Looking at the walls I’ve built up around myself, I see some contributing factors. One of those factors has come from not having friends visit me when I’m sick.
To date, I have been admitted to Loma Linda University Medical Center one hundred sixteen times. Over 100 occurred from ages 9-18. During those nine years, I never once had a classmate or friend visit me in the hospital; not once. I had my parents, siblings, bishops from my church, and a few church members visit me, but never a friend. Even as an adult the number of friends who've visited in the hospital has been very, very small.
When nobody visits--and I was blessed to have a family that did--when nobody calls or writes...let me tell you, it adds bricks to the wall we build around our emotions. When I came back to school or church from a long illness and people said, “I was so worried about you,” my first thought was, “Not worried enough to visit, call or write apparently.” Though there may be reasons for this--which I talk about in Section 17--it still hurts.
When a person's words of compassion are louder than their acts of compassion, resentment builds. You feel as though people don’t care; you believe their concerned expressions are just empty words; and you think, what's the point in sharing your life with anybody? When you hold the belief that there isn't anybody who sincerely cares about our well-being, it's difficult to open up and let in the people who do genuinely care.
Chronic illness forces you to be isolated for days, weeks, months or even years at a time. When this happens, you learn to do things for yourself and by yourself. You become use to the solitude and begin to emotionally withdraw yourself from others.
To parents who ask, "How can I help my child not build walls around their emotions?" My answer is--in addition to the things I talked about in Part two and three--encourage your child's friends and classmates to:
•visit your son/daughter in the hospital or at home;
•call your child on the phone if they can't visit;
•send cards or emotions that express their love;
•do something to let your child know they are missed.
Those simple acts of love can make a big difference.
Friday, July 26, 2013
SCD & Emotional Barriers #3: Apathy
There is a line in the movie about Jack Robinson, 42. The line is: "The word 'sympathy' comes from the Greek word 'suffer'. To sympathize with somebody means to suffer with somebody." It's a great quote from a great movie.
Sympathy is something that is taught. I give so much credit to my mother. I can’t recall all the times she said to me, “Try to put yourself in that person’s position,” or, “Try to imagine how that person feels.”
With the amount of pain and hospitalizations Sickle Cell patients experience, it can be very easy to become apathetic towards to the suffering of others. I credit my parents for my ability to recognize when another person is in pain and to have compassion for that pain.
It has always bothered me when somebody says to me, “I know my pain doesn’t compare to yours.” My thought is, “We all feel and cope with pain differently; and we all have our own trials in life.” I can’t allow myself to think my trial is so much greater than another individual's. I haven’t lived that person’s life; maybe what I consider to be a light amount of pain would be horrific for somebody else. Or perhaps they have mental or emotional pain far beyond what I endure. (For more on this, see Section 12).
I’m not saying I’m perfect in this area. There are times when I catch myself silently scoffing at somebody who is crying about something I would consider to be very minor. But I have to remind myself that I don’t know what’s going on in their life.
Having compassion for the suffering of another living being must be taught. When a child is continuously left to fend for themselves, left alone in a hospital bed, and is not shown compassion by loved ones, barriers build. The metaphorical skin becomes impossibly thick; the mind becomes hardened; and compassion is lost. It’s the responsibility of parents, grandparents, aunts, uncles, and loved ones to teach children how to be compassionate in spite of their own suffering.
There is an individual I know who, as a child, was never taught to think about how other people feel. Now, as an adult, this person is extremely self-centered. The only thing that matters is what he wants. He does not recognize the generosity of others; he does not appreciate what he has; and he does not seem to care about anybody but himself.
I can’t entirely blame this person for being the way he is. The compassion that was instilled in me from my youth was absent in his life. When our circumstances have caused us to steel ourselves against seeing other people’s misery, it’s hard to build deep emotional relationships other people.
Part of connecting with other people comes from wanting to love and be loved. In my mind, a compassionate heart is vital to building lasting relationships. If a child is not taught how to have that compassion...then it’s going to be extremely challenging for him/her to form meaningful bonds with others as an adult.
When your child with Sickle Cell is in the hospital, there will be many opportunities to teach her about having sympathy for the children around her. In spite of your child's suffering, seize upon those teaching opportunities. If your child is left alone, who will teach those vital lessons?
Sympathy is something that is taught. I give so much credit to my mother. I can’t recall all the times she said to me, “Try to put yourself in that person’s position,” or, “Try to imagine how that person feels.”
With the amount of pain and hospitalizations Sickle Cell patients experience, it can be very easy to become apathetic towards to the suffering of others. I credit my parents for my ability to recognize when another person is in pain and to have compassion for that pain.
It has always bothered me when somebody says to me, “I know my pain doesn’t compare to yours.” My thought is, “We all feel and cope with pain differently; and we all have our own trials in life.” I can’t allow myself to think my trial is so much greater than another individual's. I haven’t lived that person’s life; maybe what I consider to be a light amount of pain would be horrific for somebody else. Or perhaps they have mental or emotional pain far beyond what I endure. (For more on this, see Section 12).
I’m not saying I’m perfect in this area. There are times when I catch myself silently scoffing at somebody who is crying about something I would consider to be very minor. But I have to remind myself that I don’t know what’s going on in their life.
Having compassion for the suffering of another living being must be taught. When a child is continuously left to fend for themselves, left alone in a hospital bed, and is not shown compassion by loved ones, barriers build. The metaphorical skin becomes impossibly thick; the mind becomes hardened; and compassion is lost. It’s the responsibility of parents, grandparents, aunts, uncles, and loved ones to teach children how to be compassionate in spite of their own suffering.
There is an individual I know who, as a child, was never taught to think about how other people feel. Now, as an adult, this person is extremely self-centered. The only thing that matters is what he wants. He does not recognize the generosity of others; he does not appreciate what he has; and he does not seem to care about anybody but himself.
I can’t entirely blame this person for being the way he is. The compassion that was instilled in me from my youth was absent in his life. When our circumstances have caused us to steel ourselves against seeing other people’s misery, it’s hard to build deep emotional relationships other people.
Part of connecting with other people comes from wanting to love and be loved. In my mind, a compassionate heart is vital to building lasting relationships. If a child is not taught how to have that compassion...then it’s going to be extremely challenging for him/her to form meaningful bonds with others as an adult.
When your child with Sickle Cell is in the hospital, there will be many opportunities to teach her about having sympathy for the children around her. In spite of your child's suffering, seize upon those teaching opportunities. If your child is left alone, who will teach those vital lessons?
SCD & Emotional Barriers #2: Being Alone
One of the BIGGEST things that can cause a person to build emotional barriers around themselves stems from being left alone in a hospital as a child.
A hospital bed is a scary and lonely place. I was at church one day when a man was talking about his recent hospital experience. He said, “I’ve never felt more alone and isolated than I did when I was in the hospital by myself.” If a big, two hundred pound burly man admits how alone he felt in a hospital bed, then try to imagine how much more so that would be for a child. And trust me, it is a sad and lonely place to spend much of your life in; speaking as a patient.
After I had a massive stroke at the age of nine, I began receiving monthly blood transfusions. Every six weeks I was admitted to the hospital for 2-3 days. Until I reached the age of about twelve or thirteen, one of my parents stayed with me all through the night and most of the day. My mom would stay with me at the hospital during the day. Then when my father got off work, they would switch and my dad stayed with me all through the night. If I was alone it was only for a few hours at a time. My younger sister Kimi was a severely handicapped and full-care child. So it wasn’t an easy task to make sure that one of my parents was with me in the hospital as much as possible.
This was in stark contrast to what I saw from the families of many other children whom I shared a hospital room with. At that very young age I was acutely aware that many of the children were seldom visited. For some of these other kids, two, three or more days would pass before anybody would visit them; and often the visit was very brief.
I vividly recall one infant. I think I was ten years old. For the entire duration of my week long stay, nobody ever came to see or hold this baby. It laid in it’s crib, nearly motionless, entirely unloved. Though I was very young, I was emotionally impacted by that; and it’s something that still haunts me. I've often wondered what became of that baby.
When a child is left unattended in a hospital, things can happen. Some nurses can behave one way around parents and very differently in their absence. Young ambitious doctors can be too eager and aggressive in how they treat a patient. Two examples come to mind.
The first occurred when I was around ten years old. I don’t recall why, but the doctors needed to perform a spinal tap on me. I think my dad was with me during the tap, but had to leave for work immediately after. My mom would take her shift once she got my sister off to school.
After the spinal tap was over, the doctors told me not to move around too much for at least forty-five minutes or it could injure my spine. Later my mom showed up. When she saw me sitting nearly motionless in the bed serious faced, she asked what was wrong. “The doctor’s told me not to move for forty-five minutes,” I said.
“What time was that?” she asked. I told her what time the spinal tap was over with. “Jon! That was three hours ago!”
“I know. I was scared to move.”
In the words of my mother, “That is a good example of why a parent needs to be present.” Imagine if my mother hadn’t come that day. That fear I felt for three hours could have lasted far longer had she not been there.
When a child is continuously being poked with needles, prodded by doctors, and sometimes mistreated by apathetic nurses, and there isn’t a loved one present to provide love, comfort, and reassurance...emotional barriers build. Without the presence of somebody who is emotionally invested in the child’s well-being, that child feels:
• A gaping pit of loneliness within their breast;
• As though nobody cares whether they live or die;
• Afraid of what could, and is happening;
• Depression unlike any other.
Parents, if you have a child in the hospital, please, please be there as much as you possibly can. And if you cannot be there, make sure somebody the child loves and trusts is. Yes, there will be minutes and hours when your child is alone; that can’t be helped and is fine. What isn’t fine, what will have lasting negative consequences to your child's psyche is when he/she is left alone in a hospital bed far more than having a loved one present. It's my belief that a child who is left alone will become a lonely adult.
A hospital bed is a scary and lonely place. I was at church one day when a man was talking about his recent hospital experience. He said, “I’ve never felt more alone and isolated than I did when I was in the hospital by myself.” If a big, two hundred pound burly man admits how alone he felt in a hospital bed, then try to imagine how much more so that would be for a child. And trust me, it is a sad and lonely place to spend much of your life in; speaking as a patient.
After I had a massive stroke at the age of nine, I began receiving monthly blood transfusions. Every six weeks I was admitted to the hospital for 2-3 days. Until I reached the age of about twelve or thirteen, one of my parents stayed with me all through the night and most of the day. My mom would stay with me at the hospital during the day. Then when my father got off work, they would switch and my dad stayed with me all through the night. If I was alone it was only for a few hours at a time. My younger sister Kimi was a severely handicapped and full-care child. So it wasn’t an easy task to make sure that one of my parents was with me in the hospital as much as possible.
This was in stark contrast to what I saw from the families of many other children whom I shared a hospital room with. At that very young age I was acutely aware that many of the children were seldom visited. For some of these other kids, two, three or more days would pass before anybody would visit them; and often the visit was very brief.
I vividly recall one infant. I think I was ten years old. For the entire duration of my week long stay, nobody ever came to see or hold this baby. It laid in it’s crib, nearly motionless, entirely unloved. Though I was very young, I was emotionally impacted by that; and it’s something that still haunts me. I've often wondered what became of that baby.
When a child is left unattended in a hospital, things can happen. Some nurses can behave one way around parents and very differently in their absence. Young ambitious doctors can be too eager and aggressive in how they treat a patient. Two examples come to mind.
The first occurred when I was around ten years old. I don’t recall why, but the doctors needed to perform a spinal tap on me. I think my dad was with me during the tap, but had to leave for work immediately after. My mom would take her shift once she got my sister off to school.
After the spinal tap was over, the doctors told me not to move around too much for at least forty-five minutes or it could injure my spine. Later my mom showed up. When she saw me sitting nearly motionless in the bed serious faced, she asked what was wrong. “The doctor’s told me not to move for forty-five minutes,” I said.
“What time was that?” she asked. I told her what time the spinal tap was over with. “Jon! That was three hours ago!”
“I know. I was scared to move.”
In the words of my mother, “That is a good example of why a parent needs to be present.” Imagine if my mother hadn’t come that day. That fear I felt for three hours could have lasted far longer had she not been there.
When a child is continuously being poked with needles, prodded by doctors, and sometimes mistreated by apathetic nurses, and there isn’t a loved one present to provide love, comfort, and reassurance...emotional barriers build. Without the presence of somebody who is emotionally invested in the child’s well-being, that child feels:
• A gaping pit of loneliness within their breast;
• As though nobody cares whether they live or die;
• Afraid of what could, and is happening;
• Depression unlike any other.
Parents, if you have a child in the hospital, please, please be there as much as you possibly can. And if you cannot be there, make sure somebody the child loves and trusts is. Yes, there will be minutes and hours when your child is alone; that can’t be helped and is fine. What isn’t fine, what will have lasting negative consequences to your child's psyche is when he/she is left alone in a hospital bed far more than having a loved one present. It's my belief that a child who is left alone will become a lonely adult.
SCD & Emotional Barriers #1 - Intro
Last week on the facebook page Sickle Cell Warriors, I posted the following question:
“I’ve learned, through a lifetime of Sickle Cell pain, how to disconnect myself from that pain to a large degree. In some ways I feel as though I have applied that ability to emotional pain. Does anyone else feel as though Sickle Cell has caused you to put an emotional barrier, thus making it difficult to connect with others?”
I was very surprised by the response; I received more than a hundred likes and nearly forty comments in less than twenty-four hours. Every single person who wrote a reply felt as I did. The emotional struggle of living with Sickle Cell—or any chronic illness for that matter—has far more reaching consequences than we sometimes realize.
One young man said he has a hard time asking girls out on dates because he feels he can’t get close to them. One woman wrote, when she has to go to the ER, she tells her family to leave her at the door and go home; when coping with pain, it’s too difficult for her to have family around. Some feel they receive little or no sympathy from loved ones, which naturally builds walls around those relationships.
From a lifetime of complications, pain, and hospitalizations, some have difficulty recognizing or having sympathy for other people’s pain. Because no one understands their situation, some feel as though people won’t/can’t love them enough to stick by them during the hard times.
One woman wrote, “As a mother of a child with Sickle cell, is there something I can do to prevent him from developing that wall? What could your parents have done differently?”
As I’ve thought about this subject, I realize I can’t briefly answer this in one post. I think it best to break the topic up into several smaller ones. I feel this topic is a very important one and I want to come at it from a few different angles.
“I’ve learned, through a lifetime of Sickle Cell pain, how to disconnect myself from that pain to a large degree. In some ways I feel as though I have applied that ability to emotional pain. Does anyone else feel as though Sickle Cell has caused you to put an emotional barrier, thus making it difficult to connect with others?”
I was very surprised by the response; I received more than a hundred likes and nearly forty comments in less than twenty-four hours. Every single person who wrote a reply felt as I did. The emotional struggle of living with Sickle Cell—or any chronic illness for that matter—has far more reaching consequences than we sometimes realize.
One young man said he has a hard time asking girls out on dates because he feels he can’t get close to them. One woman wrote, when she has to go to the ER, she tells her family to leave her at the door and go home; when coping with pain, it’s too difficult for her to have family around. Some feel they receive little or no sympathy from loved ones, which naturally builds walls around those relationships.
From a lifetime of complications, pain, and hospitalizations, some have difficulty recognizing or having sympathy for other people’s pain. Because no one understands their situation, some feel as though people won’t/can’t love them enough to stick by them during the hard times.
One woman wrote, “As a mother of a child with Sickle cell, is there something I can do to prevent him from developing that wall? What could your parents have done differently?”
As I’ve thought about this subject, I realize I can’t briefly answer this in one post. I think it best to break the topic up into several smaller ones. I feel this topic is a very important one and I want to come at it from a few different angles.
Thursday, July 18, 2013
Friendship and Sickle Cell Disease
I was thinking of a recent experience, which is not at all a unique one. When I learned that I would be unable to have my hip replacement surgeries, I naturally sought comfort from loved ones. I was gravely disappointed when I went to one individual’s house. I spent three minutes talking about what I was dealing with and listened for fifteen minutes about something else entirely unrelated, at which point the topic was totally changed. Needless to say I gave up trying to talk about my situation with them.
The second individual I tried to speak with was also a let down. I spoke to them for five minutes about my news, and that was all I got out. Rather than just listening to what I needed to express, I had to listen to what he wanted to express to me.
I spoke of a similar topic in the section 17) About Friends and Family. Often, when a person hears about your latest tribulation, they simply don’t know what to say. Because they don’t know what to say, they may: 1) avoid you until the event is over; 2) avoid talking about the subject entirely; or 3) simply say nothing at all. It’s not because they don’t care, it’s because they don’t know what to say.
If you are a friend or family member of a person living with a chronic or terminal illness, please understand. Understand that your loved one is struggling to come to terms with this new crisis in their life; and when they finally choose to share it with you for the first time, understand that all your loved one wants is for you to listen. You don’t need to offer solutions; you don’t need to search for ways to fix the problem at that point; and you ought not change the subject so you don’t have to hear what’s on their mind.
What your loved one wants/needs from you is a compassionate heart and an ear willing to listen. That’s it. Just listen. You don’t have to give advice; you don’t have to say anything profound or wise. All you have to do is listen. I know from a multitude of personal experiences how extremely disheartening it is when those you most rely upon cannot provide this. I also know from personal experience how profoundly comforting it is when loved ones do provide this.
Please, be sensitive to your loved one’s needs. Please, don’t be afraid to be silent. And to those suffering through difficult trials, please be patient with the shortcomings of others.
The second individual I tried to speak with was also a let down. I spoke to them for five minutes about my news, and that was all I got out. Rather than just listening to what I needed to express, I had to listen to what he wanted to express to me.
I spoke of a similar topic in the section 17) About Friends and Family. Often, when a person hears about your latest tribulation, they simply don’t know what to say. Because they don’t know what to say, they may: 1) avoid you until the event is over; 2) avoid talking about the subject entirely; or 3) simply say nothing at all. It’s not because they don’t care, it’s because they don’t know what to say.
If you are a friend or family member of a person living with a chronic or terminal illness, please understand. Understand that your loved one is struggling to come to terms with this new crisis in their life; and when they finally choose to share it with you for the first time, understand that all your loved one wants is for you to listen. You don’t need to offer solutions; you don’t need to search for ways to fix the problem at that point; and you ought not change the subject so you don’t have to hear what’s on their mind.
What your loved one wants/needs from you is a compassionate heart and an ear willing to listen. That’s it. Just listen. You don’t have to give advice; you don’t have to say anything profound or wise. All you have to do is listen. I know from a multitude of personal experiences how extremely disheartening it is when those you most rely upon cannot provide this. I also know from personal experience how profoundly comforting it is when loved ones do provide this.
Please, be sensitive to your loved one’s needs. Please, don’t be afraid to be silent. And to those suffering through difficult trials, please be patient with the shortcomings of others.
Sunday, July 14, 2013
Emotional Effects of Sickle Cell
Most of what I share is of a personal nature, but this is a bit more so. I feel as though, in some ways, I have suffered a lot of loss in my life: I’ve lost a great many close personal friendships to betrayal, disagreements, and other kinds of fallout; I’ve lost my wife and daughter in a divorce; and I lost a sister who now dwells with God. As a result of these many lost relationships, I have created an emotional barrier around myself; or in Star Trek terms, I raised shields.
I have come to realize that I haven’t allowed myself to make an emotional connection with anybody for a very long time. I am of course close to family and certain friends. However, with most people, there is a depth of emotion that I am not allowing myself to make with others in the way I once did.
I was speaking to a couple of my friends the other day about this--they are a married couple--and one of them made an observation that really stuck with me. Her comment was basically this: “All your life you have endured a great amount of physical pain as a result of living with Sickle Cell Anemia. As a coping strategy, you’ve learned how to disconnect yourself from your physical pain; you’ve had to in order to endure the pain. It’s not a stretch to think that you have applied that to other areas of your life.”
I’ve had several days to think about that, and as I’ve pondered her words, I realized that she is 100% correct. I have learned to cope with all sorts of pain--be it physical, mental, emotional, or spiritual—by disconnecting myself from it. I want to emotionally connect with people in a deeper way than what I have been allowing myself to do. Coming to this realization is a good first step.
One of my reasons for sharing this is help shed some light on an invisible complication of Sickle Cell. Living with this illness, we endure levels of pain that are unimaginable to most people. To endure that pain, and how it impacts our life, we all find our own ways of coping with it. The pain we endure not only impacts our physical body, but our state of mind as well. My point is, if I have learned to disconnect myself from my emotional pain the same way I do my physical pain, then I am betting there are others out there who have done, and are doing, the same thing. I hope by sharing this realization with you, it will cause you to look inside yourself and ask, “Am I also doing this?”
My second reason for sharing this is directed toward people who do not live with Sickle Cell. Awareness. Awareness. Awareness. People need to be aware that Sickle Cell doesn’t just affect our body, but also our emotions, our relationships, and how we interact with others. Sickle Cell Anemia impacts us psychologically more than we sometimes realizes; and I also think that often goes unaddressed and underestimated by others.
It’s important for us to take time to introspect, to ponder the ways our illness emotionally influences us in negative and positive ways. I personally am trying to look within myself and see how I can improve upon myself, upon the relationships I have, and improve upon the relationships I want to have with others. I encourage you, my readers, to do likewise.
I have come to realize that I haven’t allowed myself to make an emotional connection with anybody for a very long time. I am of course close to family and certain friends. However, with most people, there is a depth of emotion that I am not allowing myself to make with others in the way I once did.
I was speaking to a couple of my friends the other day about this--they are a married couple--and one of them made an observation that really stuck with me. Her comment was basically this: “All your life you have endured a great amount of physical pain as a result of living with Sickle Cell Anemia. As a coping strategy, you’ve learned how to disconnect yourself from your physical pain; you’ve had to in order to endure the pain. It’s not a stretch to think that you have applied that to other areas of your life.”
I’ve had several days to think about that, and as I’ve pondered her words, I realized that she is 100% correct. I have learned to cope with all sorts of pain--be it physical, mental, emotional, or spiritual—by disconnecting myself from it. I want to emotionally connect with people in a deeper way than what I have been allowing myself to do. Coming to this realization is a good first step.
One of my reasons for sharing this is help shed some light on an invisible complication of Sickle Cell. Living with this illness, we endure levels of pain that are unimaginable to most people. To endure that pain, and how it impacts our life, we all find our own ways of coping with it. The pain we endure not only impacts our physical body, but our state of mind as well. My point is, if I have learned to disconnect myself from my emotional pain the same way I do my physical pain, then I am betting there are others out there who have done, and are doing, the same thing. I hope by sharing this realization with you, it will cause you to look inside yourself and ask, “Am I also doing this?”
My second reason for sharing this is directed toward people who do not live with Sickle Cell. Awareness. Awareness. Awareness. People need to be aware that Sickle Cell doesn’t just affect our body, but also our emotions, our relationships, and how we interact with others. Sickle Cell Anemia impacts us psychologically more than we sometimes realizes; and I also think that often goes unaddressed and underestimated by others.
It’s important for us to take time to introspect, to ponder the ways our illness emotionally influences us in negative and positive ways. I personally am trying to look within myself and see how I can improve upon myself, upon the relationships I have, and improve upon the relationships I want to have with others. I encourage you, my readers, to do likewise.
Saturday, July 6, 2013
40th Birthday with Sickle Cell
The post for the week is short and sweet; I am 40 years old! That's crazy; but in an entirely wonderful way. What a blessing it is to be alive!
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