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
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|
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.