by Allison Moore | Nov 19, 2014 | Uncategorized |
I was kind of nervous about how I’d find Vernon this morning, as he was so sluggish the past few days. But he seemed much more alert, ready to chat about dreams and music and also do some leg exercises. I had told the nurses I wanted them to cut back on the dose of drug that they had doubled the other day, and thankfully, he was more himself again.
However, when I went to meet with the Dialysis Center social worker, I was told that they needed him to be less agitated during his sessions there. They began to ask if they could have the drug given to him before dialysis instead of in the nighttime at the Care Home. If he doesn’t calm down, they told me, I’d need to have a friend of family member to keep company/keep watch over him when he goes there every other afternoon. Its becoming so complicated, everyone wants him at his most manageable, but I know one thing in my gut…he cannot be drugged very much. Or if he is, it must be at the right time. It is illegal for them to physically restrain him in these settings, so these injections are a sort of chemical tether. He is acting like a surly teenager lately, annoyed and agrivated, but as far as I can see, he is not aggressive or dangerous. I guess we all have our own limits of what we are comfortable being around. I’m (not so) secretly thrilled that he is starting to lash out a little. It means there is a fire in there…but then again, I love him. I can’t expect all these medical professionals to feel the same.
After my meeting at the Dialysis Center, I decided to drive up to Downey, another 40 minutes or so northeast….to what has been referred to as the Holy Grail of Brain Rehabilitation: Rancho Los Amigos. Actually, I only heard one person call it that (and that was on a quick visit to another recovery home yesterday on my scavenger-hunt for information) but the mystical phrase alone hit my heart in a way that I thought: “Yes THAT is where my husband needs to go!” I’d read about the hospital before, and I remembered it being a big name when we were dealing with Vernon’s neurosurgery. It is also the place that developed the Rancho Scale of Cognitive Recovery which I have mentioned several times on this very blog.
The place is huge…and really old (in a cool early-California way, not in a dated we-haven’t-needed-to-improve-since the 70s-because-our-patients-are-too-old-to-care-anyway way.)
I had felt last week that we were city kids who were placed in the town, dealing with provincial rules and attitudes that didn’t make sense with our progressive eperience so far, and now I just wanted to get back to the city. Well, this felt like a city. They had all kinds of patients. Wheelchairs and canes filled the hallways. I met this fellow sunning himself on a gurney in the parkinglot. He had a spinal injury and this was one of his first days out of bed in a month. He said the therapy was very aggressive there (in a good way) and that he’d read it was in the top 15 Rehab Hospitals in the country, and definitely the top in Southern California. My heart leapt to my throat. Could I dare hope Vernon could get something like this?
I went to the admission office. As I hadn’t made an appointment, I didn’t get a tour, but I met a lovely young woman who answered my questions and gave me some guidance. She gave me a number to call to request a therapist to come down to assess vernon at his current facility. And we will go from there. One kind of funny thing is that this woman seemed to remember Vernon Adams’ name. She couldn’t find it in the files, but perhaps she had read the blog at some point? Wouldn’t it be funny if Vernon’s name had proceeded him?
I don’t want to get my hopes up. But I do want something like this. Something major. Something different. People who are willing to push Vernon into the next stages of his recovery.
I talked to Lois a few times today as well. One thing she mentioned is that she thought the best place for Vernon would be at home with us. Obviously we are not equipped for this: among other things, we are looking for a new (wheelchair-assessable) home to move into by February, and I haven’t even looked into what that would mean as far as personal-nursing and therapy. But I am starting to be less afraid of the idea as I know at least we will be able to try a variety of alternative therapies and it is a place where LOVE abounds. And I know that is the healing tonic that can flow and reach between the layers where other medicines cannot.
No, I’m not ready for that. But my perspective is shifting quite rapidly. I can being to see him coming home to us. Not yet, but I am ready to prepare myself and the kids for that. I also am ready to send him to “boarding school” if that is what it takes. Rancho Los Amigos is far away, too far for me to visit as regularly as I’ve been able to. But at this point, I would rather him away with people who can understand him, who can be progressive and aggressive in their coaching him to recovery. I haven’t even taken the tour, but I’ve decided its what I want for him.
I pray that this is a Divine Desire…that its not another disappointment, but really a nudge toward the most excellent path.
‘ Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, ‘This is the way; walk in it.’ Isaiah 30:21
I did mention they have an on-site thrift shop, right? That has got to be incentive enough. 🙂
by Allison Moore | Nov 19, 2014 | Uncategorized |
Life isn’t all hard. I just came home from a wonderful party with beloved people (a THANKSGIVING party, no less) and I was even able to bring the kids, who found their own buddies to tuck away with. I think going to parties with my kids (not going to kid-parties) is one of my favorite things in the world! So even if today hadn’t gone so great, the night ended well.
But I still want to record a bit of our day before I forget it forever. (It was a good one, by the way.)
First of all, I want to say thank you to those who have reached out to me since last night’s post with practical suggestions. I woke up feeling ready to fight today. It was as if another gauzy curtain had been lifted. I knew that there were possibilities out there, even if I had to do some detective work to find them. And with that, the Phoenix of Hope rose again.
I didn’t mention it before, but I had a visit the other day from a dear life-friend, Lois Bechtle. She is really more of an aunt, in that she’s known me through my childhood and still remains a pillar for me to return to in adult life. I even lived in her house when I first moved to San Clemente from LA when I was about 30. It was in her house that I was finally able to seek treatment for Depression, and look at is a psycho-physiological issue rather than a shameful failure at self-help.
Anyway, that is enough about my past— I just wanted to express how important Lois has been to me in serious turning points throughout my life. (I became good friends with her daughter when we were about 8 or 9, I think.) Lois has been in the medical profession most of her life…even past retirement age, she is still working as a nurse. And she’s learned to listen to me since I was 8 or 9. She recognizes the truths in my voice when I don’t trust them yet myself. She can help me make sense of my words. On Sunday, when I was floundering, she came over and helped me make a to-do list…of finding people to be on my side. NO, I haven’t got through it all yet. But it gave me some direction. In a nutshell, she encouraged me to appeal to those who had some power, those who could make a difference, or at least guide me forward. She said: “you need to put a face to his situation.”
“In the early days,” she said,” you did that by putting pictures on the wall and bringing his children and friends in. The staff could see the greater picture to his file. You made him a human being they could relate with.”
It’s true that I’ve stopped doing that so much. I’ve burned out a little: I’ve tired of hearing my own voice tell the tale and I certainly don’t have the energy to make a new parade. Now all I have is questions and annoyances. No fun.
Antoine de Saint-Exupery said: “What saves a man is to take a step. Then another step.” It never stops.
It seems that at this week in our journey, this applies more for the wife than for Vernon. We take turns. Marriage is funny like that.
Anyway…back to today: I visited Vernon this morning with my friend Mary, who is so natural in the hospital-surrounding. She had already visited Vernon on her own last week,not even needing me as a tour-guide. So she had also seen the difference of his clarity from a few days ago to what it is now.
Like yesterday, he seemed sedated and groggy in the morning. (I had left a message yesterday with the doctor to pull back on his anti-anxiety meds, but still haven’t heard back from him.) He reminded me of a tired teenager trying to wake up on the weekend when there is no real event to wake up for. It took awhile. And I thought, I’ve seen much stronger glimpses of my husband before now. Where did he go. It wasn’t that bad but it reminded me of “One Flew Over the Cuckoo’s Nest” when a naughty boy who is obviously very sharp suddenly gets a lobotomy just for letting his mind/emotions be known. (On that note, a middle aged Vernon is cuter than a middle-aged Jack Nicholson.)
Lois stopped by the facility today to see if she could help access things with me. She is so wise: she asked for a meeting of the authorities, something I never would have thought to ask for. They all happened to be there within five minutes of the request. I think that in itself if probably a unique moment—a timing-miracle, if you will.
She let me ask the questions, express my concerns. BUT somehow with her there rooting for me, I felt bolder. I felt allowed to speak my piece, which was:
” You tell me everything is about insurance. I understand, I think. But my husband has not had any therapy for 10 days. A speech therapist came today and fed him some ice chips. However, he was so groggy from the medication he was given to keep him from being active in the night, that he could hardly be engaged in his session, and so the therapist wrote him off for not working hard enough. Therefore, Insurance wont approve him for more therapy-time, because he isn’t improving fast enough. It seems to me that there is a vicious cycle spiraling the opposite way that I expect. And we need to stop that and reverse it.”
Who knows if they heard me. The staff seems really great on their own merits. They’ve always seemed to me to be full of good-will and good-energy. Apparently, for me that isn’t enough.
Then Lois brought up something in our meeting that may have been the shifting point of the whole few days.
“What experience do you have with TRAUMATIC BRAIN INJURY?”
……….
Wow. I hadn’t even thought of that. Not lately, anyway. What an epiphany!
Maybe that is the problem. I’ve just gone alone with the tide of recovery because I was looking for the convenient location, somewhere closer to home, so that the family could help nurse him emotionally back to health. But wow! What if we are totally unequipped for this. Even this level of care seems to be lost when it comes to Vernon. As I keep hearing, no two Brain Injury cases are the same. And even with a healthy brain, Vernon never fit the norm. He avoided it.
And so…we are off again. Searching for new places with a different focus. I feel driven. I just hope we can land at the right place…and soon. It appears that brain-injury is a very rare thing indeed. Fitting that my husband should get one. He’s a novelty…always has been, always will be.
I found this picture tonight…from July! One of Vernon’s spiritual mentors reading a Psalm to him. Vernon has always been a bit out of the box. And Eddie is too, not that they always saw eye to eye. But to think: this was only 5 months ago….it does help me put time into perspective.
by Allison Moore | Nov 19, 2014 | Uncategorized |
Life isn’t all hard. I just came home from a wonderful party with beloved people (a THANKSGIVING party, no less) and I was even able to bring the kids, who found their own buddies to tuck away with. I think going to parties with my kids (not going to kid-parties) is one of my favorite things in the world! So even if today hadn’t gone so great, the night ended well.
But I still want to record a bit of our day before I forget it forever. (It was a good one, by the way.)
First of all, I want to say thank you to those who have reached out to me since last night’s post with practical suggestions. I woke up feeling ready to fight today. It was as if another gauzy curtain had been lifted. I knew that there were possibilities out there, even if I had to do some detective work to find them. And with that, the Phoenix of Hope rose again.
I didn’t mention it before, but I had a visit the other day from a dear life-friend, Lois Bechtle. She is really more of an aunt, in that she’s known me through my childhood and still remains a pillar for me to return to in adult life. I even lived in her house when I first moved to San Clemente from LA when I was about 30. It was in her house that I was finally able to seek treatment for Depression, and look at is a psycho-physiological issue rather than a shameful failure at self-help.
Anyway, that is enough about my past— I just wanted to express how important Lois has been to me in serious turning points throughout my life. (I became good friends with her daughter when we were about 8 or 9, I think.) Lois has been in the medical profession most of her life…even past retirement age, she is still working as a nurse. And she’s learned to listen to me since I was 8 or 9. She recognizes the truths in my voice when I don’t trust them yet myself. She can help me make sense of my words. On Sunday, when I was floundering, she came over and helped me make a to-do list…of finding people to be on my side. NO, I haven’t got through it all yet. But it gave me some direction. In a nutshell, she encouraged me to appeal to those who had some power, those who could make a difference, or at least guide me forward. She said: “you need to put a face to his situation.”
“In the early days,” she said, “you did that by putting pictures on the wall and bringing his children and friends in. The staff could see the greater picture to his file. You made him a human being they could relate with.”
I don’t know how true that is.. I’ve stopped doing those things so much. I’ve burned out a little: I don’t have the energy to make the parade. Now all I have is questions and annoyances. No fun.
Antoine de Saint-Exupery said: “What saves a man is to take a step. Then another step.” It never stops.
It seems that at this week in our journey, this applies more for the wife than for Vernon. We take turns. Marriage is funny like that.
Anyway…back to today: I visited Vernon this morning with my friend Mary, who is so natural in the hospital-surrounding. She had already visited Vernon on her own last week,not even needing me as a tour-guide. So she had also seen the difference of his clarity from a few days ago to what it is now. She had also visited Mission many times early-on, so she has also noticed the improvements.
Like yesterday, he seemed sedated and groggy in the morning. (I had left a message yesterday with the doctor to pull back on his anti-anxiety meds, but still haven’t heard back from him.) He reminded me of a tired teenager trying to wake up on the weekend when there is no real event to wake up for. It took awhile. And I thought, I’ve seen much stronger glimpses of my husband before now. Where did he go. It wasn’t that bad but it reminded me of “One Flew Over the Cuckoo’s Nest” when a naughty boy who is obviously very sharp suddenly gets a lobotomy just for letting his mind/emotions be known. (On that note, a middle aged Vernon is cuter than a middle-aged Jack Nicholson.)
Lois stopped by the facility today to see if she could help access things with me. She is so wise: she asked for a meeting of the authorities, something I never would have thought to ask for. They all happened to be there within five minutes of the request. I think that in itself if probably a unique moment—a timing-miracle, if you will.
She let me ask the questions, express my concerns. BUT somehow with her there rooting for me, I felt bolder. I felt allowed to speak my piece, which was:
” You tell me everything is about insurance. I understand, I think. But my husband has not had any therapy for 10 days. A speech therapist came today and fed him some ice chips. However, he was so groggy from the medication he was given to keep him from being active in the night, that he could hardly be engaged in his session, and so the therapist wrote him off for not working hard enough. Therefore, Insurance wont approve him for more therapy-time, because he isn’t improving fast enough. It seems to me that there is a vicious cycle spiraling the opposite way that I expect. And we need to stop that and reverse it.”
Who knows if they heard me. The staff seems really great on their own merits. They’ve always seemed to me to be full of good-will and good-energy. Apparently, for me that isn’t enough.
Then Lois brought up something in our meeting that may have been the shifting point of the whole few days.
“What experience do you have with TRAUMATIC BRAIN INJURY?”
……….
Wow. I hadn’t even thought of that. Not lately, anyway. What an epiphany!
Maybe that is the problem. I’ve just gone alone with the tide of recovery because I was looking for the convenient location, somewhere closer to home, so that the family could help nurse him emotionally back to health. But wow! What if we are totally unequipped for this. Even this level of care seems to be lost when it comes to Vernon. As I keep hearing, no two Brain Injury cases are the same. And even with a healthy brain, Vernon never fit the norm. He avoided it.
And so…we are off again. Searching for new places with a different focus. I feel driven. I just hope we can land at the right place…and soon. It appears that brain-injury is a very rare thing indeed. Fitting that my husband should get one. He’s a novelty…always has been, always will be.
I found this picture tonight…from July! One of Vernon’s spiritual mentors reading a Psalm to him. Vernon has always been a bit out of the box. And Eddie is too, not that they always saw eye to eye. But to think: this was only 5 months ago….it does help me put time into perspective.
by Allison Moore | Nov 19, 2014 | Uncategorized |
Life isn’t all hard. I just came home from a wonderful party with beloved people (a THANKSGIVING party, no less) and I was even able to bring the kids, who found their own buddies to tuck away with. I think going to parties with my kids (not going to kid-parties) is one of my favorite things in the world! So even if today hadn’t gone so great, the night ended well.
But I still want to record a bit of our day before I forget it forever. (It was a good one, by the way.)
First of all, I want to say thank you to those who have reached out to me since last night’s post with practical suggestions. I woke up feeling ready to fight today. It was as if another gauzy curtain had been lifted. I knew that there were possibilities out there, even if I had to do some detective work to find them. And with that, the Phoenix of Hope rose again.
I didn’t mention it before, but I had a visit the other day from a dear life-friend, Lois Bechtle. She is really more of an aunt, in that she’s known me through my childhood and still remains a pillar for me to return to in adult life. I even lived in her house when I first moved to San Clemente from LA when I was about 30. It was in her house that I was finally able to seek treatment for Depression, and look at is a psycho-physiological issue rather than a shameful failure at self-help.
Anyway, that is enough about my past— I just wanted to express how important Lois has been to me in serious turning points throughout my life. (I became good friends with her daughter when we were about 8 or 9, I think.) Lois has been in the medical profession most of her life…even past retirement age, she is still working as a nurse. And she’s learned to listen to me since I was 8 or 9. She recognizes the truths in my voice when I don’t trust them yet myself. She can help me make sense of my words. On Sunday, when I was floundering, she came over and helped me make a to-do list…of finding people to be on my side. NO, I haven’t got through it all yet. But it gave me some direction. In a nutshell, she encouraged me to appeal to those who had some power, those who could make a difference, or at least guide me forward. She said: “you need to put a face to his situation.”
“In the early days,” she said,” you did that by putting pictures on the wall and bringing his children and friends in. The staff could see the greater picture to his file. You made him a human being they could relate with.”
It’s true. I’ve stopped doing that so much. I’ve burned out a little: I don’t have the energy to make the parade. Now all I have is questions and annoyances. No fun.
Antoine de Saint-Exupery said: “What saves a man is to take a step. Then another step.” It never stops.
It seems that at this week in our journey, this applies more for the wife than for Vernon. We take turns. Marriage is funny like that.
Anyway…back to today: I visited Vernon this morning with my friend Mary, who is so natural in the hospital-surrounding. She had already visited Vernon on her own last week,not even needing me as a tour-guide. So she had also seen the difference of his clarity from a few days ago to what it is now. She had also visited Mission many times early-on, so she has also noticed the improvements.
Like yesterday, he seemed sedated and groggy in the morning. (I had left a message yesterday with the doctor to pull back on his anti-anxiety meds, but still haven’t heard back from him.) He reminded me of a tired teenager trying to wake up on the weekend when there is no real event to wake up for. It took awhile. And I thought, I’ve seen much stronger glimpses of my husband before now. Where did he go. It wasn’t that bad but it reminded me of “One Flew Over the Cuckoo’s Nest” when a naughty boy who is obviously very sharp suddenly gets a lobotomy just for letting his mind/emotions be known. (On that note, a middle aged Vernon is cuter than a middle-aged Jack Nicholson.)
Lois stopped by the facility today to see if she could help access things with me. She is so wise: she asked for a meeting of the authorities, something I never would have thought to ask for. They all happened to be there within five minutes of the request. I think that in itself if probably a unique moment—a timing-miracle, if you will.
She let me ask the questions, express my concerns. BUT somehow with her there rooting for me, I felt bolder. I felt allowed to speak my piece, which was:
” You tell me everything is about insurance. I understand, I think. But my husband has not had any therapy for 10 days. A speech therapist came today and fed him some ice chips. However, he was so groggy from the medication he was given to keep him from being active in the night, that he could hardly be engaged in his session, and so the therapist wrote him off for not working hard enough. Therefore, Insurance wont approve him for more therapy-time, because he isn’t improving fast enough. It seems to me that there is a vicious cycle spiraling the opposite way that I expect. And we need to stop that and reverse it.”
Who knows if they heard me. The staff seems really great on their own merits. They’ve always seemed to me to be full of good-will and good-energy. Apparently, for me that isn’t enough.
Then Lois brought up something in our meeting that may have been the shifting point of the whole few days.
“What experience do you have with TRAUMATIC BRAIN INJURY?”
……….
Wow. I hadn’t even thought of that. Not lately, anyway. What an epiphany!
Maybe that is the problem. I’ve just gone alone with the tide of recovery because I was looking for the convenient location, somewhere closer to home, so that the family could help nurse him emotionally back to health. But wow! What if we are totally unequipped for this. Even this level of care seems to be lost when it comes to Vernon. As I keep hearing, no two Brain Injury cases are the same. And even with a healthy brain, Vernon never fit the norm. He avoided it.
And so…we are off again. Searching for new places with a different focus. I feel driven. I just hope we can land at the right place…and soon. It appears that brain-injury is a very rare thing indeed. Fitting that my husband should get one. He’s a novelty…always has been, always will be.
I found this picture tonight…from July! One of Vernon’s spiritual mentors reading a Psalm to him. Vernon has always been a bit out of the box. And Eddie is too, not that they always saw eye to eye. But to think: this was only 5 months ago….it does help me put time into perspective.
by Allison Moore | Nov 19, 2014 | Uncategorized |
Life isn’t all hard. I just came home from a wonderful party with beloved people (a THANKSGIVING party, no less) and I was even able to bring the kids, who found their own buddies to tuck away with. I think going to parties with my kids (not going to kid-parties) is one of my favorite things in the world! So even if today hadn’t gone so great, the night ended well.
But I still want to record a bit of our day before I forget it forever. (It was a good one, by the way.)
First of all, I want to say thank you to those who have reached out to me since last night’s post with practical suggestions. I woke up feeling ready to fight today. It was as if another gauzy curtain had been lifted. I knew that there were possibilities out there, even if I had to do some detective work to find them. And with that, the Phoenix of Hope rose again.
I didn’t mention it before, but I had a visit the other day from a dear life-friend, Lois Bechtle. She is really more of an aunt, in that she’s known me through my childhood and still remains a pillar for me to return to in adult life. I even lived in her house when I first moved to San Clemente from LA when I was about 30. It was in her house that I was finally able to seek treatment for Depression, and look at is a psycho-physiological issue rather than a shameful failure at self-help.
Anyway, that is enough about my past— I just wanted to express how important Lois has been to me in serious turning points throughout my life. (I became good friends with her daughter when we were about 8 or 9, I think.) Lois has been in the medical profession most of her life…even past retirement age, she is still working as a nurse. And she’s learned to listen to me since I was 8 or 9. She recognizes the truths in my voice when I don’t trust them yet myself. She can help me make sense of my words. On Sunday, when I was floundering, she came over and helped me make a to-do list…of finding people to be on my side. NO, I haven’t got through it all yet. But it gave me some direction. In a nutshell, she encouraged me to appeal to those who had some power, those who could make a difference, or at least guide me forward. She said: “you need to put a face to his situation.”
“In the early days,” she said,” you did that by putting pictures on the wall and bringing his children and friends in. The staff could see the greater picture to his file. You made him a human being they could relate with.”
It’s true. I’ve stopped doing that so much. I’ve burned out a little: I don’t have the energy to make the parade. Now all I have is questions and annoyances. No fun.
Antoine de Saint-Exupery said: “What saves a man is to take a step. Then another step.” It never stops.
It seems that at this week in our journey, this applies more for the wife than for Vernon. We take turns. Marriage is funny like that.
Anyway…back to today: I visited Vernon this morning with my friend Mary, who is so natural in the hospital-surrounding. She had already visited Vernon on her own last week,not even needing me as a tour-guide. So she had also seen the difference of his clarity from a few days ago to what it is now. She had also visited Mission many times early-on, so she has also noticed the improvements.
Like yesterday, he seemed sedated and groggy in the morning. (I had left a message yesterday with the doctor to pull back on his anti-anxiety meds, but still haven’t heard back from him.) He reminded me of a tired teenager trying to wake up on the weekend when there is no real event to wake up for. It took awhile. And I thought, I’ve seen much stronger glimpses of my husband before now. Where did he go. It wasn’t that bad but it reminded me of “One Flew Over the Cuckoo’s Nest” when a naughty boy who is obviously very sharp suddenly gets a lobotomy just for letting his mind/emotions be known. (On that note, a middle aged Vernon is cuter than a middle-aged Jack Nicholson.)
Lois stopped by the facility today to see if she could help access things with me. She is so wise: she asked for a meeting of the authorities, something I never would have thought to ask for. They all happened to be there within five minutes of the request. I think that in itself if probably a unique moment—a timing-miracle, if you will.
She let me ask the questions, express my concerns. BUT somehow with her there rooting for me, I felt bolder. I felt allowed to speak my piece, which was:
” You tell me everything is about insurance. I understand, I think. But my husband has not had any therapy for 10 days. A speech therapist came today and fed him some ice chips. However, he was so groggy from the medication he was given to keep him from being active in the night, that he could hardly be engaged in his session, and so the therapist wrote him off for not working hard enough. Therefore, Insurance wont approve him for more therapy-time, because he isn’t improving fast enough. It seems to me that there is a vicious cycle spiraling the opposite way that I expect. And we need to stop that and reverse it.”
Who knows if they heard me. The staff seems really great on their own merits. They’ve always seemed to me to be full of good-will and good-energy. Apparently, for me that isn’t enough.
Then Lois brought up something in our meeting that may have been the shifting point of the whole few days.
“What experience do you have with TRAUMATIC BRAIN INJURY?”
……….
Wow. I hadn’t even thought of that. Not lately, anyway. What an epiphany!
Maybe that is the problem. I’ve just gone alone with the tide of recovery because I was looking for the convenient location, somewhere closer to home, so that the family could help nurse him emotionally back to health. But wow! What if we are totally unequipped for this. Even this level of care seems to be lost when it comes to Vernon. As I keep hearing, no two Brain Injury cases are the same. And even with a healthy brain, Vernon never fit the norm. He avoided it.
And so…we are off again. Searching for new places with a different focus. I feel driven. I just hope we can land at the right place…and soon. It appears that brain-injury is a very rare thing indeed. Fitting that my husband should get one. He’s a novelty…always has been, always will be.
I found this picture tonight…from July! One of Vernon’s spiritual mentors reading a Psalm to him. Vernon has always been a bit out of the box. And Eddie is too, not that they always saw eye to eye. But to think: this was only 5 months ago….it does help me put time into perspective.
by Allison Moore | Nov 17, 2014 | Day by Day, Uncategorized |
“If we become increasingly humble about how little we know, we may be more eager to search.” John Templeton
Oh! This week, this weekend. I think its been the hardest one for me yet.
I am totally fine about Maki having a fun slumber party, remembering to pay my bills, getting the kids to school more-or-less on time, making an unbalanced dinner, applying mascara, finishing photos for clients, whatever makes life feel normal is good. Or if I’m honest: whatever makes me feel in some control (and/or even helpful) is good. I had a photo client cancel a shoot because she was feeling bad for me, and I thought…ok, I can see why you don’t trust me right now, I probably do look crazy; but truthfully, most of these projects give me a sense of normalcy, which may be worth more than the money earned.
So…it’s been a tough week. I think I said that before. Vernon has had some good days, which made me fall in love again with him: his amplified self, his humor, his British charm, and his “I-sound-and-look-like-an-old-man-but-really-I’m-more-modern-than-anyone-you-know” -ness. (That may or may not be a new thing, I can’t remember.)
Here is a sweet, sleeping Vernon. Isn’t he the most gorgeous thing? Lately he has been a bit more sedated so he doesn’t crawl out of his room. I agreed at first that this was probably a smart thing, for his own protection…especially as I can’t be there for 12 hours a day to make sure he doesn’t try to escape. But to see him like this up till noon today, it broke my heart. I know his agitation is annoying to the staff, but he needs to be ready to do physical therapy…when it is approved, that is. And he was in no state for PT this morning… I was happy to hear it wasn’t arranged till after Dialysis this afternoon. None of this feels right.
I’m so confused lately. My gut tells me that something is wrong here. I feel like we have been dropped into Mexico (which is an interesting country in itself, filled with beautiful people…but it has completely different rules and a different language, even than the version many of us took three years of in high school.) The medical world seems to only be understood by people in the field and even then, most of them seem to just shrug when I ask questions…because it keeps changing. It’s a business.
How do I learn the language and who do I find that can coyote us back to the right place? This is an analogy, by the way. Everyone here speaks English to me. Its just that I know so little of the medical world. Who do I learn the language from? Suddenly we are in the land of bureaucracy and background checks and signatures. When Vernon was fighting for life, it was amazing…I have no complaints. I do know that we have been saved some 4-million dollars (WHAT? is that a number I ever thought I would throw around so casually?) through medical insurance. I can’t be more grateful…but now that he is surviving, now that he is less acute. I feel that we have been dropped by helicopter into a wilderness with smiling people who mean well but have their hands tied behind them.
So you can see that by ten days into this plan, still not assured that Vernon has physical or speech therapy (though I am told over and over again that our insurance is the best one for our situation…) I’m a little frustrated. My pastor told me early on in this journey that I should trust my gut…that that is where God speaks to me. I feel that my gut was left behind somewhere and I’m trying to find it again. Has God left me? I don’t think so. So why do I feel this way? Do I have the energy to figure this out. Not really.
But that doesn’t matter. No one else is going to. So…I have to learn Spanish and get moving.
This post is getting a little long. And I haven’t even said what I thought I would. Time to turn it around.
At least he looks peaceful (at noon!) I know that is what I want for him in the nighttime, but not at 11 am, when I’ve got two kids to school, made three breakfasts and a lunch, paid some bills, worked out (on a luxury-day), and driven 45 minutes just to see him. This is not on.
I have more I wanted to record from this weekend, but I can feel this getting long already…
Like I said before, it was a tough weekend. I had two friends visit yesterday. The first, when she asked me, after seeing me get detached and weepy: “Have you been taking your medication? (I’ve been on antidepressants for 13 years, give or take some months,) I shouted at her: “DON’T TELL ME TO TAKE MY MEDICATION!”
Oh dear. Even as I said it, the adult in me shrunk back in embarrassment. If ever there was a moment for the candid camera to be poised. That sounds exactly what someone who hasn’t been taking medication would say. Oops. Crazy alert!
Even though I knew better, I continued: “Don’t tell me how important it is to take care of myself! I’m so tired of people telling me to take care of myself! No one even knows what they are talking about. Give it a rest!”
Yes, I’m the Crazy Friend, apparently. Fortunately she didn’t disown me but came back later with a bottle of wine….and also a days of the week ‘vitamin’ pack to tuck into my handbag.
To be continued…
