Why do we have such a fear of the unknown? Why do we torture ourselves with wild imaginings of what lies ahead? Have you ever noticed that our anxiety or dread of a future event is almost always worse than the actual event? In my experience the fear surrounding the end of a relationship is usually much worse than the reality after it ends. I have discovered that there is one exception to that general rule.
We met through work. We didn’t work at the same company. Our paths just randomly crossed and we were thrown together working toward what eventually became a common goal. Brian is the one who transformed an adversarial situation into a cooperative business venture from which we could both benefit. He had a real knack for or intuition for bringing people together in a business setting. It was so sad that the exact opposite was true in his personal life. From my observations it seems that it is exactly those qualities that make people successful in the business world that make them unsuccessful in their personal life. Brian was, to put it mildly, a very intense and demanding person. He was also very charismatic and charming. I was a little put off by his intensity. If he wanted something it was no holds barred and for some reason he wanted to have a relationship with me. It was a little scary but also very flattering.
Brian and I knew each other for four or five years before we married. We were able to evaluate, somewhat rationally, all the baggage that came along with the other person. He could readily see that I had three very young children. He had one young child. It was not so easy to identify our respective emotional and relationship issues. Still, during that time we were able to see each other with all our warts. There was something between us that made us want to connect in spite of our issues. That desire made us willing to work on connecting with each other. Why we were both so willing to do such hard work is still a mystery to me. There was something that brought us and held us together. Was that something a genuine and enduring love for each other?
It was wonderful to finally have some adult companionship and support. It was a relief to have someone to share the responsibilities and stresses of life. Brian genuinely loved my children. His love seemed to flow naturally – not contrived at all. Maybe when you really love the other person you love what they love or all that comes with them. That is not to say we didn’t have issues between us regarding the children just that they didn’t derail our relationship permanently as they had the potential to do.
I think the fact that we saw and acknowledged each other’s warts made us love each other more. We didn’t have to be expending all our energy trying to be, pretending to be perfect or protecting our perfect image. We were slowly tearing away our respective protective shrouds to reveal our true selves to each other. Romance, infatuation and all the baggage we bring to relationship can be transformed into real love. It is of course a process. Brian and I were working on that.
“I don’t want any more children. If that is important to you we should stop seeing each other,” I said to Brian one day as we were driving to attend a business event. I am not sure why I brought the subject up at that moment. We had been seeing each other for a while by this time but we had not yet discussed marriage. Brian never said anything directly about that subject but we continued to see each other. I think he understood how much I had struggled as a single parent of three young children.
Isn’t it odd how life’s most routine events end up, later, having the biggest impact on our lives. This was one of those situations. I made my annual visit to the gynecologist. There was a problem. The doctor asked me to return. It was described to me as potentially very serious so I asked Brian to come with me. We had been married a few years by this time. That is how we both came to be seated in the doctor’s office on this particular day.
“You have a condition that will require the removal of your uterus – a hysterectomy. I know that you mentioned to me that you might want to have more children. If you do want another child you should do it now,” the doctor said to Brian and me. Brian and I were seated next to each other. We turned, looked at each other and said “yes” to each other with our eyes. We seemed to have an ability to communicate without speaking – at least regarding some issues. We never had an actual verbal conversation ever about having a child together. We instinctively knew it was the right thing to do.
I was 37 years old at that time. Brian was older. Good Lord! That would make 7 children between us with the new one being 9 ½ years younger than its next closest sibling. I figured that, by making this decision, I added 10 years to my full time parenting years. In the ensuing months of my pregnancy when I would become anxious or question the soundness of my decision I would remind myself that I would not be doing it all alone this time. I know Brian sensed my fears. He had a knack for reassuring me in a very real way without words. I can’t explain it any better than that. Brian was a very involved husband and father. I knew he would share the burdens, responsibilities and joys with me. I so wanted to share the experience of parenting a child. In addition to shouldering the financial and physical burdens alone, life as a single parent it is a very lonely experience emotionally.
“What’s wrong with your arm?” I asked Brian. He had been moving his right arm in circles and rubbing it for several minutes. “It feels a little numb. I think it might be a pinched nerve,” he replied. We had just completed our morning swim together. Brian and I carved out certain times to be alone together as a couple. That was something of a challenge as we had my three young children full time and regular visits with his daughter. We both worked at demanding jobs. In the summer time we would wake up early in the morning and swim laps together. We had a beautiful backyard and after swimming we would sit together for a brief time and talk over a cup of coffee. “It will probably go away on its own,” Brian said to me. “If it doesn’t I will make an appointment with the doctor after the baby is born. It is probably a pinched nerve in my neck. I have already been through this once before with my back,” Brian continued.
“Are you still grieving?” she asked. I was taken aback. After all 14 years had passed. I had just answered a question regarding why Gary’s father wasn’t attending the swim meet to watch Gary. I felt a few tears on my cheeks. “Some part of me will always grieve for what I lost,” I replied.
A couple of weeks after Brian first complained about his arm our son, Gary, was born. Brian was ecstatic. He had always wanted a son. He was a rather macho guy. I didn’t hold that against him. Being a mother again was exhilarating and I was pleasantly surprised by that. For the past three years we had been working hard to blend our families. This baby accomplished in a moment what we had been unable to do in years. We all finally had a common bond or connection– a baby that we all loved and adored. I pinched myself to see if I was awake. Life was so great it had to be a dream.
“Samuel, Jessica, Ellen, Bridget can you all please come into the family room,” I yelled. Several different voices chimed in asking why we wanted them all right then or asking if they could come in a few minutes. “No we need everyone here right now,” I said firmly. There was the sound of pounding feet or was maybe it just the pounding of my heart as Brian and I waited for everyone to arrive. Brian was seated in the middle of the sectional sofa. Samuel sat down right next to him. I don’t remember where the girls sat. I was holding Gary in my arms. They were all looking at Brian eagerly waiting for him to announce plans for our next family vacation.
“I am going to die,” Brian said. No one moved. No one made a sound. Even Gary was quiet in my arms. “I have a terminal illness. There is no treatment or cure. I don’t know how long I have to live,” Brian continued. Samuel’s head was bowed and he was quietly crying. I could see the tears dropping onto his shirt. I felt the tears on my face as I hugged Gary close to me. Should I let the children see me cry I wondered? They are already losing one parent. If they see me cry will they be afraid they are losing both parents? I didn’t want them to think I didn’t love Brian. On the other hand I didn’t want to make life more traumatic than it already was for them.
It was surreal how the routines of life pushed the illness into the background. They acted like a salve. But the knowledge of illness and death was always there – like a dark specter following you and haunting you everywhere you went. The only relief was sleep at least some of the time.
You see Brian had gone to visit the doctor as he promised. That night, as our two week old infant slept in his crib next to our bed, Brian told me the doctor thought he had ALS. They wanted to do more tests to be certain. I had never heard of ALS before. Brian gently explained to me what it was and told me that there was no treatment or cure. I was numb. Somehow I was able to sleep.
“How do you live with this pain every day? How do you get up every day and do the things that need to be done knowing that one of the persons you love most in the world is dying a little more each day that passes?” I asked Walt. He was a marriage counselor Brian and I had been going to see, on and off, for several years. I didn’t really expect him to have an answer although I secretly hoped he might have even some small insight. Walt just looked at me with eyes that mirrored the despair in mine. He had no answers, not even any insights.
This was unchartered territory. There were no road maps and no guideposts to be found. There were no instruction manuals. Doctors provide the information regarding the physical progression of the disease but they have absolutely no information regarding the emotional aspect. I felt like I was falling off a cliff with no safety net. There was no hope that Brian would survive and I was starting to think there was no hope that I would survive either.
The demands of daily living came to my rescue. They numbed me to the pain. I felt like a zombie. I was physically present and functioning but emotionally I was absent. My physical body or shell performed the daily tasks but there was nothing inside.
Many years have passed yet I still get overcome with emotion as I write this. I am both sad and angry and everything in between. My emotions run the gauntlet. The past still has a powerful hold over me. Is that true for everyone or am I just weird?
I believe that some wounds are so deep they never completely heal. It is as if a piece has been ripped out of your heart leaving a huge gaping hole. In the beginning the edges of the wound are shredded, torn, raw and bleeding. The pain is excruciating and constant. Over time the wound begins to heal but the hole remains. If you touch the hole you no longer experience a sharp, stabbing pain as you did when the wound was new. But the wound is still tender enough that a touch can bring tears to your eyes. For me certain memories “touch” the wound.
My wound has remained tender for many, many years and I expect it will remain in this condition for the remainder of my days. I have come to accept that this wound will never completely heal. In some ways that is a good thing as it reminds me of some of the important lessons I learned from that horrendous experience. I learned to be grateful for what I do have and not to get distracted by less important things. It also has its dark side. If I am not careful, I can find myself travelling down that dark and well trod path of anger and bitterness.
“Get your affairs in order and prepare to die,” the doctor said to Brian when he gave us the final diagnosis. “There is no treatment or cure. The average life span after the onset of symptoms is 3 years,” the doctor continued. Brian asked some specific questions. Why is it that we often find comfort in knowledge? It is as if we believe a bunch of facts can change the outcome or ease the pain. I didn’t really listen to the conversation between Brian and the doctor. I listened to the sound of Brian’s voice thinking that I wouldn’t be hearing that for much longer. I was startled back to what was happening when the doctor spoke the word “coffin”. “It is often called the coffin disease because you are trapped in a dead and lifeless body. The brain is never affected by the disease,” the doctor continued.
Brian and I didn’t explain all of this to the children when we returned from the doctor’s office. I am not sure I ever really explained it to them. They were still in shock from the initial announcement. The children weren’t interested in details. I think it would have made things worse for them. They would have something else, in addition to death, to dread.
For the previous six months our life had been a series of highs and lows as we lived through a myriad of medical tests that would confirm or maybe even reject that diagnosis. ALS is a cruel disease. The emotional devastation begins long before the physical deterioration manifests itself. It started as we waited for the confirmation of the initial diagnosis. The only way to diagnosis ALS is by a process of elimination. If it doesn’t fit the pattern for other diseases then it must, by default, be ALS. I think we were given the final diagnosis at Christmas.
TO BE CONTINUED...
