It’s been more than five months since my mom’s stroke, and I expect to be normal.
I expect to be able to laugh at people’s jokes, have both ridiculous and deep conversations with friends, work efficiently and well, exercise, cook delicious meals, and just generally be at fully capacity. Oh, and I expect to act and interact like I did before all of this – like nothing has changed.
Except so much has. So much has changed.
And underneath the normal that I’m trying to display lies the not normal – the part of me that is still shaken to my core, the part of me that still can’t believe this is happening. The part of me that wants to respond to people’s polite how-are-you-doings with my fears and worries for my family instead of the standard “I’m fine.”
Luckily, I have a blog to get some of that out, so it doesn’t spill onto an innocent checker at Target, or the random neighbor I meet in the elevator.
So how are you doing, Katye?
Well, I’m worried that my dad might still have a hard time getting on disability through our insurance company. Even though the church is all for it, and all his doctors agree that it’s time, the insurance company spent an hour and a half asking him questions about his medical history, and asking him when he’s going to go back to work again (umm, hello, he has a degenerative illness, he’s not going back to work. Read his file already!)
I’m worried because my mom is really tired, more than she was before. It might be the chemo (she’s taking chemo five days out of the month, and they’re giving her a higher dose than before), but it’s making it hard. She can’t even transfer from her chair to the wheelchair in the evenings without my dad almost lifting her, and she has a harder time speaking when she’s tired.
I’m irritated because my mom’s physical therapist said that its alright that my mom is almost falling when she walks (the therapist is trying to change her gait and have her use a cane instead of a walker), as long as there’s someone there to catch her. HOW IS IT OKAY THAT MY MOM HAS NEARLY FALLEN FOUR TIMES IN THE LAST WEEK? I’m all for challenging her, but not when it could severely hurt her.
I’m frustrated because I want to be fully there in my internship, at work, with my family, and with my friends, but I just can’t do it – I just don’t have the emotional and physical energy. I’m frustrated because I’m sick of relying on a sleeping pill to help me fall asleep every night. And I’m frustrated because this blog post is not the well-composed piece of art I expected it to be.
But probably, if you asked me how I was doing in real life, I’d just say I was fine.
Saturday, January 28, 2012
Monday, January 23, 2012
Love
This past weekend one of my good friends from college got married. I had the privilege of being in her wedding party, and of promising to support her and her husband in good times and bad.
The ceremony was beautiful, and the vows were profound. She chose to take his sorrows and joys as her own, and hers too became his. They chose to seek Jesus together, in everything they do.
In the beauty and the sacredness of the ceremony, I had one prayer for them – that they would have as strong a love for each other as my parents do. My parents have loved and supported each other for richer and for poorer, in sickness and in health. They have never wavered in their love for one another, even in really painful times. And though I would never wish those painful times on anyone, I pray that if those painful times come for my friend and her husband, she and he would love like my parents love.
Thank you, friends, for letting me share in your special day. May your life together be filled with joy and laughter, and a deep and faithful love.
The ceremony was beautiful, and the vows were profound. She chose to take his sorrows and joys as her own, and hers too became his. They chose to seek Jesus together, in everything they do.
In the beauty and the sacredness of the ceremony, I had one prayer for them – that they would have as strong a love for each other as my parents do. My parents have loved and supported each other for richer and for poorer, in sickness and in health. They have never wavered in their love for one another, even in really painful times. And though I would never wish those painful times on anyone, I pray that if those painful times come for my friend and her husband, she and he would love like my parents love.
Thank you, friends, for letting me share in your special day. May your life together be filled with joy and laughter, and a deep and faithful love.
Thursday, January 19, 2012
Balance
It’s been five months since my mom had her stroke.
It’s been almost two weeks since we found out that my mom has at least another year.
And I’m still re-balancing.
I had found this balance in the way things were before. Well, maybe not balance, but at least I had figured out how to survive. Granted, it was crazy – I was always rushing between Oakland and San Jose and feeling the pressure of time. But I had figured it out – I had a pattern.
But now things are different – good different, but still different. And I’m having to figure out my pattern, my balancing act, all over again.
The first week after we got the good news, I was giddy. I played, I laughed, I spent time with friends, I didn't sit still. I swung back to what things were like before my mom got sick. This past week I was more emo – I cried more, spent lots of time watching television (though of my television watching was with friends – Parks and Recreation marathon two nights in a row for the win!), and ate lots of chocolate. I’ve dipped to both sides of this emotional… teeter-totter (and you thought I was gonna say roller coaster. Gotcha!), and I’ve gotten a little queasy in the process. It’s not comfortable to go from ecstatic to melancholy in such a short time.
I hope I can find my balance point. Or at least make the teeters and totters (wow, weird words) less dramatic. It may not happen for awhile, but at least I have some time to figure it out.
It’s been almost two weeks since we found out that my mom has at least another year.
And I’m still re-balancing.
I had found this balance in the way things were before. Well, maybe not balance, but at least I had figured out how to survive. Granted, it was crazy – I was always rushing between Oakland and San Jose and feeling the pressure of time. But I had figured it out – I had a pattern.
But now things are different – good different, but still different. And I’m having to figure out my pattern, my balancing act, all over again.
The first week after we got the good news, I was giddy. I played, I laughed, I spent time with friends, I didn't sit still. I swung back to what things were like before my mom got sick. This past week I was more emo – I cried more, spent lots of time watching television (though of my television watching was with friends – Parks and Recreation marathon two nights in a row for the win!), and ate lots of chocolate. I’ve dipped to both sides of this emotional… teeter-totter (and you thought I was gonna say roller coaster. Gotcha!), and I’ve gotten a little queasy in the process. It’s not comfortable to go from ecstatic to melancholy in such a short time.
I hope I can find my balance point. Or at least make the teeters and totters (wow, weird words) less dramatic. It may not happen for awhile, but at least I have some time to figure it out.
Sunday, January 8, 2012
Phew
On Friday my family and I went to my mom’s radiation follow-up appointment. She got an MRI, and then we met with the nurse practitioner who specializes in my mom’s type of cancer, glioblastoma.
I was really worried about this appointment. This was day we were going to find out what her brain looks like after the radiation and chemo. This was the day we were going to find out how much more time my mom has.
But after all the worry, we got GREAT news.
Her MRI looked as good as it could possibly be. Which means that there was no visible tumor in her brain. (There are still microscopic tumor cells, but no visible tumor is really good.) The nurse practitoner also said that generally it takes 12 to 16 months for the tumor to grow back enough to be visible on an MRI.
Translation: I will most likely (statistically) have another year with my mom. More than another year with my mom, actually.
Best. News. Ever.
A whole nother year. Another birthday, another Christmas. Enough time to finish our scrapbook, and to make one for my sister. Enough time to watch hours and hours of Gilmore Girls (again). Enough time to just be with my mom, be with my whole family. (Okay, yes, even more time would be even better. But at this point, a year or more feels like greatest and most unexpected gift.)
It feels so freeing, like a huge weight has been lifted from my shoulders. Or really from my chest – I can breathe again. It’s the biggest relief to know that I don’t have to rush time with my mom. I feel like I can finally take a breath, and find a better balance between my family in San Jose, my community in Oakland, and my friends everywhere. I’m running a marathon now, not a sprint, and my pace can be so much more sustainable.
And you wanna know what I did to celebrate? I played Just Dance 3 and Fruit Ninja on the Kinect with my friends on Saturday, and went to the beach on Sunday. And my roommate has promised me froyo.
And so I say "phew."
I was really worried about this appointment. This was day we were going to find out what her brain looks like after the radiation and chemo. This was the day we were going to find out how much more time my mom has.
But after all the worry, we got GREAT news.
Her MRI looked as good as it could possibly be. Which means that there was no visible tumor in her brain. (There are still microscopic tumor cells, but no visible tumor is really good.) The nurse practitoner also said that generally it takes 12 to 16 months for the tumor to grow back enough to be visible on an MRI.
Translation: I will most likely (statistically) have another year with my mom. More than another year with my mom, actually.
Best. News. Ever.
A whole nother year. Another birthday, another Christmas. Enough time to finish our scrapbook, and to make one for my sister. Enough time to watch hours and hours of Gilmore Girls (again). Enough time to just be with my mom, be with my whole family. (Okay, yes, even more time would be even better. But at this point, a year or more feels like greatest and most unexpected gift.)
It feels so freeing, like a huge weight has been lifted from my shoulders. Or really from my chest – I can breathe again. It’s the biggest relief to know that I don’t have to rush time with my mom. I feel like I can finally take a breath, and find a better balance between my family in San Jose, my community in Oakland, and my friends everywhere. I’m running a marathon now, not a sprint, and my pace can be so much more sustainable.
And you wanna know what I did to celebrate? I played Just Dance 3 and Fruit Ninja on the Kinect with my friends on Saturday, and went to the beach on Sunday. And my roommate has promised me froyo.
And so I say "phew."
Thursday, January 5, 2012
Books
I’ve started reading and collecting books about death.
That sounds really morbid. Let me explain.
I started reading this book, Intimate Death, by Marie de Hennezel. And it speaks to my soul. Marie worked with people who were dying for years, and her book holds life and death, mourning and hope, in balance. Every time I pick it up, I learn something new about myself. I feel like she knows me, and fully knows what I’m going through.
And so I’m collecting other books written by people who have experienced the death of a loved one. C.S. Lewis’ A Grief Observed, about the death of his wife; Henri Nouwen’s A Sorrow Shared, about the death of his mother; Sheldon Vanauken’s A Severe Mercy, about the death of his wife (which I’ve already read, but may read again); Madeleine L’Engle’s Two-Part Invention, about the life and death of her husband (which I’ve already read, but may read again).
These books aren’t morbid, they aren’t part of some weird fascination on death. But they speak truth about mortality in ways that most books don’t. The speak truth about grief that is glossed over by many.
And more than anything, they show me that I am not alone.
I started reading this book, Intimate Death, by Marie de Hennezel. And it speaks to my soul. Marie worked with people who were dying for years, and her book holds life and death, mourning and hope, in balance. Every time I pick it up, I learn something new about myself. I feel like she knows me, and fully knows what I’m going through.
And so I’m collecting other books written by people who have experienced the death of a loved one. C.S. Lewis’ A Grief Observed, about the death of his wife; Henri Nouwen’s A Sorrow Shared, about the death of his mother; Sheldon Vanauken’s A Severe Mercy, about the death of his wife (which I’ve already read, but may read again); Madeleine L’Engle’s Two-Part Invention, about the life and death of her husband (which I’ve already read, but may read again).
These books aren’t morbid, they aren’t part of some weird fascination on death. But they speak truth about mortality in ways that most books don’t. The speak truth about grief that is glossed over by many.
And more than anything, they show me that I am not alone.
Tuesday, January 3, 2012
Best Doctor Ever
Who knew that a seemingly simple seating choice (like that alliteration? I do!) could so greatly impact the doctor-patient relationship.
When Dr. MacKinnon chose to sit on the edge of my mom’s bed, instead of standing over her, or sitting in a chair apart from her, she made the choice to really know my mom as a person, instead of just a patient. That set the tone for the three weeks that we worked with Dr. MacKinnon while my mom was in rehab.
It wasn’t just sitting on the edge of my mom’s bed that made Dr. MacKinnon a great doctor. But it, along with all the other small things Dr. MacKinnon did, made her one of the most caring doctors I’ve ever met.
She would hold my mom’s hand as she talked to her (this was before my mom could talk back). She would speak my mom as if she was a 56-year-old woman, and not a child (apparently when you can’t speak, people treat you like a child). She would hug my mom before she left the room, and call her by her first name, and share personal details of her own life with us. And one time, out in the hallway, after my dad and I had a conversation with her about my mom’s cancer, she talked with us about each moment being sacred, and gave us hugs as she left.
Dr. MacKinnon valued life, and saw my mom’s life as something beautiful and holy, even while knowing that my mom was dying. She was able to draw near, even though she’d only be our doctor for a few weeks, and even though it might bring her closer to her own mortality as she played a part in my mom’s journey towards death.
I want to be like Dr. MacKinnon – able to live and love in the face of death, granting dignity and grace to people who are helpless, and unafraid to be vulnerable.
When Dr. MacKinnon chose to sit on the edge of my mom’s bed, instead of standing over her, or sitting in a chair apart from her, she made the choice to really know my mom as a person, instead of just a patient. That set the tone for the three weeks that we worked with Dr. MacKinnon while my mom was in rehab.
It wasn’t just sitting on the edge of my mom’s bed that made Dr. MacKinnon a great doctor. But it, along with all the other small things Dr. MacKinnon did, made her one of the most caring doctors I’ve ever met.
She would hold my mom’s hand as she talked to her (this was before my mom could talk back). She would speak my mom as if she was a 56-year-old woman, and not a child (apparently when you can’t speak, people treat you like a child). She would hug my mom before she left the room, and call her by her first name, and share personal details of her own life with us. And one time, out in the hallway, after my dad and I had a conversation with her about my mom’s cancer, she talked with us about each moment being sacred, and gave us hugs as she left.
Dr. MacKinnon valued life, and saw my mom’s life as something beautiful and holy, even while knowing that my mom was dying. She was able to draw near, even though she’d only be our doctor for a few weeks, and even though it might bring her closer to her own mortality as she played a part in my mom’s journey towards death.
I want to be like Dr. MacKinnon – able to live and love in the face of death, granting dignity and grace to people who are helpless, and unafraid to be vulnerable.
Sunday, January 1, 2012
Disneyland
Now, don’t get me wrong. I LOVE Disneyland.
I mean, seriously. That’s a picture of me and my sister acting like six year olds on the bus from our hotel to Disneyland this past July. If those Minnie ears and our ridiculous faces don’t express love of Disneyland, I don’t know what will.
I love the magic, the artistry, the whimsy of Disneyland. I love that I can act like a little kid, ride amazingly rides, feel tall (since buildings are built at a ¾ scale) and feel like I’m living in a whole different world.
But.
But Disneyland was the last big thing my family and I did together before my mom had her stroke.
And now I see this commercial, with all these happy parents and their kids, with the lyrics “this has gotta be the good life,” and I almost scream. Or throw something at the TV/computer (yah, for awhile it was coming up WAY too often on Hulu).
Who knew that happy families in the happiest place on earth could make me so angry?
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