Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Kim, You have put it into a very good perspective. I know when I was first diagnosed, I really did not want to talk to others who were already progressed to disability. I just couldn't for some reason. I didn't want/need to go to the usual support groups, as I had heard how depressing they could be. I was struggling myself. Every now and then someone will come to me in the grocery store and ask if it is OK to give my name and number to a friend who has been diagnosed. I always say, "Sure." Of course, that person never calls, and I understand. I think people see me driving my van and shopping in my motorized chair and think how good I am doing. They can't understand that it is VERY hard. I am just going through the motions and doing the best that I can. Some can't do it though. Again we go back to the individual thing. It's different for everyone. I completely understand. I never really considered keeping my condition a secret, but before I had time to wrap my brain about how I did want to handle it, my own mother had already announced it to the world! She also told me at one point that if I didn't want people to know how I was, then I didn't need to go out in public! This was after I asked her to please tell people that I was doing good if anyone asked about me. (Which they always do as I have grown up in this small town!) Anyway, I have to not tell my mother details or else everyone in town will hear about them. I just want people to know that I am doing good. Whether I am or not. That's my choice. Kim, I think you were wise to not expose your son to the negativity that you spoke of. Thank goodness you found LDN when you did! I am so happy to know that Colby is living as near a normal life as he can! And I think your church should have asked you before making the announcement. This is tough! Marcie (PPMS) In a message dated 8/28/2004 6:53:14 AM Central Standard Time, petessweetheart@... writes: I've tried so hard to resist posting on this, but I can't stop myself. When I first read the posting about the father with MS advising his daughter not to get serious with a boy with a family member with MS, I was angry. I couldn't believe this was coming from someone with MS. But I forced myself to back off and think about it before I replied, and to put myself in his shoes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 How would you feel if people isolated your son and your family for the same reasons? Not nice is it? I have a personal story about first hand prejudice when I wanted to go to a christmas party which i was invited to for the newly diagnosed " looking good " ms group - too angry to get into it, but the MS Society social worker was the one who told me I could not attend because of my wheelchair. The MS society? Yes, you heard right. Nobody said to surround yourself with severly disabled cases, but there is a balance - I see people with MS who look like nothing is wrong - why not see the balance an not focus so much and panic - not everyone's the same, and those that are severe, need respect and dignity too. Not isolation. Friday > I've tried so hard to resist posting on this, but I can't stop > myself. When I first read the posting about the father with MS > advising his daughter not to get serious with a boy with a family > member with MS, I was angry. I couldn't believe this was coming from > someone with MS. But I forced myself to back off and think about it > before I replied, and to put myself in his shoes. > > As most of you know, I have a 16 year old son who was diagnosed with > MS 3 years ago. I thought back to the time of his diagnosis, when my > first instinct was to keep it quiet, but a local church took matters > out of my hands and announced it to the world, even before we had an > official diagnosis. I remember how angry I got that they had taken > this choice away from us, and how much I worried about how this would > affect my son's life, especially his teenage years, because I know > how people are and how they can be, and how afraid they are of what > they do not know. > > At the time of his diagnosis, my daughter, then 21, was in a lengthy > relationship with a young man whose father was SPMS and severely > disabled. I remember thinking so many times that I wished she were > not dating him, because it brought the " worse case scenario " into our > lives, and I didn't want my son to know that side of MS. I never > ever discouraged my daughter from seeing this young man - she had > been with him for 8 years, and I would never have done that. But I > do remember she and I having several conversations about how > frightened we were because we knew how bad it could get first hand, > and how we wished my son didn't have to contend with this knowledge. > That boyfriend is long gone, but at the time, it played a huge part > in our lives. > > Then, a few months ago, when I was desperately seeking contact with > other parents of teens with an MS diagnosis, I finally found a small > group. I was so excited, but when I made contact with this group, I > discovered that out of the 4 I made contact with, 3 of the teens were > on chemo and in wheelchairs. (They dropped me like a hot potato as > soon as they found out Colby was on LDN, by the way...) I > contemplated putting my son in contact with these teens, but again, I > got scared, because I don't want to take his hope away by letting him > see what kind of condition these teens were in. I struggled with > this for quite some time. It all comes down to fear and protection > with me, and has nothing to do with prejudice, but he is my son, and > I will do what I think is best for him. I may not always be right, > but I will try to make the best decisions I can for as long as I can > regarding his health and mental well being. > > I guess what I am trying to say here is that we all have different > motives for doing the things that we do and thinking the things that > we think, and when our kids are involved, our vision may not always > be clear, but we mean well! > > Hope you all have a great weekend! > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 > Kim, > > You have put it into a very good perspective. I know when I was first > diagnosed, I really did not want to talk to others who were already progressed to > disability. It was the same for me. I was trying to absorb the totality of having the diagnosis of MS; trying to accept that so much of the me I used to be was no longer. I was 37 when I was diagnosed in 1988. For a long time I was in denial and the thought of seeing wheechair users scared me so much. I had to work through in my own way to acceptance of having a chronic illness. With time came less fear and more compassion and understanding. Gail Quote Link to comment Share on other sites More sharing options...
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