The number one question about my stroke is:

What does a stroke feel like?

Well I’ll start with this: a small part of me knew I was living life with both ends of the candle lite. Working my ass off, driving hours to a job every day, working hard, raising kids, taking care of a monster house/pool/yard. I would whisper slow down your gonna kill yourself. But being full of power, smart, and determination always won that battle. I felt numbness in my arms at times and even went to the doctor (yup a real doctor not one I worked with). Positional vertigo. Ok then.

I decided to take a vacation day which truthfully were adding up due to the job demands I never seemed to use this luxury. I worked all day long fall cleaning out garden sheds, raking, laying grass seed and fertilizer into the place where my pool used to be. Went to get a pedicure appt with Megan at the end of my day to celebrate a full day of dirt. Went to bed tired without hydration or 81 mil aspirin cuz I was exhausted. Got up at 6:00ish. Poured my coffee in my favorite cup for a Sunday morning although it was Saturday. Put in my contacts went to bedroom to change and I fell. Spilling my coffee on rug. I couldn’t get up my left side was dead. No pain no warning. My daughter heard my fall without the later putter patter walking, from downstairs. She came up and called 911 as soon as she saw I was non responsive. I don’t recall being of my right mind until I was in the ambulance and the paramedic was cutting off my good pajamas and said nice toes! I thought oh how nice that I had a pedicure but words nor my eyes would function. I went to Lahey ER and they keep trying to talk to me I was not understanding any words or commands. The kids I think were there by then and gave permission for a medicine called TPA. I am thankful they did. It forced my blood to take a different route since my carotid artery was 100% blocked. It wasn’t smoking, high blood pressure,cholesterol issues. It was a small tear in the lining that acted as a dam and over time stopped blood flow. On my right artery. I think it could of happened when I was a passenger with my seat belt on in an accident. But who knows. They throw my body from table to table thru machines like tunnels I figured I would stick to the refrigerator eventually with all the radiation machines I was in. My health was perfect per all the lab tests. I still have low blood pressure and always have. Although these days I have a quick pulse.

They gave me IVs and pumped medicine in me and the look on my kids face was horrific. Shots of meds in my stomach, arms, thighs. You see my face had melted off. I couldn’t understand words, get up, move or speak. In ICU I did hear I had a small chance of making it. They gave me a score which was not good not that I knew what that meant. But I knew I was at their mercy. Drugs burned thru my veins, made me have lower stomach pressure of which I thought, am I soiling myself? Of fuck that, my pride is now not in existence anymore. I’m the kinda girl that matches my bra and underwear so for me I was always prepared for “ what if your in an accident” mom warnings over years. I do however have emotions. I look at my children’s faces and although they are scared they have a look of love too! I know they have my back so I drift out of life. I was simultaneously anxious and relieved with all the whispers around me.

Fragments of life drift in and out. I always lived my life without regrets being deliberate in that way. I drew a tapestry in my head of these fragments. Silk thread weaving in and out of soft fabric (I used to sew) people were colors not people. Maybe it was a garden but it looked like a tapestry to me at the time. If faith is not a belief but is faith is when your beliefs has been blown to hell. (Ram Dass) So Yes I think I have faith that life goes on, I received all my sacraments in the Catholic Church I dropped to my knees every night and Prayed for people I didn’t know. That homeless man I saw every morning in which I pasted thru the window a few bucks not caring if he used it to get drunk or why. But whatever gave him peace. I believed His word and tried to be a good Christian. I was a Girl Scout leader for a decade, I volunteered on boards like the housing authority, Y2Y, youth on fire, the Boston home and so on. Well I did get divorced but my church didn’t care about that by this time. I now believe that the spiritual journey is unorganized and unknown from day to day. It is individually lived. You can’t control it nor should you. But you must be present to experience it.

I tried to live in a thoughtful way too. Leaving a great job in for profit for a purpose filled position. Ya well no bonuses or 401k stock options anymore. But I was doing well by my community of people who needed us the most. Figuring out how to run a hospital for people with No insurance but sick. Take care of them anyway. But once I moved from ICU to neuro I thought about some of the staffing cuts I made in the hospital and now I regret some of those decisions. Experiencing healthcare from both sides of the bed was eye opening. I was the CFO and COO in healthcare my whole life. It was a jolt of reality to be on the other side of the bed. How’s that for karma!

It took me two years to rebuild a new image and self. I spent hours in rehab trying to understand how to walk or just shower. Basics were not my normal. First I tried to get back to the old me, I restarted work which was a total disaster. I could not function in that environment anymore. Then my coworker Pat said you need to read the book “left neglect “. I got it on tape and wow the pieces of my brain injury came to light. I still can’t watch the movie regarding Henry without crying my eyes out. That’s when Melissa stepped in. It was sad to me to have my daughter showering me, cooking for me and dealing with my frustration. She was a god sent savior every day. As was montana who picked up the pieces of the insurance and financial stuff and Meg with the emotional and medical stuff. Today when I say I feel medically the same as I did when I left rehab my kids and friends say NO WAY. You are so much better. Well from my point of view I am not, sure I pushed thru functions to swallow, to eat, to make it to the bathroom, to walk, to use my muscles that (by the way have memory). I have had a functional recovery in many ways. Then the day after a safety check at the house on the day before discharge from the horror show of rehab. I had another stroke, (low blood pressure) back to Lahey, back to pins and needles, MRIs and so on. I had a shorter stay and was discharged again. To outpatient rehab where I needed to humble myself to use the ride bus as I lost my license to drive for a few years. I know they are wonderful but it was still humbling. Then after months of “recovery”. I see my neurologist and he says. “I’m discharging you from my care, why? There is nothing else I can do for you. Oh fuck. I’m not gonna ever heal. I sat in my car and cried for myself hard and long. I felt so hopeless and knew at that moment I was without recourse. So make it look good to everyone else. No pity. Try to toughen up!

So cosmetically I have my annual injection of fillers to straitened out my face, great smile haha. I almost never show up with my cane (pictures is a no way!)I pushed to get my license back and took lessons from my younger sister Roni and son. I don’t go to loud concerts or crowded places anymore so I know how to navigate avoidable stressors. The grocery store is a horror show for me. I still have major deficiencies. Neuro fatigue is real and I am able to hide that from some. Lynn and Meg always knows though. I now also know how to ask for help which is huge for me. Today, I walk as much as I can every day dragging my left side along which is as heavy as cement. I can’t hear, see or feel on the left. But technically I have full function but my brain does not know it. I can read words but vowels do not connect them. It’s hard to proofread even this but writing is a go forward motion so writing can work, whereas reading does not. New words I must google . And I could not live without my smart phone. No feeling for my left cement side so I dont have any pain either which can be a blessing and a curse. So hopefully by now your understanding a bit more now. Clearly the stroke was not painful it was the recovery and the 2 years of recreating a new life at 58 years old. Not fully functional but full if tenacity and hope. With the love of friends an family holding me up (literally) each day. I have a brain injury that will never heal but I am going to live life to its fullest every day I wake up.

Today I cannot understand the term “near-death” because if anyone actually experienced it. It was more of a feeling that the depth vastness, complexity of everyday in your life of which a light has been shone on. Seeing things that would normally of gone unnoticed. I felt completely unencumbered. Finally letting go of the stupid crazy beliefs of my past life. I am free.