by Harry Miller.
I might not have looked at it this way, if I had not been asked for a recollection, but in many ways 9/11 - my 9/11 - began on August 31, 1999. This was the day that my wonderful late wife, Susan, got her diagnosis of ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease). We knew vaguely, despite a healthy sense of denial, that this could be a death sentence. It was perhaps the biggest shock of both our lives.
In April of that year she woke up complaining that her arm felt funny. I said, “Aaah, you just slept on your arm. It’s nothing.” A little premature. Earlier that month she was doing the laundry and when she picked up the bottle of detergent, it just slipped right out of her hand. Many tests followed before a definitive (even though there’s still no such thing) diagnosis was given.
Doctors were of no help. Actually it was worse than that. When Susan started developing pulsations in her arm, we asked our neurologist what was going on. Very matter of factly, he said, “Oh, those are fasciculations - signs of the swan song of the muscles before they atrophy and die.” Beautiful.
For the first year, Susan was no more disabled than someone with a tennis elbow. She went about her life and chores with relative ease. Of course, there were some terrible emotional moments but they were rare, because she encountered her situation with an amazing amount of calmness, wisdom, and bravery.
She orchestrated her treatment, even though there was (and still is) no such thing as an effective treatment for ALS. Science is still clueless about the cause, let alone the treatment.
Susan did not wallow in self pity. She scoured the internet for information and corresponded with people all over the world to see what other people with the same condition were doing.
She ordered a leg brace while she could still walk. She ordered a feeding tube while she could still eat. She ordered a keyboard-based voice simulator while she could still speak.
Eventually, she could not walk, eat, or talk. We reached a point in October of 2000 when we had to tell our children what was going on. Amanda was 13, Zach was about to turn 10. We had withheld telling them for over a year, but Susan’s worsening condition was apparent. They knew something was up. Telling them was not easy, but we did the best to assure them that we were doing what we could and that there was hope. Amanda could read over her mother’s shoulder. Zach couldn’t read, so when his mother read to him, her voice sounded like an alien droid.
During 2001, Susan got weaker and weaker. She had three serious falls which brought her to the hospital. The last time she drove was in February that year. There’s a hairpin turn into our street and it became too difficult to do with one hand.
By September our bedroom looked like the interior of a submarine. We had a variety of equipment lined up on steel racks to help with her breathing and the suctioning of her mouth, since she could no longer swallow.
On the morning of September 11, I was busy getting ready to go into work in Manhattan. I was rushing all over the house - I imagine the kids had both left for school - Amanda to Manhattan East and Zach to the Community School in Teaneck, NJ.
I was attending to Susan and talking to our caregiver. I was rushing back and forth, from the kitchen to the bathroom, always checking on her. She was propped up in a hospital bed, watching television.
Out of the corner of my eye, I saw a plane hit a tall building on the TV screen. I thought that Susan was watching some kind of disaster movie. Of course it was no movie, and like everyone that day we were glued to the media as the whole tragedy unfolded.
I don’t really know what Susan was feeling and experiencing then. Her mind was quite alert, but her ability to type was limited. We were both worried about our children, but they were fine. Amanda got a ride from her aunt and Zach spent the night in Teaneck and came back the next day.
I had an executive search company, and a candidate of mine had a 10 o’clock interview in the World Financial Center. I feared that I had sent him to his death. Fortunately, the World Trade Center doors were closed by the time he got there, so he couldn’t go through the building and amidst the pollution and debris he walked uptown, unharmed.
I remember walking through our neighborhood in Riverdale and seeing jet plane after jet plane, flying overhead. Nobody really knew what was going on. Everybody was walking around in a daze; however, because of my family situation, I had already been in a daze for some time.
That Friday, when Susan needed to go to the bathroom, I went to help her up so that we could “waltz” into the bathroom, which is the only way she could get there, but this time, it seemed that every muscle in her had body collapsed and it was as if she had become a rag doll.
On Saturday evening, Amanda, a friend and I were having dinner in the kitchen. Susan was just outside in the living room, being tube fed by the nurse we had recently hired. The nurse came into the kitchen and told us that she thought Susan had stopped breathing. I tried everything - mouth-to-mouth, a breath pump to revive her - but she was gone.
Amanda was the one who called 911. Zach’s aunt was just bringing him back home after taking him out for dinner. I found them on the sidewalk outside. I didn’t want him to rush in to see his mother that way. I said “Zach, I have something to tell you,” but before I could continue, he said, “Mom died.”
In the ensuing days, months, and years, Amanda, Zach and I started to slowly emerge from that strange unhappy dream. Susan, despite her illness and disability, had done an amazing job preparing the kids for school, arranging our insurance, paying bills, etc. so that we were on a relatively strong footing.
And with all the love and support of our friends and family and Susan’s great strength, we survived and thrived and everybody is doing well.