Think of a family as a mobile hanging from the ceiling. Moving one of the hanging objects sets all the others in motion. Onset of disability can set every family member careening off on a different trajectory.
While it’s a cliché to say that disability happens to an entire family, its impact can be enormous, as if adding a new member to the family. Everyone loses something: spouses often lose the future they planned for or the child they had imagined. Siblings often lose the person they knew, or more often lose their perceived ability to relate to him or her. A majority of families experience their first exposure to disability, and many carry preconceived and stereotypically negative images and attitudes toward disability.
Old demons, such as substance abuse problems or mental health issues — like depression or narcissism — can reemerge as coping mechanisms. Some family members make sense of the new realities by relying on cultural beliefs, misconceptions or New Age assumptions about disability being overcome through a positive attitude.
Collateral Emotional Damage
Meg Bryant’s mom, who began drinking heavily prior to her daughter’s injury, grew progressively more distant, until she eventually became emotionally unavailable. Bryant, a sophomore in high school, found herself taking care of the entire family for several years until her mom sought treatment.
“After I got hurt, everything I needed from a mother I had to find somewhere else. When she got sober, I didn’t know where to put her in my life. My sister also changed, putting me on a pedestal like I’m perfect. I don’t want to live up to that,” Bryant told me 10 years ago. Her sister became very depressed after the injury and was diagnosed as bipolar. The therapist likened many of the problems to collateral damage from the SCI. Meanwhile her dad was emotionally AWOL, either in denial or simply ill-equipped to deal with it all.
“This was very hard on my family, and seeing them struggle was hard on me. I’m smart enough to know that none of this is my fault, but it was hard not to feel caught in the middle,” she says. “After I realized that if I wanted them in my life — they’re my family, my blood, and you don’t get to pick them — I needed to change my outlook. I’ve done a lot of work mending relationships.
“I made a space for my mom. It’s not a mom place or a sister place, but it’s where she fits. We talk almost daily, but it’s very superficial. I know she loves me and I appreciate that, but she doesn’t acknowledge her drinking days and being totally absent.”
When Bryant’s sister had a baby, she wanted to be the aunt, which involved spending more time with her sister. “She still treats me like I’m perfect. She’ll never really know me, we don’t ‘talk about our days,’ or hang out at Starbucks, but she’s in my life.
“I had to grow up fast and was fortunate to have some friends I could confide in. One was six years older and played a mom/big sister role. I had other friends for Christmas and holidays to let me know I’m worthy. I also took comfort in little things like school and work and swimming.”
The Disintegrating Family
Anne Marie Hochhalter’s mom fell into a deep depression following her injury in the 1999 Columbine shooting, eventually committing suicide. Still a teen and adjusting to her new reality, Hochhalter now faced it without her mom.
“I was still doing the gaiting program, trying to walk, even though I had begun to question if I was making any progress. But my dad was sure I would, mostly because his new girlfriend, a massage therapist and New Age healer, was telling him that I’d walk if I worked hard enough.” After months with little improvement, her physical therapist gave her and her dad a dose of reality.
“My dad wanted so badly for me to get better, to walk,” recalls Hochhalter. “I felt so much pressure and until I accepted that I wasn’t going to walk — way before everyone else did — I felt like my life was on hold. Giving up on walking was actually a relief.”
Then her father remarried and they moved to the mountains, where she didn’t know anyone. “I felt very uprooted,” she says. Hochhalter had to drop out of school — unable to drive because of chronic pain. “I lost contact with my friends in Denver and was sleeping 10 to 15 hours a day due to medications. I felt very isolated.
“My brother Nathan and I were very close, although all of us grew distant after my mom passed.” After Nathan joined the military, she says, he changed. “He hardened and was even more distant.” Hochhalter’s isolation increased.
Over time, she found that changing meds gave her more energy. She was better able to function through lingering depression and isolation and found a way to drive and cope with pain, which allowed her to feel safe behind the wheel. Each accomplishment left her feeling more in control. Eventually, she packed up, moved to Denver, re-enrolled in college and found a part-time job.
“I got more comfortable with myself.”
She was on a roll … until she wasn’t.
Once, while Nathan was home on leave — “He and I were sitting next to each other talking when I felt my body move. I realized my brother had been poking me under the table. The look on his face said, ‘Wow, she really can’t feel that.’ It was like he thought my injury wasn’t real. I was devastated.”
When Nathan told her that their father had been dipping into his trust from his mom, and she began getting calls from an auditor regarding her dad’s finances, she checked her own trust and discovered substantial funds withdrawn without her knowledge or consent. Other monies had been improperly invested and growth she had counted on was nonexistent. She found herself in the position of having to sue for what remained and to wrest control from her father, the fund’s trustee.
The fund was donations from generous people all over the country following the Columbine shootings. It was her reserve for the future.
“It was hard enough dealing with my dad blaming me for ‘wanting’ to be in the chair,” she says, “but discovering he was taking my money as well told me I had to sever ties.”
In the course of eight years, she had been paralyzed, lost her mom, had her disability openly questioned by her dad and only sibling, and caught her father raiding her back-up/emergency fund. How do you deal with that?
“I found a good deal of support from aunts and cousins on my mom’s side. Also, my friend Sue, whose stepdaughter died in the shooting, sought me out shortly after the shootings and we became very good friends.”
Also, school and work helped, and “I got a lot of support from my church friends as well.”
The Blame Game
Rick Smith’s new partner of about a month, Deb, held him responsible for cheating her out of the future she imagined with him. She was angry about his limitations, dismissed any progress he made, and over time withdrew emotionally, which culminated in an affair.
“She felt guilty and responsible because her dad, a neurosurgeon, recommended the [doctor] whose work made me worse. He had told me I might walk out of the hospital — prior to surgery I had my hands and good movement and strength in my legs. I came out a complete C5-6.” A second surgery relieved the pressure on the cord, but the damage was done and no function returned.
Rather than getting support from his partner, Smith spent rehab taking care of her issues. “I was never sure if she would stay or go, if I could count on her or not.”
His sister, a nurse, was also there for the surgery and felt responsible for the surgery going bad, too. “Our ‘family tragedy’ became her tragedy, and she began doing her best to control aspects of my life, even interfering with a lawsuit. I ended up taking care of my other three sisters visiting from out of town, having to be all optimistic and positive. I was 42, they treated me like a teenager and expected me to take care of them.”
After rehab, Smith and Deb moved in together for all the wrong reasons. She felt guilty about his injury and didn’t want to be single; he was terrified of the future in a chair and couldn’t envision functioning on his own. Despite some remarkable return of function — full independence, standing and some crutch walking — her attitude remained unchanged. She only saw limitations, and they enraged her.
“I was this lodestone,” says Smith, “a reminder of the partner she didn’t have to ski, hike, bike or run with. She seemed to resent any progress I made, dismissing it as not enough, making comments such as ‘I need someone to pick up the slack, not another kid to take care of,’ or asking ‘What am I doing here? Who’d want to be with you?’ But the guilt kept her there and fed her anger.”
Fear and a strong attachment to her sons kept him there.
“Eventually,” he says, “by making the situation totally intolerable, she got me to leave.”
A year later, after Smith plateaued and decided to quit therapy, both his sister and Deb implied he had a bad attitude: “So, you’re just going to give up?”
Twenty-four years later, little has changed. His sister continues to view herself and him as being to blame for the family tragedy, despite his having a fairly satisfying career and successful marriage now.
“A few years ago, at a family gathering, while I was struggling with a hard transfer, she shook her head and said judgmentally, ‘You just had to go skiing, didn’t you?’ I’ve found it best to simply change the subject, make a joke or respond with a positive.”
What the Experts Say
Toby Huston, a Craig Hospital psychologist, explains how families become dysfunctional when dealing with disability.
“If a relationship is at all troubled or not solid at the time of injury, any feelings of ‘should I stay or should I go?’ can be intensified by disability,” Huston says. “If a family member or spouse was somehow involved in the injury (e.g., driver of vehicle that results in injury of spouse or child), prolonged feelings of guilt may emerge.”
Huston says that sometimes family members simply reject disability and thereby the person with the disability. “They focus solely on full recovery as the only ‘acceptable’ outcome, basically saying that ‘you will only be whole, normal, worthy, loveable (pick your word) when and if you are restored to nondisabled condition.’ Family members may believe they are being positive, hopeful and optimistic,
but may need to hear they’re telling their loved one they won’t be ‘OK’ or loveable unless they fully recover,” Huston adds.
Rhonda Olkin, a psychologist, professor and polio survivor, describes disability as “an uninvited guest who must be incorporated into any relationship.” She suggests that both partners and family members may hold negative attitudes and believe the stereotypes regarding disability prior to their first-hand exposure.
Families that cope well are willing to access better resources — basic life skills, personal competence, social support, community resources. Successful couples and families display the same traits as nondisabled ones: frequent positive behaviors and attitudes, good communication patterns and a general lack of hostility. They find ways to “revise closeness to include, not exclude, disability issues,” Olkin writes.
Disability can cause stress sufficient to topple shaky marriages or other family relationships, which may simply become too toxic to withstand the stress. Disability imposes powerful restraints against divorce — finances, finding adequate care, condemnation for abandonment — although the severity of disability rarely affects marital satisfaction. Post-injury partnerships/marriages, Olkin says, often fair better than pre-injury ones.
Both Huston and Olkin assert that the injured person often accepts injury long before other family members and that disability may accentuate long-standing substance or mental health issues or personal problems for any family member.
When dealing with disability, families can serve as testaments to creativity and courage, flexibility and a wide range of skills — or as examples of inflexibility and poor coping skills. What’s true of all families is that each member copes the best they know how and as well as they can. Some have more skill, courage, experience and self-confidence than others.
As one veteran of this arena offers, “We’re all in the gutter. Some of us are just closer to the curb.”
This article was funded by the U. S. Department of Education’s National Institute on Disability and Rehabilitation Research, Grant # H133N0110006. The opinions expressed in this article do not necessarily reflect the opinions of NIDRR. Several pseudonyms were used.
• Through the Looking Glass — a nationally recognized center that has pioneered research, training, and services for families dealing with a disability or medical issue. 800/644-2666; (www.lookingglass.org)
• What Psychotherapists Should Know About Disability, By Rhonda Olkin (Guilford Press, 1999).