Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Bravo Gretchen, well said. from Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 In a message dated 7/19/2000 6:17:04 AM US Eastern Standard Time, hordermason@... writes: << CMT is not 'an inconveinence' it is a very real progressive neurological disease with many symptoms and manifestations. CMT is not merely inconvenient, it is my life. >> A PS. to my Bravo. A doctor from Mayo Clinic actually used these terms to describe my diagnosis of CMT, years ago. Made me feel like all of my symptoms were trivial and inconsequential. Sometimes people are in a bliss of ignorance, even doctors. from Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Totally agree - Sue Inconvenience of CMT I have had CMT just about my whole life and it has taken me years to get to the level of acceptance where I am today. CMT is not 'an inconveinence'it is a very real progressive neurological disease with many symptoms and manifestations. CMT is not merely inconvenient, it is my life. I have had to learn to do just about everything differently than my peers and still turn out the same results - or often better results. I agree we are all at different stages in our CMT. I also agree that finding some gratitude each day is extremely important for sustaining a good attitude which in turns seems to have a good effect on my CMT. Gretchen -------------------------------------------------------------------------------- -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 I just had to reply to this. I am a firm believer that you don't have to be really good at something, what matters is that YOU enjoy it. I do a lot of things that others are much better at but as long as I have a good time at it that is all that matters to me. I have learned not to worry about what others think. Danieta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 I just had to reply to this. I am a firm believer that you don't have to be really good at something, what matters is that YOU enjoy it. I do a lot of things that others are much better at but as long as I have a good time at it that is all that matters to me. I have learned not to worry about what others think. Danieta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 I just had to reply to this. I am a firm believer that you don't have to be really good at something, what matters is that YOU enjoy it. I do a lot of things that others are much better at but as long as I have a good time at it that is all that matters to me. I have learned not to worry about what others think. Danieta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Hi, all. Overnight I've been thinking about my own progression with this disease and want to share some thoughts. Bear with me, this is a bit long. For me, because the diagnosis came late (I was about 50), the effects of the disease have been in other areas of my life perhaps more than physically. I know now that I've had this disease all my life, without doubt. So, while the skinned knees and other bumps and bruises from repeated falls healed, the effects on my self esteem took much longer. Self esteem also took repeated hits, from family, teachers, and of course, peers. When I was diagnosed and did my research on what the disease was and found out it wasn't going to kill me, I was overjoyed. Then I thought, well, I've had this all along, and managed my life for 50 years, so just go on. BUT – there was more to the story – awareness, for one thing. Awareness that, though it wasn't going to kill my body, it had just about killed my heart. Coming to grips with that awareness was very difficult and considerable time was spent in the therapist's chair – a caring therapist who saw something more in this person than was visible to most people. I had, through the years, developed a pretty tough shell. I think people who suffer abuse do that – because there is safety in that shell, however it manifests itself. I can remember very clearly sitting in the therapist's office and just bawling when she explained to me that I have a very big heart! Good grief! An amazing thought, and even now not one I can always admit to. Because having a heart leaves one real vulnerable – right? But at the same time I lived the other way for a long, long time. This way is better! I've mentioned in earlier posts how I was berated about my inability to improve my piano playing. That was another blow to my already poor self esteem. Finally, I left my music for a number of years, not really knowing why. Now I believe it was all in that inner self stuff – I had just been so hurt and music is so much a heart thing, that it was just better to leave it. Now I'm back and, like so much else, enjoying it immensely, but it's different now. I play what I'm able to play, and I don't practice! I just play. I also write music and for the first time ever, I love what I'm writing. It's all heart stuff! And that's okay! Last – relationships! That will take another post, but for starters, I just about ruined my relationship with my daughter, because I was so far away from myself. Now we have a terrific relationship for which I am exceedingly grateful. And we love each other, and we let each other know!! Now that's a trip! So, to make a long story somewhat shorter – I used to think this disease was an inconvenience. That's because I had learned to cope, or compensate, or whatever took me through those first 50 years. But NOW I realize that, even though my CMT is perhaps moderate (?), it has most assuredly affected my whole life and is ever so much more than inconvenient – it's not just in the arms & legs! This is a great Web site. Many thanks to Gretchen – you do an absolutely terrific job! Thank you for creating it, and for maintaining it and us! Cheers to all. Carolyn > Totally agree - Sue > Inconvenience of CMT > > > I have had CMT just about my whole life and it has taken me years to get > to the level of acceptance where I am today. CMT is not 'an > inconveinence'it is a very real progressive neurological disease with > many symptoms and manifestations. CMT is not merely inconvenient, it is > my life. I have had to learn to do just about everything differently > than my peers and still turn out the same results - or often better > results. I agree we are all at different stages in our CMT. I also agree > that finding some gratitude each day is extremely important for > sustaining a good attitude which in turns seems to have a good effect on > my CMT. > > Gretchen > > -------------------------------------------------------------------- ------------ > > > > -------------------------------------------------------------------- ------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Hi, all. Overnight I've been thinking about my own progression with this disease and want to share some thoughts. Bear with me, this is a bit long. For me, because the diagnosis came late (I was about 50), the effects of the disease have been in other areas of my life perhaps more than physically. I know now that I've had this disease all my life, without doubt. So, while the skinned knees and other bumps and bruises from repeated falls healed, the effects on my self esteem took much longer. Self esteem also took repeated hits, from family, teachers, and of course, peers. When I was diagnosed and did my research on what the disease was and found out it wasn't going to kill me, I was overjoyed. Then I thought, well, I've had this all along, and managed my life for 50 years, so just go on. BUT – there was more to the story – awareness, for one thing. Awareness that, though it wasn't going to kill my body, it had just about killed my heart. Coming to grips with that awareness was very difficult and considerable time was spent in the therapist's chair – a caring therapist who saw something more in this person than was visible to most people. I had, through the years, developed a pretty tough shell. I think people who suffer abuse do that – because there is safety in that shell, however it manifests itself. I can remember very clearly sitting in the therapist's office and just bawling when she explained to me that I have a very big heart! Good grief! An amazing thought, and even now not one I can always admit to. Because having a heart leaves one real vulnerable – right? But at the same time I lived the other way for a long, long time. This way is better! I've mentioned in earlier posts how I was berated about my inability to improve my piano playing. That was another blow to my already poor self esteem. Finally, I left my music for a number of years, not really knowing why. Now I believe it was all in that inner self stuff – I had just been so hurt and music is so much a heart thing, that it was just better to leave it. Now I'm back and, like so much else, enjoying it immensely, but it's different now. I play what I'm able to play, and I don't practice! I just play. I also write music and for the first time ever, I love what I'm writing. It's all heart stuff! And that's okay! Last – relationships! That will take another post, but for starters, I just about ruined my relationship with my daughter, because I was so far away from myself. Now we have a terrific relationship for which I am exceedingly grateful. And we love each other, and we let each other know!! Now that's a trip! So, to make a long story somewhat shorter – I used to think this disease was an inconvenience. That's because I had learned to cope, or compensate, or whatever took me through those first 50 years. But NOW I realize that, even though my CMT is perhaps moderate (?), it has most assuredly affected my whole life and is ever so much more than inconvenient – it's not just in the arms & legs! This is a great Web site. Many thanks to Gretchen – you do an absolutely terrific job! Thank you for creating it, and for maintaining it and us! Cheers to all. Carolyn > Totally agree - Sue > Inconvenience of CMT > > > I have had CMT just about my whole life and it has taken me years to get > to the level of acceptance where I am today. CMT is not 'an > inconveinence'it is a very real progressive neurological disease with > many symptoms and manifestations. CMT is not merely inconvenient, it is > my life. I have had to learn to do just about everything differently > than my peers and still turn out the same results - or often better > results. I agree we are all at different stages in our CMT. I also agree > that finding some gratitude each day is extremely important for > sustaining a good attitude which in turns seems to have a good effect on > my CMT. > > Gretchen > > -------------------------------------------------------------------- ------------ > > > > -------------------------------------------------------------------- ------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Hi, all. Overnight I've been thinking about my own progression with this disease and want to share some thoughts. Bear with me, this is a bit long. For me, because the diagnosis came late (I was about 50), the effects of the disease have been in other areas of my life perhaps more than physically. I know now that I've had this disease all my life, without doubt. So, while the skinned knees and other bumps and bruises from repeated falls healed, the effects on my self esteem took much longer. Self esteem also took repeated hits, from family, teachers, and of course, peers. When I was diagnosed and did my research on what the disease was and found out it wasn't going to kill me, I was overjoyed. Then I thought, well, I've had this all along, and managed my life for 50 years, so just go on. BUT – there was more to the story – awareness, for one thing. Awareness that, though it wasn't going to kill my body, it had just about killed my heart. Coming to grips with that awareness was very difficult and considerable time was spent in the therapist's chair – a caring therapist who saw something more in this person than was visible to most people. I had, through the years, developed a pretty tough shell. I think people who suffer abuse do that – because there is safety in that shell, however it manifests itself. I can remember very clearly sitting in the therapist's office and just bawling when she explained to me that I have a very big heart! Good grief! An amazing thought, and even now not one I can always admit to. Because having a heart leaves one real vulnerable – right? But at the same time I lived the other way for a long, long time. This way is better! I've mentioned in earlier posts how I was berated about my inability to improve my piano playing. That was another blow to my already poor self esteem. Finally, I left my music for a number of years, not really knowing why. Now I believe it was all in that inner self stuff – I had just been so hurt and music is so much a heart thing, that it was just better to leave it. Now I'm back and, like so much else, enjoying it immensely, but it's different now. I play what I'm able to play, and I don't practice! I just play. I also write music and for the first time ever, I love what I'm writing. It's all heart stuff! And that's okay! Last – relationships! That will take another post, but for starters, I just about ruined my relationship with my daughter, because I was so far away from myself. Now we have a terrific relationship for which I am exceedingly grateful. And we love each other, and we let each other know!! Now that's a trip! So, to make a long story somewhat shorter – I used to think this disease was an inconvenience. That's because I had learned to cope, or compensate, or whatever took me through those first 50 years. But NOW I realize that, even though my CMT is perhaps moderate (?), it has most assuredly affected my whole life and is ever so much more than inconvenient – it's not just in the arms & legs! This is a great Web site. Many thanks to Gretchen – you do an absolutely terrific job! Thank you for creating it, and for maintaining it and us! Cheers to all. Carolyn > Totally agree - Sue > Inconvenience of CMT > > > I have had CMT just about my whole life and it has taken me years to get > to the level of acceptance where I am today. CMT is not 'an > inconveinence'it is a very real progressive neurological disease with > many symptoms and manifestations. CMT is not merely inconvenient, it is > my life. I have had to learn to do just about everything differently > than my peers and still turn out the same results - or often better > results. I agree we are all at different stages in our CMT. I also agree > that finding some gratitude each day is extremely important for > sustaining a good attitude which in turns seems to have a good effect on > my CMT. > > Gretchen > > -------------------------------------------------------------------- ------------ > > > > -------------------------------------------------------------------- ------------ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.