Sometimes its good and sometimes its not. There are days I wake up afraid to move because its going to hurt. I keep my pain meds downstairs, forcing me to move and engage in the home and family. It's sad that there are days like that. Yesterday was one, I ached. Everywhere I hurt.
Going down for a nap in the afternoon is easier than you think, and I am always tired by that night. Some days its 2 hours, some days its four. I am out, dead to the world and I don't need any help getting to sleep.
The sweetest thing about this time is my darling 3 year old. We do nap time together. After my hospital stay I have noticed my boys hover. They want to touch, hold, see and be near me. this can be fatiguing but is also healing. It is healing for them and for me. My son hates naps but as soon as the mom component comes in he's all for it. So there we are, me, my son, his blanket and stuffed toy.
So, I sleep. My son curls himself into my arms, close enough to touch at all times. Little Bear under his blankie, I have my own for napping. I hear his breathing steady and deep as I drop off. It doesn't matter the weight on my arm or the heat in the room. We sleep. We nap. I heal.
God, I am so grateful for this chance to be with my boys again. To be with my family and heal spiritually as well as physically. Despite the challenges and the bad days. Moments like this are worth everything.
Friday, July 31, 2015
Thursday, July 30, 2015
1812 Overture
So there is an awesome concert I can in no way attempt to attend. It's the 1812 Overture, with real cannons. In honor of me missing music today due to extreme sound and hearing sensitivity, please enjoy the following...
If you were wondering, today sucked. All I want to do is curl up in a ball and sleep. My head hurts no matter the pain relievers I take and I am totally on edge. I am just waiting for the night to be over.
Hoped you liked the music, its supposed to be awesome. (I wouldn't know yet.) And on that pity note, I'm headed to rest. God is good, tomorrow is a new day. And most days are not like this but when they are, it sucks!
If you were wondering, today sucked. All I want to do is curl up in a ball and sleep. My head hurts no matter the pain relievers I take and I am totally on edge. I am just waiting for the night to be over.
Hoped you liked the music, its supposed to be awesome. (I wouldn't know yet.) And on that pity note, I'm headed to rest. God is good, tomorrow is a new day. And most days are not like this but when they are, it sucks!
Wednesday, July 29, 2015
Commonalities
Had a big day today. I had appointments set with my therapy team discussing progress and planning the next steps. A neighbor had therapy at the same time and was able to offer a ride. On the way we got to talking, both curious about the others experience. Despite differences in type and location of injury we had some strong commonalities.
1. We both feel guilty we are not healing faster. When in the role of doing and being, to sit and rest/recuperate, its discouraging and fatiguing.
2. We experience the need to do more and be more for our children; we feel guilty and embarrassed when we fall short of our expectations of what that should be. This guilt does not come from our children, they are just happy to have us around in whatever way they can. They accept the changes and don't compare us to our past selves.
3. During our individual journeys we both have lost what we used to believe was who we are. We lost a part of ourselves, only to find that who we are is still here. The trappings we surround ourselves with, the busy, the identity we form for our self is not who we are. We are spirit children of God. Literally separate from the physical form. (I wonder how many injured persons really exist within the shell of their life? Learning and waiting until their true self can emerge?)
4. God is bigger than everything. He can take the tattered pieces of our life and make from it beautiful tapestries. Holding to Him allows us both strength to move through the hard things. To believe there is more than now.
5. Love and support is vital from our closest family and friends. As my speech therapist says we each need an advocate/protector. I call this my touchstone, my center. The person around which I can be fully vulnerable, my sounding board and my cheerleader. Sometimes this can be in one person, sometimes it is found within a team of people.
Surround yourself with people who support and encourage you every day. Find a place of healing and center where you can allow your mind to rest. Where you can move forward in healing, without needing to defend or explain. You can do this.
1. We both feel guilty we are not healing faster. When in the role of doing and being, to sit and rest/recuperate, its discouraging and fatiguing.
2. We experience the need to do more and be more for our children; we feel guilty and embarrassed when we fall short of our expectations of what that should be. This guilt does not come from our children, they are just happy to have us around in whatever way they can. They accept the changes and don't compare us to our past selves.
3. During our individual journeys we both have lost what we used to believe was who we are. We lost a part of ourselves, only to find that who we are is still here. The trappings we surround ourselves with, the busy, the identity we form for our self is not who we are. We are spirit children of God. Literally separate from the physical form. (I wonder how many injured persons really exist within the shell of their life? Learning and waiting until their true self can emerge?)
4. God is bigger than everything. He can take the tattered pieces of our life and make from it beautiful tapestries. Holding to Him allows us both strength to move through the hard things. To believe there is more than now.
5. Love and support is vital from our closest family and friends. As my speech therapist says we each need an advocate/protector. I call this my touchstone, my center. The person around which I can be fully vulnerable, my sounding board and my cheerleader. Sometimes this can be in one person, sometimes it is found within a team of people.
Surround yourself with people who support and encourage you every day. Find a place of healing and center where you can allow your mind to rest. Where you can move forward in healing, without needing to defend or explain. You can do this.
Tuesday, July 28, 2015
Sleeping
They say that when I sleep my mind can heal. I sleep a lot now. I used to sleep only a few hours, now sometimes I cannot wake up when I choose. But the sleep is different, it feels more complete. Then I wake up, and I drift slowly in to awakening.
How is it that at those times upon waking I feel more calm and connected with my soul? It's as if there is a great coming together. My self, my memories, my choices, and all that I believed I was. Upon waking I no longer feel a sense of healing but instead feel the greatness of an emotional self. A self long rejected because of fear, because of necessity. The pain we work with every day is overwhelming and continues to swallow up my mind, my self.
Then, as if a great hand is moving pieces on a chess board, I am able to recall things with greater clarity. Not just recall, feel. Feel everything. The greatness of God, of life, of my very existence.
How many of us really get a second chance to do things right. I regret. So many mistakes. But the greatness is there and in healing I can let go. God holds it all. I am overcome by the beauty of His will.
How great Thou art.
My God.
My Savior.
My second chance.
Then I am awake and yet asleep. Aware and yet watching, waiting, I am healing. It is slow. But the work that God is performing will take time. If I allow it...I must.
"Oh Lord, My God. When I in awesome wonder consider all the worlds Thy hands have made. I see the stars, I hear the rolling thunder. Thy power throughout the universe displayed."
How is it that at those times upon waking I feel more calm and connected with my soul? It's as if there is a great coming together. My self, my memories, my choices, and all that I believed I was. Upon waking I no longer feel a sense of healing but instead feel the greatness of an emotional self. A self long rejected because of fear, because of necessity. The pain we work with every day is overwhelming and continues to swallow up my mind, my self.
Then, as if a great hand is moving pieces on a chess board, I am able to recall things with greater clarity. Not just recall, feel. Feel everything. The greatness of God, of life, of my very existence.
How many of us really get a second chance to do things right. I regret. So many mistakes. But the greatness is there and in healing I can let go. God holds it all. I am overcome by the beauty of His will.
How great Thou art.
My God.
My Savior.
My second chance.
Then I am awake and yet asleep. Aware and yet watching, waiting, I am healing. It is slow. But the work that God is performing will take time. If I allow it...I must.
"Oh Lord, My God. When I in awesome wonder consider all the worlds Thy hands have made. I see the stars, I hear the rolling thunder. Thy power throughout the universe displayed."
Knots of Prayer
In coping with the changes, and sometimes lack of changes that are happening in my life right now I have a favorite poem to remember what matters. I have not been able to find who wrote it but it offers me reflection and a reminder of the God that supports me right now in my healing.
Knots of Prayer
Dear God;
Please untie the nots that are in my mind, my heart and my life.
Remove the have nots, the can nots and the do nots that I have in my mind.
Erase the will nots, may nots, and might nots that may find a home in my heart.
Release me from the could nots, would nots and should nots that obstruct my life.
And most of all, Dear God,
I ask that you remove from my mind, my heart and my life all the "am nots" that I have allowed to hold me back, especially the thought that I am not good enough.
Please, ask that You replace the "am nots" with:
I am strong.
I am valuable.
I am lovable.
I am good enough, because "I Am".
Amen.
Knots of Prayer
Dear God;
Please untie the nots that are in my mind, my heart and my life.
Remove the have nots, the can nots and the do nots that I have in my mind.
Erase the will nots, may nots, and might nots that may find a home in my heart.
Release me from the could nots, would nots and should nots that obstruct my life.
And most of all, Dear God,
I ask that you remove from my mind, my heart and my life all the "am nots" that I have allowed to hold me back, especially the thought that I am not good enough.
Please, ask that You replace the "am nots" with:
I am strong.
I am valuable.
I am lovable.
I am good enough, because "I Am".
Amen.
Thursday, July 23, 2015
Pain and What It Teaches
This whole experience has permanently changed my relationship with pain and understanding how and when it impacts my life.
1. Did you know that areas of lost sensation and numbness develop their own type of pain? You can't feel it but everything aches and if you are asked to pinpoint where it hurts, you can't. My grandmother had an accident years ago and laughingly joked that after losing one of her toes, "it itches, but I can't scratch it." It's that way for me. I feel the pain but nothing makes it better. It aches and I can't stop it. Over the counter painkillers don't touch it either, you just have to wait it out.
2. Emotional pain and loss hurts more physically than recovering from brain surgery. I'm talking deep aches in the furthest and darkest corners of your heart and you swear that it would hurt less to have your heart removed from your chest. In fact you would pay someone to do just that. No amount of crying or sleeping seems to make it better and you cant see any way around it. So, you take a gasping breath and walk through it hoping and praying that there is hope on the other side.
3. Codeine based medications numb you out so that you feel nothing, but the internal ache is still there. I had to get rid of some of my pain killers because that feeling sounds so good on days when everything hurts. I now understand how seductive the idea of not hurting anymore can be.
4. If you don't tell people your limits they don't see you hurting. Even those closest to you will continue to imagine things are fine if you are still up and moving even if every part of you is screaming in agony. I mask and cover up, sometimes too well. I have to tell those closest to me when I hurt.
5. God will walk with you through any fire and He will carry you when you can no longer go on.
God bless and keep you.
1. Did you know that areas of lost sensation and numbness develop their own type of pain? You can't feel it but everything aches and if you are asked to pinpoint where it hurts, you can't. My grandmother had an accident years ago and laughingly joked that after losing one of her toes, "it itches, but I can't scratch it." It's that way for me. I feel the pain but nothing makes it better. It aches and I can't stop it. Over the counter painkillers don't touch it either, you just have to wait it out.
2. Emotional pain and loss hurts more physically than recovering from brain surgery. I'm talking deep aches in the furthest and darkest corners of your heart and you swear that it would hurt less to have your heart removed from your chest. In fact you would pay someone to do just that. No amount of crying or sleeping seems to make it better and you cant see any way around it. So, you take a gasping breath and walk through it hoping and praying that there is hope on the other side.
3. Codeine based medications numb you out so that you feel nothing, but the internal ache is still there. I had to get rid of some of my pain killers because that feeling sounds so good on days when everything hurts. I now understand how seductive the idea of not hurting anymore can be.
4. If you don't tell people your limits they don't see you hurting. Even those closest to you will continue to imagine things are fine if you are still up and moving even if every part of you is screaming in agony. I mask and cover up, sometimes too well. I have to tell those closest to me when I hurt.
5. God will walk with you through any fire and He will carry you when you can no longer go on.
God bless and keep you.
Saturday, July 18, 2015
Faith
My faith requires commitment.
Commitment to my God and to myself. Belief and an unwavering focus on supporting what it is I have faith in. This can be used as a noun or a pronoun. Faith is more than church, more than religion, it is a complete embodiment of the values and beliefs we each express.
I believe people are basically good. In other words, I have faith in the goodness of people. I put this in action by trusting the intentions of others to be good. I act as if those I meet intend to do good. I can prepare and protect myself- that's part of self-sufficiency, another belief. But I can, in my interactions with others, assume innocence.
My faith is strengthened through commitment and grows as I put it into practice. Live as you profess to believe.
Social Mask: Being Genuine I
Our society is unforgiving and judgmental. Daily there are stories of "so and so did this or that, they are so awful". The remarks and disdain showed for others is significant. Examples range from child rearing to elder care. (Everyone has an opinion of some one else's life.) Given that how we, as a social group, currently live it is not surprising that we also have developed a series of masks.
Why would we then want to change?Be more open and more vulnerable to being judged by others. I can't imagine anyone wants to leave themselves open to ridicule. It hurts and we react, close ourselves up, lock it all away behind a mask.
There are two sides to the coin. We imagine that we avoid ridicule by holding ourselves back. Have you ever seen ignoring a bully to ensure you will not become a target? No? Neither have I. Bullies will attack anyone, anytime, for any reason. In researching the nature of bullies I found that they lash out often for the same reason many avoid being genuine, fear of being vulnerable.
So, we are not protected by ignoring the issue. What does work? Nothing I've come across. When we lock ourselves away we also close off to the possibility of acceptance. The only option then is to be vulnerable, to risk, to take off the mask.
Take the risk. Be open to being vulnerable, in it you will find new levels of strength.
Thursday, July 16, 2015
Positive Aspects
Many times on this journey I have been made aware that my children are being affected by the changes to their schedule and home. This was recently brought home to me when my middle child had a sobbing breakdown that mom was going to go to the doctor and wasn't going home. This was shared with my husband after a day of tantrums and yelling that we couldn't figure out. Here he was, my sweet son, harboring a deep fear in his heart that mommy was not going to stay with him. Speaking to friends also dealing with family illness, fears and changes in children's behavior is common.
There has to be a positive aspect to this. There has to be something strength based that my children can get out of it. Today I saw the following article. Enjoy!
https://www.understood.org/en/friends-feelings/managing-feelings/feeling-victimized/4-strengths-that-come-from-challenges?
God loves you. I love you. You will get through today.
There has to be a positive aspect to this. There has to be something strength based that my children can get out of it. Today I saw the following article. Enjoy!
https://www.understood.org/en/friends-feelings/managing-feelings/feeling-victimized/4-strengths-that-come-from-challenges?
God loves you. I love you. You will get through today.
Wednesday, July 15, 2015
Stay'n Alive
Recently a dear friend of mine reminded me of the value of music in healing. With my unreliable hearing this has become an especially difficult challenge. I love music. Loud music or soft music. Classical, new age, techno, funk, some jazz, folk music, rock and roll both new and old. Of all these, disco holds a special place in my heart. It is my happy kick butt music that I have no problem listening to with windows down and my hair blowing back in the car. (That is a joy that will wait for another day.)
ABBA, Donna Summer, Barry White, the Bee Gees...it's a beautiful thing.
I have to be careful and selective listening to music now as it can easily overload my system. I spent time yesterday deliberately removed to listen to one of my favorite Bee Gees songs. It was worth it. I'm not up to turning up the volume or jamming through the house anytime time soon but it helped to remember that I am still here. It's important to make the most of it.
You are welcome to enjoy my personal anthem this week as I listen to Stay'n Alive. Kristine, thank you for the reminder that we can use music to heal.
God loves you. I love you. Never forget that.
ABBA, Donna Summer, Barry White, the Bee Gees...it's a beautiful thing.
I have to be careful and selective listening to music now as it can easily overload my system. I spent time yesterday deliberately removed to listen to one of my favorite Bee Gees songs. It was worth it. I'm not up to turning up the volume or jamming through the house anytime time soon but it helped to remember that I am still here. It's important to make the most of it.
You are welcome to enjoy my personal anthem this week as I listen to Stay'n Alive. Kristine, thank you for the reminder that we can use music to heal.
God loves you. I love you. Never forget that.
Tuesday, July 14, 2015
Being Busy
I'm not quite sure of where it started but this whole experience has left me thinking, a lot. (Probably too much.) I am left to think all the time. In my interactions with people I notice things I didn't see before. I have to take my time with everything and it leads to a deeper overall experience. Where ever I am I am there fully. I see more and experience things deeper. I am completely immersed in where I am and who I am with as long as I can be.
I see things like surprise, impatience, and sometimes a feeling that hovers over the edge of the conversation like people are just waiting to move on. (How much is long enough for me to wait?) A feeling that we do not really interact but instead as individuals we are waiting to rush to something more interesting, more urgent, (dare I say it) more important.
At these times I think how much I have missed. Before the tumor and this forced slow down, I rushed between events. Putting out fires, running a home, too busy with busyness that I really did not live.
I existed.
I existed physically but I never really immersed myself in those around me. My family, my friends, my God. When did I last take the time to forget me and become lost in the experience of someone else?
I am shocked at the selfishness I have seen in my own life. I get the sense that I existed with the belief that what I did and was doing was more interesting, more urgent, and more important. I could not see the needs that passed me by.
To my family, my friends, and my God:
I am sorry.
Let me say that again, I am sorry. I will use this second chance to not solely exist but to live, to share, and to be open to others. I will see you as you are and let you see me as I am. I am sorry for the busy, for the social mask that prevented us from really being as one. I love you. I think of you. I pray for you daily. I pray that I can be aware. Aware of you. Aware of your needs. And see what it is that my God would have me to do support you on your journey.
I see things like surprise, impatience, and sometimes a feeling that hovers over the edge of the conversation like people are just waiting to move on. (How much is long enough for me to wait?) A feeling that we do not really interact but instead as individuals we are waiting to rush to something more interesting, more urgent, (dare I say it) more important.
At these times I think how much I have missed. Before the tumor and this forced slow down, I rushed between events. Putting out fires, running a home, too busy with busyness that I really did not live.
I existed.
I existed physically but I never really immersed myself in those around me. My family, my friends, my God. When did I last take the time to forget me and become lost in the experience of someone else?
I am shocked at the selfishness I have seen in my own life. I get the sense that I existed with the belief that what I did and was doing was more interesting, more urgent, and more important. I could not see the needs that passed me by.
To my family, my friends, and my God:
I am sorry.
Let me say that again, I am sorry. I will use this second chance to not solely exist but to live, to share, and to be open to others. I will see you as you are and let you see me as I am. I am sorry for the busy, for the social mask that prevented us from really being as one. I love you. I think of you. I pray for you daily. I pray that I can be aware. Aware of you. Aware of your needs. And see what it is that my God would have me to do support you on your journey.
You are amazing and I love you. God loves you and you are ever in his care.(Even if you are too busy to notice right now.)
Becoming Bitter
In my reading I come across stories that I love. One friend cautioned me recently about avoiding the trap of bitterness. Bitterness for the loss, the change, even survivors guilt. The following story puts things in such great perspective.
May we all be able to better enlarge our sense of things. Have a great day!
We Are One: Become....: From Facebook....if it is posted there I figure it is meant to be shared. Nicole Daedone with Silka Jewell and 3 others An aging mast...
You are amazing and I love you. God loves you and you are ever in his care.
May we all be able to better enlarge our sense of things. Have a great day!
We Are One: Become....: From Facebook....if it is posted there I figure it is meant to be shared. Nicole Daedone with Silka Jewell and 3 others An aging mast...
You are amazing and I love you. God loves you and you are ever in his care.
Sunday, July 12, 2015
Baby Brain
After surgery my wonderful surgeon explained that my lost sense of taste, struggles with vision and hearing were the result of having him "playing around in my brain."
As I have gone on this journey, I find it easiest to picture my brain like that of a newborn, a few weeks old. Having three young boys just in that toddler/elementary school age this is a comparison that helps me be more patient with myself and explain to my children why mommy is not quite the same anymore.
I call this my "Baby Brain".
Combining words was a challenge. I had control of my vocabulary, but not always of how words connected and my ability to maintain conversation was short lived. By six to seven weeks post surgery, I and my little baby brain have come a long way. I now compare more to a four year old than a newborn with many of the same attendant issues; emotional regulation sucks, decision making and impulsivity are a problem, and maintaining connections/relationships between items is a challenge.
If given pictures of animals, for example, I could name the animal and potentially even tell you what they do, but I may not be able to tell you what sound they make.
I achieved stacking blocks at my last OT appointment and we got to 11 blocks. (This is really good.) I challenged myself further by insisting in taking them off one at a time without knocking them down. I had some close calls but made it. *Please don't tell my husband as prior to this I was the reigning Jenga champion. He might want a rematch.
I can name colors and differentiate between shades, as an artist this was a difficult challenge to face.
I still cannot balance for more than three seconds on either foot.
It's about baby steps with my baby brain. If you have a loved one coping post craniotomy or even living with an active tumor, cut them some slack. You would be surprised how hard what you do everyday really is.
You are amazing and I love you. God loves you and you are ever in his care.
As I have gone on this journey, I find it easiest to picture my brain like that of a newborn, a few weeks old. Having three young boys just in that toddler/elementary school age this is a comparison that helps me be more patient with myself and explain to my children why mommy is not quite the same anymore.
I call this my "Baby Brain".
Seriously my poor brain best compares to that of an infant progressing into toddlerhood. After surgery I had trouble with basic functions; breathing regularly, eating and digestion, voice control and word choice. My mealtime habits resembled an infant with a liquid or soft liquid diet; anything clear, colorless, and mushy.
Combining words was a challenge. I had control of my vocabulary, but not always of how words connected and my ability to maintain conversation was short lived. By six to seven weeks post surgery, I and my little baby brain have come a long way. I now compare more to a four year old than a newborn with many of the same attendant issues; emotional regulation sucks, decision making and impulsivity are a problem, and maintaining connections/relationships between items is a challenge.
If given pictures of animals, for example, I could name the animal and potentially even tell you what they do, but I may not be able to tell you what sound they make.
I achieved stacking blocks at my last OT appointment and we got to 11 blocks. (This is really good.) I challenged myself further by insisting in taking them off one at a time without knocking them down. I had some close calls but made it. *Please don't tell my husband as prior to this I was the reigning Jenga champion. He might want a rematch.
I can name colors and differentiate between shades, as an artist this was a difficult challenge to face.
I still cannot balance for more than three seconds on either foot.
It's about baby steps with my baby brain. If you have a loved one coping post craniotomy or even living with an active tumor, cut them some slack. You would be surprised how hard what you do everyday really is.
You are amazing and I love you. God loves you and you are ever in his care.
Friday, July 10, 2015
Warning- Explicit Language #2
Holy fucking hell.
I have just spent the last two days with literally a short in my brain. Unable to interact normally or function with others after one exhausting phone call regarding my status as a patient.
How someone, who is an experienced professional, could fuck this up so absolutely blows my mind. Congratulations for not keeping good notes at my one month update and for screwing this up. Anytime I attend medical appointments, I take someone else because I can't trust my brain to work or remember. I also rehearse the questions and concerns I have so that I can get answers. The person in question, first of all, had reviewed the wrong file. Yes I had a craniotomy, no it was not planned, no it was not minor. My husband reviewed my case for this person and then the light went on.
"Oh, you're that one."
"No, fuck." (I now wish I had said but my response was nicer and more appropriate.)
During the appointment this person was unable to answer many questions such as prognosis and time lines for recovery. She said she would review things with the doctor and call us with answers, I'm ok with that. She did review all my follow-up MRI's and explain them. She also, after being told by my husband that I had, in the past, been a medical massage therapist. She reviewed the surgery notes, which were awesome. In light of some of my conversations with the doctor it totally makes sense. (He even claimed initial responsibility for my profanity because he had done a lot of swearing when he found my tumor, which was fibrous type, wrapped around many of my facial nerves. He spent hours carving it away one piece at a time.)
During a call to the doctor office, speaking to medical records, I found that my notes were not reported correctly and that things not discussed were added to my file notes. Seriously! Are you really aware of the potential impact of your poor reporting? My hell, you could have fucked up my records. Thank God I called to get them sorted out and that I have notes that show what was really going on.
A surgeon of this level and magnitude needs better people supporting him. His PA is incredible but most people in his office, are awful.
"Hey, lets call and trust the craniotomy patient to know and answer all these questions because we couldn't keep our patients straight and complete notes correctly." What the hell, I'm not doing anything anyway.
We had a problem with our first interactions at this office in brief our previous issue is as follows:
At my follow-up one week after discharge from the hospital to get my staples removed, we met and were treated by a MA. After the staple removal, which was pretty easy, we asked to have my lungs checked. I was placed on medication to combat minor pneumonia in the hospital, they feared I had aspirated during surgery. We were told to have my lungs checked at the one week appointment, just in case. The medical assistant could not find a stethoscope to listen to my lungs and in a large office with many registered nurses and physicians assistants did not think to ask one of them for help. We had to call my primary care doctor and schedule an appointment 45 minutes away, to check that the pneumonia has gone. My doctor also placed me on some rather important medication to facilitate nerve regeneration, yup, the nurses had missed that one.
I am too sick and too tired to deal with this shit.
I have just spent the last two days with literally a short in my brain. Unable to interact normally or function with others after one exhausting phone call regarding my status as a patient.
How someone, who is an experienced professional, could fuck this up so absolutely blows my mind. Congratulations for not keeping good notes at my one month update and for screwing this up. Anytime I attend medical appointments, I take someone else because I can't trust my brain to work or remember. I also rehearse the questions and concerns I have so that I can get answers. The person in question, first of all, had reviewed the wrong file. Yes I had a craniotomy, no it was not planned, no it was not minor. My husband reviewed my case for this person and then the light went on.
"Oh, you're that one."
"No, fuck." (I now wish I had said but my response was nicer and more appropriate.)
During the appointment this person was unable to answer many questions such as prognosis and time lines for recovery. She said she would review things with the doctor and call us with answers, I'm ok with that. She did review all my follow-up MRI's and explain them. She also, after being told by my husband that I had, in the past, been a medical massage therapist. She reviewed the surgery notes, which were awesome. In light of some of my conversations with the doctor it totally makes sense. (He even claimed initial responsibility for my profanity because he had done a lot of swearing when he found my tumor, which was fibrous type, wrapped around many of my facial nerves. He spent hours carving it away one piece at a time.)
During a call to the doctor office, speaking to medical records, I found that my notes were not reported correctly and that things not discussed were added to my file notes. Seriously! Are you really aware of the potential impact of your poor reporting? My hell, you could have fucked up my records. Thank God I called to get them sorted out and that I have notes that show what was really going on.
A surgeon of this level and magnitude needs better people supporting him. His PA is incredible but most people in his office, are awful.
"Hey, lets call and trust the craniotomy patient to know and answer all these questions because we couldn't keep our patients straight and complete notes correctly." What the hell, I'm not doing anything anyway.
We had a problem with our first interactions at this office in brief our previous issue is as follows:
At my follow-up one week after discharge from the hospital to get my staples removed, we met and were treated by a MA. After the staple removal, which was pretty easy, we asked to have my lungs checked. I was placed on medication to combat minor pneumonia in the hospital, they feared I had aspirated during surgery. We were told to have my lungs checked at the one week appointment, just in case. The medical assistant could not find a stethoscope to listen to my lungs and in a large office with many registered nurses and physicians assistants did not think to ask one of them for help. We had to call my primary care doctor and schedule an appointment 45 minutes away, to check that the pneumonia has gone. My doctor also placed me on some rather important medication to facilitate nerve regeneration, yup, the nurses had missed that one.
I am too sick and too tired to deal with this shit.
This IS a Life of Miracles
Miracles do happen, we just have to be paying attention.
Sometimes I need a reminder of the miracles that I have experienced during this journey.
This whole thing came about because on Memorial Day of this year my in laws were in town and we planned a trip to Living Planet Aquarium in Salt Lake. I woke that morning feeling sick and I had a horrible headache (great, because I want to deal with the flu.) I refused to cancel and commented to my husband when it was suggested that "I won't have that many opportunities for things like this as the kids get older."
At the aquarium I took it easy. Walked slow, brought up the rear, you know went with the flow. We were home pretty early in the day and I went to rest.
The next day I had work but woke up with a horrible headache. At this point I knew something was really wrong. The pain was in constant flux; it would ebb and flow. I took a sick day from work and called to get in with my primary care provider, a wonderful internist who has been my doctor for years. During my appointment he diagnosed/suggested that it was encephalitis, swelling on the brain. He and an associate poked and prodded, tested reflexes, looked in my eyes, all that doctory stuff.
I was sent home with two prescriptions; if I had another driver with me they would have given me a shot and sent me home to sleep. I was also sent to have blood drawn, this showed an elevated white blood cell count indicating an infection. My mother in law came down from where she was staying in Salt Lake to stay with the boys. My husband worked to get two elders from our church to give me a blessing (thank you Janson and Scott.)
The blessing charged me to have faith, to be healed, and to be prepared to see the miracles that would occur as I faced the challenge ahead of me and my family. I commented to one of them as they were leaving that it was a pretty intense blessing for a simple infection but thank you for coming over.
Mom got here and I then went to bed and slept for 5 hours. I didn't stir, I didn't budge. My husband was home by then and told me not to worry, I looked like I needed it. He wanted to know the update from the doctor, they had given me a printout and instructions on what to watch for to ensure that meningitis did not develop.
The evening proceeded normally and we retired for the night. Around 2 AM my husband reports he woke up to find me lying in the bathtub, clothed. According to him I had fallen and was talking weird. For the next 30 minutes he asked me questions such as my name and the date. He then asked me why I fell in the tub. When I reported I did not remember falling into the tub he went into action. two of the three signs to watch for if meningitis was developing were blackouts and talking nonsense.
He called my cousin, who lives in the next town, to come and stay with our kids. He was rushing me to the ER. Less than 30 minutes later we were on our way.
By 6:30 that morning after many tests I was on my way to an MRI.
By 8:30 am we were rushing to UVMC for emergency surgery.
I had a craniotomy at 6:30 AM Thursday morning.
Many miracles led to saving my life as my tumor had just begun to cut off blood flow and CSF fluid to my brain. It had shifted and was sitting near the top of my brain stem on my primitive brain. The tumor was the size of a lemon and was interfering obviously with my life functions. Conversations post surgery with my surgeon he believes that, if not identified when it was, I would have died within a matter of weeks.
The concerns of meningitis and the medical visit the previous day caused the ER doctor to take more seriously our concerns and order a CT scan, that showed pressure and a large shady area in the brain.
Conferencing with the doctor who would be my brain surgeon, one of the best, occurred as he had just that day returned from vacation and was preparing for his week of surgeries. My surgeon met and admitted me through the second ER when we were transferred. It was also his recommendation to skip a spinal tap (thank you very much) because he was pretty certain an MRI would show a tumor.
Surgery occurred just 24 hours from the MRI that identified my lemon-sized meningioma. I was blessed with incredible and proficient medical care; my nurses were the best and my surgeon kept coming by to visit. He said he rarely gets to talk to patients with tumors the size of mine; they are usually unconscious by the time the tumor is found.
My elevated white blood cells worked to protect me in the hospital and helped my body and brain to recover post surgery, enabling me to return home in a timely manner.
More miracles have occurred since then and the support from my family, friends, and community have been heart warming. I can never express thanks enough for those caring for my loved ones, when I could not. These blessings continue to flow.
May God bless you on your journey.
Sometimes I need a reminder of the miracles that I have experienced during this journey.
This whole thing came about because on Memorial Day of this year my in laws were in town and we planned a trip to Living Planet Aquarium in Salt Lake. I woke that morning feeling sick and I had a horrible headache (great, because I want to deal with the flu.) I refused to cancel and commented to my husband when it was suggested that "I won't have that many opportunities for things like this as the kids get older."
At the aquarium I took it easy. Walked slow, brought up the rear, you know went with the flow. We were home pretty early in the day and I went to rest.
The next day I had work but woke up with a horrible headache. At this point I knew something was really wrong. The pain was in constant flux; it would ebb and flow. I took a sick day from work and called to get in with my primary care provider, a wonderful internist who has been my doctor for years. During my appointment he diagnosed/suggested that it was encephalitis, swelling on the brain. He and an associate poked and prodded, tested reflexes, looked in my eyes, all that doctory stuff.
I was sent home with two prescriptions; if I had another driver with me they would have given me a shot and sent me home to sleep. I was also sent to have blood drawn, this showed an elevated white blood cell count indicating an infection. My mother in law came down from where she was staying in Salt Lake to stay with the boys. My husband worked to get two elders from our church to give me a blessing (thank you Janson and Scott.)
The blessing charged me to have faith, to be healed, and to be prepared to see the miracles that would occur as I faced the challenge ahead of me and my family. I commented to one of them as they were leaving that it was a pretty intense blessing for a simple infection but thank you for coming over.
Mom got here and I then went to bed and slept for 5 hours. I didn't stir, I didn't budge. My husband was home by then and told me not to worry, I looked like I needed it. He wanted to know the update from the doctor, they had given me a printout and instructions on what to watch for to ensure that meningitis did not develop.
The evening proceeded normally and we retired for the night. Around 2 AM my husband reports he woke up to find me lying in the bathtub, clothed. According to him I had fallen and was talking weird. For the next 30 minutes he asked me questions such as my name and the date. He then asked me why I fell in the tub. When I reported I did not remember falling into the tub he went into action. two of the three signs to watch for if meningitis was developing were blackouts and talking nonsense.
He called my cousin, who lives in the next town, to come and stay with our kids. He was rushing me to the ER. Less than 30 minutes later we were on our way.
By 6:30 that morning after many tests I was on my way to an MRI.
By 8:30 am we were rushing to UVMC for emergency surgery.
I had a craniotomy at 6:30 AM Thursday morning.
Many miracles led to saving my life as my tumor had just begun to cut off blood flow and CSF fluid to my brain. It had shifted and was sitting near the top of my brain stem on my primitive brain. The tumor was the size of a lemon and was interfering obviously with my life functions. Conversations post surgery with my surgeon he believes that, if not identified when it was, I would have died within a matter of weeks.
The concerns of meningitis and the medical visit the previous day caused the ER doctor to take more seriously our concerns and order a CT scan, that showed pressure and a large shady area in the brain.
Conferencing with the doctor who would be my brain surgeon, one of the best, occurred as he had just that day returned from vacation and was preparing for his week of surgeries. My surgeon met and admitted me through the second ER when we were transferred. It was also his recommendation to skip a spinal tap (thank you very much) because he was pretty certain an MRI would show a tumor.
Surgery occurred just 24 hours from the MRI that identified my lemon-sized meningioma. I was blessed with incredible and proficient medical care; my nurses were the best and my surgeon kept coming by to visit. He said he rarely gets to talk to patients with tumors the size of mine; they are usually unconscious by the time the tumor is found.
My elevated white blood cells worked to protect me in the hospital and helped my body and brain to recover post surgery, enabling me to return home in a timely manner.
More miracles have occurred since then and the support from my family, friends, and community have been heart warming. I can never express thanks enough for those caring for my loved ones, when I could not. These blessings continue to flow.
May God bless you on your journey.
Thursday, July 9, 2015
Ctrl + Alt + Del
Some of what I'm going through may be both confusing and vague. If you have no point of reference it can actually be incomprehensible to imagine what living with a brain injury is like. Many comparisons and similarities can be found to describe various aspects of the process. Computers are one of the few things that compare to the process.
In many ways my poor little brain operates much like an overloaded computer. It's like I have all these hidden programs trying to run along with my basic programing. When I say basic, I mean basic. Simple decisions such as determining time to eat; breakfast, lunch, and dinner. Determining what tools are needed to help change my sons diaper; diaper, wipes, butt cream. Reading clocks and determining time of day, digital is a must. One of these activities at a time can be too much and requires that I close my eyes and remove myself from noises or other distractions before being able to move on.
For my technical friends its like trying to download new programming when your hard drive is fried. (Yeah, that's not going to happen.) It's like my cooling fan has stopped working and we had to replace the hard drive. Now I am trying to reload data from external hard drives but the system will overheat with frustrating frequency.
To rest and remove my mind from the overwhelming data I have to "reset" my brain. This is easily done but takes awareness and time. Awareness of the point before I overheat, once I get there it's shot. And time to stop all processes; 3-5 minutes usually can do it. I must remove all visual and sound stimuli; close my eyes and find someplace quiet, this may mean plugging my ear(s). I cannot be required to supervise anything or make simple decisions during this time.
I sit, standing doesn't work. Close my eyes, and quiet my mind. In that space I begin what my speech therapist called Balloon Breathing. I imagine that my lungs and torso are a giant deflated balloon, I like to make mine red. I inhale through my nose as if trying to blow up the balloon as far as it will go. I hold at that point, then slowly, through my mouth, release the air in a controlled stream. I hold again. My breathing this way will continue until I feel the stress bleed away from my mind and I feel as if waking after a long and restful sleep.
Reset complete.
You are amazing and I love you. God loves you and you are ever in his care.
In many ways my poor little brain operates much like an overloaded computer. It's like I have all these hidden programs trying to run along with my basic programing. When I say basic, I mean basic. Simple decisions such as determining time to eat; breakfast, lunch, and dinner. Determining what tools are needed to help change my sons diaper; diaper, wipes, butt cream. Reading clocks and determining time of day, digital is a must. One of these activities at a time can be too much and requires that I close my eyes and remove myself from noises or other distractions before being able to move on.
For my technical friends its like trying to download new programming when your hard drive is fried. (Yeah, that's not going to happen.) It's like my cooling fan has stopped working and we had to replace the hard drive. Now I am trying to reload data from external hard drives but the system will overheat with frustrating frequency.
To rest and remove my mind from the overwhelming data I have to "reset" my brain. This is easily done but takes awareness and time. Awareness of the point before I overheat, once I get there it's shot. And time to stop all processes; 3-5 minutes usually can do it. I must remove all visual and sound stimuli; close my eyes and find someplace quiet, this may mean plugging my ear(s). I cannot be required to supervise anything or make simple decisions during this time.
I sit, standing doesn't work. Close my eyes, and quiet my mind. In that space I begin what my speech therapist called Balloon Breathing. I imagine that my lungs and torso are a giant deflated balloon, I like to make mine red. I inhale through my nose as if trying to blow up the balloon as far as it will go. I hold at that point, then slowly, through my mouth, release the air in a controlled stream. I hold again. My breathing this way will continue until I feel the stress bleed away from my mind and I feel as if waking after a long and restful sleep.
Reset complete.
You are amazing and I love you. God loves you and you are ever in his care.
Wednesday, July 8, 2015
Cake or Death
I love Eddy Izzard. If you have not yet enjoyed his comedic genius, then you are missing out. He is not for everyone but one of his skits has been brought to mind repeatedly as I have dealt with this challenge.
I am told, more frequently than I care to be, how great I am dealing with everything. When my husband hears these comments he responds with "It's not like we had much of a choice."
Hence my reference to Eddy Izzard and "Cake or Death." (I do have the video below but there is extensive use of profanity and references to some of the greatest tragedies experienced through our history. If you choose to watch, you have only yourself to blame.)
To summarize, he describes what world domination would look like if undertaken by the Church of England. Each person would be given the benign option of "Tea and Cakes or Death?" The response obviously "Cake, please." We feel in dealing with this situation it was "Surgery or Death?" Um, yeah "Surgery, please."
I spoke recently with a dear friend of mine in a similar struggle. When asked how she was dealing with the challenge she said, "Because we have to." We all have a cake or death moment when there is no choice but to buckle down and get through it. Don't worry, if you are feeling left out, your time will come. And we will be there.
All anyone can do is watch in wonder as you say "Cake, please." And we pray that in our time of challenge we will deal with it with as much grace.
I am told, more frequently than I care to be, how great I am dealing with everything. When my husband hears these comments he responds with "It's not like we had much of a choice."
Hence my reference to Eddy Izzard and "Cake or Death." (I do have the video below but there is extensive use of profanity and references to some of the greatest tragedies experienced through our history. If you choose to watch, you have only yourself to blame.)
To summarize, he describes what world domination would look like if undertaken by the Church of England. Each person would be given the benign option of "Tea and Cakes or Death?" The response obviously "Cake, please." We feel in dealing with this situation it was "Surgery or Death?" Um, yeah "Surgery, please."
I spoke recently with a dear friend of mine in a similar struggle. When asked how she was dealing with the challenge she said, "Because we have to." We all have a cake or death moment when there is no choice but to buckle down and get through it. Don't worry, if you are feeling left out, your time will come. And we will be there.
All anyone can do is watch in wonder as you say "Cake, please." And we pray that in our time of challenge we will deal with it with as much grace.
Moments
I have come to firmly believe that life is made up of moments. Tiny snippets of time sliced out of busy and distraction of real connection between individuals. Eye contact with my son at bath time. Meeting a long missed friend for lunch. The kiss and tender touch of a loved one. That is what I believe makes a "moment," the inclusion of emotion and allowing the circumstance to imprint itself on your life/mind/soul.
We believe that we impact the world, we are really here to allow it to impact us. It is through these times that we learn empathy, compassion, and service. These qualities enable us to move forward, facilitating "moments" with others.
Like water dropped into a pool it expands creating ripples and changing the surface of the world. The change does not begin with the world or with our acting upon the world. It begins when we allow the world to act and impact us. It gains in strength and magnitude when we then expand and impact others.
Allow it to change you. There are circumstances and situations right now working to act upon you, to create change. Be open to it. Allow the change to come and the ripples will flow, becoming ocean waves, sweeping pain, betrayal, and sin aside to allow the blood of Christ to wash over and heal you. To heal your loved ones. Be receptive. Be open to what God is trying to say to you specifically.
We believe that we impact the world, we are really here to allow it to impact us. It is through these times that we learn empathy, compassion, and service. These qualities enable us to move forward, facilitating "moments" with others.
Like water dropped into a pool it expands creating ripples and changing the surface of the world. The change does not begin with the world or with our acting upon the world. It begins when we allow the world to act and impact us. It gains in strength and magnitude when we then expand and impact others.
Allow it to change you. There are circumstances and situations right now working to act upon you, to create change. Be open to it. Allow the change to come and the ripples will flow, becoming ocean waves, sweeping pain, betrayal, and sin aside to allow the blood of Christ to wash over and heal you. To heal your loved ones. Be receptive. Be open to what God is trying to say to you specifically.
Normal
Of the three types of brain tumor, you want mine. Meningioma is the most common and statistically the least threatening of any brain tumor. Most are identified early and remain small, unobtrusive, not interfering with the function or form of the body. Most surgeons avoid cutting into the skull unless life or functionality is threatened. I know someone living with a meningioma for decades, few complications and yearly monitoring. Below are some things I have learned about meningioma and how blessed the path was to save my life.
- Most meningioma are harmless and patients require no other interventions other than annual monitoring. (Until the tumor begins to interfere with body and brain function.)
- Surgical removal is the preferred treatment for meningioma tumors. Skull-based meningioma are more difficult to remove surgically than many other types of brain tumor. Complete removal is ideal.
- Complete removal decreases the likelihood of the tumor regrowing; a possibility for most meningioma, especially within the first year after removal.
- Hospital stay following occipital craniotomy averages 2.2 days; 96% are elective surgeries, mine was not elective I stayed for 5 days. (see "Cake or Death")
- Of all surgeries 4% continue care to a rehab facility, unable to return home but no longer needing the intense services of the post operative nurses. Thanks to supportive family and friends, I was able to go home. (Part of my care restricts me from caring for my children alone or even driving.)
- In-patient mortality from the tumor/surgery (likelihood of death) was 0.9%. All fatalities were cases like mine where the tumor became invasive and the surgeons were unable to help the patient.
- Occupational Therapy, Physical Therapy and Speech therapy may all be included as aftercare for the patient to regain function. (I am lucky to experience all three; seriously they are great people and help me to keep perspective.)
- Full recovery for craniotomy tends to take up to two months; when asked about this my surgeon pointed out that that statistic is generally true for elective surgery. He stated that that is the recovery time for a post occipital craniotomy, I receive the added complication of trauma created by the tumor and its subsequent removal. (He got to poke around my brain tissue to access the tumor and ensure as complete a removal as possible.)
- Recurrence of tumor increases in likelihood unless there is a complete removal of the tumor. Follow-up MRIs are often ordered at three, six, and twelve month intervals by the surgeon as part of follow-up care. If the tumor does reoccur it will happen within the first year, it is often malignant.
The identification and treatment of my tumor was outside normal. We were looking for an infection, instead we found a large, but benign, tumor. Within 24 hours from that time, 56 hours from the time of any symptoms (I thought it was the flu), I was in surgery. Thanks to good medical providers and a plan directed by God, I am still alive.
In my case, I have come to accept that I am the odd man out. I am an outlier, outside of normal. So in the words of my surgeon..."Lets see what [I] can do."
Sources
www.surgeryencyclopedia.com
http://healthhub.brighamandwomens.org
Sources
www.surgeryencyclopedia.com
http://healthhub.brighamandwomens.org
You are amazing and I love you. God loves you and you are ever in his care.
Tuesday, July 7, 2015
Looking better, does not mean I'm better.
"You look great."
Best and worst words ever to a recovering patient. This is the line between actually looking like a functional person and being a functional person.
One of the hardest things to do right now is maintain an organized conversation that is continuous and makes sense. Naturally, that is what everyone is asking for at this point; insurance, disability, and even the office personnel at the doctors office. It's a neurological office, I just had brain surgery, explaining what that means to a very young intern is so frustrating.
"Can you answer some questions for me today?" (imagined head bop with ponytail bouncing.)
"No, I can't because I will speak in garbled English and incomplete sentences. Send me a letter, an email, even a text and that is loads easier. I can take my time, reread it as needed, and reference it when I get lost. Conversation, you have got to be kidding."
This is my imagined answer. My real response is along the lines of "What? Um, I guess I can try."
At this point I am starting to look like myself, my hair has grown to cover much of the scar. What I get are a lot of people confused why I don't have it together. The impatient sighs are audible when I attempt to interact in public. Pushing a shopping cart or parking close to the entrance, I often get irritated looks or even dirty stares. When alone, the only ones to make eye contact are also using assisted devices and the looks are along the lines of "You've got this, sister." We smile in sympathy as the rest of the world races by and then we move on with our day.
At one of my appointments I met another physically challenged person, about my age, his was a work accident. "Jim" has a fused back and it is difficult to walk. (I thank God, mine is neurological and I have hope for improvement.) He routinely gets dirty looks because he is now able to drive but must use handicap parking. Jim has been yelled at, talked to, and even lectured about how awful he is for using handicap parking. Jim looks normal, he has worked hard to get away from his walker and cane. What right do people have to judge that since he looks well he must be better?
I still use my walker for long distances or unfamiliar locations. I am still a fall risk. But I hope that as I work to move forward, you all will be patient. Looking better does not mean that things are all better.
Side note: You would not believe how long it takes me to edit each blog. Writing, I can talk about the things I deal with that others may not be able to express.
Best and worst words ever to a recovering patient. This is the line between actually looking like a functional person and being a functional person.
One of the hardest things to do right now is maintain an organized conversation that is continuous and makes sense. Naturally, that is what everyone is asking for at this point; insurance, disability, and even the office personnel at the doctors office. It's a neurological office, I just had brain surgery, explaining what that means to a very young intern is so frustrating.
"Can you answer some questions for me today?" (imagined head bop with ponytail bouncing.)
"No, I can't because I will speak in garbled English and incomplete sentences. Send me a letter, an email, even a text and that is loads easier. I can take my time, reread it as needed, and reference it when I get lost. Conversation, you have got to be kidding."
This is my imagined answer. My real response is along the lines of "What? Um, I guess I can try."
At this point I am starting to look like myself, my hair has grown to cover much of the scar. What I get are a lot of people confused why I don't have it together. The impatient sighs are audible when I attempt to interact in public. Pushing a shopping cart or parking close to the entrance, I often get irritated looks or even dirty stares. When alone, the only ones to make eye contact are also using assisted devices and the looks are along the lines of "You've got this, sister." We smile in sympathy as the rest of the world races by and then we move on with our day.
At one of my appointments I met another physically challenged person, about my age, his was a work accident. "Jim" has a fused back and it is difficult to walk. (I thank God, mine is neurological and I have hope for improvement.) He routinely gets dirty looks because he is now able to drive but must use handicap parking. Jim has been yelled at, talked to, and even lectured about how awful he is for using handicap parking. Jim looks normal, he has worked hard to get away from his walker and cane. What right do people have to judge that since he looks well he must be better?
I still use my walker for long distances or unfamiliar locations. I am still a fall risk. But I hope that as I work to move forward, you all will be patient. Looking better does not mean that things are all better.
Side note: You would not believe how long it takes me to edit each blog. Writing, I can talk about the things I deal with that others may not be able to express.
Friday, July 3, 2015
Bad Days
Dear God,
Today was good in a lot of ways. I was so overwhelmed/flooded/stretched, I just couldn't enjoy it.
What I was compared to what I am seems like so much is gone. After extensive reading and talking to workers in the field, I am what people hope for. (God, I can't take it.)
Sometimes the loss is so great. I want to pick up my son when he hurts and I can't. The sounds of my sons laughing and enjoying each other causes me to clench up as I deal with the onslaught of stimuli. To handle the swelling that comes in waves of pressure on my brain, lymph tissue, nerves and muscles; really there is no description that can illustrate the pain in areas of numbness and the phantom fleeting sense of loss that skitters through my mind. Breathe, it's all I can do. Balloon breathing into my belly to deepen the focus.
How do I keep this from hurting my babies? My family? My friends? Its not right that my limits should affect and change so much. I ache to do more but find in myself an actual inability to function past my present limits. I know what the doctors would say, relax and reset. Take time to heal. The pressure to help, to serve is internal. It's no one but who I am telling me I need to do more. My friends and family have been great, but I become flooded or taxed and I lock up. Not freeze, but relegated to the role of observer more than participant. I grieve for the loss and struggle to understand with a limited capacity how blessed I am, how good God has been, but I grieve.
God, how I miss being able to help. To lift my sick son and hold him. To visit and rejoice with friends without needing to retreat and draw back because its too much. To empty the bottom rack of the goddamn dishwasher without help. I was made to serve and now I am locked into limited abilities and any pushing endangers what I have been blessed to regain.
God, I don't need words of platitude. I think today I'm just going to grieve. I ache, and its ok. Tomorrow will be better, but it won't get better if I also don't admit that there are bad days.
Some days suck.
You are amazing and I love you. God loves you and you are ever in his care.
Today was good in a lot of ways. I was so overwhelmed/flooded/stretched, I just couldn't enjoy it.
What I was compared to what I am seems like so much is gone. After extensive reading and talking to workers in the field, I am what people hope for. (God, I can't take it.)
Sometimes the loss is so great. I want to pick up my son when he hurts and I can't. The sounds of my sons laughing and enjoying each other causes me to clench up as I deal with the onslaught of stimuli. To handle the swelling that comes in waves of pressure on my brain, lymph tissue, nerves and muscles; really there is no description that can illustrate the pain in areas of numbness and the phantom fleeting sense of loss that skitters through my mind. Breathe, it's all I can do. Balloon breathing into my belly to deepen the focus.
How do I keep this from hurting my babies? My family? My friends? Its not right that my limits should affect and change so much. I ache to do more but find in myself an actual inability to function past my present limits. I know what the doctors would say, relax and reset. Take time to heal. The pressure to help, to serve is internal. It's no one but who I am telling me I need to do more. My friends and family have been great, but I become flooded or taxed and I lock up. Not freeze, but relegated to the role of observer more than participant. I grieve for the loss and struggle to understand with a limited capacity how blessed I am, how good God has been, but I grieve.
God, how I miss being able to help. To lift my sick son and hold him. To visit and rejoice with friends without needing to retreat and draw back because its too much. To empty the bottom rack of the goddamn dishwasher without help. I was made to serve and now I am locked into limited abilities and any pushing endangers what I have been blessed to regain.
God, I don't need words of platitude. I think today I'm just going to grieve. I ache, and its ok. Tomorrow will be better, but it won't get better if I also don't admit that there are bad days.
Some days suck.
You are amazing and I love you. God loves you and you are ever in his care.
Wednesday, July 1, 2015
The Whole in my Bucket
"There's a hole in my bucket dear Liza, dear Liza. There's a hole in my bucket, dear Liza a hole."
The plan God has given for our lives offers many calls and responsibilities; some daily, some life endeavors. These calls for family focused work, proselytizing, avoiding temptations, correcting mistakes, etc. While each is a worthy call and requires our attention, it's overwhelming. Sometimes I am happy just making it through the day. Now it takes me even longer to attempt any of these tasks.
I have found that by using the opportunity to serve while I can, help when able, and not do more than I am capable of, this giant hole in my life seems less daunting to face. I can still help, I am still in here somewhere.
This is my first experience with any challenge of this magnitude. I have found one truth: people either are afraid to address your injury/illness or don't know how to separate you from the injury. This results in not being asked for help, or being asked to help in ways in which you are not capable. Both of which can leave a person feeling less than. No slight is intended but really, given the pain and sometimes medications people are on, there is not much ability to think past the initial "ouch" of exclusion. Here are my rules of engagement:
1. Don't pretend I'm not here. Any person with an obvious physical disability does not want you to pretend its not there. Don't avert your eyes. Don't pretend you can't see us, just don't only see the walker/wheelchair. Use the social skills you learned for any other person, look us in the eye, shake hands or hug as appropriate, ask us if we caught the new Marvel movie.
2. Use your words. If the injury is something that you fear may cause pain if we talk or hug or whatever, ask. We understand our limits and can tell you what limits we need. If you forget, because you are busy and have a million other things, ask again. We will not become offended, honestly we have so many things going on, we probably forgot we already told you.
3. Don't drag your kid away. I have had kids curious, fascinated, and confused by my walker. I have also had them dragged away by well meaning parents whispering harshly "don't stare", "that's rude" or other varieties in like manner. Congratulations for creating a fear response in your child when it was unnecessary. Instead try this, ask if its ok for your kid to ask questions. Then stay close to help them understand anything that may be confusing. Kids grasp things so much more easily than adults, I would love to see kids able to look past physical assist tools rather than be afraid of them.
4. Ask me how I can serve and help. I want to serve. I want to be included. I can't make a full meal, but I can bake brownies. I can't knock on doors but with time and planning can make phone calls or send emails.
Its simple, its basic. I am a whole person, not just a disability. It's ok to treat me like a whole person, because I am. I am all here. Me with a walker right now, that is whole for me. If I continue to need other assistance, yup still me. If my status deteriorates and I need more tools such as a wheelchair, you guessed it, still me.
We are each of us whole. Sometimes we have a hole in our bucket, but we are still a bucket. Holes do not change our bucket status. My disability does not make me less than, I'm just different than, learning new things. stick around and you might just learn something too.
The plan God has given for our lives offers many calls and responsibilities; some daily, some life endeavors. These calls for family focused work, proselytizing, avoiding temptations, correcting mistakes, etc. While each is a worthy call and requires our attention, it's overwhelming. Sometimes I am happy just making it through the day. Now it takes me even longer to attempt any of these tasks.
I have found that by using the opportunity to serve while I can, help when able, and not do more than I am capable of, this giant hole in my life seems less daunting to face. I can still help, I am still in here somewhere.
This is my first experience with any challenge of this magnitude. I have found one truth: people either are afraid to address your injury/illness or don't know how to separate you from the injury. This results in not being asked for help, or being asked to help in ways in which you are not capable. Both of which can leave a person feeling less than. No slight is intended but really, given the pain and sometimes medications people are on, there is not much ability to think past the initial "ouch" of exclusion. Here are my rules of engagement:
1. Don't pretend I'm not here. Any person with an obvious physical disability does not want you to pretend its not there. Don't avert your eyes. Don't pretend you can't see us, just don't only see the walker/wheelchair. Use the social skills you learned for any other person, look us in the eye, shake hands or hug as appropriate, ask us if we caught the new Marvel movie.
2. Use your words. If the injury is something that you fear may cause pain if we talk or hug or whatever, ask. We understand our limits and can tell you what limits we need. If you forget, because you are busy and have a million other things, ask again. We will not become offended, honestly we have so many things going on, we probably forgot we already told you.
3. Don't drag your kid away. I have had kids curious, fascinated, and confused by my walker. I have also had them dragged away by well meaning parents whispering harshly "don't stare", "that's rude" or other varieties in like manner. Congratulations for creating a fear response in your child when it was unnecessary. Instead try this, ask if its ok for your kid to ask questions. Then stay close to help them understand anything that may be confusing. Kids grasp things so much more easily than adults, I would love to see kids able to look past physical assist tools rather than be afraid of them.
4. Ask me how I can serve and help. I want to serve. I want to be included. I can't make a full meal, but I can bake brownies. I can't knock on doors but with time and planning can make phone calls or send emails.
Its simple, its basic. I am a whole person, not just a disability. It's ok to treat me like a whole person, because I am. I am all here. Me with a walker right now, that is whole for me. If I continue to need other assistance, yup still me. If my status deteriorates and I need more tools such as a wheelchair, you guessed it, still me.
We are each of us whole. Sometimes we have a hole in our bucket, but we are still a bucket. Holes do not change our bucket status. My disability does not make me less than, I'm just different than, learning new things. stick around and you might just learn something too.
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