Note: There is so much more detail I would like to add to this post, but my fear is that it would take away from the last days of my mom’s life.
I wish I could say that when I got off the phone with my Dad, I ran around the house packing stuff up and drove 200 miles per hour up the road to get to my mom’s bedside. But that isn’t the way it happened on that Tuesday. I had gone to the gym earlier in the morning and went to work. As someone in outside sales, we were assigned team days to be out “cold calling”- i.e. talking with businesses in the community. On this particular day, I had gotten ready at the gym and started making my rounds in the North Phoenix area, and had knocked on a handful of businesses’ doors before making my way home just before lunch. Fortunately, Dad called me shortly after I got home. I gathered a few things, just in case I would be spending the night, called my boss and left him a voicemail, letting him know that something was wrong with my mom, and made my way up to my parent’s house.
As I approached the front door, I wasn’t truly aware, nor was I prepared for what was on the other side. As I opened the door, I saw my mother laying in her chair in what looked like a sleeping state. My dad was with her, as was one of the hospice nurses. Connie was a woman of Haitian descent, her accent so thick that initially I had a difficult time understanding her. Connie stood over Barb with a washcloth on her head, quietly, yet firmly, saying her name in her ear.
“Barb. Can you hear me?”
She was trying to wake her up.
Immediately, what little calm I had left my body. The situation was grave and in that moment, it felt like there was really nothing that I could do. When the nurse would go to get pain medicine, or my dad needed a break, I would sit next to her and try talking in her ear, hoping that the sound of my voice would wake her up.
I asked my dad what had happened, and he said that in the middle of the night, my Mom woke up with intense pain in her leg. What wasn’t made clear was whether that pain was from phantom pains or something else, as my mom was a double amputee. He said that her pain became so intense, and then, suddenly, she passed out.
I remember where I was the day that my Mom told me that the doctors had figured out the root cause of her health complications. It was a beautiful Saturday morning in June, 2003, and I was living in Brighton, Massachussetts. As a 22 year old boy, my life was in the midst of dramatic change. The woman I was living with was actually my ex-girlfriend and, after spending nearly 8 months broken up, one night of attempted reconciliation in early 2003 resulted in her becoming pregnant with twins. After three years of working road construction during the day and going to community college 3-4 nights per week, the new priorities I was facing immediately became my number one concern. On top of that, I had recently found out that the elderly man who I had lived above and who had rented me his upstairs attic apartment, had passed away. With the sale of his house, I was forced to move, and my pregnant girlfriend was happy to have me move in with her. So here I am, a 22 year old, scared-shitless, soon to be a dad of twins, practically married to a woman I didn’t want to be with, living out of boxes, working a dead-end construction job and desperately trying to get my sea legs under me to figure out when I’m going to get my college degree. On that Saturday morning, I was cleaning up the kitchen when my phone rang.
It was my weekly phone call with my parents. Normally we had our calls on Sunday morning, but for some reason, this week we were able to connect on Saturday. The call was pretty typical, catching up on the weather, how everyone was doing, normal parent and son stuff. I don’t remember much of the details of talking to my mom or dad that day, except for the brief silence on the line towards the end of the conversation, and what immediately followed. My mom started:
“Joey, I have to talk to you about something, but you need to promise me you won’t get upset, okay?”
Those of you who know my Mom know that the words that could follow would either be earth-shattering, or completely inconsequential, and sometimes I could figure out which if I listened to Mom’s voice closely. On that day, I had no idea- but nevertheless agreed.
“Okay, do you want the good news or the bad news?” My mom would always ask that- and I normally would always pick the good news first. Today I went with the bad. My mom explained that the doctors had been doing various tests, and after looking at not just the results, but the current symptoms she was experiencing- the heart attacks, the broken bones, the ulcerative colitis, the sensitivity to cold on her extremities- those were all actually correlated. The doctors told her she had a very rare disease called scleroderma, and I’ll never forget this next part:
“In latin, scleroderma literally means leather skin, and the doctors told me that my skin will become tight as I age. So the good news is that I won’t have wrinkles!”
I forced out a laugh, and she must have sensed my lack of authenticity. She went on to tell me that the heart attacks would get worse, the amputations would be continue, that the disease would eventually spread to her esophagus, and finally her lungs and heart. The prognosis was 5-7 years.
At the time my mom told me that, I literally didn’t know what a prognosis was. My thought process revolved around the fact that since the doctors knew what her disease was, that they would be able to treat it and she would get better. I was in complete denial, and the strength and patience my mom showed in that conversation must have been monumental. She repeated what she mentioned before- that her condition would get worse, and she told me there was no medicine to cure her. There were things that they could do to treat the symptoms, but those would only go so far. I started to conceptualize what she was saying to me, and I tried to offer words of encouragement and be positive. She didn’t cry, and told me that she wasn’t going to feel sorry for herself, and that I shouldn’t either. She was going to love her horses, spend time with Dad, and live her life as long as she could.
She asked me how I was feeling (always worried about everyone else!), and I told her I was fine. I’m sure she didn’t believe me- she knew me better than I knew myself. We talked for a little bit and she reassured me that nothing had changed, and that she wasn’t letting anything stop her. I heard what she said, but was having a tough time processing. Shortly after, we said our goodbyes and hung up the phone.
On the surface, I tried to act fine and rationalized the situation by telling myself that the only difference is that the doctors had put a name onto what her health issues were. But after I got off the phone and thought about it for a while, it started to eat at me. I cried like a baby- why did it have to be my mother who got sick? One of the other things that I used to think was “…and my mom isn’t sick with just any old disease or some common cancer that is curable- she got stuck with this ridiculous rare disease that no one has ever even heard of!” I felt that there was an injustice- 99% of that injustice was to my mother, but also to my dad, as well as my sister and me. Mom never looked at having scleroderma as being an injustice. It was just the cards she was dealt. She just handled every day as a blessing and tried to live life to the fullest.
At the same time, I would be lying if I said my mom never expressed her frustration with scleroderma. It was extremely rare, but it happened. She called them her “poor me syndrome”. She would say how upset it made her that she couldn’t do something, or that she wished she would just “feel better.” We would all encourage her in our own ways, and then she would snap out of it. I can still hear her saying “you’re right” and can see the smile she would get when she would hear us encouraging her. On that June day in 2003 though, she didn’t need our encouragement. She was determined to fight and enjoy what life had in store for her.
As I looked at my unconscious mother nearly 13 years later, that conversation never entered into my mind. In that moment, I was just desperately hoping that she would wake up. I refused to think that God would take her from all of us without us saying goodbye.
Around 3:30 pm, with Connie, my Dad and I all huddled around her, using a facecloth on her forehead, my mother opened her eyes and looked around, then quizzically said hi, wondering what all the fuss was about. Her pain medication, combined with the physical issues she had been through over the course of the past 14 hours had left her fairly confused. She was able to slowly come around and asked us to call two friends to come to the house. Naturally, they came over as soon as they could and spent time talking with my mom, who by now was acting as if nothing had happened before. They had some great laughs, and my mom told them that she was starting to get tired. Shortly after, my mom had fallen back to sleep, but not before saying goodbye to her friends.
As afternoon turned into evening, then to night, Mom laid asleep in her chair. We again were unable to wake her, and the fear returned that she would not be be coming back. As the night got later, my dad and I discussed the need to tell my sister. Earlier in the day, he mentioned that it may do more harm than good to let Jenn know, and I reminded him that the later we waited, the smaller the chance we would have to make sure Jenn got here in time. I had promised my sister that I would be honest and tell her when it was time, and in my opinion, we had come to that point. My dad, always deliberate and thoughtful in his problem solving, now had second thoughts, and told me to give my sister a call.
I’m sorry I need to run I’ll write more later.