As you know, I was in Chicago this week for a business trip, attending a meeting that I attend every year. It's not a huge gathering (about 50 people) and most of us attend each year, so we've gotten to know each other fairly well. So on Friday, after the conclusion of the meeting, when a small group of us were sitting around waiting for the time when we would depart to head to the airport, train station or bus terminal, we spent some time catching up.
First of all, let me assure you that I will never get used to uttering the words, "My husband had a stroke." Each time I say it I get a physical sensation that must be very similar to what it feels like to be kicked in the chest by a horse. Because every time I say it, I remember the first time I said it, in a phone call to my mother from the ER that night. I remember the first time it was said to me, by the ER physician. But when I'm asked how things have been going, am I to gloss over this? When I'm asked why I'm back in school and what I'm studying, do I let people just guess why I'm suddenly drawn toward speech/language pathology?
Anyway, as I discussed what it's been like over these last eight months, I did it with dry eyes. At least until one of the women I was talking with turned to me and said, "You're allowed to feel, you know." Then I lost it. Because it's never going to stop hurting that this happened. I love my husband, and I'll love him no matter what, but that doesn't mean I'll stop missing the man he used to be. And just because he doesn't have deficits like some survivors doesn't mean that he has no deficits at all. I'm still sad, confused, angry and hurt. And it was nice to have someone not treat me like I should forget about it and move on. It's getting easier, but it's never going to be easy.
So there you have it. For anyone who reads these entries looking for some indication of when the pain stops, I can assure you that 8 months and 10 days later, it's still fresh.
Sunday, October 25, 2009
Wednesday, October 21, 2009
Postcards from Chicago
I'm typing this from a hotel room in Chicago, where I'm attending a work-related conference. This is the first time I've been away from J.J. overnight since the stroke, and I never dreamed it would be this hard. I've been passing the hours by writing postcards to my family----
Eli,
Greetings from the Windy City, which was not at all windy today. It was just as warm and sunny here as it was at home. I'm missing you guys a lot, but I'm still having fun. I just had awesome Chicago-style pizza! I'll be home soon--be good for your dad in the meantime! Love, Mom
Leah,
Well, I'm here in Chicago and it's been a really nice day, which is a big change from how it is normally when I'm here! All I can think about is how much I want to be home with you guys--and I will be, in two more sleeps! Love, Mommy
My love,
Tonight I'll go to sleep without you beside me. Tomorrow I'll wake up and you still won't be here. And I'll miss you, of course--that goes without saying. But mostly, I'll miss US; the feeling of finally letting out the breath I didn't know I'd been holding all day as soon as I'm in your arms. Can't wait to breathe again------ E
Eli,
Greetings from the Windy City, which was not at all windy today. It was just as warm and sunny here as it was at home. I'm missing you guys a lot, but I'm still having fun. I just had awesome Chicago-style pizza! I'll be home soon--be good for your dad in the meantime! Love, Mom
Leah,
Well, I'm here in Chicago and it's been a really nice day, which is a big change from how it is normally when I'm here! All I can think about is how much I want to be home with you guys--and I will be, in two more sleeps! Love, Mommy
My love,
Tonight I'll go to sleep without you beside me. Tomorrow I'll wake up and you still won't be here. And I'll miss you, of course--that goes without saying. But mostly, I'll miss US; the feeling of finally letting out the breath I didn't know I'd been holding all day as soon as I'm in your arms. Can't wait to breathe again------ E
Wednesday, October 14, 2009
Guess who the two newest writers for the Stroke Network newsletter are?
(I'm pretty sure you know, right?)
Here's our audition piece. Parts of it I stole from one of my blog entries a while ago, but lots of it is new. And it's the first real Team Erin AND J.J. entry to this blog...
Nearly 13 years ago, I met a man unlike any other I had ever known. Possessed of a sarcastic wit that almost matched my own, J.J. and I talked for over 10 hours on our first date. Since ours was a long-distance romance at first, we spoke on the phone for hours each night. I never grew tired of learning more about this man. I loved how deep, philosophical and wide-ranging those conversations were. When I married him, I looked forward to years filled with discussions, banter, debate and repartee. And for the better part of a decade after our wedding, that’s what we experienced.
We had a wonderful life. It wasn’t storybook, but it was ours and it was perfect for us.
On February 15, 2009, our lives changed in an instant when J.J. suffered a single ischemic left MCA stroke. When I arrived at the hospital that night, J.J. was paralyzed on the right side of his body. He also was completely silent, something that had happened on only a handful of occasions before.
After a week in the hospital, another week at a rehabilitation hospital and months of therapy, J.J. has very few physical challenges following his stroke. Those long-winded diatribes, however, are no more. J.J. still suffers from aphasia.
At first, this was devastating to me. I fell in love with this man for his brain. I knew he was still in there, but if he couldn’t communicate with me, how could I continue to be his wife out of more than just duty? How could I love this shell of the man I had loved so passionately?
From where I am, over seven months later, I can tell you that I now love this man even more than I did before the stroke. This one. I don't mean the one I fell in love with, the one I kissed at the altar on our wedding day, the one whose arms were the first to hold our son, the one I've woken up next to every morning for so many years I'm completely broken of the habit of trying to sleep in the middle of the bed. Although I love him as well.
I mean the man who lost most of his ability to produce language but who never forgot how to tell me he loved me. The man who has started eating salad regularly to make sure he never has this problem again. The man who spends hours a day trying to read even though it's so hard for him it's no longer enjoyable. The man who does whatever he can to make my day easier in whatever way he can. The man who still cuddles his children every night before bed. The man who attempts to look over our son's homework even though he most often has to hand it over to me to check. The man who never stops trying, never stops believing, and never gives up.
The J.J. I knew is gone forever, since whatever his recovery looks like, this experience will have changed him. But it's changed me too. And this new Erin is ready to love the new J.J. completely. Whoever he is, I know some things won't change. That gentle soul is still the soul of my best friend.
There’s so much there for me to love.
**********
I love my wife. I loved her in the instant I met her, and I love her more everyday. I love her with all my soul and body. I can’t imagine my life without her. Nor would I ever want to.
I had my stroke 7 months ago. It’s not that long ago, but many days it seems like it’s been forever.
I always knew that my wife was strong. I’ve watched her do some pretty amazing things, like finishing the coursework for her Masters degree while she was working full-time, caring for our then three year old son and pregnant with our daughter. But I never guessed how much strength she had. After my stroke, I had to watch her keep the kids going, and her job, and everything else we used to do. Each morning she would get the kids off to school and she would work for five hours in her office. She’d leave work in time to join me at the hospital for lunch, then she would observe my therapy sessions until it was time to get the kids again. She kept them in all their activities, swim lessons, guitar lessons, taekwondo classes. And she brought them to visit me everyday. After the kids were in bed, the house was clean and the laundry was done, she worked from home for another three hours each night. She didn’t sleep much, but she got it done. And she never complained.
For the first month and a half I was home, she still had to keep everything going. I had trouble walking still. I could make dinner, but the stairs were a problem. I couldn’t get the kids baths, or drive. So I was home, but all that meant was that it was easier to see me.
God only knows why she still loves me. I don’t know why.
What I do know is that she is the best in the world. She’s a great Mother, Wife, Sister, and Daughter. She’s good at her job, and she wants to learn a completely new job, which is Speech Therapy. I know she’ll excel at this too.
For nearly 13 years now, I’ve known her. She is an amazing woman who can do anything she wants. For nearly 13 years now, I’ve loved her for that. This stroke has only provided me with more reasons to love her.
Here's our audition piece. Parts of it I stole from one of my blog entries a while ago, but lots of it is new. And it's the first real Team Erin AND J.J. entry to this blog...
Nearly 13 years ago, I met a man unlike any other I had ever known. Possessed of a sarcastic wit that almost matched my own, J.J. and I talked for over 10 hours on our first date. Since ours was a long-distance romance at first, we spoke on the phone for hours each night. I never grew tired of learning more about this man. I loved how deep, philosophical and wide-ranging those conversations were. When I married him, I looked forward to years filled with discussions, banter, debate and repartee. And for the better part of a decade after our wedding, that’s what we experienced.
We had a wonderful life. It wasn’t storybook, but it was ours and it was perfect for us.
On February 15, 2009, our lives changed in an instant when J.J. suffered a single ischemic left MCA stroke. When I arrived at the hospital that night, J.J. was paralyzed on the right side of his body. He also was completely silent, something that had happened on only a handful of occasions before.
After a week in the hospital, another week at a rehabilitation hospital and months of therapy, J.J. has very few physical challenges following his stroke. Those long-winded diatribes, however, are no more. J.J. still suffers from aphasia.
At first, this was devastating to me. I fell in love with this man for his brain. I knew he was still in there, but if he couldn’t communicate with me, how could I continue to be his wife out of more than just duty? How could I love this shell of the man I had loved so passionately?
From where I am, over seven months later, I can tell you that I now love this man even more than I did before the stroke. This one. I don't mean the one I fell in love with, the one I kissed at the altar on our wedding day, the one whose arms were the first to hold our son, the one I've woken up next to every morning for so many years I'm completely broken of the habit of trying to sleep in the middle of the bed. Although I love him as well.
I mean the man who lost most of his ability to produce language but who never forgot how to tell me he loved me. The man who has started eating salad regularly to make sure he never has this problem again. The man who spends hours a day trying to read even though it's so hard for him it's no longer enjoyable. The man who does whatever he can to make my day easier in whatever way he can. The man who still cuddles his children every night before bed. The man who attempts to look over our son's homework even though he most often has to hand it over to me to check. The man who never stops trying, never stops believing, and never gives up.
The J.J. I knew is gone forever, since whatever his recovery looks like, this experience will have changed him. But it's changed me too. And this new Erin is ready to love the new J.J. completely. Whoever he is, I know some things won't change. That gentle soul is still the soul of my best friend.
There’s so much there for me to love.
**********
I love my wife. I loved her in the instant I met her, and I love her more everyday. I love her with all my soul and body. I can’t imagine my life without her. Nor would I ever want to.
I had my stroke 7 months ago. It’s not that long ago, but many days it seems like it’s been forever.
I always knew that my wife was strong. I’ve watched her do some pretty amazing things, like finishing the coursework for her Masters degree while she was working full-time, caring for our then three year old son and pregnant with our daughter. But I never guessed how much strength she had. After my stroke, I had to watch her keep the kids going, and her job, and everything else we used to do. Each morning she would get the kids off to school and she would work for five hours in her office. She’d leave work in time to join me at the hospital for lunch, then she would observe my therapy sessions until it was time to get the kids again. She kept them in all their activities, swim lessons, guitar lessons, taekwondo classes. And she brought them to visit me everyday. After the kids were in bed, the house was clean and the laundry was done, she worked from home for another three hours each night. She didn’t sleep much, but she got it done. And she never complained.
For the first month and a half I was home, she still had to keep everything going. I had trouble walking still. I could make dinner, but the stairs were a problem. I couldn’t get the kids baths, or drive. So I was home, but all that meant was that it was easier to see me.
God only knows why she still loves me. I don’t know why.
What I do know is that she is the best in the world. She’s a great Mother, Wife, Sister, and Daughter. She’s good at her job, and she wants to learn a completely new job, which is Speech Therapy. I know she’ll excel at this too.
For nearly 13 years now, I’ve known her. She is an amazing woman who can do anything she wants. For nearly 13 years now, I’ve loved her for that. This stroke has only provided me with more reasons to love her.
Monday, October 12, 2009
Massive Update
I'm sorry that I'm such a slacker when it comes to this blog lately. It's no excuse, but my whole life is super crazy right now. I'm either working, studying, preparing to teach, messing with the kids, being a stroke wife or feeling guilty that I'm not doing one of the above.
But anyway, here's what's going on...
1. J.J. and I are both staying home from work today, J.J. because his vision is weird and he has a headache (which I assume means his blood pressure is back up) and me because I'm going to be a nervous wreck if I can't keep an eye on him. Like it or not, every time this man so much as sneezes for the next few years, he's going to have me checking on him. But my allergies are acting up (again), so I could probably use the extra rest.
2. Leah is 5! I've got her photo montage done, and I'll try to post it soon. Her birthday was Thursday, which of course is the night I teach so I barely saw her. We did her presents on Wednesday evening and took her to dinner on Friday evening. I think she was pretty impressed that her birthday went on for days!
3. We started the American Heart Association eating plan this morning. Basically, we're trying not to eat as much red meat and processed foods and trying to eat more fruits, veggies and healthy fats (like olive oil and nuts). We'll see how this goes.
4. J.J. and I went to a stroke conference in Chicago last weekend. It was put on by a group called Stroke Survivors Empowering Each Other that is essentially a statewide (Illinois) support group. I think we were the people who traveled the furthest to be there. It was nice to be in a room full of people who could relate to some of what we're going through. We heard a great presentation about integrative medicine that has us looking at some new therapies to try for J.J. And at the end of the day, we were asked to tell our story to the group! I did most of the talking (naturally!) I think it went pretty well--there was a woman there who is writing a book about stroke survivors and their families, and she's asked us to include our story. We'll see.
One of the worst things about going to things like this is seeing other stroke survivors' reactions to J.J. J.J. came out of his stroke in very good shape. Even though he has some deficits, they're nothing like what many survivors have to deal with. We sat with a couple at lunch; the wife had almost the same stroke as J.J., but hers was almost a year and a half ago. She's lost most of the use of her right hand (it's all contracted) and her speech is about how J.J.'s was a week or so after his stroke. At one point she laboriously said to J.J., "How...is...your...stroke?", meaning, how did you recover like this? You could see the naked envy all over her face. It's hard to watch.
5. I haven't updated about the Start! Heart Walk! We participated as a family, all wearing our shirts to support J.J. We got lost so we didn't get there until right before the walk started, and they tore everything down while we were gone walking so we didn't get to see much of the exhibitors. The walk was nice, though. It was a beautiful day and the kids only had to sit down to rest once while we were walking. At the finish line, we were provided with bottled water and all the fruit we wanted to eat. The kids each had a couple of apples. J.J. ate an apple and a banana. I had two oranges (which were AMAZING--I had forgotten how much I love oranges!). All in all, it was just a great day to celebrate how far J.J. has come. Thanks again to all the people who supported Team Erin and J.J. in the walk!
Alright, I think that's all the noteworthy news I have. Time to check on my man!
But anyway, here's what's going on...
1. J.J. and I are both staying home from work today, J.J. because his vision is weird and he has a headache (which I assume means his blood pressure is back up) and me because I'm going to be a nervous wreck if I can't keep an eye on him. Like it or not, every time this man so much as sneezes for the next few years, he's going to have me checking on him. But my allergies are acting up (again), so I could probably use the extra rest.
2. Leah is 5! I've got her photo montage done, and I'll try to post it soon. Her birthday was Thursday, which of course is the night I teach so I barely saw her. We did her presents on Wednesday evening and took her to dinner on Friday evening. I think she was pretty impressed that her birthday went on for days!
3. We started the American Heart Association eating plan this morning. Basically, we're trying not to eat as much red meat and processed foods and trying to eat more fruits, veggies and healthy fats (like olive oil and nuts). We'll see how this goes.
4. J.J. and I went to a stroke conference in Chicago last weekend. It was put on by a group called Stroke Survivors Empowering Each Other that is essentially a statewide (Illinois) support group. I think we were the people who traveled the furthest to be there. It was nice to be in a room full of people who could relate to some of what we're going through. We heard a great presentation about integrative medicine that has us looking at some new therapies to try for J.J. And at the end of the day, we were asked to tell our story to the group! I did most of the talking (naturally!) I think it went pretty well--there was a woman there who is writing a book about stroke survivors and their families, and she's asked us to include our story. We'll see.
One of the worst things about going to things like this is seeing other stroke survivors' reactions to J.J. J.J. came out of his stroke in very good shape. Even though he has some deficits, they're nothing like what many survivors have to deal with. We sat with a couple at lunch; the wife had almost the same stroke as J.J., but hers was almost a year and a half ago. She's lost most of the use of her right hand (it's all contracted) and her speech is about how J.J.'s was a week or so after his stroke. At one point she laboriously said to J.J., "How...is...your...stroke?", meaning, how did you recover like this? You could see the naked envy all over her face. It's hard to watch.
5. I haven't updated about the Start! Heart Walk! We participated as a family, all wearing our shirts to support J.J. We got lost so we didn't get there until right before the walk started, and they tore everything down while we were gone walking so we didn't get to see much of the exhibitors. The walk was nice, though. It was a beautiful day and the kids only had to sit down to rest once while we were walking. At the finish line, we were provided with bottled water and all the fruit we wanted to eat. The kids each had a couple of apples. J.J. ate an apple and a banana. I had two oranges (which were AMAZING--I had forgotten how much I love oranges!). All in all, it was just a great day to celebrate how far J.J. has come. Thanks again to all the people who supported Team Erin and J.J. in the walk!
Alright, I think that's all the noteworthy news I have. Time to check on my man!
Thursday, October 1, 2009
You Betcha
I've noticed that many stroke survivors with aphasia have been left with one phrase that is much easier for them to say than anything else. J.J.'s is, "you betcha".
Are you going to pick up the kids from school today? You betcha. Does this dress look okay on me? You betcha. Does spaghetti sound good for dinner? You betcha.
This is so amusing to me, since this is not a phrase J.J. was prone to using before his stroke. But hey, at least it's useful. He could have been left with something like, "paper or plastic" or "Gary Player golf" or "act fast and I'll double your order".
Am I constantly puzzled, amazed and baffled by this stroke recovery stuff? You betcha.
Are you going to pick up the kids from school today? You betcha. Does this dress look okay on me? You betcha. Does spaghetti sound good for dinner? You betcha.
This is so amusing to me, since this is not a phrase J.J. was prone to using before his stroke. But hey, at least it's useful. He could have been left with something like, "paper or plastic" or "Gary Player golf" or "act fast and I'll double your order".
Am I constantly puzzled, amazed and baffled by this stroke recovery stuff? You betcha.
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