Who is Susan Fernbach? After seeing the movie The Sessions and being completely enthralled with the man whose heart, mind and soul were not in the least bit concealed by the iron lung machine in which he lived most of his life, I looked for someone to enlighten me further on how Mark O'Brien was able to engage in life with such charm and spunk.
Out of the confines and restrictions of his body came beautiful words -- words to describe and connect with the nakedness of humankind. His prose came true to life as he connected with a partner, Susan Fernbach, for the last five years of his life.
Ms. Fernbach sheds some light on Mark O'Brien's ability to transcend his circumstances and live in the best way possible. She also shares some important points on being in relationship with a disabled person.
Harriet Cabelly: What personal qualities helped him carry on and move in a positive direction?
His sense of humor, his intelligence (I used to say he had a mind like Arnold Schwarzenegger's body), a kind of patient tenacity. He once said that what most people think of as courage is really an extreme form of patience.
How did he handle pity, self or otherwise?
He turned it on its ear in his poetry and other writing, making fun of people's pity for him and his own self-pity. In Breathing Lessons and in The Sessions, he and the character based on him somewhat facetiously blame God for his situation, making self-pity into a joke. However, his humor did not negate his feelings -- it helped him cope.
What were his day-to-day coping skills that kept him going?
He learned to manage his attendants, hiring and firing as needed, giving instructions to them on how he wanted to be assisted. He learned a lot of these management skills from other disabled people in Berkeley. He learned gratitude, which helped him focus on the things that were going right, and he had a spiritual life connecting him to the Divine.
What thoughts propelled him forward?
He set projects for himself that he could accomplish -- starting an essay, writing a poem or a journal entry -- and the sense of accomplishment helped give him impetus to keep going. When he felt afraid or discouraged, he wrote down those feelings in journals or poetry to get them out of himself.
In general, how did he manage to build a productive and meaningful life?
He did things even though they scared him -- "feel the fear and do it anyway" as the saying goes. He set goals and accomplished them. He built important connections within the disability community based on the "social model" of disability as a rights movement rather than the "medical model" which defines a person only as a set of deficits or conditions. His disabled friends were very important to his self-image and in reducing his sense of isolation.
What advice would you give someone with disabilities so they can transcend their challenges and live in their best way possible?
Take what society says about you with a grain of salt, especially the media's stereotypes. Don't allow them to pigeonhole you. Set your own goals and celebrate your accomplishments. Don't be denied a purpose for your life.
Read up on the disability rights movement and find out about the courage of people in wheelchairs who chained themselves inside San Francisco's federal building to demand enforcement of anti-discrimination laws. They are inspiring.
Join groups or online forums where you can communicate with other disabled people. You are far from alone. Mark used to say that everyone will be disabled if they live long enough.
Notes to those who love a disabled person:
Be honest and gentle with yourself about your grief. Their loss of ability is a loss for you too. Being a poet myself, I wrote down my grief about Mark's limitations into several poems.
You may feel like all that matters is your loved one's state of mind and rehab/goals/accomplishments. For a while, at the beginning of a disability, that may be true, when everyone is in crisis mode. After a while, however, even though it's hard to do, it's important to reclaim some of your own focus, goals and projects. These can help recharge your batteries and help you feel good about something, especially amidst the grief that comes with loss of ability.
Although you may want your loved one to overcome his/her condition, don't allow yourself to be made responsible for their state of mind.
Find other people with disabled loved ones. They understand the fatigue and grief that comes with the territory. There are many resources for this on the web for specific conditions and diagnoses.
If you find yourself in the role of caregiver, try to find support. Many senior centers or center for independent living have resources like this.
Excerpt from The Man in the Iron Lung:
Three Reasons to Live
o God, it was boring
but there was nothing else
so I did it
got it out of the way
we had this deal going
like God gave me life
for a while
I gave him gratitude
for a while and
it worked out ok
things just kept happening
you know how every day is different?
and I just wanted to see
what would happen next.