"How is Garrett doing?"
It's a question I've heard a lot these past few days and I get it, I do. Of course friends and family would want to know. They care, and that's beautiful.
It's just that it's messing up our carefully constructed bubble of pretending none of this is happening. I know how completely selfish and horrible that sounds, and I know that when we post on Facebook or blog about it, it's kind of inviting the question.
So I want anyone who reads this to read what I am about to write, but also ignore what I am about to write, because what is most important is that you care and that you check on him, because that's what you're supposed to do and we're supposed to let you.
If I said he was fine I would be lying. He has a lot of trouble sleeping and the symptoms of whatever this is are not going away. We're scared. We don't show it because we know then you will be scared and we're not sure we can handle that fear compounded with our own.
This past weekend we had a cookout with friends and family and it was a way to just be normal for awhile, a way to not think about anything. I didn't realize that our friends and family would want to talk to us in person about what is happening, and tell us they were thinking/hoping/praying for us. I talk about it online because it's easy. It's just words. When I have to talk about it in person, that's very different. In person I have to face it. I have to look at you and see that look of concern, and I have to try and not look so scared. I wasn't prepared for that this past weekend. I found myself brushing off your comments and smiling and moving the conversation on to something else and I didn't realize until later that I was doing it. Looking back, I feel bad because I know you needed to get out your feelings too.
My mom dropped by my office this morning and brought me a gift, and it's amazing and I love her for it, but she asked what time Garrett's MRI is tomorrow morning. I found myself shutting her down almost immediately. My whole demeanor changed because I just couldn't deal. I couldn't get her out of the office fast enough and that is terrible. It's what forced me to sit down and write this because I feel like if I don't get it out of me, it's all I will think about.
I want you to continue asking about him and thinking about us, and I will continue posting updates. I just want you to know that I am sorry if you talk to me and I am not quite with you. It's not that I don't want to talk to you, it's that my defense mechanisms are in full-gear right now and I'm hiding behind some pretty high walls.
Thursday, May 29, 2014
Thursday, May 22, 2014
Answers
"I can tell you you're not crazy, and something is wrong."
Relief. We felt overwhelming relief at hearing that after a year of doctor visits, some of which blamed anxiety on G's symptoms, that they were so very wrong. Earlier this week our primary care doctor told us that she had nothing left to test for and that his symptoms were the cause of irreparable nerve damage from his tumor surgery; not fixable.
Today we discovered what we should have known over a year ago.
There is something wrong in G's brain.
"I can't tell you definitely if it's a tumor yet, or something else in there going awry, but his brain is not working properly and it's causing these symptoms. We are going to rush the pre-authorizations and get an MRI of his brain and neck as soon as possible, within the next week."
That should have terrified us and yet, we both sat there and sighed in relief. It's an answer. It's a place to start. It's scary as hell but it's better than, "Sorry, you're either a mental case, or we can't help you."
In addition to his body's inability to control his heart rate, blood pressure, and temperature, the neurologist discovered why he can't drive and why he is feeling numbness in his arms and legs. Both signify a problem with the brain or spinal cord.
"There is nothing wrong with your eyes. Your vision is fine, which explains why the optometrist could not find a problem, and why the vision therapy did not make you better. Your brain is the problem. Your eyes can't track because your brain cannot process the visual information. That combined with the severely hyperactive reflexes and your symptoms all point strongly to something going on in your brain. We need to take a look, see if something is pressing on something."
So here we are with more questions, but definitely a direction. For the first time in a year we feel like someone is listening and not shrugging off certain diagnoses simply because of his blood work or the fact that he's only thirty three.
"What's going on with you is not normal and we are going to figure this out."
We both broke down in the car, and while I think we are nervous about what lies ahead, we're grateful that someone is now taking this seriously. We also get the distinct impression that his neurologist is a friendlier, slightly more ADHD version of Dr. House, and it was clear to us today that this man cares about finding the answer. Knowing is infinitely better than not knowing, and hopefully for us, G's brain will tell its story within the next 14 days.
Relief. We felt overwhelming relief at hearing that after a year of doctor visits, some of which blamed anxiety on G's symptoms, that they were so very wrong. Earlier this week our primary care doctor told us that she had nothing left to test for and that his symptoms were the cause of irreparable nerve damage from his tumor surgery; not fixable.
Today we discovered what we should have known over a year ago.
There is something wrong in G's brain.
"I can't tell you definitely if it's a tumor yet, or something else in there going awry, but his brain is not working properly and it's causing these symptoms. We are going to rush the pre-authorizations and get an MRI of his brain and neck as soon as possible, within the next week."
That should have terrified us and yet, we both sat there and sighed in relief. It's an answer. It's a place to start. It's scary as hell but it's better than, "Sorry, you're either a mental case, or we can't help you."
In addition to his body's inability to control his heart rate, blood pressure, and temperature, the neurologist discovered why he can't drive and why he is feeling numbness in his arms and legs. Both signify a problem with the brain or spinal cord.
"There is nothing wrong with your eyes. Your vision is fine, which explains why the optometrist could not find a problem, and why the vision therapy did not make you better. Your brain is the problem. Your eyes can't track because your brain cannot process the visual information. That combined with the severely hyperactive reflexes and your symptoms all point strongly to something going on in your brain. We need to take a look, see if something is pressing on something."
So here we are with more questions, but definitely a direction. For the first time in a year we feel like someone is listening and not shrugging off certain diagnoses simply because of his blood work or the fact that he's only thirty three.
"What's going on with you is not normal and we are going to figure this out."
We both broke down in the car, and while I think we are nervous about what lies ahead, we're grateful that someone is now taking this seriously. We also get the distinct impression that his neurologist is a friendlier, slightly more ADHD version of Dr. House, and it was clear to us today that this man cares about finding the answer. Knowing is infinitely better than not knowing, and hopefully for us, G's brain will tell its story within the next 14 days.
Tuesday, May 20, 2014
Three Years
Three years.
It's been three years of dealing with the fallout of a non-malignant tumor. I mistakenly believed that non-malignant meant everything was going to be fine. "It's cancer, but it's not going to kill him." That's what the doctor said, and I felt relieved for the first time in months. I felt so relieved that when they sat us down and told us the tumor had grown so large that the risk of severing G's facial nerve was 60%, I nearly broke down in tears in front of the surgeon. "What does that mean?" we asked. "It means there is a 60% chance he will not be able to speak or smile. It means he will have palsy on that side of his face." I remember sitting in the surgical waiting room with our two children and it taking everything in me not to sob. Surgery took 6 hours and when it was over, I was just grateful he was alive; that he could smile through the haze of drugs and stitches and blood caked on his face.
Three years ago, everything changed.
Even as I type this I feel ashamed at how upset I am because I know there are people dealing with far worse. I know a specific person dealing with so much worse.
Watching him today absolutely destroyed my soul. He was so hopeful that they could fix this and to be met with something that can't be fixed, just merely managed, is heartbreaking. I've not seen him like this since California and I hate it. I hate that it's him and not me. I hate that we never went to Savannah for his full-ride art scholarship; that it took so long for us to realize what our relationship really meant; I hate that we didn't stick it out in LA even though we were drowning; I hate every moment that he was never able to fulfill his dream; and I hate that I love him so much that my heart has been breaking for three years.
I will never let us quit again.
It's been three years of dealing with the fallout of a non-malignant tumor. I mistakenly believed that non-malignant meant everything was going to be fine. "It's cancer, but it's not going to kill him." That's what the doctor said, and I felt relieved for the first time in months. I felt so relieved that when they sat us down and told us the tumor had grown so large that the risk of severing G's facial nerve was 60%, I nearly broke down in tears in front of the surgeon. "What does that mean?" we asked. "It means there is a 60% chance he will not be able to speak or smile. It means he will have palsy on that side of his face." I remember sitting in the surgical waiting room with our two children and it taking everything in me not to sob. Surgery took 6 hours and when it was over, I was just grateful he was alive; that he could smile through the haze of drugs and stitches and blood caked on his face.
Three years ago, everything changed.
Even as I type this I feel ashamed at how upset I am because I know there are people dealing with far worse. I know a specific person dealing with so much worse.
Watching him today absolutely destroyed my soul. He was so hopeful that they could fix this and to be met with something that can't be fixed, just merely managed, is heartbreaking. I've not seen him like this since California and I hate it. I hate that it's him and not me. I hate that we never went to Savannah for his full-ride art scholarship; that it took so long for us to realize what our relationship really meant; I hate that we didn't stick it out in LA even though we were drowning; I hate every moment that he was never able to fulfill his dream; and I hate that I love him so much that my heart has been breaking for three years.
I will never let us quit again.
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