Growing up, I thought that I knew loneliness well and understood isolation. But I was wrong.
I had not yet sampled cystic fibrosis's bitter, mutant, devastating isolation that could seemingly go on forever. I had not yet tasted the perpetual isolation that comes with not knowing the name or face of the disease that my sons were living with. And I fought that battle for 18 long years, knowing that there had to be a name for whatever it was that afflicted my boys.
When my first son, Nathan, was born, he struggled to thrive. He would feed well and within 20 minutes, projectile vomit across the room. His abdomen was often distended and he would writhe in pain. Often, five or more days would elapse without him having a bowel movement. He did not gain weight and rarely slept. He was continually congested and plagued with infection after infection. He coughed non-stop while his lungs sang an awful song every time he inhaled. Fear and panic often crippled me as I heard the same diagnosis over and over again: respiratory infection, ear infection, sinus infection and asthma. These diagnoses of chronic ailments would go on until Nathan reached adulthood when he was finally diagnosed with cystic fibrosis.
Isolation is an Insidious Thing
Before Nathan was born, I worked as a teller at Chase Manhattan Bank. When I returned to work, I tended to be absent more than I was present. I regularly called in “sick” because my baby was sick. Eventually, I resigned. I lost my work community, the stable relationships I had with my coworkers and the many transient ones I had with customers.
At home, there was perpetual discord as my marital struggles worsened. By the time we tried to make a concerted effort to go on dates, we'd gone too far down the diverging roads of separateness, isolation and despair. And so I cared for my Nathan and our new addition, Caleb, alone.
Isolation, like cancer, starts in one area and silently spreads to so many others. It robs you of all that you do not want to lose. You feel alone and adrift -- mindlessly so -- in all that you do to care for a child with chronic illness. You become robotic, doing all that is necessary on auto pilot.
There are no easy remedies for this perpetual dance that parents of a chronically ill child do to deal with the painful and enduring isolation that accompanies having a sick child.
Personally, I found little difference between having the CF diagnosis and not having a diagnosis.
In both, I've watched my children struggle daily. In both, I've known hopelessness and loneliness. In both, I've had to fight for hope to prevail -- to find a cure or to just get up in the morning and have my children have a “normal” day.
In both situations, there is the loss of friendship, companionship and sometimes spousal relationships. In both, there is never-ending exhaustion and the desperation of wondering and searching for something that will make a difference. In both, we travel through a long darkness.
We Have to Find Hope
As fleeting as it may seem, we have to somehow find hope. For me, it meant making instant friendships with strangers on buses, sidewalks, doctors' offices, anywhere really. It meant stealing those moments whenever and wherever I could find them and later delighting in the memory of them over and over again.
I found comfort in the outdoors and in walks through our local park in Brooklyn -- regardless of the weather.
It meant much reading and self-analysis and writing in journals to make sense of myself and my life and my place in this world. It meant grabbing breaks when they came to escape to the outdoors, to take a walk or push myself into a run or to bask in the sun. It meant being a mom devoted to one son and then two, and figuring out that by the time Caleb had arrived, I already knew some of what to do and what not to do. It meant that as my boys grew, I could rejoice in each stage of their growth and independence and successes. And it meant that I, too, could look for and find new dreams.
Today, we face CF with the conviction that we shall overcome. And we do so with love and laughter and downright silliness.