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06/06/00 04:02:11
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06/01/00 19:19:41
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05/25/00 20:12:22
Comments: I want to let everyone who is a part of the Romberg's Connection know just how much you all meant to Terry. He was so proud of the Connection and his friends here meant the world to him. To put it mildly, Terry didn't have the easiest life in the world. As he said, "The Good Lord must have taken a real liking to me because he sure gave me a lot of chances for personal growth. Terry wrote in an e-mail to me back when I first met him,"...by hiding in myself, by not exploring this gift of life as fully as I can, I have let myself down. Life is too precious a gift to waste it, and I've promised myself I will do my absolute best not to do that anymore." He didn't. Terry and I lived each day to the fullest. We promised each other that we would never go to bed angry with each other and we never did. We did have a few nights when we had to stay up all night, but when we did get "irritated" with each other, it was usually because each of us was trying too hard to make the other happy. One day I had kind of a hard day with work and Terry got some bad new about a lawsuit he was involved with. We decided to go to the video store and get a movie and just spend the rest of the night snuggling on the couch. Well, we got to the video store and I had in my head a movie that I though would make him smile and I really wanted him to see it. He had in mind a show that he thought I would enjoy and we butted heads -- both trying to make the other happy! I don't regret a single moment of the all to short time I got to spend with Terry. (I was thinking about it and if we would have both lived to be over 100, it still wouldn't have been enough time!) Every moment was a gift and it was the happiest time of my life. We had so much fun. We were always laughing, singing and basically making the most of each moment. I told Terry how much I loved him and how proud I was of him so often that he was probably getting sick of hearing it! Terry I wrote literally thousands of letters to each other, but there is one e-mail that stands out that I would like to share with the members of the Connection. Terry wrote: "Hello, my beautiful wife, I know this might sound like a stupid letter, but I've been thinking about this. I guess this letter is about self-acceptance, and you loving me for who I am. I am going to get a haircut, and I'd like you to be here when I get it. Not my normal haircut where I try to hide stuff, but a short haircut. Since my hair started to get a little thin, I've been avoiding this. I may not look as cute as I do now after the haircut. This is kind of a big deal for me, this self-acceptance thing. Trust me, I know you love me no matter what. I feel the same way about you. I'm just nervous. Hope this doesn't sound stupid. Love, Your husband, Terry." (Just incase anyone is wondering, Terry and I didn't get the chance to get legally married, but we wrote our vows and said them to each other and in our heart we were husband and wife.) Anyhow, back to the haircut letter and my reply: "Hi Honey! No, that doesn't sound stupid at all. Of course I will go with you. I would do anything for you -- you know that. .... I happen to know you are still going to look good if you get your hair cut short. You know how I know? Because you would still look great if you shaved your head bald. But... don't take my word for it. All you have to do is look in the mirror. Do you want to know what I see when I look at you Terry? (Too bad if the answer is no because I'm tellin' ya anyhow!) I see a man who has inspired me to confront my greatest fears head on. I see a man who has shown me how to trust myself and believe in myself again and a man who has shown me how to see the good in others again and given me the courage to trust another person. I see a man who has empathy for others which I think is probably the most important quality a person can have. I see a man who just by being himself "warts and all" has made me so proud that he wants me to be his wife. I know you don't want to be the kind of hero that people set unrealistic expectations for and expect to be perfect all the time, but you -- the real you -- the one who is just a guy with problems and fears just like the rest of us is a hero for going through quite a bit in his life understatement of the century!) and coming through it all still able to care about other people and willing to try to help others. When I look you, Terry, I see the man who has helped me remember my dreams and come up with quite a few new ones. I see a man who has shown me how to live again and not just exist, but most of all I see a man who has helped me to feel that I do deserve to be loved and that is the greatest gift you could ever give anyone. For me, being near you is like magic and that is the only way I can really describe it.
Back to what I see when I look at you. I see a man who is so sexy that he takes my breath away. I see a man with a wonderful sense of humor who is intelligent and so much fun to be around.... (Next section is censored
But, it doesn't matter so much what I see -- it is what you see when you look in the mirror that really matters and I hope that what you see is a man who is ABSOLUTELY AWESOME and is going to be damn cute with short hair or no hair at all.
I love you with every fiber of my being. (Can't believe I am actually saying corny things that I have heard before and practically gagged because at the time, I just didn't get it. But I really mean it. Terry, you are my soulmate.) I believe in magic again! Love always, your wife, Laurisa."
Terry changed my life and I miss him desperately, but I know that he would want me to keep on and stay as strong as I can for my son Ryan (5 years old.) This is the hardest thing I have ever been though, but I will make it through and that is because of something that Terry taught me. I don't have to do everything alone. I always thought there was shame in having to ask for help, but Terry taught me that asking for help actually takes great courage.
I have one more quote from a letter Terry wrote to me only a few days before he passed away. He said,"Laurisa, I don't really know how to explain this, but I can feel you in my soul. No matter how far away you are, when I close my eyes and reach out to you, I can feel your presence there. You are a part of me, the best part of who I am."
All I can say is ditto, Terry!
I love you Terry and I am so proud of you. I know you are at peace now and knowing that I will get meet you again someday gives me the strength to keep on.
To everyone in the connection, it would mean the world to me if you would all let me stay involved. I am willing to do anything I can to help out. You were so important to Terry and you are important to me.
Sincerely,
05/25/00 11:11:16
Comments: Karen, just want you to know that you are not alone in this. We are here for you when you need us. Please write to us at rombergs@hotmail.com, we'd like to get in touch, but you didn't leave your e-mail address ;-) Thanks, Theresa
05/24/00 21:53:21
Comments: i have rombergs ... recenty diagnosed.
Comments: Mary, I'm glad you have found our group. I hope you will write your personal story for our web site and please give us a complete e-mail address so we might write to you. Marilyn
05/21/00 19:31:10
Comments: It is fascinating to look at pictures of people who look like me! I'd like to write my story to be posted. I,ll work on it.
05/20/00 21:28:26
Comments:
Memo
The bond
Rarely do members
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Don't be
And meeting
[ Richard Bach, 'Illusions' ]
'Build it, they will come,' I said to my wife Theresa, remembering Shoeless Joe’s ghostly whisper to Kevin Costner in 'Field of Dreams'…'Build it, they will come,' I told her as we looked at what would soon be named the 'Romberg’s Connection' homepage back in June of 1997. After months of frustrating searches for information on Romberg’s Syndrome, we'd decided to erect a homepage in the hopes that others living with Romberg's would find it and contact us. It was a very humble beginning.
As fate would have it, the very first 'Romberger' to find us was Terry Burau from Seattle, Washington. Neither Terry nor Theresa had ever known another person afflicted with Romberg's Syndrome. You can well imagine the joy and the wonder they both felt at finally having another Romberger to talk to. The three of us became fast friends, and pretty soon we found Monica in Minnesota, Marie in Western Illinois, Marilyn in Iowa, and Judy who lived not far from Terry in the Seattle area.
In October of 1997, we decided to stage a get-together in Dubuque, IA. Terry hopped on the Slamtrak Cannonball and came East to meet us in Chicago and ride along with us to the big meeting. We spent about 72 hours together that weekend, and when it was all over, I felt like I'd made the best friend I'd ever had, like I'd known him all my life. It was so damned hard putting him back on the train to Seattle.
An excerpt from my journal:
[Quote ON]
'Monday came grey, cold and wet. It seemed that with Terry’s imminent departure, the last of the good weather had decided to skip town as well. Riding the elevated train back downtown, we were talking a mile a minute, trying to squeeze every last word in. It was really hard for me to say farewell. For three all-too short days, we had spent hundreds of miles and nearly every waking moment together, the three of us, and I for one had made a very good friend…and now he had to leave. So when we got to the boarding gate, we said 'until next time' instead of goodbye, knowing that somehow or other, God willing, we’d see our friend again. Tearful last-minute hugs, and then he was off.'
'He never looked back, not even once, as we watched him walk down the platform at Union Station toward the front of the train. Soon, he was lost in the crowd, and Theresa turned and buried her head in my chest as she cried. I kept looking down the platform and could occasionally see his head bobbing back and forth in a sea of people. Vaya Con Dios, Mistah Burau…we will meet again.'
'As I finish typing this, Terry should be almost home, his train rolling a’clickity-clack through a grey, foggy dawn somewhere in the Cascade Range, with Seattle just a few hours beyond. I hope he’s awake to enjoy the scenery...Gordito, our cat, seems is confused and upset that Terry’s gone. He keeps climbing up on the guest bed and meowing at me, as if to say, 'Where’d he go, boss?? Is he coming back?' I dunno what to say, except that it’s really hard to type through the waterfall of tears splashing on my keyboard. I’m not one to make friends easily, or quickly, but it happened just that way.'
'Theresa says I miss him more than she does. She may be right.'
[Quote OFF]
Terry became one of our best friends. (We have the long-distance phone bills to prove it) There was such a commonality between us that we were never 'new' friends, but 'old' friends from the git-go. He was there for us, and we for him. Terry always had a place to stay in Chicago, and I think we might have hinted loudly that if he ever wanted to move to Chicago...well, you know. It was so frustrating to feel such a compelling bond between us, and yet, our lives were half a continent apart.
I remember the night before the first get-together in Dubuque, the three of us sat on a bench on a dark sidestreet behind our motel in Maquoketa, IA., philosophizing, talking about all manner of things, and wishing we lived close enough to hang out together all the time. Right now, I think I’d give my left hand for another hour on that bench with Terry, BS’ing and listening to his corny, deadpan jokes. Lord, how I will miss those jokes...'I was born by C-section and I’m perfectly normal, except that when I leave the house, I go out the window.' You were a funny guy, Mistah Burau.
Terry was more than a friend...he was like a brother I never had, and he was an inspiration to me. We’d both had difficult lives, and we’d both survived/overcome alcohol problems. Terry was a tenacious fighter…he met life head-on by it’s own non-existent rules, and when he got knocked down, he always got back up and said, 'That was the best you got? HA!' He never gave up, he never backed down...he asked no quarter and he gave none, and he was never intimidated by long odds. He taught me, by his example, never to give up, no matter what.
He taught me that distance means nothing where friendship is concerned. Other people just don’t understand how Terry could be such a good friend to us when we’d only met him in person once, for three days. But they didn’t know Terry. Terry was all up front, there was no bullsh*t about him…what you saw is what you got, and all, absolutely, for real. No games, no masks, no attitudes. Just Terry. That caliber of honesty is hard to find in this life, and it was one his most wonderful qualities, I think
Probably his greatest gift was selfless compassion, the ability to put his own troubles aside and reach out to someone else in need of help, a kind word, a corny joke, etc…no matter what was going on in his life, he made time for newcomers to the Rombergs group. When he & my wife Theresa first made contact, it was like 'coming home' for the both of them…they were no longer alone, there was someone else living with this rare disease. Terry never forgot that feeling and tried to be there for the new people. He spent a great many hours e-mailing people around the world, and in helping others, he helped himself. I think it a fitting legacy that the group he helped start now numbers 200+ members around the world. He touched a great many lives, and he will be sorely missed.
I’m not nominating Terry for sainthood. We knew each other’s life story, and sainthood was pretty much out the window for both of us…on more than one occasion we joked that if we somehow managed to get into Heaven, they’d probably make us stand in the back. But bro, I’d stand next to you anytime, anywhere. Save me a spot in the last row, I’ll be along whenever.
Tuesday evening we got the terrible news that Terry had died. Saturday morning, it still doesn’t make a damned bit of sense. It’s like one of Terry’s jokes, I keep waiting for the punchline…but there isn’t one, and it’s no joke. I feel like some field came along in the night and ripped off one of my limbs. Terry meant that much to me, though I didn’t quite realize it until he was torn from my life.
These last days, it’s been grey, cold and wet here in Chicago, just like when Terry boarded that train almost three years ago. It’s as if Terry dimmed the lights on his way out. I feel very sad this morning, sad that I will never see Terry again in this life, nor will he, as an honorary uncle, get to teach my children bad habits [Grin] ... and yet, I feel very blessed to have been friends with him for the time we had. I know that his spirit will remain with us so long as we allow his love to live on in our hearts and fondest memories.
Vaya Con Dios, Mistah Burau…we will meet again.
Steven
'And a thousand, thousand slimy things lived on...and so did I.'
05/19/00 16:03:44
Comments: My sympathies to the friends and family of Terry. My gratitude and appreciation to Terry as co-founder of the Romberg's Connection. Although we never met, his humor and the way he attacked life was refreshing and inspiring. He is, indeed, a role model we can all be proud of.
05/19/00 01:08:51
Comments: To Greg and family, and to Terry's Connection family. My heart goes out to you all,and my thoughts are with you at this very sad time.
Lisa
05/18/00 23:23:24
Comments: I cannot explain to anyone the grief that I am feeling right now. Terry was my Brother, My best friend. It was always him and I glued at the hip through out our lives. I lost a part of me on the 15th that I cant replace nor ever want to.
Terry was everything that you all thought he was and more. He had courage inside him that kept him going. It was people like you that gave that to him. I want to stand up and thank you. Before this connection page started he had no one that understood what he felt. Then he had you. Thank you all so much for that gift.
Now to you Terry,
You always read the updates,and answer them nommater how busy you are.So please read this.
I love you Terry. You are everything good in life that I hope to someday be. You are more than a brother to me. You have always known I love you. You were such a good man and decent human being.My life without you in it began a few days ago, its so hard to not look you in the eye and tell you I love you and miss you. I will carry on here on earth until God says I can see you again. I just want you to know its not easy. I want you to know we all miss you. We are talking of old times just like you wanted and we are smiling alot. But, its very hard to smile and cry at the same time.
I love you Terry. We went through hell together and always came out ok. We always retained our love and friendship for eachother and I know we still will.
I will see you soon Big brother Please take care of the part of my heart that you took with you. I will need it back when I see you again so I can love you with all of it again.
I love you Terry...Please rest in piece...
05/18/00 15:08:25
Comments: God be with you on your journey home Terry. My love to you always. adele
05/18/00 13:25:43
Comments: Terry was the very first person that I talked to who had Rombergs. It was a very powerful connection that the two of us had. Just knowing that the other one was across the US, dealing with all the same crap as the other, made us feel better. I look back to those "early days", when we would spend hour upon hour, searching out every lead to find a 3rd person who could share our comraderie.
Never in our wildest dreams did we think that this would grow so large. Terry once told me that he was glad that we started the Connection. He said that the Connection would be his legacy, proof that he had lived.
I just never thought I'd have to say goodbye so soon....
05/18/00 03:29:07
Comments: God be with us all. Dear Terry will be missed greatly. The news of his death was unbelievable. We never met in person, however, like all of you who regularly read, and keep up to date with Rombergs Connection know what an important part of our continuing quest of information that Terry was. His words touched us all, and we are joining in the sorrow with his loved ones. Good Bye Terry. You will be missed, but we will meet one day, by the Grace of God. Your friend, Sharne.
05/04/00 02:13:00
Comments: After looking at this site,I begin to think that theres other people out there that have the same face as mine. And looking at some of the personal experiences, you see the same that I went through. Contact me at (562) 868 2706 I would love to hear from you!
05/04/00 02:01:54
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04/28/00 19:30:47
Comments: I was diagnosed with Parry Romberg Syndrone when I was 35 years old. I am now 58. It started when I was 14 with scleroderma along the left side of my scalp. It progressed from the back to the front of my scalp and at 16 I had surgery to remove it. It also progressed down the left side of my face and then mysteriously stopped. During my 20's I had severe migranes and in my 30's I had the Jacksonian seizures. Needless to say I have been diagnosed with everything and many doctors tried to convince me that my symptons were of a hysterical nature. When I was 35, a wonderful doctor put a name on what had been happending to me throughout my life. I now have a deformity of my left eye, skin shading and bone abnormality down the left side of my temple loss of eyelashes, and left brow and thickened skin around my left eye. I sometimes have lightning flashes in my left eye and severe pain down the left side of my head. All my life I have lived with a disease that no one seemed to know about and doctors have tried to convince me that all my problems stemmd from an emotional disorder. Now at 58 years of age I have finally accepted the fact that there was absolutely nothing I could have done to change things. There are very few people who even know that I have a disease other than my face is definitely not symetrical. I do not know if it will progress; however, at least I know what it is.
04/26/00 01:59:24
Comments: Could I please add your site to the "other disabilities" section of my site. Please feel free to sign my guestbook. Warmest wishes, Lynda
04/10/00 14:32:58
Comments: Excellent resource
04/10/00 00:44:36
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04/10/00 00:44:08
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04/09/00 12:52:50
Comments: I signed the guestbook some time ago but didnt include my story ... here it is ....
04/07/00 03:29:31
Comments: Deanasan, Please give us your e-mail address, so we might correspond with you.
04/06/00 19:10:58
Comments: I am so glad there is a support group for Rombergs. I had no idea there were so many other people afflicted. My heart goes out to all those that have suffered pain and those that have continued deterioration and extensive deterioration including other parts of the body. Also, God bless the children that have to deal with this condition. I was'nt diagnosed with Rombergs until my mid twenties but, I believe It started when I was 17yrs old. The right side of my face is affected, under my eye(no bottom lashes),dark blue mark,under my nose dark blue mark along with what looks like wrinkles,thinner upper lip,thinner right cheek area then the left,line or wrinkle type on my chin(or what I like to call it misplaced dimple). I am 36 now and don't intend on surgery. I've learned to deal with it.(I've had some minor stuff done like collagen and fat cell injections) I am quite lucky compared to some of the people I've read about and I do know some things about Rombergs. If I can be of any help to anyone please let me know. Bless you all.
04/03/00 20:06:18
Comments: Stephanie, Your e-mail address is not complete. Hope you will correct it so we might correspond with you.
04/03/00 19:32:58
Comments: I am a victim of Rombergs Disease
04/01/00 12:44:17
Comments: My son Dylan began developing coup de sabre at and a half. We got the diagnosis of localized schleraderma right away but no treatment except cortisone cream and a course of antibiotic in case Lyme's disease was a factor. Last July we began Methotrexate yet I can't tell if it's stabilized or not. Dylan is almost 7. His eyes are slightly uneven now and that's what worries me most. No dental problems at this point. Looking at the pecture of Jenny at age 8, I'm sure he has Parry Rhomberg's. He gets headaches when he is overtired but much less frequently than when he was 4. Fortunately he is a precocious athlete, outgoing and bright and he doesn't get teased. I do worry alot about the future when I see Jenny's picture at age 12. Must surgery wait until the eyes are so uneven? My faith in God wavers when Dylan asks: "Why did God make me this way?" My only answer is that maybe he had too many assets before. I often marveled at the perfection of his appearance before the disease hit.
03/29/00 16:40:36
Comments: My oldest son has Parry Rhomberg. He is now 19 years old. I just found this web-site I thank God for it!!
03/22/00 05:20:21
Comments: I've posted a message somewhere else on the net but that was before I had an address on the internet so you could reach me. My case is rather mild compared to many. I'm 46 and have had a slight disfiguring on the left side of my lower lip for about 15 years. It has gotten a bit worse but some people don't even notice. About 12 years ago I noticed severe atrophy in my right leg. The calf muscle called the Gasrtoc Nemious ( I think I spelled it right just vanished. I have had a bit more trouble with that leg since but it is likely from favoring it too much. I walk well and swim 1/3 mile daily. I've been to the Mayo Clinic and University Hospitol in Iowa, City. After a long list of about 10 neurologists I decided I have it so I'll live with it. If anyone can tell me I need to know if and when this runs it's course, if it does or can I still expect more atrophy somewhere. I may have a spot on my right pectoral muscle but I'm not sure. Please E-Mail me and I would like to thank some of the people who have written in the past. I want to write back in the worst way but currently I'm finishing a degree in psychology and for years have been to busy to do much. I graduate soon then I'll have more time.
03/13/00 18:12:07
Comments: I was diagnosed at the age of 30 in 1991 with romberg I was glad to learn that there are other people out there with my condition i am interested in learning more
03/11/00 23:38:50
Comments: Just found this site - terriffic !! I was diagnosed with Rombers in my late teens, I am now 47. had a lot of plastic surgery in my late teens and mid 20s, my condition is just part of my life it was great to read stories from others. Feel free to drop me an email. Les
03/06/00 19:54:28
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03/05/00 19:47:41
Comments: i am a 55 year old mother of 2. i was diagnosed with rombegs yesterday 3-4-2000 after 20 years of searching for answers. i would love to talk to anyone about this
03/01/00 17:09:17
Comments: I also have Parry-Romberg disease since I was 5 years old. I would like to be added to your list.
02/29/00 19:33:13
Comments: HI MY DAUGHTER IS 12YRS OLD AND HAS ROMBERGS IM LOOKING FOR SOME ONE TO HELP ME SHE HAD SURGERY DONE IN 09-13-99 IN CHICAGO SHRINERS I WANT TO KNOW MORE ABOUT THE DIEASE PLEASE CALL ME AT YOUR CONVIENCE TIME I REALLY NEED HELP SHE IS SO YOUNG AND IT IS ALL OVER HER FACE AND BODY 808-696-1290
PLEASE REPLY OR WRITE
02/01/00 01:28:42
Comments: My name is Sandra and I am writing this message again for my sister Audrey. She too has Parry-Rhombergs but, she is in the rare 2% that has it on both sides of her face. She also suffers from several other ailments that have afflicted her body due to this syndrome. She lives in Chicago Illinois and would love to get in touch with others that have Rhombergs Syndrome. The info you could swap would be astonishing and she could use the support. Awaiting your responses!
01/31/00 11:34:30
Comments: Hi there It has been a long time....just passing by. Happy 200!! Rudy
01/18/00 15:16:54
Comments: Lovelene, Happy to meet you. Do you have an e-mail address where we could write to you at ? Please let us know. Take Care, Theresa
01/17/00 03:19:57
Comments: I was diasgnosed to have this rare form of disease when I was still 5 years old. While I was growing up the defect became more apparent making my right side of the face smaller than my left even my nose is smaller on the right side. I was told that there is no treatment for it and that i will have to undergo reconstructive surgery when i turn 18. At present i have undergone 2 lipofilling procedures and so far so good. My plastic surgeon told me that i will undergo plastic surgery for the repair of myu nose after a year. I am looking forward to that.
01/12/00 04:30:59
Comments: i wish i could have found some pictures to relate my face and see if there were any similarities. but i dont suppose i would want my picture on here either .it was really nice and very helpful
01/01/00 00:57:00
Comments: Looking for info on Parry Romberg since my 10 year old daughter has just been diagnosed with this. Originally they thought it was linear scleraderma.
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