Sunday, March 16, 2014

Sunday Stroke Survival~ Social Media

Why as a stroke survivor or caregiver for a stroke survivor should you Tweet, pin, Facebook, or blog? For a few very good reasons
  • You don't stuff your feelings
  • You find out you are not alone
  • Get and share information
  • At least I don't have it as bad as the other guy
These are just a couple reasons. Nobody knows the challenges I go through on a daily basis as someone who's walked in my shoes. They might not have had as devastating, or easy of a time with their stroke but they know or can relate to some of them.

It is so easy to think, as a survivor or caregiver, and stuff all the negative feelings. Be warned, doing this only hurts you and those around you. By saying you are having a bad day acknowledges those feelings to anyone that will listen. I've had my share over the past year and a half. If I had stuffed those feelings, I'd be in sorry shape about now both as a stroke survivor and a caregiver. I'd be ready for the closest mental hospital and consider it a fun vacation! 
If I post "having a bad day" on facebook, or twitter, myspace, or any of the forums, or blogs that I write, I guarantee there will be at least ten emails or telephone calls from "friends" or family  that want to know what's wrong. That doesn't include comments. I put friends in parentheses because these are cyber friends. People I have never met in person who are closer to me than some my local face-to-face friends. You all know who you are.

Sometimes you don't want to feel Abby Normal. Like you are the only one who is going through this. It is so easy to believe you are. A good portion of my day is spent on the internet for that very reason. Isolation is killer when you are disabled or the primary caregiver for someone chronically ill. As a stroke survivor we are chronically ill. Although in various stages of recovery, we are still not the same as we used to be. You are going to vent about injustices, balk at the way your life has changed, and share progress you've made. Misery loves company doesn't it? Conversely, have you ever had good news that you wanted the whole world to know? This is it! It's not called the world wide web for nothing.

Have you ever wondered if someone has had an experience that you had? If you truly are Abby Normal? Yep, I have. The social media and websites in general are a wealth of information. If you've just had a stroke, that's probably where this is most helpful, and want to know how long am I going to be this way. You are tired of hearing the  "very stroke is different" cop out. There are survivors out there who have been where you are.  When is probably the most asked question and to be honest there is no correct answer. I wish there was. You are part of an elite club that gets 3 million new members a year worldwide...the strokees or stroke survivors. Congratulations! You could be part of the third who have a stroke and don't survive. Believe me when I say I don't always think that I'm so lucky to have survived. You are not alone in feeling that way.

As you find others like you, who are a survivors too, you share experiences conquests, joys, disappointments, and information about being a survivor. Others want to read about these experiences to feel they are not alone. As you age in your survival, you provide a feedback source for someone newer to the club than you are even if they never comment.

I reach caregivers and survivors alike because I wear both hats. There not a week that goes by when a certain someone, Barb, who emails me just to check up on me. She along with Dean, John, Amy, and a long list of fellow strokees that become in some ways closer than family. They know you are struggling and care enough to send words of encouragement or to realize that life is dishing out too much for me to handle again.

I blog about what is going on because I can. I answer all my own emails still. I can't afford a personal assistant on my writer's income. Well, I could but I'd lose that personal touch I value so much. As an author I write and every experience is grist for the writing mill. Not everyone would be comfortable with airing their personal life, but I look at it as a way to measure how far I've come.  I'm a public figure anyhow. To me this is just journaling my journey. Instead of writing in diaries as I did so many years ago, I do it here. No, not everything appears here because I do also have a private side too.

By reading and socializing with others, your life is put into perspective. Things can always be worse no matter how bad they are. I know, I know. This is not ideal, but somehow knowing that someone somewhere has it worse than you makes you feel better. As humans we are competitive creatures at best. You can look at someone else and "there but by the Grace of God go I." There will always be someone worse off than you. You could be me or I could be Sarah (no not you). She's a single mom has no arms and one leg. She also has three children under the age of ten. To me, that would so much worse off than me.

Yeah, it's a reality check or wake up call. My stroke wasn't as bad as Diane's husband. I can walk after a fashion. I haven't had body part amputated because of contractures (knocking my wooden head). I am able to speak more than a few words. I don't have to use a catheter and diapers full time. Yes, by comparison, I am very lucky. As a caregiver we face equal challenges with our respective husbands. The major difference is Diane is not paralyze on one side like I am. Reading my blog she gains a new perspective- as I do reading hers about her husband's stroke and his struggle to be normal. So in turn I'm luckier and worse off than them.

I noticed last month one of the ezines (internet magazines) I republish to jumped on the twitter and facebook bandwagon...finally. Though I do not tweet or hang out on twitter anymore, it is a fast way to get snippets out about stroke info available. My screen scrolls too fast for me to read and respond. Something is definitely wrong with the connection between my eyes and brain since my makes me dizzy and out of control, whereas before my stroke I almost lived there.  

My new love is youtube and pinterest. I can scroll at my speed. Although I've had a youtube channel for some time now, I never fully appreciated it's value until recently. Pinterest is also a new/old thing for me. Whether it's to find something that might help make life easier on me or to share something that helps and may help others. I post items that interest me or helps me write my books as reference. Pinterest is actually a pretty neat spot for visual interests. I learned to knit again using youtube. I can also grow my own food for my rabbits and chickens for less than a quarter of the monthly bill thanks to youtube. Reading too much really tires my brain these days so the 5-10 minute videos fit the bill.

So what does social media offer for the stroke survivor? You become mentally grounded. You are not alone. With networking, you get and share information. And finally, you really don't have it as bad as the other guy. Won't you join us? Blog, tweet, or facebook your stroke today. You and someone else may appreciate that you did. Too shy to put your footprint in the cyber world? Follow multiple blogs. You may not agree with everything being said nor even comment, but be enlightened. No one can do it for you.

Nothing is impossible with determination.


  1. Hi Jo - you are on both sides of the equation aren't you: carer and patient. The brain is an incredible organ and until I came into contact with my mother, and others, who had had strokes I really had had no idea. I don't understand now - but I'm empathetic to what can be achieved, and what you are struggling with- I have huge admiration for you.

    As to carer - yes blogging certainly enabled me to engage across the world with like-minded folk .. and though I don't blog about the caring side ... my blogging friends connected with both my mother and I, as I'd comment occasionally. However we were very lucky as she was able to talk and engage in conversation ...

    My thoughts - it's great that you're still experimenting to see what works for you .. just so good to be able to read your blog - and learn from you ... Hilary

  2. Isolation is killer when you are disabled......ain't that the truth.


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