One major thing I learned the first few years after my stroke is that depending on who you talk to, you’re going to get an incredibly different impression of life after stroke. There is a gigantic difference between talking to someone that’s years out and someone that this recently happened to, whose life is newly devastated. Giant difference.
I received an e-mail a few days ago and it made me remember how helpful this place could be. Talking to me, which I will be glad to do anytime, is going to be a lot different than talking to someone in the midst of all the hell. Not that I don’t remember the pure hell that was my existence for those first 2 years after the stroke, but I’ve worked INCREDIBLY hard, I’ve done A TON of research, I’ve not taken crap from some people and cut some people out of my life that were hindering my recovery and I have managed to get back to a quasi-normal life. I got married, just celebrated my 1st anniversary, got back to doing a job that I love, and am going to move to sunny Florida very soon. Things are good.
I’m way past those initial feelings of utter hopelessness. Those first couple of years post-stroke were absolutely horrible and often when I think about it I’m shocked that I voluntarily stayed in this world. But I did. The hell stops, life gets back to quasi-psuedo-normalness for most people.
I wanted to write this post for the person that e-mailed me and anyone else who is newer to the trauma. Connecting with others going through a similar thing helps a lot. For me, it was really helpful to talk to other younger people that this happened to, whose lives were turned upside down and inside out at a young age, I was 30 when it happened. It helped.
Here is the e-mail I received…..
Do you still use this blog? I wanted to contact you because my husband had a cerebellar stroke that affected both sides of his brain also. He has been in the hospital for 2.5 months already. He has a long road ahead of him. He’s 37 years old and we have a one year old and a three year old. This is so hard my world has been turned upside down.
I hope to hear from you.
I can give tons of advice, but it won’t be the same as talking to someone in a similar phase of “after-life.” Anyone out there think you’d like to connect with this e-mailer?
For a long time this blog, aside from being pretty informative, was a gathering place for stroke survivors, a place where people connected and felt understood when they felt like no one in their real life understood anything. And uhh, yeah no one understands anything.
Friday is my 1st wedding anniversary. Good things can happen after a stroke. Even wonderful, amazing things can happen. I happen to have married the most wonderful, sensitive, brilliant, empathetic, kindest, gentlest man ever created. I really think he might be other-worldly and not from Earth because people like him just don’t exist on this planet.
That being said, as wonderful and amazing and understanding as he is, he’ll never fully get it. It’s not for a lack of trying, that’s for sure. But he wasn’t there. He didn’t see any of it. He didn’t see me with a bald head after brain surgery when I could barely speak, barely walk, and my right arm was tremoring all over the place. I could barely do anything. He wasn’t there and neither was his family so they’ll just never, ever know. I can explain things to him until I’m blue in the face, my mom can explain things, my friends(the ones that stuck around) can explain. But he’ll never fully understand because he wasn’t there. I started dating Pat nearly 3 years post-stroke when I had gotten back to looking and sounding(for the most part) quite normal. I not only looked normal, I looked from the outside like a person of above-average health. He didn’t see me in a hospital bed for a month straight and he didn’t know me the first 2 years after my stroke, when the most dramatic change and recovery happened. He doesn’t and will never know just how drastically far I have come from that day in 2011 until now. He didn’t see it.
So now, I’m facing a brand new challenge. My life is now filled mostly with people who I met post. There’s only a handful of people who were in my life before the stroke, stayed by my side, and are still a major part of my life to this day. Everyone else is new. Well, not new but I didn’t know them before the stroke. I look fine, I sound fine, I have a pretty advanced degree and a really good job with a great company. Things probably seem awesome to new people who I meet. But I still have so many problems that I just – sometimes I feel like I’m pretending in this life and everyone I’ve met in the last few years – including my husband – don’t really get it. People judge me for not wanting to socialize as much, for being incredibly self-conscious about things like needing him to cut my damn food, or not being able to walk and carry a drink at the same time. Gee, I wonder why I don’t wanna go to a party? Instead of defending me to others, I feel like I get judged for it. Instead of defending me, people make excuses for me. No one understands the trauma and devastation of it all. You’re in for a lot of heated discussions if you’re anything like me and won’t allow people in your life that expect things of you that just shouldn’t be expected because it’s what THEY want and think is appropriate. Appropriate for a completely able-bodied person. You’re in for a lot of sadness and loneliness.
But back to good things. The bad things described above happen a lot less frequently now when it used to be everyday. Hopefully it’s not everyday for you but for me it was, I didn’t have the greatest support system. Like I said before, the man I married almost one year ago is – maybe it’s because he was born in Canada that he’s so wonderful and kind. Are all of you Canadians like him? Damn you Canada, why can’t you be in a warmer climate??????
So, how is everyone doing? I’ve been feeling quite weird since a monster that mocked a disabled person on national television and did and said hundreds of other horrible things was elected president. Or was he? Faith in humanity once again very, very shaken. That needs to be restored yet again. Help me restore it, please?