Dear Lady Gaga,
I just finished watching your interview with Larry King on CNN. If you knew me, you would know that running to the computer and vocalizing my thoughts to family, friends and even to you is nothing unusual! I have chosen to step up and “out” (so to speak) about my life with Lupus. Sometimes my story of Lupus is positive and sometimes it is negative, but in the end it is my story. If by sharing my story, it means that at least one person does not feel alone, I feel blessed to have been given the chance to help.
Many times I have heard from readers of my website or my writing that I have typed words that they could not speak aloud. Some have sent email messages and letters telling me that I have given a language of understanding to their support circle. As wonderful as that is, I still am the same girl, and many times feel very alone as I write at my desk. It seems I can help others, but I find it hard to help myself.
I want to thank you because tonight you put a “face” to something that I try to give a “voice” to. I watched your interview and waited anxiously for what I had heard might be a discussion involving you and lupus. Well, to my delight, Mr. King wasted no time and jumped right to the million dollar question.
Note: For my readers who might not have seen or heard the interview here is the transcript:
Gaga: I’m okay. Thank you, Larry. How are YOU?
Larry: I’m okay. You look great… there was a story about lupus or something. Do you have lupus?
Gaga: You know, lupus is in my family. It’s genetic and… um… and the truth is I don’t show any signs, any symptoms of lupus but I have tested borderline positive for the disease. As of right now I do not have it, but I have to take good care of myself.”
Miss Gaga (or should I call you Lady?), I have written countless paragraphs on the topic of lupus, but in your three sentences, you sent the world abuzz about Lupus. You immediately got people talking. Finally, I was the one who felt heard, validated and not so alone. Now, I “get it” when I think of the people who have thanked me, and now it is my turn to thank you.
To date, there has not been one celebrity to bring as much discussion, focus, and awareness on lupus as you have. Most celebrities want to “look” perfect and do not want to have their name associated with a specific health issue. In the interview, you answered the question with grace and a bit of “personal respect”, and I appreciated that. The world doesn’t need to know your business, but addressing the issue rather than side-stepping it helped more then you will ever know. You spoke on a huge media platform about a disease that I struggle with constantly. You are glamorous, creative and a showstopper, but for a few minutes you were right alongside me and I was not alone in my Lupus fight. I love you for that.
Your openness about the disease is good for whoever tunes in to the interview.
Those who knew nothing about Lupus will now at the very least Google the word Lupus out of curiosity and hopefully read some informative and accurate information.
* Your fans (little monsters) can also become educated about this cause and be a dynamic and enthusiastic group to champion lupus awareness.
* For me and for millions who live with lupus you validated a very “unknown” and sometimes un-believed disease. Unfortunately in this world, some people don’t acknowledge things that don’t impact their immediate existence, until they hear about it on television.
* Lastly, for those like me who have Lupus, you have become a beacon of light for this dark disease called lupus that is often misunderstood, and is in desperate need of attention.
I will now admit that I am one of your “closet” fans. I listen to your music when it comes on the radio and sing along as if there was a stadium full of screaming fans in my car. I dance around the kitchen with my 2 year old daughter as she giggles the words “baby gaga”, and I smile. I watch the award shows and admire and envy your ability to be yourself, push boundaries, and most of all have fun doing something that you love. I admit I had never purchased an album or concert ticket previously, but after seeing this side of you, I immediately went online and bought your cd– I even passed on the temptation of searching for free downloads! I want to support any celebrity who supports those with lupus.
I didn’t realize, until I started reading about you tonight, that we have more in common then I would ever think – me a stay at home mom and writer, and you, a superstar. I am from a good Catholic New York Italian family and we both went to New York City High Schools. (I went to LaGuardia Performing Arts). Your Aunt Joanne died of Lupus; my Aunt Margret Anne is living with lupus for years. Both of our Aunt’s have obviously touched us deeply as my aunt helped me get diagnosed. Even before you became a signed musician or worldwide star, you acted like one.
Even before I was an “official” writer, speaker and lupus advocate, I acted like one, starting with one article, and one follower (who happened to be my mom). You are known for saying “I want to change the world one sequin at a time” and I make my personal mantra to change the world one person, one word at a time.
I just finished watching your interview with Larry King on CNN. If you knew me, you would know that running to the computer and vocalizing my thoughts to family, friends and even to you is nothing unusual! I have chosen to step up and “out” (so to speak) about my life with Lupus. Sometimes my story of Lupus is positive and sometimes it is negative, but in the end it is my story. If by sharing my story, it means that at least one person does not feel alone, I feel blessed to have been given the chance to help.
Many times I have heard from readers of my website or my writing that I have typed words that they could not speak aloud. Some have sent email messages and letters telling me that I have given a language of understanding to their support circle. As wonderful as that is, I still am the same girl, and many times feel very alone as I write at my desk. It seems I can help others, but I find it hard to help myself.
I want to thank you because tonight you put a “face” to something that I try to give a “voice” to. I watched your interview and waited anxiously for what I had heard might be a discussion involving you and lupus. Well, to my delight, Mr. King wasted no time and jumped right to the million dollar question.
Note: For my readers who might not have seen or heard the interview here is the transcript:
Gaga: I’m okay. Thank you, Larry. How are YOU?
Larry: I’m okay. You look great… there was a story about lupus or something. Do you have lupus?
Gaga: You know, lupus is in my family. It’s genetic and… um… and the truth is I don’t show any signs, any symptoms of lupus but I have tested borderline positive for the disease. As of right now I do not have it, but I have to take good care of myself.”
Miss Gaga (or should I call you Lady?), I have written countless paragraphs on the topic of lupus, but in your three sentences, you sent the world abuzz about Lupus. You immediately got people talking. Finally, I was the one who felt heard, validated and not so alone. Now, I “get it” when I think of the people who have thanked me, and now it is my turn to thank you.
To date, there has not been one celebrity to bring as much discussion, focus, and awareness on lupus as you have. Most celebrities want to “look” perfect and do not want to have their name associated with a specific health issue. In the interview, you answered the question with grace and a bit of “personal respect”, and I appreciated that. The world doesn’t need to know your business, but addressing the issue rather than side-stepping it helped more then you will ever know. You spoke on a huge media platform about a disease that I struggle with constantly. You are glamorous, creative and a showstopper, but for a few minutes you were right alongside me and I was not alone in my Lupus fight. I love you for that.
Your openness about the disease is good for whoever tunes in to the interview.
Those who knew nothing about Lupus will now at the very least Google the word Lupus out of curiosity and hopefully read some informative and accurate information.
* Your fans (little monsters) can also become educated about this cause and be a dynamic and enthusiastic group to champion lupus awareness.
* For me and for millions who live with lupus you validated a very “unknown” and sometimes un-believed disease. Unfortunately in this world, some people don’t acknowledge things that don’t impact their immediate existence, until they hear about it on television.
* Lastly, for those like me who have Lupus, you have become a beacon of light for this dark disease called lupus that is often misunderstood, and is in desperate need of attention.
I will now admit that I am one of your “closet” fans. I listen to your music when it comes on the radio and sing along as if there was a stadium full of screaming fans in my car. I dance around the kitchen with my 2 year old daughter as she giggles the words “baby gaga”, and I smile. I watch the award shows and admire and envy your ability to be yourself, push boundaries, and most of all have fun doing something that you love. I admit I had never purchased an album or concert ticket previously, but after seeing this side of you, I immediately went online and bought your cd– I even passed on the temptation of searching for free downloads! I want to support any celebrity who supports those with lupus.
I didn’t realize, until I started reading about you tonight, that we have more in common then I would ever think – me a stay at home mom and writer, and you, a superstar. I am from a good Catholic New York Italian family and we both went to New York City High Schools. (I went to LaGuardia Performing Arts). Your Aunt Joanne died of Lupus; my Aunt Margret Anne is living with lupus for years. Both of our Aunt’s have obviously touched us deeply as my aunt helped me get diagnosed. Even before you became a signed musician or worldwide star, you acted like one.
Even before I was an “official” writer, speaker and lupus advocate, I acted like one, starting with one article, and one follower (who happened to be my mom). You are known for saying “I want to change the world one sequin at a time” and I make my personal mantra to change the world one person, one word at a time.
I was “borderline positive” for years before I received a proper Lupus diagnosis. I am so happy that you have had no signs or symptoms of active disease, and I hope you never do. I do want you to continue to work with your doctor and be monitored for lupus. I want you to know that according to both the Lupus Alliance of America and the Lupus Foundation you do not need a positive ANA blood test to be positive for the disease; you need only four out of the eleven criteria to be diagnosed. No single laboratory test can definitely prove or disprove SLE.
I want to be clear I do NOT want you to have Lupus. I do want you to know that I personally, as well as millions of others with Lupus, thank you for bringing attention to this very “unknown” disease.
I wish you the best of health on your tour. I want you to keep making music, keep people thinking creatively, and most of all, just keep being you. Thank you again for the “three sentences heard round the world” that brought attention to lupus and helped me not feel so alone.
I hope you never have lupus, but if you do, I want you to know that you have a new fan, and a Lupus friend to talk to. You can contact me anytime!
Love,
Christine
PS- I would love to interview you about you, this lupus scare, your Aunt Joanne, or anything else you would like to talk about when you are in NYC. from But You Don't Look Sick
With the Psalmist, let us dwell on God for our strength as we cry, "I love you LORD my strength!" Psalm 18:1
Blessings, Glenys
