What’s It Like?

What’s does it feel like to have a stroke?

It’s about to get real …

It’s waking up, knowing something’s wrong, but being too disoriented to think correctly. You KNOW something isn’t right.

It’s realizing in about a minute that half of your face is numb.

It’s starting to get a pit in your stomach, realizing something is really, really wrong.

It’s trying to wake up your spouse, but realizing you are unable to move half of your body. Numb.

It’s having vertigo so bad, you can’t stop throwing up, so an ambulance has to be called to try to get you help.

It’s the EMS trying to WALK you down to the ambulance, all the time questioning why you aren’t walking correctly, and why you keep throwing up.

It’s being VERY confused, because you don’t know how to answer their questions. 

It’s realizing you can’t swallow. Something’s wrong. Your spit LITERALLY.Won’t.Go.Down.

It’s a nurse being in a total rush in the ER, and not listening to a word you say. “It’s BellsPalsy. We see it a lot.” It’s not BellsPalsy, Sir. I’m not stupid. I know what BellsPalsy is. This is not BellsPalsy. If anything, it’s the opposite. 

It’s the PA coming in and saying it’s nothing but BellsPalsy (NO it’s not) and Benign Prostatic Hyperplasia. — NO IT’S NOT. Something is really wrong.

It’s being discharged while being told it’s nothing to worry about.

It’s falling later that day, and being home by yourself, unable to get up.

It’s dragging yourself to the phone, while sobbing, asking your parents so come help you.

It’s all of a sudden unable to move either leg, half your body is numb, you can’t move your right arm … and what the heck … you peed your pants.

It’s your dad rushing you BACK to the hospital.

It’s hearing a nurse in the hall saying you’re just drug seeking. (I had NO drugs … even prescriptions … in my system, and I asked for none.)

It’s a PA giving you lidocaine to drink, even though you told him you can’t swallow. This lidocaine completely numbs your throat, so now you can’t swallow, can’t clear your throat, and can hardly breathe.

It’s a PA telling you he looked at an MRI you had taken two months ago. It was “normal,” and they need the bed for actual emergencies, so you are being discharged … again.

It’s going to a neurologist, just to be told they can’t do anything but tests.

It’s having a solid, good job one day, and then reality smacking you in the face. In an instant, your career is gone. Should have rethought that short-term disability insurance … but what are the odds I’ll ever need it.

It’s going for a lumbar puncture (spinal tap), trying to sign the waiver, and realizing your brain knows how to sign your name, but you can’t get you hand to move right for the life of you. The signal from the brain is getting crossed somehow.

It’s the radiologist taking one look at you, and knowing something is wrong. “Why haven’t you been admitted to a hospital? There is obviously something wrong with you? You need to GET OUT OF THIS TOWN and get a second opinion!”

It’s the radiologist’s nurse sneeking you the name of a specialist, because SHE can look at you and see something is really wrong.

It’s falling smack out of bed, because your brain forgets you can’t get up.

It’s being unable to eat solid food, and choking when you try to drink anything. 

It’s FINALLY going to DUKE, and having them admit you within 15 minutes. “We can LOOK at you, and see something is wrong.”

It’s being admitted to the hospital, an hour and a half from home, for 14 days, while getting every test known to man run on you, and being scared to death.

It’s doctors. Endless doctors for days. None of which agree on the diagnosis or treatment.

It’s not seeing my kids for days.

It’s not being able to walk … even to the bathroom … alone,  causing a LOT of bladder accidents. After a while, it’s not even embarrassing anymore.

It’s coming home, realizing the hospital doesn’t magically make people well. 

It’s having a diagnosis, but no real idea of how to treat it. “Let’s try massive, gigantic, ridiculous amounts of prednisone.”

It’s coming home, unable to care for yourself; having your kids watch while you are unable to care for them.

It’s your kids being so scared something will happen to you, one acts out like crazy, and one clings to you like you’re going to vanish at any moment.

It’s going from taking one pill a day, to taking 14 a day to try to suppress another “incident.”

Pills for days

It’s endless doctors, PT, OT, and more doctors.

It’s being BROKE.

It’s having to start chemo once a month, feeling awful from it for three weeks, just to do it all again in a week. Is it working? They don’t know. “It will hopefully suppress the immune system so you don’t stroke again.”

It’s gaining 50 pounds, feeling very swollen, getting horribly painful stretch marks, not recognizing your own reflection in the mirror, and outgrowing all your “real” clothes due to the prednisone and the chemo.

I can only wear … can only fit in … leggings. Leggings are pants.

It’s still … six months later … feeling like you’re living in quicksand, feeling like your weighted to the ground, and being dizzy every time you move.

It’s having strength, but not able to move your body correctly … having neurological weakness.

It’s still not being able to control your bladder, and having to wear Poise Pads 24/7 like a 90 year old.

It’s still not being able to provide for my family … watching my bank account dwindle to nothing.

It’s having to admit that I have *gulp* a disability.

It’s having people at Walmart telling me that the riding carts are for “people that really need them.”

It’s my 9 year old telling me she cries sometimes, because she’s scared about me.

It’s the waiting. The endless waiting. The claustrophobic waiting … for a ride … to get better … to feel my foot … to feel my face … to work.

In my bed. All day, every day.

It’s constantly having the feeling that I’ve been to the dentist, and my face hasn’t “woken up” yet. 

It’s feeling at the same time like I’ve sat too long on my left leg, and like I have shingles all up that leg and abdomen.

It’s still not being able to do simple fine motor skills … like writing or putting on makeup.

It’s your neurologist saying he would have expected me to be further along by now. I “might want to look into a less hands on career … but you won’t be working for a while. We’ll reasses at one year.”

It’s having no control over your emotions. You’ll be perfectly fine, laughing even, one second, and sobbing uncontrollably the next.

It’s knowing this happened for a reason, but having no clue why. Why me?? Why??

It’s being at your absolute lowest point, but being beyond blessed by friends, family, and people you don’t even know.

It’s learning you’re a blessing to others, even though you have never felt worse about yourself.

It’s my existence.


If you have any questions, feel free to ask. I’m an open book. I know I would be curious too.

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Join the Conversation


  1. I love you. And this is going to get better… one way or another. Your stronger then some male cancer patients I know that are suffering not even a quarter of what you are and not doing anywhere near as well. You’ve got this.


  2. I became sorta upset reading this, but also admire you spirit. To me there is absolutely no excuse for the lengthy time period it took for you to find a doctor that would listen. I will leave the rest of my comments to myself, being there are strong words with reasoning for the way I feel about your suffering this day & time with so much modern medicine supposedly at our disposal. Keeping you in my thought & prayers


    1. πŸ’œThank you! I just praise God SOMEBODY finally listened to me! I went to three ERs and countless doctors before I found a neurologist who had answers! You have been so sweet with your support. Thank you!!


  3. Amanda, I thank God you are driven and intelligent and able to voice what you are going thru. This will help you help others. Just remember in your darkest moments there are many who love you and pray for you and believe in you. Oh and thank God for Duke. xoxo Kathy

    Liked by 1 person

  4. I just want to say you’re an incredibly brave and strong woman. My cousin was diagnosed with breast cancer a few months ago, and it’s been absolutely heartening to see her grow through chemo. I can’t even imagine what you brave women go through.

    Liked by 1 person

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