April 2024 Niels Mank

Niels Mank was born in September 1976 and died on February 11th, 2021. Niels 2.0 was born on February 11th, 2021. Much like a newborn, I do not remember my first week of life, as I was in a medically induced coma in the ICU ward of Maine Medical Center. Before we get into all that, let’s go back to the beginning.

On December 10th, 2020, in the middle of the COVID-19 Pandemic, I got ready for bed and my Apple Watch popped up a notification, “Atrial Fibrillation,” and the wording on the screen said something to the effect, if this is normal disregard, if not please contact your doctor. The next morning, I arrived at the ER via ambulance with a 205 bpm heart rate and a huge team of medical workers wheeled me in like I was dying. They put me in the center of a large round room, hooked me up to every monitor they had, and took me in for MRIs and CT scans, ultrasounds, and blood tests.

The results came back from all the scans…I had a massive aortic aneurysm. When I say massive, I mean really massive. My aorta was 6.1 cm when it should have been 2.0 cm. They found this was caused by a leaking heart valve. I learned I had a bicuspid heart valve instead of a tricuspid valve, meaning I only had 2 not the regular 3. Not a big issue normally, but mine was leaking and causing a huge aortic aneurysm.

My open-heart surgery was scheduled for February 11th, 2021. I entered the hospital (COVID-19 lockdown) and was taken to the pre-surgery department. It was February 11th, 2021, and that is the final memory I have as Niels 1.0. I suffered a blood clot from the surgery that traveled to my brain and caused the stroke. My wife was told I would not know who she or my kids were, and if I survived, I would spend the rest of my life in a nursing home and to prepare.

February 17th, 2021, was my first day alive and awake. I remember waking up in the ICU to a familiar face. My old neighbor Jenn was standing in front of me talking to me. She was my PT nurse and informed me that I had suffered a massive stroke. I did not comprehend that, but she walked me through some exercises. I was weak and my chest hurt from the surgery. I could not do anything other than touch my face with my right arm. I Facetimed with my family, but I did not recognize any of them except my dog.

February 19th, 2021, was the first day of my recovery. Instead of an OT nurse, my wife walked into my room, and I recognized her. There was a shortage of OTs due to COVID-19, so she advocated for me and got me the start I needed. She had a newspaper and some dice. I was so happy to see her, my endorphins started racing. She ran me through some OT exercises. Her father had suffered a major stroke 3 years earlier, and she basically became an Occupational Therapist as a result. She had me working on my left-hand motion and fine motor skills as well as my memory. She was only allowed to stay for 1hr of therapy, but it gave me the hope I needed to push through this as well as the tools to recover. She left me with a couple newspapers and told me she would be back tomorrow and wanted every page crumpled up in a ball using my left hand only.

The next day she returned and we worked on writing the ABC’s as well as all my family’s names. I looked forward to her visits as I felt like I was becoming myself more and more each visit. Little did I know that “ME” had died a week earlier.

On February 24th, 2021, I was transferred by wheelchair van to the rehab hospital. I was told I would be there until I was ready to go home. My wife was told I would never be coming home and rehab was just the next step towards my new life in a nursing home. I was also told, “NO VISITORS” in rehab due to COVID-19. I was disheartened. My wife was my motivation, she was my ongoing support, and she was my rock. Due to the doctor shortage from COVID-19, I was not getting the OT I needed from the hospital.

March 11th, 2021, one month to the day from my surgery, I was discharged from rehab. I think it was because they had so many staff shortages that they thought I would be better at home with my wife. They were right! My wife picked me up, and we drove home. My daughter and kids were there because COVID-19 had forced them into remote schooling, so they had converted our house into a classroom. It was so good to see my house and my dog. I would nap daily from 3pm-5pm to rest my brain. This is a very important step—the more you can rest your brain the better. Exercise, rest, repeat when it comes to the brain.

Nights were the worst because getting out of bed required help from my wife, so every 2 hours I had to wake her up to help me. Getting dressed was a challenge, as my left leg/foot would not work properly and my left hand could not hold/pinch anything.

That first weekend was a long weekend. I was thrilled to be home but quickly realized I was a strain on my family as I could not do the things I used to do. They were amazing and never complained, but the feeling of uselessness could not be stopped. I realized my house was a nursing home and the nurses were my wife and daughter.

I was a walking, talking miracle. I should have been dead everyone kept saying to me. It made me so mad and still does to this day. I did die! Niels 1.0 is dead! He died on February 11th 2021. I am not the Niels you knew. I have his pre-stroke memories, look like him, talk like him and mostly act like him, but I am not him. The Niels inside my head is long gone, and that is the hardest part.

My least favorite question was and is, how are you doing? I never know how to answer. Do I say, I am doing fine, better, okay, getting better every day, it is a hard day, or not good? What do I say because the truth they cannot understand. I am lost, emotional, sad, mad, angry, negative and about a second from losing it. I find I usually lie and say, “Good” just to get past it.

Over the next few weeks, I saw my PCP, my cardiologist, my cardiothoracic surgeon, my neurologist, a rheumatologist, and my sleep doctor. Everyone had something to chime in on from my procedure. They all reported great progress and labeled me a miracle. I had gone from a 38 on the stroke scale to a functional person, physically at least. My neurologist showed me my brain scans, and I got to see how much of my brain they are sure I lost. My frontal lobe was severely damaged as well as my right hemisphere. This caused me to have issues with short-term memory, my spontaneity, trouble making smart decisions, sudden outbursts, my anger, left arm drop, hand function, and foot and leg issues. My smile is gone, and I look like something is wrong or I am lost all the time. I find people are asking me all the time, “what”? And my response is, “what” and they say, “oh, you look like you have something either on your mind or want to say something.” Well, I don’t!

As soon as I got out of rehab, my wife tried to get me in to see an occupational therapist but none had openings due to Covid-19. My wife ordered a Flint Rehab system to assist with my stroke recovery. This was one of the best tools for my brain recovery as well as my motor skills, and I use it to this day.

Positivity & Karma, I am alive today because of who I was. A positive attitude was always preached to me by my wife, now it’s all I have and without it the stroke wins and I try hard not to let the stroke win. I am in control of my life. This is my new life, and only I can control how good it will be. I look at things with the attitude, what do I stand to gain by this versus what do I stand to potentially lose? Positivity is everything, I was a 38 on the stroke scale, and today I am here, walking, talking, speaking, and hopefully motivating people to be your best positive self. If you are, nobody can get in your way.

-Niels Mank