Checking In

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?

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Categories: Brain stuff, Health, Recovery, Stroke stuff

Tags: ,

13 replies

  1. Great things can happen post stroke. We are evidence.

    It’s been about a year and a half since mine. My mother texted me on the 1 year anniversary of my surgery and we all realized what a difference a year makes: after my stroke, or two, or three, they found a PFO and decided it was the cause of them, that blood thinners alone wouldn’t help and surgically closed it last October.

    Mentally coping with my symptoms is my biggest challenge. Saw a doctor, on some anti-depressants. I did a regimen of vestibular therapy and now am very much better. Nothing is visible, I have a slightly crooked smile and bump into walls – a lot. I’m also starting to drive again. I found myself on the other side of the double yellow a lot and at intersections I didn’t know how I got to – so I stopped driving for awhile.

    The best outcome though of my story is my inhibitions on purchasing a house. In June of this year we saw a house that before my stroke I would have shot down in an instant and moved on. However, I believe that because of my stroke I saw the potential in the house we now own. Yay!

    It’s not perfect but it’s amazing. Just like me.

  2. Remember in “Young Frankenstein” when Igor says, “walk this way,” and GEne Wilder imitates his hunchback walk? I know that’s not how Trump meant it, but I like to think of Trump imitating my gimpy walk whenever I remember how he mocked that reporter w spasticity. I don’t know exactly why, but it amuses me.

    Say hi to Patrick for us. I hate to contradict you, but Tom is all those superlative things you claim for Pat. Maybe because he knew me for 30 years before I had the stroke. Every day, just like I do, he experiences the differences between then and now. He gets it.

  3. I am happy to hear your good newsLife does go on. I moved to Marco Island, FL and love the island Paradise. It sure beats winter in Illinois!I know see a lot of promise with stem cell stroke treatment. Stanfoed has seen great success. I am hoping to get on a trial in Miami. Merry Christmas!JaneWashburn

  4. Life is great for me. Just spent the weekend in Portland, Maine with a friend. She was reading ‘The Tao of Dating: The Smart Woman’s Guide to Being Absolutely Irresistible’ which made for interesting discussions. She did life coaching for me, which was needed, since I’m trying to do too many things.

    • You seem to really like this weather. So does Pat. It fascinates me that it doesn’t affect some people because it affects me SO DRASTICALLY. It was a bit of a struggle to get Pat to agree to move but we ultimately decided that my mental health and not wanting to kill myself half the year is way more important than his affection for snow and rain. I sometimes want to kill myself for a bunch of other reasons, I had to eliminate one.

  5. I get it because I am a stroke survivor. It’s ironic since I am creating a post currently in the middle of the night that speaks of that very thing–the not “getting it” part, I mean. Are you still in Pittsburgh? There’s that lunch I never got to with you. The part I hate the most? There’s always a companion with me, lurking, checking, monitoring, since I can’t drive. I walk with a quad cane, albeit very slowly. I look normal, too, but I can’t cut my food, too, unless I pick up the whole piece of chicken or steak. Re-birthday? Fie on anybody who says that. What’s to celebrate! I’m just ranting now. It’s late.

  6. I was cleaning out my in box and just saw this. Ironic to reflect like this on the first day of the new year. I am so glad to hear that life with Pat is so wonderful and that you guys are moving forward in all the best ways. Sorry for the still existent, never gonna go completely away, but gets better slower than a snail crappy parts of post injury.

    This year was so hard for us. Hard in a different way than the first two years were. Zack is still not himself. I am trying to come to terms with the fact that he is never going to be himself again. I miss him deeply and painfully every day. I miss the incredible emotional support he provided, I miss the team work, I miss feeling protected and safe in his arms. And the list goes on… of course I still love him so much. But for a while this year, that love changed. He was despondent, I was tired of mothering him by pushing him to get better and help himself. He was just surviving. I was tired of living alone. But he got on meds and that helped, then I got in meds and that helped. So now things are mending and I am remembering how to love him like a wife loves a husband. And I am still finding the strength to teach him how to love me like a husband loves a wife. Some days are better than others.

    In July we will welcome a baby. It wasn’t planned, but I am excited. And exhausted and moody. No meds while pregnant make things extra fun. 😛 Charley is ecstatic. I fight off worse case scenario thoughts about the baby’s health every other day or so. You can’t unsee a mystery illness hitting your other half. Thankfully I don’t live in fear like I used to though. Zack is up for the challenge of a new baby and is worried about not being able to help like he wants to but also excited.

    He found himself and his motivation the latter half of this year. I am proud of him. He takes Charley to and from school in a golf cart that my parents bought for him. Thankfully her school is in our neighborhood. He takes 6-7 mile rides on his mountain trike. He works out almost every day, does all the laundry and most of the dishes. Helps out tremendously with a bjnch of other chores. And has done multiple 5k’s and a Spartan freaking race. Crazy! I am happy for him and thankful for these changes.

    Yet it is bittersweet that as his physical body returns, his emotions and personality are still so very injured. Thank heavens they have gotten better. Cheers to more.

    Thanks for sharing and checking in with us. Missing this place and you all! Xoxo

    • Wow Brooke. A baby?? Congrats!! I know it will be a struggle though. Please remember that it’s OK to not feel great about this all the time.

      When you said “you can’t unsee a mystery illness hitting your other half” – perspective is so nuts. Sometimes I wish that Pat would have seen it all, and saw what I went through, I think it would help him understand some things more – but maybe I shouldn’t wish that? Another person said to me that she wishes she could erase those first few years after her stroke from her husband’s memory. I guess I should be really careful what I wish for.

      I miss you too, Brooke.

    • Brooke, all I can say is congratulations! I remember you saying you always wanted another, but were accepting that it wouldn’t happen. Imagine what a great big sister Charley will be!

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