I hate storms like these,
When the seconds pass like hours;
When the minutes drip like molasses;
When what felt like a winter’s slumber,
Was nothing more than a quarter rotation on the face of the clock;
When the pain slows every motion to a snail’s pace;
When the trio of analgesics dims the mind,
Bringing the gears of cognition to a grind;
When there’s nothing to do with the whole body discomfort,
But suffer through it.
The dense black clouds that are my sickle cells,
Give birth to the invisible firestorm;
The hurricane inside my frame.
Like a web of electricity, lightning strikes my entire acreage;
Streaking just under skin’s surface looking for escape, but unable to.
It's an unending echo rolling near, far and returning again, and again.
I hate storms like these,
When the seconds pass like hours.
Monday, December 31, 2012
"Week Three" - September 7, 2012
Yesterday marked week three, of my current pain crisis spree.
There’s discomfort in my chest, back, hands and knees,
Thankfully, though, there’s none when I pee.
My patience the pain too often tests me,
Though I know it can do likewise to my family.
There’s discomfort in my chest, back, hands and knees,
Thankfully, though, there’s none when I pee.
My patience the pain too often tests me,
Though I know it can do likewise to my family.
"Blasted Air!" - May 31, 2009
The trembling of my knees,
With the clattering of teeth;
Goose pimples on arms,
Body trembling like a leaf.
With the air conditioner blowing
Sending out an artificial chill,
Always sends me running
For my bottle of pain pills.
When you're born with Sickle Cell,
The cold is a freezing hell.
With the clattering of teeth;
Goose pimples on arms,
Body trembling like a leaf.
With the air conditioner blowing
Sending out an artificial chill,
Always sends me running
For my bottle of pain pills.
When you're born with Sickle Cell,
The cold is a freezing hell.
"Bane" - May 28, 2009
I don’t want to be vain
when I speak of my bane
that is my daily chronic pain
causing aching in my veins
steady as a train
like the pouring down of rain
going against the grain
driving me insane
an ever constant strain
putting me off my game
making me feel lame
everyday is the same
sadly very tame
maddening mundane
because I don’t have a dame.
Maybe it’s time to give my pang a name
so I can flush it down the drain
to be rid of it’s stain
and freed from these chains.
I’d be happy if tomorrow the resurrection came
where immortality reigns
and the glory of celestial flames
forever removes pain from my brain.
when I speak of my bane
that is my daily chronic pain
causing aching in my veins
steady as a train
like the pouring down of rain
going against the grain
driving me insane
an ever constant strain
putting me off my game
making me feel lame
everyday is the same
sadly very tame
maddening mundane
because I don’t have a dame.
Maybe it’s time to give my pang a name
so I can flush it down the drain
to be rid of it’s stain
and freed from these chains.
I’d be happy if tomorrow the resurrection came
where immortality reigns
and the glory of celestial flames
forever removes pain from my brain.
Sunday, December 23, 2012
"Chasm Filled" - August 12, 2006
The empty chasm within now is filled;
The void of space, no longer chilled.
The devouring snarling beast has been tamed,
Though my daily life is relatively the same.
The canyon whose mouth was opened so wide,
Is filled with serenity, bottom to top side.
The darkness thought near my consuming,
Is replaced with light and peace that's ever looming.
No longer is enduring to the end a sentimental joke.
The wanting of self-destruction replaced with brightness of hope.
I find within the past several years,
Authentic laughter has replaced the silent tears.
I give thanks to my Father which guides from above,
Who has sent me peace that fits snugly as a tailored glove.
Through the pain and anguish in my heart,
I feel an unprecedented joy I pray will never part.
For the first time in recollection, I thank God for my life,
Feeling freed from pretense, sarcasm and my fearsome inner strife.
The void of space, no longer chilled.
The devouring snarling beast has been tamed,
Though my daily life is relatively the same.
The canyon whose mouth was opened so wide,
Is filled with serenity, bottom to top side.
The darkness thought near my consuming,
Is replaced with light and peace that's ever looming.
No longer is enduring to the end a sentimental joke.
The wanting of self-destruction replaced with brightness of hope.
I find within the past several years,
Authentic laughter has replaced the silent tears.
I give thanks to my Father which guides from above,
Who has sent me peace that fits snugly as a tailored glove.
Through the pain and anguish in my heart,
I feel an unprecedented joy I pray will never part.
For the first time in recollection, I thank God for my life,
Feeling freed from pretense, sarcasm and my fearsome inner strife.
"Serenity Now" - July 31, 2006
I use to write of the sadness and anger that raged in me,
Telling of the hurt and pain explicitly.
Anguish, sorrow, torment, and tears,
Is all I knew for too many years.
Gloom, depression, despondency too,
This is all I wrote, this is all I knew.
I spoke of darkness, fire, and the raging of a beast,
All describing the torment which my soul did feast.
In so many years of recent past,
Friendships and loves all died too fast.
Again alone, little has changed,
But it’s the thoughts within that have been rearranged.
Peace serenity, and a quietness is stilled;
Contentment, love with enrichment I am filled.
Tranquility of mind and permeating joy,
Completion and satisfaction are now my employ.
The pain, the anger, yes even the hate,
No longer I feel charging at my gate.
I’m grateful for the trials that have brought this to life,
Because gone now is the hurt, pain, confusion and the strife.
Telling of the hurt and pain explicitly.
Anguish, sorrow, torment, and tears,
Is all I knew for too many years.
Gloom, depression, despondency too,
This is all I wrote, this is all I knew.
I spoke of darkness, fire, and the raging of a beast,
All describing the torment which my soul did feast.
In so many years of recent past,
Friendships and loves all died too fast.
Again alone, little has changed,
But it’s the thoughts within that have been rearranged.
Peace serenity, and a quietness is stilled;
Contentment, love with enrichment I am filled.
Tranquility of mind and permeating joy,
Completion and satisfaction are now my employ.
The pain, the anger, yes even the hate,
No longer I feel charging at my gate.
I’m grateful for the trials that have brought this to life,
Because gone now is the hurt, pain, confusion and the strife.
Sunday, December 9, 2012
Don't Be Offended
Now that you’ve decided that letting people know you have Sickle Cell Disease isn’t something to be ashamed of, you might wonder how to talk with people about it. First, understand your friends and family care about you. It’s natural for them to be curious about your health and ask questions. Learning to speak with others about your illness plays a big roll in learning to live with it.
When talking with others about your health, make the choice to not be offended by people’s natural curiosity. Below is a list of the four questions I’m most often asked about Sickle Cell, and how I personally answer them. I could easily choose to be offended by the boldness of some individuals and the questions they ask. Instead, I use that opportunity to educate. As you read this section, think about how you would answer these same questions if and when you’re asked.
When talking with others about your health, make the choice to not be offended by people’s natural curiosity. Below is a list of the four questions I’m most often asked about Sickle Cell, and how I personally answer them. I could easily choose to be offended by the boldness of some individuals and the questions they ask. Instead, I use that opportunity to educate. As you read this section, think about how you would answer these same questions if and when you’re asked.
“How Does Sickle Cell Anemia Affect Your Life?”
This is probably the number one question I’m asked. It’s a little bit like asking the Earth, “How does the Sun affect you?” The answer is of course, “In every way.” In answering this question, I detail some of ways in which Sickle Cell impacts my body and life as a whole. The truth is, unless the person does have, or has had, some kind of illness themselves, they won’t be able to fully identify with what you endure. However, just because somebody can’t 100% relate to what you are going through, it doesn’t mean they can’t be supportive. The companionship of a caring friend can be of great comfort.
"What Treatments Are Available?"
Though I explain treatments such as blood transfusions and various medications help in a variety of ways, for me, preventive medicine is the best treatment. Learning to manage my disease and knowing my limits are generally what keeps me out of the hospital. This is one of my highest priorities in life, doing everything I can to keep myself as healthy as possible: mind, body, and spirit.
"Is There a Cure?"
Currently, there is not a blanket cure available to every single man, woman, and child who lives with Sickle Cell. However, for those who meet the requirements, there is an 85% cure rate for patients that have a bone marrow transplant from a direct sibling who doesn’t have Sickle Cell. A direct sibling means, a brother or sister who has the same mom and dad as you. They can‘t be half-brothers or sisters.
Bone marrow is basically the red blood cell factory of the body. It’s the soft chewy center of the bone where red blood cells are made (I was joking about the chewy part). When a transplant occurs, a certain amount of stem cells—which are immature cells—are withdrawn from the bone marrow of a healthy donor; these cells are usually taken from the hip or harvested from the donor’s blood. . The patient receiving the donor stem cells does so intravenously, much like a blood transfusion. If it’s successful, the patient’s bone marrow essentially resets, allowing their body to produce healthy red blood cells. Simply stated, the factory where the Sickle Cell patient’s bloods cells are produced gets a new operating system. This is an oversimplification of a very complex medical procedure, but you get the idea.
Though there is an 85% cure rate in bone marrow transplant treatment in Sickle Cell patients, there is a 5% chance that it can result in the death of the patient. The remaining 10% survive without the treatment being successful. Due to the risks involved, there are many requirements for the procedure. The patient cannot have any damage to their major organs; they must be under seventeen years old; live with the more severe form of Sickle Cell; and they must have a sibling able to donate bone marrow. All of these requirements make bone marrow transplant a possibility for a very small percentage of patients.
In recent years, there have been successful bone marrow transplants from donors that were not at all related to the Sickle Cell patient. Currently advancements are being made in bone marrow transplants that will make the procedure available to adults as well as youth. Additional research with stem cells is also opening doors to potential treatments and cures.
Dr. Broyles, the founder of the Sickle Cell Cure Foundation Inc., is a researcher whose making very exciting progress toward an inexpensive non-surgical cure for all Sickle Cell patients through what he calls gene regulation therapy. By injecting a protein into the bloodstream, Dr. Broyles believes his treatment will turn off the Sickle Cell gene and turn on the fetal hemoglobin gene; the gene that protects infants and fetuses in their mother’s womb from suffering the affects of Sickle Cell. The foundation is working towards having clinical trials and expect the treatment to be available in the near future. More information about this can be found on his website at www.sicklecellcurefoundation.org.
Personally, I’m very hopeful about future developments toward curing Sickle Cell Disease. Though limited, there is a cure today. This was but dream only thirty years ago. Living with the belief that a cure for all will come in our lifetime, is an important one to have. Maintain that hope.
Bone marrow is basically the red blood cell factory of the body. It’s the soft chewy center of the bone where red blood cells are made (I was joking about the chewy part). When a transplant occurs, a certain amount of stem cells—which are immature cells—are withdrawn from the bone marrow of a healthy donor; these cells are usually taken from the hip or harvested from the donor’s blood. . The patient receiving the donor stem cells does so intravenously, much like a blood transfusion. If it’s successful, the patient’s bone marrow essentially resets, allowing their body to produce healthy red blood cells. Simply stated, the factory where the Sickle Cell patient’s bloods cells are produced gets a new operating system. This is an oversimplification of a very complex medical procedure, but you get the idea.
Though there is an 85% cure rate in bone marrow transplant treatment in Sickle Cell patients, there is a 5% chance that it can result in the death of the patient. The remaining 10% survive without the treatment being successful. Due to the risks involved, there are many requirements for the procedure. The patient cannot have any damage to their major organs; they must be under seventeen years old; live with the more severe form of Sickle Cell; and they must have a sibling able to donate bone marrow. All of these requirements make bone marrow transplant a possibility for a very small percentage of patients.
In recent years, there have been successful bone marrow transplants from donors that were not at all related to the Sickle Cell patient. Currently advancements are being made in bone marrow transplants that will make the procedure available to adults as well as youth. Additional research with stem cells is also opening doors to potential treatments and cures.
Dr. Broyles, the founder of the Sickle Cell Cure Foundation Inc., is a researcher whose making very exciting progress toward an inexpensive non-surgical cure for all Sickle Cell patients through what he calls gene regulation therapy. By injecting a protein into the bloodstream, Dr. Broyles believes his treatment will turn off the Sickle Cell gene and turn on the fetal hemoglobin gene; the gene that protects infants and fetuses in their mother’s womb from suffering the affects of Sickle Cell. The foundation is working towards having clinical trials and expect the treatment to be available in the near future. More information about this can be found on his website at www.sicklecellcurefoundation.org.
Personally, I’m very hopeful about future developments toward curing Sickle Cell Disease. Though limited, there is a cure today. This was but dream only thirty years ago. Living with the belief that a cure for all will come in our lifetime, is an important one to have. Maintain that hope.
“How Long Do People with Sickle Cell Live?”
This last question is one I am generally asked by people who are either particularly close to me or especially outgoing. It’s a topic I’m comfortable talking about and it doesn’t bother me when asked the question. It would be easy to be sarcastic and say, “I don’t know, how long are you going to live?” But sarcasm doesn’t help educate people.
When I was born in 1973—back when I had to walk up hill both ways, in three feet of snow, barefoot, and with nothing to wear but a potato sack—children born with Sickle Cell Anemia in the United States generally lived to be seven to twelve years old. As I have grown up, I’ve watched as that young age increased to be twenty years old, then thirty years old, and up to where it is today, forty to sixty years old. What a joy it is to know, if I live responsibly and take care of my health, that I could live nearly a full life!
If you do an Internet search of, “oldest living person with Sickle Cell Disease,” you will find some inspiring information. In the United States there is a woman who is eighty-five years old; in Nigeria there are references about an eighty-seven year old woman; both are living with Sickle Cell Disease. I have to admit, the first time I read the article about a woman in her eighties who’s living with Sickle Cell, it blew my mind. Think of the hope the life of those two women bring to everyone living with our illness.
Currently I am thirty-nine years old. When I was a child, I never dreamed I‘d live to be the age I am. In this case, what a delight it has been to be wrong, and how thrilling it is to think I could live another fifty years. Living with Sickle Cell Anemia is hard, there’s no doubt about that. Admittedly, there are moments when the complications and pain of Sickle Cell cause me to want to leave this life and cross over to the next; but those are moments, and they pass. Believe me when I say, there is joy greater than the pain you endure. Life is worth living.
When you are talking with others, if somebody asks you the, “how long will you live” question, choose not to take offense. Rather, take the opportunity to enlighten them. Tell them how short of a life children born with Sickle Cell use to have, verses how long you can live today if you take care of your body. Tell them about the women who are in their eighties. Tell them you expect to live a long full life. Your friends will share in that joy with you.
When I was born in 1973—back when I had to walk up hill both ways, in three feet of snow, barefoot, and with nothing to wear but a potato sack—children born with Sickle Cell Anemia in the United States generally lived to be seven to twelve years old. As I have grown up, I’ve watched as that young age increased to be twenty years old, then thirty years old, and up to where it is today, forty to sixty years old. What a joy it is to know, if I live responsibly and take care of my health, that I could live nearly a full life!
If you do an Internet search of, “oldest living person with Sickle Cell Disease,” you will find some inspiring information. In the United States there is a woman who is eighty-five years old; in Nigeria there are references about an eighty-seven year old woman; both are living with Sickle Cell Disease. I have to admit, the first time I read the article about a woman in her eighties who’s living with Sickle Cell, it blew my mind. Think of the hope the life of those two women bring to everyone living with our illness.
Currently I am thirty-nine years old. When I was a child, I never dreamed I‘d live to be the age I am. In this case, what a delight it has been to be wrong, and how thrilling it is to think I could live another fifty years. Living with Sickle Cell Anemia is hard, there’s no doubt about that. Admittedly, there are moments when the complications and pain of Sickle Cell cause me to want to leave this life and cross over to the next; but those are moments, and they pass. Believe me when I say, there is joy greater than the pain you endure. Life is worth living.
When you are talking with others, if somebody asks you the, “how long will you live” question, choose not to take offense. Rather, take the opportunity to enlighten them. Tell them how short of a life children born with Sickle Cell use to have, verses how long you can live today if you take care of your body. Tell them about the women who are in their eighties. Tell them you expect to live a long full life. Your friends will share in that joy with you.
Finding People to Talk to
Talking with friends and family about the things you’re going through can be of great comfort. However, despite how much a friend may care, sometimes talking with another person who lives with Sickle Cell is more beneficial. Fortunately, there are people out there who can help.
SUPPORT GROUPS
A support group is where other people who live with Sickle Cell meet together. It’s a place where you can talk with others who experience similar difficulties as you. Learning how others manage their illness, talking with people who understand the pain and share common struggles can help in the coping process. If you’re interested in finding a support group for Sickle Cell patients, ask your doctor about it the next time you see him. He, or somebody on his staff, will be able to help you locate one. You can also look online by typing in “Sickle Cell support groups” and the city or State you live in and see what you find.
SICKLE CELL ORGANIZATIONS
Sickle Cell Organizations are spread throughout the country. They may offer summer camp, provide counseling, support, or a variety of other services and activities for youth and families. If nothing else, you may be able to find a new friend who understands what it’s like to live with Sickle Cell Disease. Again, ask your doctor for information about a Sickle Cell Organization in your area or do an online search with your parents.
SOCIAL NETWORKS
If joining a support group or becoming involved in a Sickle Cell Organization doesn’t interest you, perhaps being part of an online forum might. On a forum, or other social networks, you can read what others have written who are enduring similar things you are. You can also post questions and see what kind of response you get. You may be able to help somebody in need by sharing your life experiences. Forums can be both informative and emotionally moving.
CHURCH
Faith, religion, spirituality, and the friendships you form in your church-going activities can be a powerful source of strength and comfort. As a result of the love I constantly received from friends at church, and because my family life was/is so good, I never wanted for any other kind of support group. Not everyone has that. Everybody’s life circumstance is different. Church can be a place where you can find a network of friends who can help provide the strength and fellowship you need. You may even find somebody in the congregation who also has Sickle Cell.
SUPPORT GROUPS
A support group is where other people who live with Sickle Cell meet together. It’s a place where you can talk with others who experience similar difficulties as you. Learning how others manage their illness, talking with people who understand the pain and share common struggles can help in the coping process. If you’re interested in finding a support group for Sickle Cell patients, ask your doctor about it the next time you see him. He, or somebody on his staff, will be able to help you locate one. You can also look online by typing in “Sickle Cell support groups” and the city or State you live in and see what you find.
SICKLE CELL ORGANIZATIONS
Sickle Cell Organizations are spread throughout the country. They may offer summer camp, provide counseling, support, or a variety of other services and activities for youth and families. If nothing else, you may be able to find a new friend who understands what it’s like to live with Sickle Cell Disease. Again, ask your doctor for information about a Sickle Cell Organization in your area or do an online search with your parents.
SOCIAL NETWORKS
If joining a support group or becoming involved in a Sickle Cell Organization doesn’t interest you, perhaps being part of an online forum might. On a forum, or other social networks, you can read what others have written who are enduring similar things you are. You can also post questions and see what kind of response you get. You may be able to help somebody in need by sharing your life experiences. Forums can be both informative and emotionally moving.
CHURCH
Faith, religion, spirituality, and the friendships you form in your church-going activities can be a powerful source of strength and comfort. As a result of the love I constantly received from friends at church, and because my family life was/is so good, I never wanted for any other kind of support group. Not everyone has that. Everybody’s life circumstance is different. Church can be a place where you can find a network of friends who can help provide the strength and fellowship you need. You may even find somebody in the congregation who also has Sickle Cell.
Feel Embarrassed
Learning to talk with other people about your condition is another ingredient in accepting your illness. Doing research for my book that is this blog, I read many posts on Sickle Cell forums. I was surprised to learn how many young people wonder if they should tell their friends or family they have Sickle Cell Anemia. Perhaps you are wondering the same thing. My answer to that question is yes. Absolutely, yes!
Before discussing why I believe it’s so important to be open and honest with people about your condition, I’ll quickly go over some of the reasons why some people may not want to tell others they have Sickle Cell.
FEEL EMBARRASSED
Some feel a need to hide their illness because they are embarrassed about being sick. If this is true for you, please, do your best to not let yourself feel this way. Sickle Cell Anemia is a genetic disease you were born with. Neither you nor your parents did anything wrong to “cause” you to be born with it.
Unfortunate as it is, disease is a normal part of the human experience. In fact, research shows nearly 1 in 2 Americans—that’s about 133 million people in the United States—have some kind of chronic condition. Of those 133 million people, 96% live with an “invisible illness.” An invisible illness means the individual doesn’t need to use a walker, wheelchair, or cane. From the outside they look perfectly healthy. Sickle Cell is generally an invisible illness. With so many sick people in the world, you and I have nothing to be embarrassed about. Disease is a struggle, not an embarrassment.
Before discussing why I believe it’s so important to be open and honest with people about your condition, I’ll quickly go over some of the reasons why some people may not want to tell others they have Sickle Cell.
FEEL EMBARRASSED
Some feel a need to hide their illness because they are embarrassed about being sick. If this is true for you, please, do your best to not let yourself feel this way. Sickle Cell Anemia is a genetic disease you were born with. Neither you nor your parents did anything wrong to “cause” you to be born with it.
Unfortunate as it is, disease is a normal part of the human experience. In fact, research shows nearly 1 in 2 Americans—that’s about 133 million people in the United States—have some kind of chronic condition. Of those 133 million people, 96% live with an “invisible illness.” An invisible illness means the individual doesn’t need to use a walker, wheelchair, or cane. From the outside they look perfectly healthy. Sickle Cell is generally an invisible illness. With so many sick people in the world, you and I have nothing to be embarrassed about. Disease is a struggle, not an embarrassment.
In Denial
Denial, I believe, is a big reason why many don’t tell others they’re sick. By denying they are sick to other people, it’s easier for them to lie to themselves about the truth of their illness. It’s important to understand how dangerous this kind of self-denial can be. By not admitting you‘re sick, by not acting responsibly and taking care of your body on a daily basis, you put your health in danger. Turning a blind eye to your problems won’t make them go away, as we discussed earlier, it only makes them worse. However, sharing your burdens with the ones you trust allows you to draw strength from their love and support.
Being Labeled
Many fear being labeled by family as “the sick one,” by friends as “the one who pretends to be sick just to get attention,” by teachers as “the lazy one with special needs,” or fear being stigmatized in some way.
People who label others, especially those with disabilities or other medical problems, generally do so because they are ignorant and uninformed. Talking with others about the nature of Sickle Cell Disease helps increase awareness. Improved awareness of the severity of Sickle Cell, is something our world as a whole needs more of. People are far less likely to label or prejudge when they are informed.
People who label others, especially those with disabilities or other medical problems, generally do so because they are ignorant and uninformed. Talking with others about the nature of Sickle Cell Disease helps increase awareness. Improved awareness of the severity of Sickle Cell, is something our world as a whole needs more of. People are far less likely to label or prejudge when they are informed.
Treated Differently
Some worry they will be treated differently if they tell their friends or family they have Sickle Cell. Others fear their friends will “feel sorry” for them or be afraid to be around them. Being open and honest with loved ones is the key to preventing this from happening. Communicate with people about your illness in a patient and polite manner. Help them understand how Sickle Cell impacts your life. This will resolve any concerns they may have. Take heart. Be courageous enough to be upfront with people to ensure any fears you may have don’t become reality.
I can honestly say that I’ve never had anybody treat me differently after they learned I live with Sickle Cell Disease. Typically, people want to know more about the illness and are curious how it impacts my daily life. Mostly, they are amazed at the things I endure and how well I cope with it.
I can honestly say that I’ve never had anybody treat me differently after they learned I live with Sickle Cell Disease. Typically, people want to know more about the illness and are curious how it impacts my daily life. Mostly, they are amazed at the things I endure and how well I cope with it.
Don't Want Others to Know
Perhaps you don’t like talking about your illness because you’re a private person and feel “it’s nobody’s business.” To this I say, don’t underestimate the power of love. Living with Sickle Cell Anemia is a difficult challenge. You can’t do it alone. Some days it will be the simplest act of kindness you receive from family or friends that will keep you from loosing hope. Compassion from the ones you share your life with may be the best medicine you ever receive.
Despite the fact that I’m quite open about living with Sickle Cell, I can relate to feeling a need to keep certain things about your illness private. There have been times in my life when I didn’t talk about a new complication that arose in my health even with my closest friends. In those instances I found that I had to come to terms with the latest issue in my life myself before I could talk about it with others. Ultimately, however, sharing those personal issues with the people I most trust has always proven to be a blessing. Friends and family can be a powerful source of strength.
Now that I‘ve talked about some of the reasons why you may not want to tell others you live with Sickle Cell Anemia, let’s discuss some of the reasons why I believe you should tell people.
Despite the fact that I’m quite open about living with Sickle Cell, I can relate to feeling a need to keep certain things about your illness private. There have been times in my life when I didn’t talk about a new complication that arose in my health even with my closest friends. In those instances I found that I had to come to terms with the latest issue in my life myself before I could talk about it with others. Ultimately, however, sharing those personal issues with the people I most trust has always proven to be a blessing. Friends and family can be a powerful source of strength.
Now that I‘ve talked about some of the reasons why you may not want to tell others you live with Sickle Cell Anemia, let’s discuss some of the reasons why I believe you should tell people.
Safety Net
If you have ever seen a high wire circus act, or some other similar dangerous acrobatic feat, there’s often a safety net under the performers. This is set in place to catch them so they don’t go splat on the ground should they fall. Sharing the details of your health with loved ones similarly lays out a massive safety net that helps safeguard your health and life.
If you were to spend the night at a relative’s home and had a serious medical problem occur, would somebody there know how to help you? If out with friends and you suddenly had to go to the hospital, would they know what to tell an ER doctor? If away from home, would those you’re with be able to tell the hospital what medications you’re taking?
In my life, all my friends know I have Sickle Cell. They are aware of my needs, and know that cold causes me a great amount of pain. Many times I’ve had friends turn the air conditioner down, or roll the car windows up, to help me stay warm. Many of my friends are aware of the fact that I often take pain medicine every four hours and, to keep from getting sick from that medication, I have to eat something with it. Sensitive to this, I’ve had friends take notice how much time passed since I last ate and asked if I needed to eat. This is both touching and of comfort.
Having people aware of your needs will help you live a healthier life. If your friends are informed about your medical condition, then you don’t have to worry about being pressured into doing something that may be too taxing on your body. You also don’t have to worry about being embarrassed should a certain need arise. Your true friends care about you, they want to help you stay healthy, and are willing give their assistance when you need it.
Having people mindful of your needs shouldn’t make you feel like you’re being treated differently than the rest of your friends or family. Nor should you feel embarrassed about getting additional attention. Instead, use it as a tool to deepen the love and respect which already exists in your relationships.
In my life there has only been one instance when family wasn’t nearby at a time when I needed to be taken to the hospital. I knew my best friend was reliable and I called her at work. Without hesitation, without needing an explanation, and without delay, she left work and drove me to the hospital. She remained by side for several hours in the ER until I was admitted. I pray that you also have this kind of “safety-net” which comes from the love of family and trusted friends.
If you were to spend the night at a relative’s home and had a serious medical problem occur, would somebody there know how to help you? If out with friends and you suddenly had to go to the hospital, would they know what to tell an ER doctor? If away from home, would those you’re with be able to tell the hospital what medications you’re taking?
In my life, all my friends know I have Sickle Cell. They are aware of my needs, and know that cold causes me a great amount of pain. Many times I’ve had friends turn the air conditioner down, or roll the car windows up, to help me stay warm. Many of my friends are aware of the fact that I often take pain medicine every four hours and, to keep from getting sick from that medication, I have to eat something with it. Sensitive to this, I’ve had friends take notice how much time passed since I last ate and asked if I needed to eat. This is both touching and of comfort.
Having people aware of your needs will help you live a healthier life. If your friends are informed about your medical condition, then you don’t have to worry about being pressured into doing something that may be too taxing on your body. You also don’t have to worry about being embarrassed should a certain need arise. Your true friends care about you, they want to help you stay healthy, and are willing give their assistance when you need it.
Having people mindful of your needs shouldn’t make you feel like you’re being treated differently than the rest of your friends or family. Nor should you feel embarrassed about getting additional attention. Instead, use it as a tool to deepen the love and respect which already exists in your relationships.
In my life there has only been one instance when family wasn’t nearby at a time when I needed to be taken to the hospital. I knew my best friend was reliable and I called her at work. Without hesitation, without needing an explanation, and without delay, she left work and drove me to the hospital. She remained by side for several hours in the ER until I was admitted. I pray that you also have this kind of “safety-net” which comes from the love of family and trusted friends.
Building Relationships of Trust
Sickle Cell is a disease that influences almost every aspect of your life. Though you may not be able to choose how it impacts you physically, the power is yours to decide how it affects your relationships. In part, the love you have for your family and friends is demonstrated in your honesty. Being open about the details of your health shows you respect them enough to share your entire life with them. However, if you choose to keep your health problems a secret, you are hiding away some of the biggest parts of who you are.
If you’re secretive about your illness, it’s difficult for your loved ones to fully appreciate you as a person. It makes it impossible for them to totally understand:
➢ You as a person
➢ What makes you behave in certain ways at certain times
➢ Why you’re often absent from, or don’t participate in, certain events
➢ Why you are mentally and physically functional some days and not others
➢ And a hundred other things that will help them become more sensitive to your needs.
Choosing to keep your illness hidden, you are in a sense lying to those you share your life with; and the last thing you need is for your nose to grow and your pants to catch fire. However, by sharing your trials with your loved ones, you may be surprised to see how much you inspire them to bravely face their own challenges. You may also be amazed to see how much strength you gain from the love and support others give you when they understand the circumstances of your health.
A perfect example of how relationships can be strengthened by sharing your illness with others is found in a friendship with a young woman named Elisa. Like all those close to me, Elisa knew I suffered through a great amount of back pain. She could always see when I was in more discomfort than normal and often asked if she could rub my back for me. When my back was really hurting, I would have to ask a friend if they wouldn’t mind rubbing my back. With Elisa, however, I never had to ask; she always knew when I was in pain and always asked to help relieve it through that simple act of kindness. This is my fondest memory of her, and it helped build a beautiful bond between us. She is not alone. I have other friends who also demonstrate their love and compassion for me through similar acts of kindness.
If you’re secretive about your illness, it’s difficult for your loved ones to fully appreciate you as a person. It makes it impossible for them to totally understand:
➢ You as a person
➢ What makes you behave in certain ways at certain times
➢ Why you’re often absent from, or don’t participate in, certain events
➢ Why you are mentally and physically functional some days and not others
➢ And a hundred other things that will help them become more sensitive to your needs.
Choosing to keep your illness hidden, you are in a sense lying to those you share your life with; and the last thing you need is for your nose to grow and your pants to catch fire. However, by sharing your trials with your loved ones, you may be surprised to see how much you inspire them to bravely face their own challenges. You may also be amazed to see how much strength you gain from the love and support others give you when they understand the circumstances of your health.
A perfect example of how relationships can be strengthened by sharing your illness with others is found in a friendship with a young woman named Elisa. Like all those close to me, Elisa knew I suffered through a great amount of back pain. She could always see when I was in more discomfort than normal and often asked if she could rub my back for me. When my back was really hurting, I would have to ask a friend if they wouldn’t mind rubbing my back. With Elisa, however, I never had to ask; she always knew when I was in pain and always asked to help relieve it through that simple act of kindness. This is my fondest memory of her, and it helped build a beautiful bond between us. She is not alone. I have other friends who also demonstrate their love and compassion for me through similar acts of kindness.
People Are Concerned
This is another reason why I feel it’s important to speak openly with others about your illness. Don’t fool yourself into thinking, “If I don’t tell people I’m sick, nobody is going to notice.” People are smart; well, most people are smart. If you’re repetitively absent from school, teachers and classmates are going to see it. If you frequently miss social activities, friends will notice. If not at church services, your fellow members will be concerned. The people who love you want to know you are all right. With that concern comes a desire to assist you in any way they can.
Let me play devils advocate for a moment. Suppose for a moment that you’ve missed two weeks from school due to a Sickle Cell related hospitalization. You have friends at school that you’ve intentionally never told that you have Sickle Cell Disease. After two weeks of absence, you return to school. When your friends ask where you’ve been for the past fourteen days, what do you tell them? That you were abducted by aliens? Will you invent a lie to tell them? Remember, these are your friends and they are concerned about your well-being. From my experience, lies lead to hurt feelings; hurt feelings lead to broken friendships. Besides, the truth is always easier to remember than a lie.
The people in your life who love you are concerned about you. Honor that love by being open and honest with them.
Let me play devils advocate for a moment. Suppose for a moment that you’ve missed two weeks from school due to a Sickle Cell related hospitalization. You have friends at school that you’ve intentionally never told that you have Sickle Cell Disease. After two weeks of absence, you return to school. When your friends ask where you’ve been for the past fourteen days, what do you tell them? That you were abducted by aliens? Will you invent a lie to tell them? Remember, these are your friends and they are concerned about your well-being. From my experience, lies lead to hurt feelings; hurt feelings lead to broken friendships. Besides, the truth is always easier to remember than a lie.
The people in your life who love you are concerned about you. Honor that love by being open and honest with them.
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