My daughter had her first stroke caused by an Arteriovenous Malformation (AVM). Yesterday, Saturday, she had her second one, and it terrifies me. I wrote this for my sanity and with hopes that it helps others know they are not alone.
Ashley is a trooper. She has never been a cry baby but one who was too often too self-dependent. When she did a medical program in New York, she could not get anyone to go with her to get an air conditioner for her shared apartment. She bought one in the Bronx and was pulling it to a subway station. An old man, a Good Samaritan saw her and urged her to let him take her out of the area to her apartment. He told her she was a sitting duck and it was clear she was not from there. As I will point out later, it is an attribute that terrifies me. She harbors some of those tenets that I had before I accepted the advice of a few activists. Learn that solely giving isn’t community, but allowing the village in your fold is community. She started learning that in some aspects. But there is a stubborn resistance to ask for help with her stroke-induced disabilities.
My daughter lives in a very secure apartment building. She has people in the building that are acquaintances and a couple of friends. I remain a helicopter dad, even more so because of her stroke. We speak four or more times a day. Even when she goes out with friends, she lets me know all is good via Twitter, Instagram, or Duo.
After her first stroke, the always-political-person-that-I-am asked her to do a story about it for Politics Done Right. I was impressed with how fast she was moving on. The day after she left the ICU, she pulled me around the Howard University campus to sign up for a course she could do even with her deficiency. I was scared because I thought she was exerting herself too much after her AVM bleed.
Immediately after the first stroke, Ashley had lost half her vision and had a slight left drop-foot. No one would have seen much difference externally. But that AVM, that time bomb was always there in an inoperable place. But these great neurologists and radiologists gave hope that they could radiate the AVM away before it leaked again. Nothing is 100%, but it was one of the only options.
Ashley had the CyberKnife procedure. By then, she had regained 75% or so of her vision. And her drop foot was improving. But again, the time bomb was still there. Ashley’s doctors warned her that the procedure could have side effects. So when the drop foot got worse and the usage of her left hand started to decline, she accepted it as to be expected. She believed she would work hard to mitigate the decline in the future.
Ashley appeared to believe she was improving.
I told my wife I was not sure. A few days later, Ashley said in passing that she cried that morning because she never had such a hard time putting on her shoes. I flew to DC that very afternoon to her surprise. I wanted to convince myself (read delude myself) that the procedure-induced debilitations were less than they seemed. I asked her to go to the doctor. But Miss Independent non-whining medical student, refused.
Her mother visited the following week. Her left side was worse, and her mother convinced her to go. “Ok, ma,” she said. “But after my test.” She spent that Thanksgiving in the emergency room. Her brainstem was swelling from the procedure. They pumped her up with intravenous steroids and prescribed steroids. She gained a lot of weight from the steroids, but the steroids arrested the decline.
As the doctor tapered down her steroids, Ashley started doing exercises for flexibility, strength rebuilding, and weight loss. She was making significant progress.
Then there was yesterday. Ashley and I were having some good discussions all day. She said she would call me later to chat some more.
What I got, however, was radio silence. I Duo-ed Ashley.
“I was about to go on the roof,” my daughter said. “I drank sparkling water, and a bad feeling came over me, and I started throwing up.”
“Is it food poisoning?” I asked her.
“I think so,” she said. “But I am not sure.”
“Ashley, please go to the hospital,” I said.
“No, dad,” she said. “You have got to be sure you need to go especially because of COVID and potential breakthroughs and variants.”
I followed my gut. I reserved a one-way ticket to DC.
At midnight she was not returning my texts in a timely fashion. She finally called, telling me she was still throwing up and had a headache. I begged her to call 9-1-1. She said no. She would wait until I got there since I already got the ticket. I objected. I called the emergency room in DC. They told me because I live in Houston, I had to call 9-1-1 in Houston and have them relay to DC’s 9-1-1. I tried. Houston’s 9-1-1 put me on hold!
I finally convinced Ashley to call 9-1-1. We monitored her transit from her apartment to the emergency room. We asked her to keep Duo active. Most of you know my feelings about our healthcare system providing quality of treatment too often hue-based.
We were not sure it was a second stroke. As I flew to DC, stomach in knots, my wife was getting the information that the AVM had indeed bled. Ashley is currently in the ICU undergoing various stabilization treatments. We are hoping for the best. Like the last time, I thought I could have talked my way into staying all night in the room with my daughter. They are enforcing strict COVID regulations. I had to leave tonight.
I entered my daughter’s apartment, and after looking around, tears ran out of my eyes. It was clear she was trying everything to get better, and she was willing the stroke not to be a stroke. There was a bag of frozen peas she used on her head. Ashley had a couple of cups of different teas. And then there were the crackers. There was a chair positioned over the toilet so she could get there quickly with her limp. And she had wipes arranged for her to clean up if necessary.
Ashley is very smart. When she got her first stroke there was no hesitation. She went through her medical student training and knew she was having a stroke. If she was sure she was having a stroke this time, she would have gone to the hospital. But the week before she had food poisoning with the same response. The headache, she wanted to be sure it was not from the exertion of vomiting. The last time I convinced her to go against her will I was wrong.
I am keeping my hopes high that my daughter will come out of this well. I hope she is intact and can fulfill her dream of becoming a doctor. We need more doctors that care about humanity more than the buck and she fits the bill.
PS: The doctors and nurses at the hospital are some of the best. They are competent and have the greatest bedside manner I have seen.