Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Dear Aletta, I don't usually take the time to write but I wanted to tell you how much I appreciated your beautiful letter. Where some would see a curse, you see a blessing. Thank you for sharing your uplifting attitude. Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Firstly I'm so sorry we've lost Bob, my heart goes out to his family. For you newbies, MSA is not a death sentence, not is it easy and certainly not simple. I prefer to think of it as a challenge. We all die, and a good number of us will do so as as result of disease. Three years ago I was still seeing my illness as an obstacle, an end. I lost the ability to earn a living, socialize and make make plans for the future, while having to deal with symptoms great and small. Since joining the group in September I have had a place to vent, consider and put into perspective what my life now is. Overall the concept of obstacle has changed to being a challenge, it is not an end but a detour. It is not how I imagined life after forty would be. I had planned travel, romance, financial stability and a red Alpha Romeo Spider (1978). Instead I'm barely able to leave my apartment, have little to no opportunity to meet a new mate, find myself marginalized on a small disability, and I can no longer drive. What I have is time to 'waste' time. I'm not running myself ragged with a business, full-time job and social calendar. Instead I can spend a half hour gazing into my aquarium trying to count just how many new baby platies I have (eight I think). That is a luxury, it gives me joy. I am home to help my sick son rather than leaving him to manage alone. I can concentrate on unresolved issues with family (making some real headway with my mom and sis). When my daughter has a crisis, I'm not at some meeting where I can't be disturbed. Being terminal can be a good thing, I have nothing to justify to anyone, why do I do this - because I want to, there's no one I feel I need to impress. That takes so much pressure off. I only need to see people I choose to, not those I should or have to. I can still paint, sculpt and have time to do it. I don't have to eat my sisters chronically undercooked turkey, I just bring a can of ensure to the dinner table. In the end I'll get more living in then someone working till they drop dead of a heart attack. By knowing it'll kill me I can explore how I want that to happen (more dignity than Elvis or Lupe Veles ever had). Before I would go to bed with nagging thought of what was incomplete, I've learned to write it off, each day on its own terms. I smile more, laugh more and interact on a more heartfelt level than ever before. The one choice I have every day is whether I want to let it get me down or not. I choose not. The worst part was not the MSA diagnosis, but not having any explanation for what was going on with me. I woke up one morning (second year of disability), utterly feeling that my mouth had shrunk, my lips were inflated, the whole thing was on fire and my teeth were very small and sharp like glass, and, I could not speak. That still ranks as my worst day. It took many months to learn how to speak with my partially paralyzed tongue. Six months before I was given Neurontin for the pain (had to threaten suicide), which takes the edge off. I spent hours looking in the mirror to convince myself my mouth was not shrunken, my teeth were ok and my lips not severely swollen. No one could offer me and explanation, just like they could not all those times before (fainting, choking, heart attack, polycythemia, hemmorhage, hyperasthesia etc.). Now that I have at least two doctors accepting it as MSA, I can move on rather than wasting all that time an energy just getting someone to aknowledge the disease and give it a name (even though it is provisional). The rest is just a challenge. The challenge is to live longer and better with MSA than anyone could have imagined, and then if donating my brain leads to something useful in the future - BONUS. Just today, I saw a perfect rose, snuggled with my pets, shared a laugh with my doctor, hugged my son. To boot, I am not alone, I know you're out there I can see you writing. I've lost friends in the last few years, they were as young as 29, they did not know and were busy building the perfect life, too busy to see the sun set, sit and watch children play. I've given up trying to become who I wanted to be and have instead learned to like who I am and go from there. That's who I was when I was five, the rest was airs and pretence. Now I have the added benefit of almost a half century of experience and a vast connection to people and this beautiful planet. I don't think I'm being naiive, there are rough days ahead, days I'll want to die. Looking back I'm glad God wasn't listening when I asked to die. When death does come I hope he knows how to tango. Thanks for the attention span folks, I don't get warm and fuzzy often, take care... aletta mes, vancouver, bc canada ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Site: http://www.aletta.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Aletta, Thank you for sharing your experiences. Yesterday I sent a note feeling sorry for myself. But you have reminded me of the importance of counting your blessings. I've married the right person for me the second time around, we have three nice children between us. I am still mobile, working and when I read about your situation and those of some other people, I feel dreadfully embarrased. It doesn't mean I don't suffer with some of my symptoms, but I am a hell of a lot better off than some folks. So I'll think twice in future before I speak out of turn. Once again thank you for reminding me of all the good things in life and all the best to you and your family. Regards Sowter --- aletta mes aletta_mes@...> wrote: > Firstly I'm so sorry we've lost Bob, my heart goes > out to his family. > > For you newbies, MSA is not a death sentence, not is > it easy and certainly > not simple. I prefer to think of it as a challenge. > We all die, and a > good number of us will do so as as result of > disease. Three years ago I > was still seeing my illness as an obstacle, an end. > I lost the ability to > earn a living, socialize and make make plans for the > future, while having > to deal with symptoms great and small. Since > joining the group in > September I have had a place to vent, consider and > put into perspective > what my life now is. Overall the concept of > obstacle has changed to being > a challenge, it is not an end but a detour. It is > not how I imagined life > after forty would be. I had planned travel, romance, > financial stability > and a red Alpha Romeo Spider (1978). Instead I'm > barely able to leave my > apartment, have little to no opportunity to meet a > new mate, find myself > marginalized on a small disability, and I can no > longer drive. > > What I have is time to 'waste' time. I'm not > running myself ragged with a > business, full-time job and social calendar. > Instead I can spend a half > hour gazing into my aquarium trying to count just > how many new baby platies > I have (eight I think). That is a luxury, it gives > me joy. I am home to > help my sick son rather than leaving him to manage > alone. I can > concentrate on unresolved issues with family (making > some real headway with > my mom and sis). When my daughter has a crisis, I'm > not at some meeting > where I can't be disturbed. Being terminal can be a > good thing, I have > nothing to justify to anyone, why do I do this - > because I want to, there's > no one I feel I need to impress. That takes so much > pressure off. I only > need to see people I choose to, not those I should > or have to. I can still > paint, sculpt and have time to do it. I don't have > to eat my sisters > chronically undercooked turkey, I just bring a can > of ensure to the dinner > table. In the end I'll get more living in then > someone working till they > drop dead of a heart attack. By knowing it'll kill > me I can explore how I > want that to happen (more dignity than Elvis or Lupe > Veles ever had). > Before I would go to bed with nagging thought of > what was incomplete, I've > learned to write it off, each day on its own terms. > I smile more, laugh > more and interact on a more heartfelt level than > ever before. The one > choice I have every day is whether I want to let it > get me down or not. I > choose not. > > The worst part was not the MSA diagnosis, but not > having any explanation > for what was going on with me. I woke up one > morning (second year of > disability), utterly feeling that my mouth had > shrunk, my lips were > inflated, the whole thing was on fire and my teeth > were very small and > sharp like glass, and, I could not speak. That > still ranks as my worst > day. It took many months to learn how to speak with > my partially paralyzed > tongue. Six months before I was given Neurontin for > the pain (had to > threaten suicide), which takes the edge off. I > spent hours looking in the > mirror to convince myself my mouth was not shrunken, > my teeth were ok and > my lips not severely swollen. No one could offer me > and explanation, just > like they could not all those times before > (fainting, choking, heart > attack, polycythemia, hemmorhage, hyperasthesia > etc.). Now that I have at > least two doctors accepting it as MSA, I can move on > rather than wasting > all that time an energy just getting someone to > aknowledge the disease and > give it a name (even though it is provisional). The > rest is just a > challenge. The challenge is to live longer and > better with MSA than anyone > could have imagined, and then if donating my brain > leads to something > useful in the future - BONUS. > > Just today, I saw a perfect rose, snuggled with my > pets, shared a laugh > with my doctor, hugged my son. To boot, I am not > alone, I know you're out > there I can see you writing. I've lost friends in > the last few years, they > were as young as 29, they did not know and were busy > building the perfect > life, too busy to see the sun set, sit and watch > children play. I've given > up trying to become who I wanted to be and have > instead learned to like who > I am and go from there. That's who I was when I was > five, the rest was > airs and pretence. Now I have the added benefit of > almost a half century > of experience and a vast connection to people and > this beautiful planet. I > don't think I'm being naiive, there are rough days > ahead, days I'll want to > die. Looking back I'm glad God wasn't listening > when I asked to die. When > death does come I hope he knows how to tango. > > Thanks for the attention span folks, I don't get > warm and fuzzy often, take > care... > > aletta mes, vancouver, bc canada > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > Site: http://www.aletta.0catch.com > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Greetings Aletta! How wonderfully stated! My previous long description of my journey was not meant to be a whine session (someone break out the cheese and crackers, please!). Instead, it was just a way to articulate the complexity of this disorder, and allow others to see how we share similarities. But your are obviously correct. MSA just forces us to remember that " Now " is more important than " When " . Thank you for getting " warm and fuzzy " . As usual, you do such a good job communicating. From the bottom of my heart, thank you. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Sent from the Internet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 , I think it's wonderful to count your blessings, as Aletta reminds us. Even with MSA, there are many, many good things in our lives. But you should always be able to " vent " , and this is a good forun to do it. We all have our bad days, physically and emotionally, and it's good to be able to sit down and type in into the computer and get it out of your system. It's okay to feel sorry for yourself once in a while, we all understand. Just aim for balance in the long run and you will be okay. Carol & Rob > > Firstly I'm so sorry we've lost Bob, my heart goes > > out to his family. > > > > For you newbies, MSA is not a death sentence, not is > > it easy and certainly > > not simple. I prefer to think of it as a challenge. > > We all die, and a > > good number of us will do so as as result of > > disease. Three years ago I > > was still seeing my illness as an obstacle, an end. > > I lost the ability to > > earn a living, socialize and make make plans for the > > future, while having > > to deal with symptoms great and small. Since > > joining the group in > > September I have had a place to vent, consider and > > put into perspective > > what my life now is. Overall the concept of > > obstacle has changed to being > > a challenge, it is not an end but a detour. It is > > not how I imagined life > > after forty would be. I had planned travel, romance, > > financial stability > > and a red Alpha Romeo Spider (1978). Instead I'm > > barely able to leave my > > apartment, have little to no opportunity to meet a > > new mate, find myself > > marginalized on a small disability, and I can no > > longer drive. > > > > What I have is time to 'waste' time. I'm not > > running myself ragged with a > > business, full-time job and social calendar. > > Instead I can spend a half > > hour gazing into my aquarium trying to count just > > how many new baby platies > > I have (eight I think). That is a luxury, it gives > > me joy. I am home to > > help my sick son rather than leaving him to manage > > alone. I can > > concentrate on unresolved issues with family (making > > some real headway with > > my mom and sis). When my daughter has a crisis, I'm > > not at some meeting > > where I can't be disturbed. Being terminal can be a > > good thing, I have > > nothing to justify to anyone, why do I do this - > > because I want to, there's > > no one I feel I need to impress. That takes so much > > pressure off. I only > > need to see people I choose to, not those I should > > or have to. I can still > > paint, sculpt and have time to do it. I don't have > > to eat my sisters > > chronically undercooked turkey, I just bring a can > > of ensure to the dinner > > table. In the end I'll get more living in then > > someone working till they > > drop dead of a heart attack. By knowing it'll kill > > me I can explore how I > > want that to happen (more dignity than Elvis or Lupe > > Veles ever had). > > Before I would go to bed with nagging thought of > > what was incomplete, I've > > learned to write it off, each day on its own terms. > > I smile more, laugh > > more and interact on a more heartfelt level than > > ever before. The one > > choice I have every day is whether I want to let it > > get me down or not. I > > choose not. > > > > The worst part was not the MSA diagnosis, but not > > having any explanation > > for what was going on with me. I woke up one > > morning (second year of > > disability), utterly feeling that my mouth had > > shrunk, my lips were > > inflated, the whole thing was on fire and my teeth > > were very small and > > sharp like glass, and, I could not speak. That > > still ranks as my worst > > day. It took many months to learn how to speak with > > my partially paralyzed > > tongue. Six months before I was given Neurontin for > > the pain (had to > > threaten suicide), which takes the edge off. I > > spent hours looking in the > > mirror to convince myself my mouth was not shrunken, > > my teeth were ok and > > my lips not severely swollen. No one could offer me > > and explanation, just > > like they could not all those times before > > (fainting, choking, heart > > attack, polycythemia, hemmorhage, hyperasthesia > > etc.). Now that I have at > > least two doctors accepting it as MSA, I can move on > > rather than wasting > > all that time an energy just getting someone to > > aknowledge the disease and > > give it a name (even though it is provisional). The > > rest is just a > > challenge. The challenge is to live longer and > > better with MSA than anyone > > could have imagined, and then if donating my brain > > leads to something > > useful in the future - BONUS. > > > > Just today, I saw a perfect rose, snuggled with my > > pets, shared a laugh > > with my doctor, hugged my son. To boot, I am not > > alone, I know you're out > > there I can see you writing. I've lost friends in > > the last few years, they > > were as young as 29, they did not know and were busy > > building the perfect > > life, too busy to see the sun set, sit and watch > > children play. I've given > > up trying to become who I wanted to be and have > > instead learned to like who > > I am and go from there. That's who I was when I was > > five, the rest was > > airs and pretence. Now I have the added benefit of > > almost a half century > > of experience and a vast connection to people and > > this beautiful planet. I > > don't think I'm being naiive, there are rough days > > ahead, days I'll want to > > die. Looking back I'm glad God wasn't listening > > when I asked to die. When > > death does come I hope he knows how to tango. > > > > Thanks for the attention span folks, I don't get > > warm and fuzzy often, take > > care... > > > > aletta mes, vancouver, bc canada > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > Site: http://www.aletta.0catch.com > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Aletta, Beautifully said. Your letter was very much a mirror for me. I've gone through a dramatic transformation myself in the more than 2 yrs since getting dx-ed and the almost 5 years since all this started. These days, instead of looking upon MSA as a " curse, " at times I've even come to think of my illness as a " gift " for all the reasons you cited and some more peculiar to my situation. (Most especially the fact that my two grown sons, now 30 and 28, who had gone -- from land -- to live in CA and OR moved back when I became ill so instead of seeing them, and as of last year their brides whom I adore, 2 or 3 times a year I see them almost every week.) Thanks for taking the time to get " warm and fuzzy " and giving voice to feelings that I think a lot of us share. Moller -- of Potomac, land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 In regards to this topic, I've noticed that my brother seems to have a very resolved outlook on his illness. He never speaks about it in terms that reflect any bitterness of self-pity, and he seems very positive about daily life and the things going on around him. I hope this is how he is really feeling (and not just for the family's benefit) and that he continues to feel this way for as long as possible. Jerry Cash If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Dear Aletta, This was a really beautiful piece. I finally found the time to read it today and I'm glad that I waited until I had a moment to sit and enjoy your thoughts. I hope there is dancing in heaven too! In fact, heaven, to me, is dancing. Peace, Cindy in LA who is always so tempted to dance around the Rose Bowl instead of walk but hasn't the nerve to do so! 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.