Attitudes...when we can start looking around and accept that no one person is alike, then tolerance, respect, patience, and true relationships will flow. I also think it's important to 'own' our faith first...look deep inside and make sure we are always working on building our relationship with God. When that is what fuels us, differences-big or small-will fade and we will start to see the true relationships around us-not the people who annoy us...just a heartfelt ramble:)
I think that writing and commenting on this site is a way to tell your story, kelib...it may have to be in small parts, but every time you share your thoughts and experiences here, you are telling your story. And in sharing, you help more people than you may ever know; as Mark says, many people are looking--they just choose not to comment. Trust that your words will be read and used as God planned them to be :) Sometimes, I wish He whispered a little louder to us...let us know that we are going in the right direction...that we have touched others with our words.
I agree with your comment that 'people do not seem to have the time'...I think because we had no choice but to learn patience and look at life (in general) a lot differently than we did when we were healthy, that people's busy-ness really stands out to us. It is difficult to get those around us to stand as still as we have to, and appreciate the smaller things that are going on...like looking up in awe at God's amazing stars, or watching squirrels gather up their winter stashes.We get responses like... I can't take time to watch animals! Work needs to get done and the squirrels will not pay the bills...look at the stars?! I have to go to bed right now and don't have time to waste 5 minutes looking at the sky! But-that's why we keep talking/writing...and I know that our words will be of comfort to someone, adn make a difference to someone...even if we are not aware of it:)
People do care...why do you think we are talking here? I shared that I have MS as well, and I know that feeling of downright despair when I feel that people don't understand or care. I get it. Which is why I invited you to drop me a line-so we could connect; as Christians and as people that have the same disease.
I am shaking my head right now...you say that there is a lack of compassion, and you don't feel any love here--that is so sad, and I am sorry you are so down right now--but I wonder if you noticed that you have showed Mark and myself that same lack of compassion with your statement? Nobody shows love or compassion here? Have you read what I have been saying to you? You words prompt me to wonder why I am not important enough to respond to, or have my invitation to email acknowledged? I hope it is not because I have MS. Mark and I have sincerely reached out to you, and I pray that you will still take us up on our offers of Christian fellowship. Never give up on others kelib, please. I do hope you come back to the Network:)
kelib...I would be more than happy to tell the stories of all the broken people...but I cannot do that alone. We are all broken, kelib, in one way or another. The judgment you place on yourself is so harsh-it is God’s place to judge who is or is not a good disciple. And you are right, pain can blind us and crush our spirit, but that does not make us hypocrites...just human.
I understand the war we wage with the demons of depression and this awful disease. I understand that at certain times, we have absolutely no control over our emotions because of the activity of the lesions and the mis-firings of the messages in our brain. There are many (too many) times in my day that I have to stop writing or reading--because I forget how for a time. What frightens me is that although these mental mis-firings can be explained to a degree; it feels like I am an outside observer watching some form of dementia settle into my life...and then, poof! Clarity returns for a time. It is a disease that makes it difficult to be content and at peace with oneself.
We should never be ashamed of that. It is not hypocrisy that makes us feel so utterly angry with others not showing compassion...it is pain; physically, spiritually, and mentally. No one is perfect! We all get frightened. Even Jesus was terrified in the garden and felt he was forsaken at the end...My point is, just because Jesus was scared and alone and cried out in anguish, it does not ‘undo’ all the things He spoke about in His teachings, or take away all He accomplished before His final hours! Remember Paul’s promise in Romans 8:26 & 27: “The Spirit helps us in our weakness; for we do not know how to pray as we ought, but the Spirit speaks for us with sighs and groans too deep for words.” Psalm 22:1-11 and Psalm 22:22-31 offers all of us assurance and comfort as well.
We both understand that this disease is difficult, and no one with an affliction as ours can do it alone; so, please kelib, I ask that you tell the leaders with me...together we can represent the broken ones like ourselves.
Very well written! I think you have done a great job of allowing us to identify with one-or maybe even two of the Central Jerusalem Wannabe Temple Worship Committee members. Pride and passion can quickly turn into oil and water during some meetings.
A key point here is that we are indeed humans-humans that can get so fired up over things we- as an individuals- find important. And when those ideas get in our heads, well, they are perfect! So why can't everybody 'chill' and respect Davids songs for what they are? Because someone always has a better way of thinking...such an inane cycle, but sadly it's the cycle that robs us our ability to enter--and remain--humble throughout the meeting.
Thank you for gently nudging us with humor on this one, I know I certainly appreciate it!
I got the nickname a long time ago at work, they said I was a ‘real spitfire’...I was not sure if that was a good or bad thing for a long time!! My dad said they used to call women spitfire if they were opinionated and hot-headed...But it worked out to be a good thing, as they meant I was a go-getter and an independent thinker (another way to say, ‘good worker’, I guess)...it just stuck with me all these years.
Thank you so much for helping me think this through out loud! I learned the, “Oops! Did I really just SEND that?” lesson as well :) A few of us have got together to talk about this in the practical, legal way, and we also spent time praying for patience and guidance...I am not sure what is happening now, as no one from the school has called or emailed back. I will post how it unfolds and turns out—simply in case this can help someone else going through the same thing.
I have a question for you though---would you mind if I shared this with a couple of people who are really keen on ‘spitting fire’? I think it might help calm a few hearts to see this can be discussed rather than fought about...our lives are about setting a Christian example, and I am worried that our emotions are going to cause way too much hurt—(and burn a few bridges if we spit fire!)
I guess the saddest part of this all is that we believed that we actually had found a way to give our kids a Christian education that would not require my husband and I to each work 2 jobs, and actually be around to spend time with the family! Some of the families have already spoken to lawyers, and it seems that the school did not expect people to take it so seriously... (I am scratching my head here too), as they are upset with these families, and told them that they over-reacted to the whole situation.
I am hoping to deliver my response to the school via letter in the next day or two. It simply breaks my heart that so many people are running around ‘promoting’ our Christian attitude and love and tolerance...but the reality seems to be (in my heart) that all that promoting is just smoke. There is no one person to go to for accountability—nor is there one certain committee that will take ownership of this mass-renegade tuition round up. It was not even brought up at the last board or membership meeting. This was done by a small group of people on the board that thought they might look like heroes at tonight’s membership meeting by announcing they had a bunch of delinquents pay up. Sigh...I keep rewriting my response to their letter over because I feel bitterness seeping into it.
Thank you all again for you replies! And Ken-yes, I feel that we do loose our sense of community at times. John- we were talking about the very same thing earlier today as well-it certainly is worth looking into. Thanks for the suggestion :)
Your post brings up a very important aspect of living with a disability! It is a great reminder to those of living with a disability, as well as to those of us who share their lives with a person living with disability/chronic illness. While you want to encourage everyone to find things we can appreciate in daily life, sometimes a person needs to vent and get the 'uglies' out-and feel that the people they talk with understand the hard stuff, and they need to feel that it's OK to get frustrated at times...we all need validation; and if something truly sucks for you, sharing those thoughts and feelings with someone you trust can turn into a nightmare very quickly if the person listening tries to 'soothe' you with sunshine and lolly-pops :) Even worse (in my experience) is the feeling of not being taken seriously; as if you are complaining and creating drama-and wasting the time of the person listening to you.
It is a difficult balance to keep, and there will always be misunderstandings along the way, but as long as we remember that honest communication and respect is the key to building and growing relationships, we will do just fine in the end. Your words of inspiration are a precious gift to many people on the days they feel hopeless, and your transparency with Relentless Grace keeps it real.
Keeping dialogue open and honest with Jesus is a good thing to remember as well. He knows our situation, and will be walking right beside us every step of the way-even on those days we feel so darn alone in our journey. He sends compassion through the people He puts in our path, and gives us that very same gift to pass on to others when we feel stronger.
kelib, referring to a person as damaged is hurtful...and even if their illness renders them incapable of understanding things we say, it does not render their friends and family incapable of understanding. Labels can take away a person's dignity...and I know it sounds nit-picky, but able minded people need to step back and be willing to change their choice of words and learn how those words affect those around them.
I understand that the person with the illness might not have a clue as to what the 'label' means...but if I said, "'so-and-so has X illness", and people around me heard me, they would take that to be a fact. What if I was wrong? What if I was in a bad mood and was being mean? I would be hurting that person in the long run, and that is what matters. Words are powerful-they can build us up or tear us down.
I am not picking or attacking here, just wanting to be a voice for others:)
You are not alone! I have MS as well...secondary progressive.
You said, "I'm not looking for a label but for people to take me and other diabilities seriously."... We share the same thoughts. If I could make someone understand what it feels like to be in my shoes for 5 minutes, I would bet that I would never hear--'but you don't look sick', or 'you look good' from that person again when I explain why I cannot drive for youth that night, or why I cannot commit to a meeting 2 weeks away.
My reply to your original comment was an effort to give a voice to someone who couldn't speak up...you must understand the term, "brain farts"--I have them more frequently now, and it scares me to think that one day, I might not be able to express myself coherently... I guess that's why I advocate now-while I still can :)
Please feel free to contact me if you want to shoot the breeze with a fellow MSer!
Thank you so much for the links...the Diversity Inc site is down for now, but I checked out the "People first Language", and so far it looks like there are a lot of things we could use to teach people about compassion. Not just in this arena, but in life in general. One of my favorite sayings is that your words can build someone up, or tear them down. Many times it's not so much about what we say, but how we say it.
Posted in: Universal Design in a Church Setting
Attitudes...when we can start looking around and accept that no one person is alike, then tolerance, respect, patience, and true relationships will flow. I also think it's important to 'own' our faith first...look deep inside and make sure we are always working on building our relationship with God. When that is what fuels us, differences-big or small-will fade and we will start to see the true relationships around us-not the people who annoy us...just a heartfelt ramble:)
~spitfire
Posted in: Including People With Disabilities in Church Life
I think that writing and commenting on this site is a way to tell your story, kelib...it may have to be in small parts, but every time you share your thoughts and experiences here, you are telling your story. And in sharing, you help more people than you may ever know; as Mark says, many people are looking--they just choose not to comment. Trust that your words will be read and used as God planned them to be :) Sometimes, I wish He whispered a little louder to us...let us know that we are going in the right direction...that we have touched others with our words.
I agree with your comment that 'people do not seem to have the time'...I think because we had no choice but to learn patience and look at life (in general) a lot differently than we did when we were healthy, that people's busy-ness really stands out to us. It is difficult to get those around us to stand as still as we have to, and appreciate the smaller things that are going on...like looking up in awe at God's amazing stars, or watching squirrels gather up their winter stashes.We get responses like... I can't take time to watch animals! Work needs to get done and the squirrels will not pay the bills...look at the stars?! I have to go to bed right now and don't have time to waste 5 minutes looking at the sky! But-that's why we keep talking/writing...and I know that our words will be of comfort to someone, adn make a difference to someone...even if we are not aware of it:)
Posted in: Including People With Disabilities in Church Life
kelib,
People do care...why do you think we are talking here? I shared that I have MS as well, and I know that feeling of downright despair when I feel that people don't understand or care. I get it. Which is why I invited you to drop me a line-so we could connect; as Christians and as people that have the same disease.
I am shaking my head right now...you say that there is a lack of compassion, and you don't feel any love here--that is so sad, and I am sorry you are so down right now--but I wonder if you noticed that you have showed Mark and myself that same lack of compassion with your statement? Nobody shows love or compassion here? Have you read what I have been saying to you? You words prompt me to wonder why I am not important enough to respond to, or have my invitation to email acknowledged? I hope it is not because I have MS. Mark and I have sincerely reached out to you, and I pray that you will still take us up on our offers of Christian fellowship. Never give up on others kelib, please. I do hope you come back to the Network:)
spitfire
Posted in: "We Are Not Forsaken": a Funeral Sermon
Thank you for sharing this
Posted in: Including People With Disabilities in Church Life
kelib...I would be more than happy to tell the stories of all the broken people...but I cannot do that alone. We are all broken, kelib, in one way or another. The judgment you place on yourself is so harsh-it is God’s place to judge who is or is not a good disciple. And you are right, pain can blind us and crush our spirit, but that does not make us hypocrites...just human.
I understand the war we wage with the demons of depression and this awful disease. I understand that at certain times, we have absolutely no control over our emotions because of the activity of the lesions and the mis-firings of the messages in our brain. There are many (too many) times in my day that I have to stop writing or reading--because I forget how for a time. What frightens me is that although these mental mis-firings can be explained to a degree; it feels like I am an outside observer watching some form of dementia settle into my life...and then, poof! Clarity returns for a time. It is a disease that makes it difficult to be content and at peace with oneself.
We should never be ashamed of that. It is not hypocrisy that makes us feel so utterly angry with others not showing compassion...it is pain; physically, spiritually, and mentally. No one is perfect! We all get frightened. Even Jesus was terrified in the garden and felt he was forsaken at the end...My point is, just because Jesus was scared and alone and cried out in anguish, it does not ‘undo’ all the things He spoke about in His teachings, or take away all He accomplished before His final hours! Remember Paul’s promise in Romans 8:26 & 27: “The Spirit helps us in our weakness; for we do not know how to pray as we ought, but the Spirit speaks for us with sighs and groans too deep for words.” Psalm 22:1-11 and Psalm 22:22-31 offers all of us assurance and comfort as well.
We both understand that this disease is difficult, and no one with an affliction as ours can do it alone; so, please kelib, I ask that you tell the leaders with me...together we can represent the broken ones like ourselves.
spitfire
Posted in: Imagining an Early Worship War
Very well written! I think you have done a great job of allowing us to identify with one-or maybe even two of the Central Jerusalem Wannabe Temple Worship Committee members. Pride and passion can quickly turn into oil and water during some meetings.
A key point here is that we are indeed humans-humans that can get so fired up over things we- as an individuals- find important. And when those ideas get in our heads, well, they are perfect! So why can't everybody 'chill' and respect Davids songs for what they are? Because someone always has a better way of thinking...such an inane cycle, but sadly it's the cycle that robs us our ability to enter--and remain--humble throughout the meeting.
Thank you for gently nudging us with humor on this one, I know I certainly appreciate it!
Posted in: Can a Christian School Sue You?
Hi John,
I got the nickname a long time ago at work, they said I was a ‘real spitfire’...I was not sure if that was a good or bad thing for a long time!! My dad said they used to call women spitfire if they were opinionated and hot-headed...But it worked out to be a good thing, as they meant I was a go-getter and an independent thinker (another way to say, ‘good worker’, I guess)...it just stuck with me all these years.
Thank you so much for helping me think this through out loud! I learned the, “Oops! Did I really just SEND that?” lesson as well :) A few of us have got together to talk about this in the practical, legal way, and we also spent time praying for patience and guidance...I am not sure what is happening now, as no one from the school has called or emailed back. I will post how it unfolds and turns out—simply in case this can help someone else going through the same thing.
I have a question for you though---would you mind if I shared this with a couple of people who are really keen on ‘spitting fire’? I think it might help calm a few hearts to see this can be discussed rather than fought about...our lives are about setting a Christian example, and I am worried that our emotions are going to cause way too much hurt—(and burn a few bridges if we spit fire!)
~spitfire
Posted in: Can a Christian School Sue You?
Hi All,
Thanks for your replies!
I guess the saddest part of this all is that we believed that we actually had found a way to give our kids a Christian education that would not require my husband and I to each work 2 jobs, and actually be around to spend time with the family! Some of the families have already spoken to lawyers, and it seems that the school did not expect people to take it so seriously... (I am scratching my head here too), as they are upset with these families, and told them that they over-reacted to the whole situation.
I am hoping to deliver my response to the school via letter in the next day or two. It simply breaks my heart that so many people are running around ‘promoting’ our Christian attitude and love and tolerance...but the reality seems to be (in my heart) that all that promoting is just smoke. There is no one person to go to for accountability—nor is there one certain committee that will take ownership of this mass-renegade tuition round up. It was not even brought up at the last board or membership meeting. This was done by a small group of people on the board that thought they might look like heroes at tonight’s membership meeting by announcing they had a bunch of delinquents pay up. Sigh...I keep rewriting my response to their letter over because I feel bitterness seeping into it.
Thank you all again for you replies! And Ken-yes, I feel that we do loose our sense of community at times. John- we were talking about the very same thing earlier today as well-it certainly is worth looking into. Thanks for the suggestion :)
~spitfire
Posted in: Glamorizing Disability?
Hi Mark,
Your post brings up a very important aspect of living with a disability! It is a great reminder to those of living with a disability, as well as to those of us who share their lives with a person living with disability/chronic illness. While you want to encourage everyone to find things we can appreciate in daily life, sometimes a person needs to vent and get the 'uglies' out-and feel that the people they talk with understand the hard stuff, and they need to feel that it's OK to get frustrated at times...we all need validation; and if something truly sucks for you, sharing those thoughts and feelings with someone you trust can turn into a nightmare very quickly if the person listening tries to 'soothe' you with sunshine and lolly-pops :) Even worse (in my experience) is the feeling of not being taken seriously; as if you are complaining and creating drama-and wasting the time of the person listening to you.
It is a difficult balance to keep, and there will always be misunderstandings along the way, but as long as we remember that honest communication and respect is the key to building and growing relationships, we will do just fine in the end. Your words of inspiration are a precious gift to many people on the days they feel hopeless, and your transparency with Relentless Grace keeps it real.
Keeping dialogue open and honest with Jesus is a good thing to remember as well. He knows our situation, and will be walking right beside us every step of the way-even on those days we feel so darn alone in our journey. He sends compassion through the people He puts in our path, and gives us that very same gift to pass on to others when we feel stronger.
~spitfire
Posted in: The Language of Mental Illnesses, Brain Disorders, and Disabilities
kelib, referring to a person as damaged is hurtful...and even if their illness renders them incapable of understanding things we say, it does not render their friends and family incapable of understanding. Labels can take away a person's dignity...and I know it sounds nit-picky, but able minded people need to step back and be willing to change their choice of words and learn how those words affect those around them.
I understand that the person with the illness might not have a clue as to what the 'label' means...but if I said, "'so-and-so has X illness", and people around me heard me, they would take that to be a fact. What if I was wrong? What if I was in a bad mood and was being mean? I would be hurting that person in the long run, and that is what matters. Words are powerful-they can build us up or tear us down.
I am not picking or attacking here, just wanting to be a voice for others:)
Posted in: The Language of Mental Illnesses, Brain Disorders, and Disabilities
kelib,
You are not alone! I have MS as well...secondary progressive.
You said, "I'm not looking for a label but for people to take me and other diabilities seriously."... We share the same thoughts. If I could make someone understand what it feels like to be in my shoes for 5 minutes, I would bet that I would never hear--'but you don't look sick', or 'you look good' from that person again when I explain why I cannot drive for youth that night, or why I cannot commit to a meeting 2 weeks away.
My reply to your original comment was an effort to give a voice to someone who couldn't speak up...you must understand the term, "brain farts"--I have them more frequently now, and it scares me to think that one day, I might not be able to express myself coherently... I guess that's why I advocate now-while I still can :)
Please feel free to contact me if you want to shoot the breeze with a fellow MSer!
Posted in: The Language of Mental Illnesses, Brain Disorders, and Disabilities
Hi Mark,
Thank you so much for the links...the Diversity Inc site is down for now, but I checked out the "People first Language", and so far it looks like there are a lot of things we could use to teach people about compassion. Not just in this arena, but in life in general. One of my favorite sayings is that your words can build someone up, or tear them down. Many times it's not so much about what we say, but how we say it.
Thanks again!