Last week on Thanksgiving, I spent some time at the Franklin Delano Roosevelt memorial in Washington, DC. It’s a really great spot- surrounded on both sides by the waters of the Potomac River, with planes taking off from Reagan National zipping along overhead. It’s also a pretty big memorial, as far as memorials go- it’s not a gigantic structure like the Lincoln or Jefferson, but rather, it’s a maze of slate that tells the story of our nation’s longest serving president’s legacy. See the wikipedia page to get an idea of it: http://en.wikipedia.org/wiki/Franklin_Delano_Roosevelt_Memorial
Know what’s pretty interesting?
FDR was a Chronic.
Polio is a nasty infectious disease, and FDR contracted it at age 39, long before the vaccine was discovered. He had lived a robust, outdoorsy, full life, and a random encounter with a mega-virus left him paralyzed from the waist down.
He could have decided that that was the end for him. Countless others affected by polio simply stopped living; disability was even more taboo in the 1920s than it is now.
The really great part is that FDR’s more-well known political pursuits were achieved post-polio. He served as Governor of New York, and then President of the United States, all while trying to figure out his “new normal.”
FDR was president during World War II, and the policies he put in place during that time set the course for our country in the 20th Century. He was so well received as president that he was elected to an unprecedented 4 terms as president. FDR could have served 16 years as president, but died from a stroke at the age of 63 one year into his fourth term. Still, he had been President for 12 years. It wasn’t until after his death that the 22nd Amendment was created to officially set a term limit to the presidency- 8 years; two, 4-year terms.
Now, FDR was very careful about his image when he was President. Apparently, there are only 2 known photographs of him in his wheelchair. He had specially-designed leg braces that allowed him to stand with the help of an aide, which he used when he made public speeches. He preferred to be photographed at his desk, which allowed him to present himself as “hard at work,” while allowing him a break from the difficulty of maneuvering the braces. It wasn’t until after his death that the public became aware of the full extent of his limitations.
That’s pretty inspiring to me. While finally being able to designate myself as a “medically disabled person” or a “chronic” or a “spoonie” has been a great source of validation for me, I don’t want it to separate me or somehow be a qualifier attached to my self-description. I want to be Nic, a great writer, blogger, and stuffed animal creator (and so much more!)…who happened to have a medical condition; not necessarily Nic, a sick person who wrote stuff and made stuff (that of course, is the harsh version!). When we think of FDR, we don’t think he was a physically disabled man who became a great president; we think he was a man who was a great president…while he also dealt with his physical limitations.
Some people may want to have their illness come first in their self-descriptions. I can see how it would be beneficial if say, you were starting a foundation for your illness. It can feel more credible when an organization is run by someone who actually has the illness themselves. But personally, outside of that, I don’t see a reason for my illness to take 1st, 2nd, or even 3rd place in my personal identity.
Of course, I want validation and acknowledgement that a lot of stuff is 10x harder when you have a chronic illness than if you don’t. For instance, I would really love to run 5k’s. Running a 5k when you have POTS feels like a tremendously hard thing to do (though I know some people who do-go you!). I think I’ll really love telling people how accomplished I feel one day when I finally finish something like that, and I’ll probably use some form of the phrase, “…and I did it even though I have POTS!”
The first time.
I hope that there will be a second, third, fourth, and one-hundreth time, and that after that first time, I’ll stop adding in that I did it while simultaneously dealing with a medical condition.
FDR didn’t stop and tell everyone about all the accommodations he needed and made in order to be the president. He didn’t go on and on about how he was doing what he wanted “in spite of” the limitations his illness placed on him. He just lived, did what he could, and didn’t bother with the rest.
I worry too much about my illnesses. I let them come to the forefront of my thought process too much sometimes, when I really don’t need them there.
If you have an illness, you know there are times where your symptoms make it impossible to ignore or be distracted from them- your illness is smack in front of your face (or on your face if you have PMLE!), and it demands attention. It levels you.
But occasionally, there may be times when it shrinks back just a bit, and you can see outside of it.
Those are the times I’m talking about; those are the times when I worry too much when I don’t need to. I need to stop inviting my illness to the forefront when it’s not forcing its way there on its own.
I remember when the FDR memorial was being built (it was dedicated in 1997). There was a lot of controversy over the statue of President Roosevelt where he is seated next to his dog, Fala. (The only presidential pet to be memorialized! Perhaps she was the first presidential therapy dog, and we are none the wiser?)
The statue shows FDR with a cape draped over his chair, obscuring whether or not his seat is a wheelchair. It was how he was depicted most in life- like I said, he was a savvy PR person. But knowing that FDR had limitations and yet could still do all the things that the rest of the memorial portrays, is a very significant thing. The National Organization on Disability raised the funds to have a second statue erected at the opening of the memorial which clearly depicts President Roosevelt in a wheelchair.
I’m glad it’s there. I’m glad the other one is still there too, unedited– because it shows the every day trials of someone dealing with a chronic, or otherwise incapacitating, condition. Do we show it all the time? Do we hide it? There are times when it decides for us- some symptoms are more visible than others.
It really comes down to a Tale of Two Statues—we don’t have to be just one thing, visible or invisible. We can ride the fluidity of our own situations.
It’s good either way; FDR shows us we can be great no matter what. ❤