balance.
Here is a list of alternative therapies that have been helpful to many:
• Exercise. Regular exercise is a powerful counterweight to depression. Consistent physical exercise and activity boosts serotonin and other brain chemical endorphins and also triggers the growth of new brain cells and connections — in much the same manner as antidepressants. Marathon-level training is not necessary in order to experience gains and benefits. Even a half-hour daily routine of stretching and upper-body movement can make a big difference. For maximum results, aim for 30-60 minutes of activity on most days. The key is to get moving.
• Nutrition. Eating well is important to health, both physical and mental. Eating small, well-balanced meals throughout the day will help maintain energy levels and minimize mood swings. Do your best to avoid the quick boost of sugary foods and try to opt for complex carbohydrates, which will more reliably get you going and avoid the all-too-quick sugar crash.
• Sleep. Sleep strongly affects mood. Depression symptoms tend to worsen when sleep time suffers. Sleep deprivation can exacerbate irritability, moodiness, sadness and fatigue. To insure getting enough sleep each night, stay active during the day and shoot for between seven and nine hours each night.
• Social Support. Strong social networks reduce isolation, a key risk factor for depression. Keep in regular contact with friends and family, or consider joining a class or group. Volunteering is a great way to get social support and help others, and it helps boost self-esteem in the process.
• Stress Reduction. Work to make the changes necessary in order to manage and reduce stress. Elevated levels of stress can increase depression in the present and the risk of more depression in the future.
• Music therapy. Active techniques can be used to help participants articulate difficult feelings in an improvised dialogue to increase emotional awareness. Receptive techniques involve the use of pre-composed music for relaxation, focus, guided physical muscle relaxation and mood change. Many studies report greater reductions in symptoms of depression.
Other alternative approaches: relaxation techniques, self-help groups, hypnosis, massage, yoga, aromatherapy, spiritual healing, and laughter.
|Tony Noguiera: Artist in Motionby Tim Gilmer
When you visit our cover artist’s website — www.artonio.com— one of the last things you see is evidence of depression. But it is there in a few works, mixed in with more typical vibrant creations, whether they represent an underwater world, the world of the subconscious mind, or a mysterious world pulsing with color, form and symbol. His works are alive and full of energy, unlike the state of clinical depression that Richard Holicky’s cover story describes. Those few works of Tony Noguiera’s that suggest a subdued mood are easy to pick out because they occur so infrequently.And that’s the way depression affects our lives as well. When it hits, it hits with devastating, unforgettable force, but usually in a matter of weeks or a few months, it is gone, unlikely to return until years have passed, or perhaps never again.
“I don’t think I’ve ever experienced clinical depression,” Noguiera says. “The closest I came to it was being angry at myself for letting my accident happen.” Nogueira fell from a tree while hanging from his legs at the age of 19. The life he has lived since then — he is now 43, a complete para — has had no shortage of the daily frustrations we all face, but his approach has never been to sulk or complain. He is married to Kim Janeck and has two boys, 10 and 12.
He paints with passion. “I’m not good with words,” he says. “Maybe that’s why I turn to art to express myself.” Not only does he work fast, he moves fast — he’s a professional wheelchair racer who trains as many as six days a week, often wheeling 10 to 30 miles. He likes to work with very large canvases, most of them larger than himself. He’s a graduate of Montclair State University with a degree in art education, and he teaches art to elementary school kids at the Cordero School P.S. 37 in Jersey City.
“Twice a year I create a huge work of art for my school that takes up an entire stage. I don’t know how I do it from my wheelchair, I just do it. The last one I did was a representation of the Ice Age. I’m in constant motion, putting things together, painting, creating. I don’t think that much about it. I just immerse myself in the work until it’s done.” Somehow he finds time to coach soccer as well.
Nogueira’s lifestyle sounds like a prescription for avoiding or perhaps even overcoming depression: Stay busy, involved with family, community, and the lives of others, active physically, in motion, enjoying life.
|When Depression Hits Years Laterby Richard Holicky
Sometimes the onset of depression is delayed. Sam Gardner hid his true feelings for close to five years following his injury in a violent crash in which his friend was killed.“I spent those years drinking and drugging, trying to medicate away the pain and guilt I felt for surviving a trip I had talked him into taking. I always believed that things eventually turn out OK, but gradually over that five years my hope simply evaporated, and the drugs and booze would no longer take away the pain. Then I lost the girlfriend that I’d had since before I was injured and everything totally unraveled: My self-identity crumbled, I got sick, I went through a weird drug experience that slammed me to the ground, and I simply lost hope.”
Gardner spent about six months in the ditch of depression that Craig Hospital psychologist Lester Butt defines as feelings of helplessness, hopelessness and worthlessness before realizing that he either had to move on or do himself in, which he dismissed “out of pure fear.”
“I felt like I was in a deep pit with no escape. Something physiological happened when I took that dive. I experienced in a very palpable way the feeling of being without energy that others describe, and it was like nothing I’ve ever experienced before. I was almost catatonic at one time.”
When his family made plans to have him committed, Gardner, terrified, looked up the shrink he had seen in rehab and sought counseling, but looking back, he’s unsure as to the effectiveness of the sessions. “I saw the guy just three times, cried a lot and said very little and made the decision that seeing him more wouldn’t help. I took the pills that he prescribed for a couple of weeks, didn’t feel any different, so I quit. I was used to taking drugs and getting an instant ‘rush.’ These did nothing for me. Had I not been feeling so hopeless, I might have given them more time.”
Gardner’s physical symptoms — such as weight loss, fatigue, loss of energy, psychomotor retardation [slowing of thought and reduction of physical movement] — are classic symptoms of depression and can serve as markers for SCI survivors who are clear of rehab and have been out in the community for a year or two or longer. His plunge “into the pit” is not all that uncommon, either, and often quite likely for people who experience some functional return or go through a lawsuit. Both those experiences often furnish the same effect that alcohol and drugs did for Gardner — serving as a distraction from dealing with the reality of paralysis and life on wheels.
Functional return allows people to maintain hope and belief that “everything is going to be OK,” while pursuing a lawsuit feeds the belief that the pot of gold at the end will buy off much of the pain. But when the physical return stops or the money runs out, the individual is usually still on wheels, still doing bowel programs and looking for accessible parking spots. Reaching that plateau can slam people into a wall of reality they had avoided up to that point.
Likewise, habitual substance use/abuse usually provides predictable — though illusory — relief from emotional pain and turmoil. Loss of that “friend” can precipitate both physical and emotional symptoms — lethargy and emotional paralysis being high on the list.
It took Gardner six months to recover from what he now considers a “drug-induced depressive state” complicated by denial of his true feelings.