To Meg Casey, being assertive meant treating everyone equally. She did not seek sympathy and would even call out handicapped people that she felt were using their condition as an excuse to be rude. Be willing to speak up knowing that you have associates yoursalf with family or others that are willing to step in to back you up if your voice is not being heard but also call you out in the cases where it is you that is out of line.
Meg's mother worked at the family business Casey Fuel which later became Climate Engineering. A short woman but very lady-like she was always wearing high heals, even on her bathroom slippers.
Meg's mother was a career professional woman, she ran companies, was active in politics and raised a family during the 1950s and 60s when most mothers stayed at home. Meg's mother and father taught her to stand up for herself, defy her 6 older brothers that were bigger and stronger and everything else to be a strong independent woman. She lived that all her life since she was little. Meg's mother instilled a no take prisoner tough position in Meg. If that’s what you want to do. Meg worked at Goodwill. She sat at chair.My mother was active in local politics of getting things accomplished like getting playgrounds built, not running for office but getting things done. She’d go down to the hall of aldermen "You’re gonna do this, this is the right thing to do." and she go to each and see each one of them ask "What are you gonna do?" My mother would kill them with kindness. She was not wrong, she would ask for things that were needed. Everyone was suffering from Polio, she and other Saint Ann’s mothers help get a dumping site cleaned up and they made a playground out of it. But Meg helped with fund-raising and talk of the town. The women set an example on getting things done, they organized and led others to follow. "We’re doing this. We’re meeting this Sunday and you better show up with a shovel!" Meg's mother was not a big one for talking about it and politics was about getting things done over which party one belonged to. These learned values were passed down to Meg's and her brothers, for example, T.J. later became a Republican state representative but they all worked closely with Milford's Democrat mayor Alberta Jagoe who was also a family friend.
Meg loved to laugh and engage in horseplay. There was lots of family time with an open door policy there was always friends and buddies of the 6 boys over at the house, sometimes more of them than family. Meg's mother just welcomed it and that’s what Meg grew up. She was not shielded from it, she was just part of the family. It was understood by everyone, even the young kids, that she was fragile. She was tough, she would go out in public and she would look different. I remember all the kids saying she looked like a monster, they don’t realize what they are saying. Meg attracted all the little kids at the game. She was the pied piper of little kids. She just lived her life. She couldn’t ride conventional bikes because if she fell off. She would zoom up and down the street on a chain driven tricycle. She would fall down and break a bone, she was fragile. It didn’t stop her. Bike helmets in the 1960s were often just made of leather. Even motorcycle helmets at time did not offer much protection. The first effective bike helmet was in 1975 and an infant size that would fit Meg was not introduced until the 1980s. We didn’t shield her, my mother kept an eye on her, there were many pictures of my mother and father and meg was not far out of sight or she was with her brothers.
Meg was as strong as her mother. She was unique but she wasn’t different. Just wanted to be like everyone else. She was not a safe player, she wanted to taste it all. She would travel to Florida, Mexico and cross-country.
The Casey family was always tight. Meg was always in everything. There were regular family gatherings. such as Halloween parties with Hell’s Angels and business owners and she’d got along with everyone. Meg started the Casey family annual reunions but didn't make it to the first one. People that just met her loved her. She was funny and never shied away. She’d have a drink with us, didn’t over-indulge. As in the rest of her life, she knew her limits and behaved very lady-like.
No matter what afflicted her, Meg regarded her condition as an inconvenience, not defining who she was. Meg would adapt by doing things differently.
photo courtesy of Elaine Morrisey
Many that tried putting words in Meg's mouth. She was witty and stuf didn't need to be made up, but you can’t stop people from saying things. Photographers often tried to accent the progeria instead of the person. She was fantastic, beautiful woman in a fragile body. If you looked at her you would think she was 10 years old from her stature. One particular time the kids were saying monster. They were about 10 years old and never saw someone that looked different. People stop and stare and ask questions and we’d talk about it, but kids are so open-minded at that age. You merely explain it to them and they shrug it off.
Everyone loved Meg. She had them from all kinds. She had motorcycle riders to CEOs, Meg could handle them all. A lot of people underestimated her.. There were times that she wasn’t taken seriously because of her stature although her mind, she was a smart, smart woman. She had a disease but her brain was right there. She would never admit defeat. She fought all her life and fought be treated fairly, give her a shot.
She was very active in making the human side of kids. It doesn’t have to be a death sentence. It is for many eventually but 12 is not a deadline. She went to give hope to some of the parents that you can’t live your life like that. She always advocated let them be as normal as possible. She proved her doctors wrong. She wanted nothing to do with living her life in a bubble. She was always reaching out to other people even when her brothers were being idiots. She would let us know in no uncertain terms. She was a champion as far as life as full as possible. Family wasn’t going to step in unless somebody raised their hand and she was fully capable of handling the situation right now. She was fully capable but if everything got silly they’d step in but most of the time there was no need, she she handled it.
Make A Wish had all these kids out there with progeria at Disneyland. She got on a plane and flew out. From there she got really involved with that. The Make A Wish people were really nice about it. An organization that we worked with.
Meg turned down people that supposedly had her best interests but had ulterior motives. Meg felt they were more interested in promoting their new book or to be in a side show. Some that wanted to write their own book "Why Do Bad Things Happen To Good People". It was a tragedy that it happened. She felt that they were just trying to profit. She didn’t agree with a lot of the things that were said. She did not like being used. There was a lot of negative and if she thought someone was trying to play her she cut them to the quick. She was not buying their game and curse them out. She could be harsh if someone was out of line and shut it off to defend herself.
There were barriers or "obstacles" as she put it to use a word that sounded more positive. She didn’t drive. Heavy doors would crush her. If there was a heavy door she would ask for help. That’s what she needed and she’d thank them. Meg would find the automatic door buttons of today very extremely useful. She had tiny, almost infant’s size hands. She drank out of a stem glass all the time. She went on with her life. She was a proud and independent woman. She wanted and we treated her as normal.
Mr. Oyster
by Meg Casey
Meg was creative and made fantastic Halloween costumes. Once she went as a little jack in the box.
Meg was passionate about writing until she died in ’85. Most of her newspaper column was what people wrote to her. She was honest, kind and supportive. She gave advice, mentor and meet people through talk groups like Milford Independents. She always found the good. She would invite people to come down. She was as kind as kind could be but was going to be brutally honest with you if you needed it. She always had a kind word for everyone, to always find the good.
Meg reached out to everyone including those that wrote to her when she was writing Most Able Disabled. She had a lot of handicapped friends and they came to the house. She was more of a lesson giver. Anyone that was wallowing in pity would not find it in Meg. She would certainly rectify, turn you around from it. Stand out in the sunshine, go out and try and if this.
My mother and Meg kept that to the girls stuff.My sister had her confidants. Whether it was going to Halloween parties or going ons, that’s where the brothers were all there. Maturation happens with the women or girlfriends. She just fit in with everybody.
Meg just wanted to be like everyone else. The girls and women in her life grew and they found boyfriends. I’m sure there was envy but she never wore it on her sleeve. She had a couple of boyfriends that she dated. If you invited her out it was like take her to a concert. Take her up to the Shakespeare Theater in Stratford. Just had to be very careful. All us brothers would buffer her, 5 or 6 guys around her to protect her. It got pretty hairy sometimes. We were friends of the owner of Toad’s Place. A lot of she felt more than just friends but they were a couple of gentlemen in her life. She was happy. They were good to her, that’s all that matters.
Meg was very vocal about helping others and growing up in the 1970s and 80s leads some that knew her best to believe she would be a real strong advocate for medical marijuana to help people with their appetites or Glaucoma as long as it doesn’t hurt people. She had her aches and pains. She was tough but unless it was a problem she wouldn’t moan and groan. She’d handle it. She dealt with it. There were aches and pains that she didn’t tell the rest of the family besides her mother. She never let on. She persevered and she was just tough. If there was a problem she’d ask for help. She wasn’t afraid to ask for help if she needed help.
Nesting
by Meg Casey
When Meg wanted to move out of the house on her independence, the Casey family built a house specially for her. The windows were normal sized but set lower so she could open and close them to look out at the beach. It had a full size kitchen with the counters and everything else lower so she could do what she wanted to do. To accomodate people of all sizes spiral seat piano stools at the kitchen counter allowed anyone to spin them for a height they were comfortable with. Meg tended to stand instead.That’s where she lived until she died. Independent, she loved it. Meg took driving lessons in a specially adapted car and in a booster seat but didn't get a licence. She always had a roommate or somebody that was down there with her to drive and help with the shopping. It was not taking care of Meg, there was plenty of us around. Brother lived next door. Meg was independent But roommates had dates and stuff and Judy got married. Like everything else everyone treated her as she was just Meg. Everybody said hi to her, if they saw her at the beach they’d offer to carry her beach chair and stuff. Other than that they’d set the chair up and say see you later and leave her with her book.
She was always in the hospital for broken bones. She outlived all of the predictions, they said she wouldn’t make it past 12. The doctors tried putting her up on stage and humiliated her several times in front of hospital interns. 20 years after Meg's death the family was not informed in advance when a doctor that had been one of those interns claimed to the press that she didn’t have true progeria.
The Progeria Foundation was different from The Sunshine Foundation. That was the last 4 years that she got involved in that.
Fabulous woman, great sense of humor.
Meg Casey award
photo courtesy of Milford Citizen
When she died she was almost 30. The weekend of her death, Meg attended her brother T.J.'s anniversary. She was active, we were out the day before, no one picked up, she went fast it was a surprise. It wasn’t something the family hadn’t been through a hundred times before.
Meg’s own words to herself.
"I’m not sorry for myself"
"If I had had a happier life than normal people, I’ve had a happier normal life."
"I can accept myself and know my capabilities. I know that it is alright to strive for dreams and I can do anything that I set my mind to it."
"I learned how wise my parents are. And I become more and more like them everyday."
"I hope to do something worthwhile with my life. It is the way for me to go in a way which I can be proud of being unique.”
What shaped her was family, my mother, my father. Stay together, being strong. Treating everybody fairly, not treat her as unique or special. to grew up normal. Which one of us is handicapped? Not Meg Casey's outlook on life.
