Last edited October 2020.
(something I created via verbal transcription from my hospital bed. I am currently home now, and slowly getting back to normal while my body heals. I will edit when energy permits. also, this is a patient account. Doctors & staff may have experienced it differently but this is what I remember & felt)
On Tuesday morning I had an early appointment at 7:30am to get my car registered. I dropped the car off I asked if we had enough time to walk to get bagels, and the man said “yes absolutely”, so Brooks (my 2 year old son) and I walked to the bagel shop Sunrise Bagels. I figured it would be a fun thing for him and I to do because we typically spend a nice breakfast at home alone.
Once inside, I saw some men sitting down in the café part of the bagel shop which is usually closed due to Covid. I decided that Brooks and I will join them and sit there too and if anybody had anything to say about it I would claim “toddler life.“
Once we sat down I gave Brooks his bagel, he dove right in, and the men started laughing because he had a huge cream cheese mustache, saying how cute he was. I smiled, agreed, and opened my bagel and started to take a bite....
Then. I heard a loud buzzing in my ear so loud that I had to look and see if other people were hearing that sound like a tsunami warning or an extra loud AOL dial-up noise. So loud that I had to cover my ears. Then I realized it was me! I think I asked Brooks “can you hear that noise?” To which I got no response LOL. Then I thought maybe “you’re just dehydrated” so I reached for Brooks’ water and it sort of felt wrong to drink water and I think I either spit it out or dropped it on the table.
I knew something wasn’t right. I felt nauseous and dizzy. I felt out of sorts more so than just feeling sick. I tried to unlock my phone & dial Nick to tell him that I felt weird but I couldn’t put my fingers on the numbers to unlock the phone. I remember trying to focus so hard just to push one number and it kept going to the wrong number. Then I started to panic. I turned around and looked at the men in the bagel shop, and exclaimed “call 911! somethings wrong with me! somethings wrong with me! I’m having a seizure or a stroke.! Call! I can’t unlock my phone! Call call call something’s wrong with me!” I could still yell/speak at that point.
They immediately took charge and started dialing without even questioning me or looking at me like I had five heads. They were my first guardian angels that morning.
Then I was in disbelief, and so embarrassed. I tried to stand up. I thought ‘this can’t be happening!’ I looked at Brooks. I tried to say “I’m sorry, I’m sorry” I felt so terrible about inconveniencing him. I took a serious look at him one more time and thought “this isn’t right, this is not the last time I’m going to see him.” I went to stand up and I fell directly onto the ground, and then I was stuck. I was laying face-down on the ground and I started throwing up and making a lot of noises. I was very upset. At that point my speech had gone. I sounded more like muffled yells and moans. The bagel shop Manager tried to keep me calm and told me that help was on the way. They kept asking about Brooks: where he would go? and I kept trying to say Nick nick Nick nick Nick (my husband working 70 miles away in Nyac). I also kept trying to say Allison Allison Allison because she was coming over with her daughter that I babysit at 9 AM. They at that point also had my purse and phone and were trying to figure out my name and phone passcode. We do not have family in Kingston, and moved here last October.
With minutes the ambulance was there with the police. The crew put me on a stretcher and I just kept mumbling ‘my son my son my son’ and they told me he was going to the police station until my husband got there. That was OK but I was very stressed out, and apologetic. I am not one to want an interruption or to cause any fuss. I kept mumbling because I wanted to try to keep out of the moment. I didn’t want to feel the stroke. I wanted to stay out of it, and stay with my son. I kept the loop going as a coping mechanism.
Brooks didn’t move from his chair and just kept eating his bagel. When I looked at Brooks before I fell to the ground, he quickly looked at at the wall, and didn’t turn his head towards me at all. He stared straight at the wall without any glance. It broke me a little and made me mad at life like why would this happen, this isn’t how I’m going to die. I tried to say “I’m sorry I’m sorry” it hurts me to think about, but I know that at two years old maybe it was a coping mechanism for him not to see me like this? This vision haunted me for the ensuing 24 hours. I did not want that to be my last vision of Brooks I just didn’t. I knew, I knew there was more to see. I knew that wouldn’t be the last time I would see him but I took a good look at him and imagined his life without me. I just knew I was supposed to be a part of it. I didn’t want him to be motherless. I just couldn’t see it! I thought to myself ‘I don’t even know him yet! It’s too early! I don’t want to die! I haven’t even fully seen his life yet!’
Meanwhile, Nick was somehow notified, left work in Nyac, and called my parents to tell them what was happening, called his family and told them and everyone offered to fly out and help.
Right when I got to the Kingston hospital I was given a CAT scan. The cat scan revealed that I had a clot, and I was given some kind of clot remover called TPA. I was then placed in an ER room and left alone. I kept repeating ‘how is my son’ and they did keep affirming that he was with the police and was fine playing games and eating candy, which I guess is a dream come true for him. They also told me they had called Nick, and then for some reason they gave me my phone.
I was able at that point to dial with my left arm, slur talk to Eleanor‘s mom Allison, The mother of the girl I was supposed to be watching at 9 AM. I’m not sure if they picked him up at the police station or if the police delivered him to the house but they ended up taking care of Brooks so Nick could be wherever I was at the time. While I was on the phone with Allison, I was slurring my speech and crying. After that phone call then I started calling out ‘mama mama mama’ so I called my mom. she was already booking her flight out, and she kept me on the phone. with my moms phone call I started to feel nauseous, and my jaw started to clench. I was trying to call for the nurse, but she couldn’t hear me. In reality at that point I could barely yell for her. I was upset because she was never looking back at me to see me upset, so With my good arm, I started dropping my bag on the floor dropping whatever was on my bed, to get her attention. I even dropped my phone thinking ‘if I drop my phone my mom will freak out and call 911 for me.’
Once the nurse finally did turn around, she was shocked, and called for help. I went into full arrest with the medication. I was turning into a vegetable. I started foaming at the mouth, both hands started curling up to my chest in paralysis like a t-Rex. My fists were clenched and I couldn’t fully move my legs. Both sides of my body and that point were semi paralyzed. I was gasping for air. I still had a part of my core, or maybe it was contracting, but I was able to move it around. The nurses were all very scared and I could see it in their faces. It wasn’t helping at all and making me very scared and also very angry. I was muted screaming a lot saying no no no no, trying my best to thrash around, and kick my legs.
I heard one nurse say “go get the ventilator” and at that point I saw my life happening. I saw all the lights and scared faces referring to me in the 3rd person. I thought “this is not happening! I said in my mind ‘no no no no this is not how I’m gonna die this is not how I’m going to die - it’s not - it’s not right - this is not how I die.’ At that point I mustered all the strength I could TO NOT DIE and just stay there with them. slowly the medicine passed enough so that I was no longer a vegetable. It felt kind of like the scene in fear and loathing in Las Vegas where he loses control to whatever drug he was taking, and is crawling around the casino- I felt like that. at that point all four limbs were tingly and semi unusable. Nick showed up, so that told me it had been over an hour at that point. he saw me in a droopy vegetable state. He stood by my bed and told me I was being flown to Westchester. I was still ready to fight, and didn’t want to go.
Apparently what was happening was my body was responding to the TPA that they put in my body to get rid of the clot and what It did was break up the clot a teeny little bit but then it moved all of the paralyzation into my entire body.
Once the Westchester medical team arrived, they put me at ease for a bit. They put me in a helicopter to Westchester Hospital. A woman was there the whole time cheery, positive and constantly talking to me. Half of my body at that point -my right side -was completely gone, my left side was tingling, my vision doubled, and I was embarrassed that nick had to see me with a droopy face. He drove to the helicopter too, said goodbye, and all of us started to journey down to Westchester.
It was a very scary ride. I didn’t want another episode. I was very scared, and barely looked out the window. At first I did think “oh good the trees and view will calm me” but NOPE. I stayed very still & silent. My entire body was tingling and numb and I was seeing double and only able to look out of one eye at a time. I also didn’t want to relax because a part of me was also saying ‘just let go just let go’ and I didn’t want to let go - I wanted to fight - I knew this wasn’t my way out. The medics in the helicopter would periodically show me a thumbs up, to make sure I was still with them, and I was. I would respond with a small nod.
Once we landed, I was rolled away by the team that prepped me for a CAT scan. First they asked me all the questions : could I see their pen, could I touch my finger to their finger and then touch my nose? If I was seeing double did I see things side by side or top and bottom? Could I say my name and birthday, where was I, what month was it. All of this was done while going through the hospital it was very frantic and fast. At that point I was seeing double and I could not touch my nose to my hand. A woman walking along side my stretcher. She gave me strength. She was tall, and dressed like someone from my childhood - very 80s. I felt like she was a calming factor and I even felt like she was at my side during the scan, but that can’t be the case if I think about it rationally. She also gave me a Covid test while I was in the Cat scanner and damn! That really hurt!!! It was an immediate test and I was negative so it has been ruled out.
After the CAT scan, it was confirmed that there was a blood clot in one of the main arteries going to my brain. They told me about it, and they brought me in to the surgery room. They started to prep me for anesthesia. They asked me to sign the paper signing my life away and told me that I had a 10% chance of dying. (Nick was told 50% by the surgeon so my number might be off but I remember hearing a 10) i used all the strength they could to scribble some initials and sort of sign my name. I even remember being sarcastic about it and apologizing because my handwriting is so sloppy. By that point I could now actually talk out of my left side. I was started to get used to that I was able to communicate.
the anesthesiologist was so wonderful and kind and telling me about what they were going to do and I just nodded and said OK OK OK I was going to be put under. I felt ok about it, or so I was trying to tell myself. I was still scared. I was preparing myself at that point to let go and lean in. During the process they realized that I still had my gold bracelet on that I wear every day. They tried to take it off of my wrist - I remember helping them - and we tried to move it over the iv but it wouldn’t budge, and I remember him saying something like “we will just keep it on” and it kind of feeling lucky to me. This is also an example of how rushed and in the moment we were.
Then the surgeon announced he had a new plan. I remember the room got very quiet. The anesthesiologist all of a sudden got very quiet with me and was asking questions to Dr. M’s associate on the new course. The room had a different vibe. All of a sudden everyone adjusted their plans, and the associate surgeon read me different rites and said I had a better chance of survival if they went in through my wrist, and I took a local anesthesia in my hand. I Remember I said “yes let’s just do it just do it just get it over with”. I was still very un-phased about it, and relieved that I didn’t have to fully let go into the anesthesia. That idea was starting to scare me. I wanted know what what happening. It just felt like a more secure option at the time, so I went with it.
They then turned off the lights according to the surgeons orders and everyone still stayed very quiet while he started to work. I focused straight ahead, which was above me, on a metal reflection and using one eye at a time, stared at that while keeping my arm still. In the beginning I had a metal bar to hold on to. At some point I must have moved because the metal bar was no longer in my grip, but the surgeon next to me helped secure my arm in place of the bar.
“I don’t move don’t move” that’s what I kept repeating in my mind ‘ just stay still just stay still just stay still’. I didn’t want to close my eyes I was too scared. keeping one opened kind of kept me sort of out of what was going on, if that makes any sense. Kind of out of what was happening, I was able to just look at the reflection or small light, and just think about that. Closing my eyes to me, was more scary. Keeping one open at a time meant that I didn’t have to focus on any feelings.
I twinged a little when he hit the clot near my brain. it hurt hurt really bad. I said out Ioud “ouuuuch” but I didn’t cry. I hadn’t felt any pain yet, so it was a little bit of surprise. My visual was kind of like someone taking a pottery tool - the kind with a triangle of metal on the end - and scraping the bottom of my brain with it. I didn’t move. I stayed still. They talked to me when that happened ‘are you OK, what’s going on’ I told them that it hurt and they reassured me that it was almost over to just stay still so little bit longer. That kept me going. I trusted them. He took two swipes that hurt and pinched. it felt like a migraine and being pinched inside my head at the base of my brain. “ow ow ow’ and I think I said .da da da da da da da’. It also felt like relief. Like someone sucking a migraine out of your head.
After the clot was removed everyone was so proud of me and it felt like the room may have cheered or maybe it was just a sigh of relief that I remember. Whatever it was, it felt universal. I felt very proud. The surgeon took pictures and was very proud of everyone too. I was sort of un-phased at first but still proud and relieved, thinking this was an every day occurrence, and a part of me was thinking “ok I’ll be back at it next week, I need someone to pick up my car”.
one of the supporting surgeons (dr. Dakay) was holding my arm, she was a major source of strength. I knew she wasn’t the one at the time performing the surgery, but she was the one right next to me, securing my arm, and saying the most to me. There was a sense of female solidarity. I wanted to make her proud too. She gave me a sense of security too. After the surgery, She said to me that I was the first to do that with a local through my wrist and I was so beyond proud. She kind of drilled it home that this was an important surgery, via her look and that she came back to me to tell me that.
On the operating table, the moment the clot was removed, I could see out of both eyes, and wiggle my toes. I remember looking down at my feet and moving both at the same time. Everything came back instantly. I could literally stand up and walk away. I was thinking that is what everyone is so excited about. This outcome puts me in a new percentile of 10% zero rehab . Reality is you don’t let anyone just walk away, you have to stay lying down for at least 24 hours.
In total from the stroke onset at 7:45am, to the surgery, it was a little over 5 hours later. Surgery finished around 1pm.
From there I was taken to recovery care and watched for hours upon hours maybe 12 + hours by a woman named Jennifer Q and she told me about her brother who had a heart attack at 45 and lived a long life and it still living and has teenage boys that also gave me hope. She kept looking at me and being like oh you’re good! She actually let me sneak Nick into the recovery unit! The unit is like the emergency triage filled with recovering accidents before they get parsed out their units in the hospital. It was a little scary, and I made the nurse shut my curtains so I could focus on the miracle that had happened. Nick helped. He looked at me, smiled, and held my iv hand. I was glad he didn’t have to see me in the paralyzed state. It was a brief meeting but it gave him enough solace to drive home and be with brooks. That had to have happened before 5pm, because that is the cutoff time for visiting hours hospital wide. Jenn was also impressed when I asked to take my contacts out. She was like “you did that surgery with your contacts in!?!”
After 12 hours I was moved to the ICU unit and left to sleep. I was terrified because I no longer had my own personal bedside nurse, and a woman on the monitor above my bed told me that if the stroke happened again, she would reappear. That actually terrified me even more. I was unable to sleep because I was very scared of closing my eyes and it happening again. They say that is very normal. I got about intermittent 10 to 20 minutes of sleep that night. My aftercare nurse Jenn came up just to deliver my contacts to me when her shift ended. She also wanted to check on me. I think it was 5am by that point. I started crying again out of the shock of what had happened. Still in disbelief and crying because I was afraid of sleep. I asked her more questions about her brother: does he still run? Does he eat healthy? She said yes to both.
Day 2:
The next day turned into a feast of interviews with doctors and their teams stopping by for me to tell my story and hearing their reactions was incredible. the first doctor to visit asked to inspect the groin incision and I had to correct him that they went in through my wrist and he said “you’re the patient, wow!” Then he proceeded to tell me that they were going to put me through a workout today, to figure out why this happened. And they did!
Doctor Mayer stopped by with his team, They spoke about Dr. M as innovative and risk taker, and I loved every word of it. I felt that way as well. I was sitting in a chair, having just passed the physical therapy tests, and I retold my story. I was shaking with adrenaline. The second I mentioned buzzing every single young person on his team started to look at their phones and look it up. He never took his eyes off of me. it just shows the generational gap sometimes the younger kids want to know immediately. I get it, I did too. But he was more interested in me, and me telling the story of how I was sitting right in front of him. He asked if he could take my picture with both of my arms raised. I was embarrassed because at that point I pretty much look like hell but I said yeah sure why not. He then set me up with a dose of praise in saying I was brilliant and bright and a special person and a miracle and that if I didn’t believe in God now maybe I should. After he left I asked one of the nurses “does he say that to everybody?” and she laughed, and said absolutely not. he’s apparently traveled all over the country studying neuroscience and is now here. She also said he has incredible bedside manner. He was dynamic I really appreciated him. After he left my room with his team, I heard him say “ this is why we don’t treat people like robots. they have life affirming stories to tell. That was the hook.”
Another neurosurgeon that stopped by was more on the medical side of things. I loved him because of that too. He did tell me that when he heard of the surgery that Dr. M performed he sent him a quote from Shakespeare. This made me smile, thinking about two brain surgeons chatting about Shakespeare over text - I loved it. I need to look up the Shakespeare quote. This doctor is the one who did interrupt me when I said ‘bagel shop’ and him and his team definitely confirmed that we really don’t need carbs. he said “well we won’t be going to the bagel shop anymore”. I said “I know you’re right I totally won’t be going, except to say thank you” (sorry Sunrise. I still love you though) .
The next 48 hours were filled with MRI, CAT scans, EKGs, and a multitude of tests an occupational therapist who are stunned because literally within 24 hours I was standing up and brushing my teeth
every time a doctor comes to your bed they ask you if you can feel touch, so look straight ahead while they look in your eyes with a light, to touch their finger with your finger and move it back from your nose to finger quickly, raise your arms, raise your legs, smile, raise you eyebrows. I had it memorized immediately and was moving slow because my hands were filled with ivs.
Third day:
Dr. Mufti stopped by my bed smiling, and said do you remember who I am? And I said I’ve been waiting to meet you again you saved my life I love you. It was like meeting a lifelong friend. We had a long conversation about why this was such a big deal that I stayed so lucid during the surgery. Dr. M also told me that he wanted to keep me awake because the part where the clot was is near consciousness in the brain so he wanted me to stay with him- apparently him and I were chatting back-and-forth during surgery. I’m sure I was chatting but probably don’t remember it because I was so focused with my eyes at starting at the ceiling. He said when he heard I had a two-year-old son he really wanted to work on me because he also had a two-year-old son and he imagined his sister or his mother laying there. He also took me because I am a lower risk, because I am generally healthy and young. his partner was scheduled to do the stroke when it was called in but he ended up taking the job when he heard about me, and his partner stayed on a different job. When I told him that his other colleagues were referring to him as an innovative RiskTaker he laughed and did say that only one other person is doing the surgery and they’re in Manhattan. we called each other superheroes. he shook my hand and I told him I loved him forever and thanked him.
Day 4:
They just stopped by to explain what has actually happened. All of my tests have cleared, I have no clotting in my legs, I have no heart arrhythmia. We have no history of strokes in our family. One of the arteries to my brain is damaged. There is a slight tear in the lining of the basilur artery. somehow, that is where the clot formed. Maybe it was a month or two ago, we don’t know, but it’s new. I have no diseases. I am always struggling with my weight, but the tear has no attachment to weight. Moving forward I’m on medication for the next 90 days called Plavix to thin out the platelets in my blood and to help heal that artery. I’m also taking Lipitor to lower my LDL and aspirin to thin the blood. None of these are permanent. One of the doctors suggested I can live to 112, if I lower my BMI to 24.
Day 5: anxiety. I started having a panic attack on my hospital bed and was crying and shaking. I thought the stroke was coming back. I’m paranoid of moving my neck. I’m scared to leave. I’m scared to even think about it now. A neurologist came by to talk me out of it. I can’t take anything else to help me relax, because my liver is working overtime. The best advice I’ve received today is from dr. Kamas - he was apparently the third surgeon sitting next to me during surgery. So it went dakay, mufti & kamas. Anyway, his advice is to focus on the new card I’ve been given. The new card is life. The new card is a second chance. The new card is gratitude in a simple blade of grass.
So when I start to spin, I’m trying to say NEW CARD NEW CARD NEW CARD.
I was released at 5pm. When I was wheeled out and first saw the sky I cried. I cried in the fresh air. I cried a lot of tears just feeling brooks again. Feeling his soft skin. Listening to him say mommy better. Listening him tell me that he got to hear sirens and police! Listening to him cry and whine. I’m here for it. I’m here I’m here I’m here. New card new card new card