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It seems like a few years ago that I had the stroke. But it’s almost seven years ago. April 8, 2009, is the date that is burned into my consciousness. The date follows me around, like the devil that it represents. Playing piano by ear, knitting scarves, clapping when required, all gone. People say, “Be positive,” but sometimes, I just can’t. A stroke doesn’t make me stronger. It just reminds me how fragile the human body is. Some people say “re-birthday” when they celebrate the date on which the stroke happened. “Re-birthday?” Give me a break.

That being said, looking back, I have accomplished some things that make me know that I’m progressing. There is my book, “The Tales of a Stroke Patient,” published in 2012, that documents all the time before, during, and after the stroke. I liked writing the book. For me, it was a catharsis, a chance to scream about awful CNAs, nurses and doctors who pretended not to hear me, all the time keeping the names of the rehab facility and the nursing home out of the book. (It was Bacharach Institute for Rehabilitation and Absecon Manor Nursing Home, both in Southern New Jersey. I don’t give a shit now).

I started a blog called the same as the book, “The Tales of a Stroke Patient,” in 2010. I still write it, as long as there are people to read it. (There are 15 million strokes a year worldwide so I imagine I won’t run out of readers). Currently, I have almost 112,000 people reading my blog, though some are faithful fans who read it several times. My dashboard tells me I’m read in 6 out of 7 continents, Antarctica the holdout. I don’t have anything against the Antarcticans. They are probably busy with global warming.

This month, the University of Pittsburgh Medical Center and I are starting two new stroke support groups (well, one’s a group that needs to be resurrected and the other is new), and I am the leader in both. My mission is to help stroke survivors get an improved sense of self, to achieve for them what I couldn’t achieve for myself back in the day: dignity, self-esteem, and empowerment. You’ll be amazed at the speakers we’ll book.

Nobody understands a stroke survivor aside from stroke survivors.
People write to me at least once a month saying, “My [husband, wife, friend] had a stroke and it’s so difficult to talk to my [husband, wife, friend] because of the anger and frustration coming out.”
“Of course,” I say. “How would you like your life turned around in just a millisecond?”
Some people get it. Most don’t, and that applies to health care providers and caregivers, too.

I fell, sometimes hard, breaking different parts of my body, I’m misunderstood though that’s getting less and less, I drop things that need two hands to hold, but through it all, I’m still here. Why? It’s like I told you. I have a mission, and it won’t be completed any time soon. I’m moving to Portland, OR, soon, and the mission goes with me. Always the mission….

Joyce Hoffman

Joyce Hoffman

Joyce Hoffman is one of the world's top 10 stroke bloggers according to the Medical News Today. You can find the original post and other blogs Joyce wrote in Tales of a Stroke Survivor. (https://talesofastrokesurvivor.blog)
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Joyce Hoffman
8 years ago

Steve, I want to keep telling it like it is for a long time. Thanks for your comment and the awesome poetic format!

8 years ago

Thank You
For being you
You tell it like it is
Wish we were neighbors
I'm not so good on PC
Your story is so true
It bring's tear's to my eye's
ANGER in my core & love in my heart
Thank You for being you

Joyce Hoffman
8 years ago

Thanks, all, for your comments.

8 years ago

Just read your book. Great inspiration. Just curious though about many comments you have made about warfarin: is there any chance of changing to one of the new anti coags like eliwuis or pradaxa? I ask because I am on Eliquis. I was never on the predecessor, and I'm not sure I would have accepted it. But the moment I was diagnosed with afib At age 44 I went on an anti coag. I'm terrified of a stroke.


TM Berry

8 years ago

Good luck on your move, and thanks for keeping on with your mission. Stroke survivors everywhere need you.

8 years ago

I've followed your blog for almost a year and finally decided it's time to stop lurking and comment. I also purchased your book from Amazon…Left a 5 star review as it's an awesome book! My degree is in the medical field, and I've worked in various settings through the years…long term care and rehab included. Sad to say, but your book described some people who worked in some of the places I worked. A couple of places I resigned from because I refused to go along with their idea of "status quo". As you know, we never know when it might be us in that same place. People should always be treated with respect and dignity. On the other side, there are some places and people that provide great care. I try and advise just because one place looks pretty and new doesn't mean they give the best care.

I'll try to keep my story short-ish.
My hubby was diagnosed with Addisons disease and hypothyroidism in 2008. In 2010 along came MS. In 2014 he had his 1st fall ever. Never even a stumble prior. He broke his femur and had 2 surgeries over the course of 10 months for the fracture. Six days after the 2nd surgery he had a cerebellar stroke. I work in the medical field, and can say I know we got a miracle that he doesn't have severe deficits from the stroke. He has left side weakness, numbness, and tingling; but not numb enough to NOT hurt. His right leg is weak from the femur fracture and the progression of his MS. He currently walks with a cane or a walker if needed. He has other assorted issues that we're not sure if they're MS or stroke related….or a combo. And at least once a year he has an adrenal crisis, usually out of the blue. Let's just say the EMTs know our house layout pretty well.

My Mom has lived with us for 14 years. She's a lung cancer survivor of 12 years. We have a few acres of land and we built an addition to our house so she has her own area. We do share the kitchen, as she likes to cook. And who am I to deny her that pleasure?? :-).

Lastly I have Lupus with secondary Sjogrens, IC, RTA, and more kidney stones than should be legal.
I'll end by saying my brother has jokingly asked if we have ever wondered if we're living on indian burial ground? Sometimes I've wondered that myself. Obviously I do try to keep a sense of humor…sometimes laughing whilst crying.
Thanks again for blogging and sharing your insight along with your sense of humor. Despite having a medical background, when my hubby had the stroke I found myself utterly reeling. Had to be strong for him and keep it together. I got online, found a few great blogs (yours being one of them) and it certainly helped a horrible time be not so bad.

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