Living beside Marfan Syndrome

Season: 2001

Submitted By: June Yee MSW, RSW (from Marfan Symposium 2001)

In today`s society, we pursue fitness; we are passionate about wellness. We want to prevent illness or symptoms, but sometimes, we get broadsided. Illness or injury can be like a mysterious stranger that comes into our lives. It can sneak up like a lover, wooing for time, indulgence, rest, and a change in perspective. Or it can be like the plague or a time bomb. Or it can be quick like a bolt of lightning out of the blue.

As noted author Susan Sontag put it, "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place".

When illness is evident and persistent, how do we summon the strength to face this journey? Why are there people who do better, live longer, experience more of life? Sometimes, in spite of severity or complexity of defect or disease, it is the outlook, the ability to adjust, to access resources, to bounce back, and to do what is necessary to move on. It may be the ability to concede a bit, to fight a bit, to adjust, which makes a difference. There are some simple ways, some complicated ways to adjust. You do the ones that you can do more easily first.

Individuals and families who have experienced the depths of illness tell me repeatedly that `it is easier if you don`t go through it alone.` It is better together. Together sometimes means trusting to feel close and it even means at times feeling some distance or a vacillating between the two. Together means being supportive in unique ways. Together can mean being open to personal as well as community or agency support.

When illness is "in your face," Dr. Lorraine Wright says that your task becomes to see if you can learn to `live beside your illness`. Allow room in your life for the symptoms as they present, but keep your eye on the `well` life.

Allow room to grieve. Grieving is for everyone - the individual, the families, the friends, and even the health-care providers. The actions of grieving are personal, yet commonplace. Practical things like talking to people who can provide useful information or to people who care can be a form of grieving. Grieving helps to heal emotionally. Some therapists believe that people who do not talk about `stuff` spend more time doing other stuff like smoking more, drinking more, gambling more - maybe stuff that may not be all that helpful in the long run. Some short-term activities that end up making a person feel better over the long haul - visit and revisit happier memories, reaffirm friendships, day dream, cry and laugh a little - our bodies like stuff like that. It makes us stronger emotionally. Celebrate gains. It builds our resilience.

It is fine to ponder `why me?` `Why my family?` Some therapists have found that if you have a view of human nature as basically good, it serves to buffer against those insidious beliefs about causes of illness that invoke blame, shame or guilt. It is more useful to have working beliefs that encourage us to embrace options that allow for maximum recovery, options that allow for a life of joy, love and hope. Meaningfulness in life is enhanced by options that support us to continue to be contributing family and contributing community members.

Dr. John Rolland says to be mindful of the developmental stage that you would normally be at and make sure you don`t get railroaded or derailed away from it. When new wellness returns, developmental guides help in adjustment back to seeing to your goals, your dreams, your relationships. New wellness means reinvesting in the things that make life so worth living.

Illness leaves a blueprint that can be a turning point towards something new. It demands that we use creativity to pursue a new fitness, a new wellness, a new knowledge. When illness is no longer a stranger, we are changed forever. Actions such as `going it together rather than alone`, learning to live `beside the illness`, grieving and celebrating, having beliefs that promote joy, love and hope, and staying tuned to developmental stage - these things help build resilience.