Monday, November 16, 2015

I've Pissed Off Lucille Ball's Family/Licensing Agency


I just got off of a phone call with a man who works with the Lucille Ball estate. It was a phone call I could have gone without, mostly from his demeanor unfortunately. It was your standard older-male-to-younger-female-who-clearly-doesn't-know-anything-at-all type of call.


Oh, yes, it was that pleasant, complete with the interrupting cow syndrome. Finally, the third time he interrupted me I called him on it and he at least was cordial in that regard only for the remainder of
the call.


How did we get here?

This all started when, on Thursday, the local ABC affiliate where I live put up an interview they had filmed with me in early October discussing my petition. MeTV also picked it up. By 4:30pm Friday, both the stories had been taken down and I wasn't told anything.

I contacted MeTV via Twitter and I was told the family asked them to take down the story. They direct messaged me with some further information:

"Due to continuing discussion over Lucille's condition, her family asked us to remove the post."

"The specificity of her condition has not been confirmed by medical professionals."

The phone call with the individual I mentioned earlier though came from my local ABC affiliate who kindly asked this person to contact me. They had received the following:
Please tell everyone this: there was no confirmed diagnosis of Lucille Ball ever having rheumatoid arthritis. She had some sort of condition when she was in her late teens but it did not continue throughout her life and she never had any symptoms nor did she take any medication for this debilitating disease.
They were also told that this is an "internet rumor" they've been trying to address... though they would be in support if Lucy did have it.


Below is an excerpt from Lucy's autobiography Love, Lucy where Lucy shares in her own words what she went through:
One winter day, I came down with a bad cold that turned into pneumonia. I stayed in my room restlessly for several days, tossing with fever, but then hurried back to Hattie's. I needed that thirty-five dollars a week.
I was standing on the dais for a fitting when suddenly I felt as if both my legs were on fire. The pain was excruciating. Hattie kindly sent me to her own doctor, around the corner on Fifth Avenue. He told me that the pains were arthritic, possibly rheumatoid arthritis. This is an incurable disease which becomes progressively more crippling until the sufferer ends up in a wheelchair for life.
"You must to to a hospital at once." Hattie's doctor told me.
I did some rapid calculations. "I only have eighty-five dollars to my name," I told him.
He then gave me the address of an orthopedic clinic up near Columbia University. That night I was waiting my turn for three hours while the city's poor, some of the horribly crippled, went in and out. It was ten o'clock before my turn came.
The clinic doctor examined me and shook his head. I was by this time crying and half fainting from the pain. He asked if he could try a new and radical treatment, some kind of horse serum, and I said yes, for God's sake, anything. For several weeks I stayed in my room, and he came and gave me injections; finally, when my money ran out and my legs still were not better, there was nothing left to do but go home to Jamestown... Daddy was back home again, thank goodness. He lectured me on taking better care of myself, and DeDe, although still working all day long herself, devoted evenings to massaging my legs and cheering me up.
For the first few months I was in such pain that time passed in a kind of blur. We kept up the horse serum injections, which were then considered a highly experimental, even last-ditch experiment. I was a guinea pig who survived, and the pain gradually subsided. Finally the day came when, with the support of Daddy and the doctor, I shakily stood up. We found that my left leg was now some-what shorter than my right leg.
It also pulled sideways, and to correct this, I wore a twenty-pound weight in one of my ugly black orthopedic shoes. The metal weight felt cold against my foot, and the pain as I clomped around was like needles...
In the late spring from 1930, I was still convalescing at home, my legs thin as matchsticks...
[Ball, L., & Hoffman, B. (1996). Love, Lucy. New York: Putnam. pg 46-48. Bolded parts are my own and not Lucy's.]
Lucy modeling for Hattie Carnegie
This was not osteoarthritis in nature due to it disappearing. I don't expect the family to know everything Lucy went through but when one of the children wrote the forward to the book, I expect that they address the contents.

I asked the gentleman I spoke with about why there had not, instead of completely removing the stories, been a comment made on the story from the family, as they apparently let the local ABC affiliate I interviewed with know that they would love to have included this if only Lucy actually had it. I got a canned response on how he would pass along my input for future use.


This could be a great PR piece, showing that the estate cares about representation of chronic and invisible illnesses, that the family listens to people even if there isn't agreement on what happened. Instead, I get to write this scathing blog post about how very rudely I was treated.

I was told that the stories won't be allowed back up by any means, comment or no.

I know I can't really change their minds on any of this.


I obviously have a few problems with all of this.

  • Why was I not contacted about this initially? The person I spoke to said first that my contact information was nowhere and then, once I said that it would've been easy to find, that contacting me wasn't the priority but that getting down the stories was. Still, once that happened, why wouldn't you go to one of the sources of the 'misinformation' you're trying to correct?
  • I brought up that, regardless of whether or not it was rheumatoid in nature, Lucy herself has said this was arthritis as you see above in Lucy's own words. The person I spoke to apparently didn't know the autobiography existed, which is strange, but also was still adamant that Lucy didn't have arthritis at all without looking into it at all.
  • Let's pretend the above excerpt from Lucy's autobiography didn't exist and this was an internet rumor... Why would the family not use this opportunity to address it as such? Why is having this illness so bad that they can't just issue a statement one way or another?
In any case, you would think that the estate and/or the family would want to clear the air about all of this. I challenge them to do so. If Lucy didn't have arthritis, staying quiet is not going to do anything to stop this. If she was, a confirmation would do a lot for a lot of people. If the family doesn't think it's anyone's business, then they should say that too.


Normally I would say that children shouldn't be involved in this type of stuff, but knowing that Lucie chose show business like her mother, I'm a little less sympathetic. She knows what it's like to have fans and to need to address issues in public right? You would think she'd clear the air.


I would hope that the family will listen to the outcry from myself and others in the chronic illness community and clear the air in a way that isn't creepy and doesn't involve being scoffed at by some old dude that doesn't even know enough about Lucy to be running the estate. 

I hope to stir the pot enough to get some kind of statement. 

I'm not going to be silenced on this subject I can assure you.

I will let Lucy speak for herself until such a time comes that the family actually issues some kind of statement on this issue instead of censoring websites and requesting that organizations take down content that the family doesn't agree with... Honestly the fact that they swooped in and did so is a scary commentary on our media - one that I won't go into, but that certainly needs to be addressed because I want to sit in a dark room with a tin foil hat on right now.



8 comments:

  1. Kirsten, if the family does not want to discuss that aspect of her life, there isn't mich to be done. Since it went away and she was never disabled or it never bithered her again, it could have been anything from sciatica to a vitamin d deficiency causing rickets. She never said in her book that she had a definitive diagnosis through bloodwork. I never read her biography, so I cannot say if she yalked about it further in her book. Don't be too mad at the family or tge estate. Their loved one is long gone and may not have wanted this to be her legacy or be the face of RA. We will never know. I understand the feeling of having someone talk down to you and be rude, but they also were just doing their job for the estate. It sucks! I appreciate all you've done for trying to raise awareness for this terrible disease. I have numerous autoimmune diseases with RA being the primary diagnosis. Well written blog, but it's time to forget about using Lucy to raise awareness.

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    1. If you're someone that works for an estate, you should be kind to the people you interact with for sure. As I've mentioned below, my concern is them censoring me but not addressing this to the public - something as simple as a statement that says "We've seen the petition and can appreciate it, but Lucille Ball did not have any type of arthritis according to the family" would be enough to 1) make me feel better about my interview being completely wiped off the internet with no notice to me, and, 2) address the internet rumors.

      If Lucy didn't have arthritis, they should let the world know that so that patients like myself aren't looking up to a false hero.

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  2. I agree with the above comment completely. I've always thought Lucy was misdiagnosed or possibly misunderstood her diagnosis. A few things in her autobiography are incorrect. I'm sure it wasnt intentional and probably just her not recalling correctly. Even Rheumatic fever makes more sense to me and could have contributed to her heart problems. In some interviews she even said she was disabled for that time due to a car accident. If it was RA she wouldnt have been cured by a experimental horse serum like she described in her book. I'm glad to see the family has confirmed my suspicions. Her physical comedy was so demanding and she was moved with ease until the day she died. I'm sorry you were treated rudely, but Ive just never believed she had RA.

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    1. I find it hard, though, to dismiss Lucy discussing YEARS of her life and recalling them incorrectly. She also never said the horse serum cured her - simply that she took it and was treated like a guinea pig as mentioned above. She also goes on to mention that the physician she began to see treated most of her ailments with diet and such.

      I'm not sure that we can say the family has confirmed your suspicions since they're not talking to anyone but me about it.

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    2. She doesnt use the word cured, but she does say they continued with the injections and the day came when she could stand again. So one would connect the two. When she goes on to talk about the diet, she is speaking in present time, not about the time of her ailment. If it was indeed RA why would she have said it was a car accident for so many years? She talks about it in many interviews. She never mentioned RA in interviews, only in the book which she didn't even get to approve before publication since she had already passed. There is speculation that is was a cover up for something else that I wont mention since I can't know that for sure. I agree they should make a public statement so people aren't looking up to a false hero but its probably a small concern to them.

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  3. My biggest issue with all this right now is that the family has said they're trying to address this as an internet rumor but will not and has not reached out to any of the legitimate sites (A&E, IMBD, etc) regarding getting this information taken down. If they want to treat it as an internet rumor, they should be issuing a statement stating that they don't believe it was any type of arthritis. I should not have to be the messenger to the world about this since they have censored me.

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  4. It could also be that this was a flare. The first BIG one and after months of bed, it calmed down. That happens, too. It could have been various autoimmune conditions but back then, doctors didn't generally go around diagnosing young women with arthritis. I do also recall her talking about her RA later in her life (yes, I'm that old). BTW, my grandmother had untreated JA. She would be bedridden from excruciating, crippling back and hip pain and then chastised for being lazy (she had a cruel mother). So she willed herself out of bed. I only found this out late in life. The pain came back in her 20s and the docs told her to get pregnant. She did and the pain went away. Sound familiar? The RA came full force in her 70s. But it is possible for it to diaper for years, especially back then, when there was literally no choice but to get back up. So, do what you have to do Kisten!

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