Making Life Work
The impact of life-threatening illness at work and at home
By Amy E. Dean
Imagine you are stranded on a desert island. You must rely upon available natural resources and exert tremendous energy just to stay alive.
Now imagine you are stranded on the same island with someone who is gravely ill. Surviving the ordeal becomes secondary to helping him survive. Yet without medical supplies and treatment and with the inevitable passage of time, the hope of saving him diminishes.
It's natural that you would feel helpless in such a situation, and this sense of helplessness is by far the most common emotion described by those going through the life-threatening illness of a family member or coworker. Any family experiencing this -- even a workplace family -- is often transformed into a group in crisis. You and others in the group become stranded on your own island, separated from the normal flow of daily life, surrounded by a sea of pain, grief, and anger.
Too often the life-threatening illness experienced by one becomes a crisis for all. When someone who is seriously ill continues to work, it can be a double-edged sword. On the one hand, maintaining a normal daily life can be quite beneficial for the sick person; on the other hand, it can create an uncomfortable workplace for others. Not only can the person's work suffer because of fatigue or the need for time off, but the emotional and psychological stress of being around someone who is ill can create strained working relationships and feelings of anger or resentment. At such times, BU staff and faculty can benefit from individual as well as group counseling provided by the Faculty/Staff Assistance Program. The BU Medical Center's Office of Occupational Health also can assist. Director Dr. Cheryl Barbanel says, "We can, in a confidential manner, work with an employee and the employee's doctor" when it's necessary to determine whether someone should continue to work.
Nikki Sibley, director of the Office of Family Resources and Boston University Children's Center, knows firsthand about this delicate balancing act. In late September 1997, prior to her daughter's wedding, her brother told her that he had about six months to live. "The wedding was wonderful . . . beautiful," Sibley recalls. "But it was also the last time everyone saw him healthy." After the wedding, Sibley needed to involve the rest of the family -- adults as well as children. She wanted to be there for her brother as much as possible and yet not create a burden on her coworkers.
"There is time when you can give, and time you need to take for yourself," Sibley says. Her time of giving involved spending weekends with her brother, helping him with his will, paying his bills on time, making sure he ate, running errands, and in general, helping out whenever he was exhausted. But Sibley also had to find ways to juggle her work schedule at the University without creating too much strain on her colleagues.
"BU has been incredibly supportive," Sibley says. "Both the people who work for me and the ones I report to have picked up much of the slack in my absence. I told my coworkers about the situation and that there would be times I might not be able to come through for them as I had in the past. Once I told them, it was not only a great relief for me, but I received a great deal of understanding and help."
Anyone going through the experience knows that life-threatening illness is simply hard on everyone.
For Sibley, understanding her brother's illness helped. She used the Internet to find out everything she could about cancer as well as to locate wellness community programs in the area. The Wellness Community-Greater Boston, part of a nationwide wellness community network, located at 1320 Centre St. in Newton Centre, opened in September 1993, and since then monthly visits average more than 600. TWC-GB offers free programs such as weekly support groups led by licensed psychotherapists, orientation meetings, monthly networking groups, and educational workshops in a homelike setting for adults with cancer and their families.
Since her brother's death, Sibley has felt deep gratitude for the support of her colleagues and the BU community. "Even though nothing and nobody can really make it all right for you," she says, "you just have to take it one day at a time."