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!
This is a very intriguing article! I was diagnosed with MS in 2005. I am sitting here wondering about my wording...thinking about it, I have said that I have MS, and I have said that I live with MS. I think it depends on the day-how good or awful I feel. If I feel decent, then I live with it-it is part of who I am. If I am struggling, then I have it-it is a monster that has taken me hostage. The important thing to remember is that a person may have a disability, but that does not mean the disability has to have you.
Attitude goes a long way in coping with illness. Most chronic illnesses are ‘invisible’; not seen on the outside by others like a cast or bandages, but felt, seen, and heard on the inside by the person who is diagnosed with it. Keeping a positive outlook can be a difficult task, especially when those around you say that you don’t look sick, and tell you to try harder because it’s nothing but an off day. I believe that the people around you-your support system-lends a hand in what you perceive you identity to be. For example, if you are surrounded by people that are willing to learn about your illness, and accept it when you say that you have to cancel plans, or have a nap, then you will be able to focus on what it takes to help you feel better. If those around you have not attempted to learn about your illness, and make you feel guilty with thoughtless judgmental comments, well, it is very difficult to have any positive thoughts or feelings about the illness or yourself at all.
It is human nature to identify ourselves with roles-mother, father, caregiver, sick person...but I feel that it is the attitude behind those labels that makes a difference. Attitude and perception can make or break a person, so it makes sense that one needs a compassionate support system. With support, we feel isolated...think of a time when you had the flu and someone at home helped you out. Now imagine if they had of been impatient and treated you as if you did this on purpose, just to mess up their schedule. Not nice. I feel that disability or not, our identity is shaped by our own thoughts and by the reactions of others towards us. Perhaps those of us who are offended when their disability is brought up have an inward sense that sickness equals weakness, and refuse to ‘give in’ to it...what we are taught growing up in our community plays a significant role in how we perceive ourselves and the world. Sadly, it seems that we place a higher value on how much work we can do in a day, than we do on taking care of the gift of life God gave us. In too many cases, a disability throws up a wall that separates people rather than pulling them closer. The person with the disability is not only discouraged with their limitations; they are too often left with feelings of uselessness and loneliness. It can be quite a circle.
There is no simple response to how people think about their disability in relation to their identity-each response is as unique as the person and their circumstances.
Mark, you said, “I don't know what heaven will be like, except that it will be good. For now, while I'm still here on earth, I hope I can remember that different people can respond in very different ways to the same kind of disability, partly based on whether or not they consider it part of their identity. I hope that that knowledge will help me better love each person I meet. And love is the closest we'll get to heaven right now.” ...that is music to my ears! —isn’t that how we are supposed to treat all people-with love, understanding, and tolerance? If we could all make a conscious effort to follow your example, the consequences would be amazing!
How do we help each other? The answer, at first thought, is simple: follow Jesus’ example. Reflect on how He lived, prayed, interacted with others...all pretty straightforward stuff. Easy. But we humans seem to dislike ‘easy’, and prefer to super-size our lives with always wanting more-like Adam and Eve. We take the easy and complicate it with our free will and create a recipe for drama. *Sigh* (just kidding)
At the community college I attended, we were told not to bring our Christianity anywhere near our jobs as counsellors. Apparently, it tends to conflict with clear thinking, and one might be at risk of misleading their patient. I understand that “UU” has a place in this world, as not everyone believes in the same things...but to ask me to leave my Christianity at the door was something I could not-and will not ever do. How does one remove a part that makes up the central core of who they are? Is there a surgical procedure for this?
Learning about other’s belief systems and respecting those beliefs goes a long way in creating a helpful relationship, and as you said, we may even learn from each other. When I run into cases where I wish that I could freely talk about God, I look to the UU way of thinking and carefully choose my words. So, while I may be thinking about (my) God and offering conflict resolution ideas to them, they hear or perceive something neutral, such as-“If you were in Mary’s shoes, how do you think you would feel?”, not “Do unto others...”. It sounds rather fluffy, but that is what I need to do so I do not offend someone who believes in some big guy in the sky, or an entity that can seriously screw up good karma.
In the end, it is helping. So I have to change gears a bit and consider things from another person’s perspective-isn’t that what helping is all about? I have not heard of a surgeon that will perform a religionectomy, but then again, I think that is a good thing-and a procedure I would never have! When we help simply because that is what God has called us to do, we cannot mess it up, or cause harm-not when it comes straight from Him.
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: Identity or Intruder
This is a very intriguing article! I was diagnosed with MS in 2005. I am sitting here wondering about my wording...thinking about it, I have said that I have MS, and I have said that I live with MS. I think it depends on the day-how good or awful I feel. If I feel decent, then I live with it-it is part of who I am. If I am struggling, then I have it-it is a monster that has taken me hostage. The important thing to remember is that a person may have a disability, but that does not mean the disability has to have you.
Attitude goes a long way in coping with illness. Most chronic illnesses are ‘invisible’; not seen on the outside by others like a cast or bandages, but felt, seen, and heard on the inside by the person who is diagnosed with it. Keeping a positive outlook can be a difficult task, especially when those around you say that you don’t look sick, and tell you to try harder because it’s nothing but an off day. I believe that the people around you-your support system-lends a hand in what you perceive you identity to be. For example, if you are surrounded by people that are willing to learn about your illness, and accept it when you say that you have to cancel plans, or have a nap, then you will be able to focus on what it takes to help you feel better. If those around you have not attempted to learn about your illness, and make you feel guilty with thoughtless judgmental comments, well, it is very difficult to have any positive thoughts or feelings about the illness or yourself at all.
It is human nature to identify ourselves with roles-mother, father, caregiver, sick person...but I feel that it is the attitude behind those labels that makes a difference. Attitude and perception can make or break a person, so it makes sense that one needs a compassionate support system. With support, we feel isolated...think of a time when you had the flu and someone at home helped you out. Now imagine if they had of been impatient and treated you as if you did this on purpose, just to mess up their schedule. Not nice. I feel that disability or not, our identity is shaped by our own thoughts and by the reactions of others towards us. Perhaps those of us who are offended when their disability is brought up have an inward sense that sickness equals weakness, and refuse to ‘give in’ to it...what we are taught growing up in our community plays a significant role in how we perceive ourselves and the world. Sadly, it seems that we place a higher value on how much work we can do in a day, than we do on taking care of the gift of life God gave us. In too many cases, a disability throws up a wall that separates people rather than pulling them closer. The person with the disability is not only discouraged with their limitations; they are too often left with feelings of uselessness and loneliness. It can be quite a circle.
There is no simple response to how people think about their disability in relation to their identity-each response is as unique as the person and their circumstances.
Mark, you said, “I don't know what heaven will be like, except that it will be good. For now, while I'm still here on earth, I hope I can remember that different people can respond in very different ways to the same kind of disability, partly based on whether or not they consider it part of their identity. I hope that that knowledge will help me better love each person I meet. And love is the closest we'll get to heaven right now.” ...that is music to my ears! —isn’t that how we are supposed to treat all people-with love, understanding, and tolerance? If we could all make a conscious effort to follow your example, the consequences would be amazing!
Posted in: Pastors as Career Counselors?
How do we help each other? The answer, at first thought, is simple: follow Jesus’ example. Reflect on how He lived, prayed, interacted with others...all pretty straightforward stuff. Easy. But we humans seem to dislike ‘easy’, and prefer to super-size our lives with always wanting more-like Adam and Eve. We take the easy and complicate it with our free will and create a recipe for drama. *Sigh* (just kidding)
At the community college I attended, we were told not to bring our Christianity anywhere near our jobs as counsellors. Apparently, it tends to conflict with clear thinking, and one might be at risk of misleading their patient. I understand that “UU” has a place in this world, as not everyone believes in the same things...but to ask me to leave my Christianity at the door was something I could not-and will not ever do. How does one remove a part that makes up the central core of who they are? Is there a surgical procedure for this?
Learning about other’s belief systems and respecting those beliefs goes a long way in creating a helpful relationship, and as you said, we may even learn from each other. When I run into cases where I wish that I could freely talk about God, I look to the UU way of thinking and carefully choose my words. So, while I may be thinking about (my) God and offering conflict resolution ideas to them, they hear or perceive something neutral, such as-“If you were in Mary’s shoes, how do you think you would feel?”, not “Do unto others...”. It sounds rather fluffy, but that is what I need to do so I do not offend someone who believes in some big guy in the sky, or an entity that can seriously screw up good karma.
In the end, it is helping. So I have to change gears a bit and consider things from another person’s perspective-isn’t that what helping is all about? I have not heard of a surgeon that will perform a religionectomy, but then again, I think that is a good thing-and a procedure I would never have! When we help simply because that is what God has called us to do, we cannot mess it up, or cause harm-not when it comes straight from Him.
Posted in: What would you find helpful here?
Hi Mark,
Just a few thoughts...
--Does anyone have members living with MS?
--What is the general concensus on people's knowlege of MS?
Thanks:)