Handicapped Heaven
photo courtesy of the Casey family
Handicapped Ramp To Heaven
Disabled Depression
February 22 1984
Dear Miss Casey,
When put in comparison to what some other people must endue day after day there does always seem to be someone who is worse off in the world. People should count their blessings, but if they don't they can count on an answer from you worded as only you can.
Just when I could cry you make me laugh and suddenly I see your point! I've need those laughs, thank you!
Meg, my own problem is about someone very special to me who has been around me virtually all my life. It is my brother and I idolized him. Nothing and no one was ever too big or tough for him. No one ever noticed for how long that he ran a little different from the rest of us. The girls loved him and he even married the prettiest girl in his high school class.
A while back his condition became active again and his own physical differences have worsened and multiplied. His whole person has worsened. Meg, he is so bitter! Every relationship close or distant has suffered including his wonderful marriage to a woman who truly adores him.
He makes life miserable for himself and all around him. I miss my brother and the spirited child that always looked at me through the eyes of the man my brother became. Your own acceptance of life must hold something useful for him to relate to and find hope in.
G.
Dear G,
Thank you for such a generous tribute. I hope my words are worthy of such praise and you are able to find help through my attempts at commonsense answers.
Your brother is going through a mourning period. Not much different from the kind going through after the death of a loved one. We can find beneficial results in short term self pity I believe. Some of us take longer to recover than others. Have patience.
We all have our secret dragons that we hide away from the world and do silent battle with in the dark recesses of our minds. Perhaps the little boy who was your "big tuff brother wasn't so big and tough after all. Perhaps it was all a façade to hide how frightened or self-conscious he really was. Perhaps he has only come to realize he was only acting back then, and the future frightens him. He may fear horrendous scenes of peer and social ridicule and be suffering all over again the emotional insecurity of his youth. He may be rejecting everyone in his world in an attempt to reject all of you before you can fulfill his nightmares and reject his new image. He may fear that he might no longer will attract his wife or sister or friends.
I never had a sister relationship like yours but my brothers could straighten out my "axis" whenever I spun out of line. Do as they do box him "up side" the head (verbal beatings) and tell him "you better straighten up quick!" It seemed to work with me and you may shock him of it for a while.
Hostility may be his only defense left. Love is stronger. I think if you show him this letter you wrote for his sake and kiss him like the adoring little sister he knows so well you'll win a big victory for both you.
Shake your brother away from the torment of his nightmares. It would take a good strong shaking to do it. Help him to sort the realities of his loving relationships from this magnified nightmares of his fear. Whatever he does he'll always need your support system.
Media Leeches
August 31 1983
Dear Meg,
Recently my family suffered a personal tragedy. I will refrain from going into the specific details and were unable to cope with what we considered to be the pushy and insensitive behavior of press people who hounded us day and night by phone and with unannounced visits on our doorstep. They have even gone after our nearest neighbors to ask probing questions in case they have any insight to our private feelings. From all of your experiences with reporters I was hoping that you might be able to tell us how to put a handle on this difficult situation.
Dear …
The actual reasons that you are getting this unwanted attention might differ from the ones that contributed to my own publicity. The feelings of hurt and frustration generated by the annoying experience of being personally invaded are easy to relate to.
This is a perfect illustration that physical differences in people don't necessarily alter the similarities between human emotions and reactions to events which occur in a lifetime.
I have been very fortunate to have had "causes" that I could deflect some of the my personal publicity off onto in order to ease some of that sense of being sucked apart by "leeches." You obviously haven't had a buffer to use like that but I tell you that I don't know how I would have would withstood it all without one.
It's been three years since my circus 1st began performing. There are definitely days when all I want to do is cry and wonder if the pressure of "Newsiness" will ever wear off. Some reporters, photographers or cameramen and some of those press people have become good friends of mine. These last few souls have managed to redeem their journalistic profession in my eyes so that I will tell you that they are not all "ignorant bores," out to get anything that will sell a newspaper. Occasionally decent qualities come shining though.
Instances like the National Inquirer reporter showing upon my desk just as I was about to lay back in the sun simply have to be dealt with quickly. In spite of repeated refusals over the phone or by mail some people won't take no for an answer. So kick them out. Hang up and don't answer any mail you don't want. You can't be guaranteed that it will always work the first time but most times it will. The ragtag papers are the worst because sensational garbage is their mainstay. That is why I so vehemently resented the sensation of being watched in a private moment that I needed and had really been looking forward to. Instead I had to slip off to a long distance friend's house for the weekend because the sanctuary of my own lovely home have been invaded for that time.
Yes ma'am I understand your situation. My only advice can be to stand your ground and speak to whom you want when you want to. If you are unsure make them tell you why they want to do the story. This way you'll be able to see the angle they are leaning toward. If you're still unsure, say no. This way you'll never regret your decision.
Before agreeing to an interview, research the reputation of the news outlet to see if they report a story with an obvious bias/agenda or tend to sensationalize for ratings. Even when shielding yourself with a cause, wrap a story around any statistics so the facts hold the interest of the average person.
Expecting Abnormal Child
October 26 1983
I am an unmarried 15 year old girl who was told that I may have an abnormal child. The father ignores me and my parents don't know yet. If you could envision yourself in my shoes what choices would you make for your future? I have to make my mind up quickly as that I am so far along. What shall I do?
B.
Dear B.
I am really very sorry that you are going to this hard time feeling so alone. It has taken a lot of soul searching to come up with some some semblance of an answer for you. This is an extremely controversial subject for me to bravely tackle, and I am a bit afraid of it myself. Therefore, sweetheart, I can't even imagine what I would do if I were really and truly in your position. The suggestion has got me mentally and physically sick.
If you're looking for some written permission from me to either have an abortion or not, I can't give it. It's not my place to give permission to anyone on this issue because the laws are quite open about terminating a pregnancy for someone in your circumstances. The choice in the end must be made by you. I don't envy facing that day.
I would suggest that you be very certain that the path you choose to follow to is without a doubt the way you want to go because on many of those roads there is no turning back. If you should some day wish you had guilt is very hard to live away!
The threat of bearing an abnormal child without any definite statements on the severity must be very frightening for you to think about dealing with. Especially without any moral support to comfort your troubled head. Speaking from my situation, as you put, I might not be here to answer your letter if 29 years ago there was a test to detect progeria and my parents were given the grim medical prognosis of the condition and the medical profession checks to be had.
I am very physically abnormal as is predictable. I am living a healthy, happy, active adult life which was supposed never to happen. Yes, I am very physically abnormal but that does not matter. I could introduce you to many people who have found a ray of sunshine on their chosen path. You should too.
I hope you straighten things out with the father because you'll need support to the struggles to come if the father won't. If it shouldn't work out find someone else to talk to. Your priest or minister, a friend, your parents, a family counselor - or me … and I wish for you only the very best.
Melodrama Is Not My Speed
August 10, 17 1983
Dear Meg:
How have you dealt with the thought of death when you have been told that most progeriacs die while still children? With the exception of you this has been true, but even you are not expected to live out the life expectancy of a normal adult.
Dear Concerned Parent:
This question always strikes me as being so ridiculous but everybody asks it. How does anyone deal with their death announcement?" You make it sound as if someone is standing there with a stopwatch and whistle, shouting the time at you as you race around "the great track of life." Melodrama is not my speed never mind, dealing with death, how in the hell do you handle the thought of living with that kind of self abusive attitude? The mere thought of existing under that sort of constant nagging pressure would drive me to shoot myself with the starter's pistol!
I don't think about death unless the subject is brought up. Even then it usually isn't in relation to me but if it had been, my own death has never been something that I've dwelt upon. And for good reason, I didn't find out that progeriacs die as children until I was an adult! No one has a guarantee for longevity. Most adults find it hard to cope with the news that they only have a limited amount of time left to their lives. The main problem is that when people hear the name of some terminal condition they instantly think DEATH!!! The echo of the death knoll deafens their ears to all of the positive sounds in the statements like "You have six months to live, maybe more … I can't guarantee …" And they proceed to die for six months or more until the end and does come, possibly years later, but they have put themselves through such mental anguish on top of the physical discomfort worrying about what it is going to be like when it actually happens. They have also missed out on their last chances for joy and laughter, only to experience that misery.
Not me, I intended to cram every second of fun into my days in the sun. If I'm going to be hit by train I don't want to watch! If I can't be pulled out the way in time, shut up! I don't need any fortune tellers describing my final scene and ruining every decent nights sleep I have coming to me until then - "When my number is up lord, just let it be quick!
Not everyone is as fortunate as I to be able to treat this issue by feigning ignorance of such possibilities and luxuriating in flippancy. For some the reality of those possibilities cannot be ignored, physical pain and suffering is a constant reminder.
The tone of the way in which I worded my reply told as much of how I personally deal with the subject as the content of my answer did.
My flip remarks lightened the seriousness of the topic and answered the question as honestly as possible while using the technique of quick, blunt answers which would have the closing effect of one of two reactions. 1) Hopefully, it took your breath away then made you burst out laughing - or 2) You were shocked into silence. Either of which has the desired result of distracting everyone long enough for me to move onto "more fun things."
After all, the question was asking for my own personal methods, and "them's it!"
To some that kind of attitude is a way of running and hiding so that a person doesn't have to face an unpleasant reality. To others such sarcasm used for this sensitive and heavy subject seems offensive. Then there are those for whom the ability to block out pain and or cover up hurt is only a dream that they have nightly.
I am an incurable optimist as well as "a bald and wrinkled dwarf" whose "wizened face" reflects the inner wise-alec resultant of the tumultuous experiences of a "prematurely turning 271 1/2 years old" (in dog's age).
After reading descriptions like that of what progeria reportedly has done to me, I'm supposed to take life seriously? Guess again!
I've been very fortunate in my life that I have been been able to remain gay and relatively carefree because I have never been sickly. Is not my nature to mope about nor to dwell on negatives. I feel that to do so is unhealthy in itself. I also believe that you can talk yourself into feeling sicker than you need to be as well as distract yourself into very high spirits.
In the end whatever methods work to make coping with existence a little easier for you is your own business. As long it isn't infringing on anyone else's space in time, it's fine. However, if you feel inclined just try treating your attitude well instead of your ailments.
You'll soon see the light that is the sunshine!
Over At Jesus' House
December 29 1982
Dear Readers,
When we lose a loved one to the arms of death is hard to bear. When that person is a child it is easily found unacceptable, especially so in this holiday time. With the beginning of life so acutely in my consciousness, the stark reality of it and think least me numb.
It is known that I have a rare condition known as progeria. This past June, a "Gathering" took place at a lodge in the Pocono Mountains of Pennsylvania where eight people with progeria came to meet one another. The ages of the special little people ranged from 2 to 26.
This wonderful week was sponsored entirely by the Sunshine Foundation of Philadelphia.
One of the children I met there was a young lady of 14 whose name was Tami. The love in this family radiated from Tami's eyes.
I was doubly impressed with Tami's being because as much as I seem to have escape the painful symptoms sometimes found in progeria, Tami seemed to have experienced most of them. In essence, she could have been my flip side.
This fall Tami passed away. A "typical" statistic for the medical chartings, but she was an outstanding example for all humanity.
I share with you a letter from her family that they sent to me in a Christmas card.
Dearest Meg,
Just want you to know I think of you often, and appreciate your friendship. We also pray that you feel God's presence with you from day to day, no matter the circumstances.
We really feel fortunate in getting to meet you and your family. Tami enjoyed it so much. I hope we can I hope we can continue to keep in contact with you even though Tami is gone. She really isn't far away as our 3-year-old says, she's "just over at Jesus' house."
Christmas won't be the same this year at the house, but knowing she is in heaven, without pain, and a new body, lessens the pain we have in our hearts.
We have had a lot of new adjustments without her and some days it's almost unbearable, but we found that God's grace is sufficient for us! We really feel honored to able to be her parents, God must have had faith and trust in us.
Tami went to school up until the last day she loved to go to school and was doing real well with her work. We were overwhelmed when nearly 500 people came to her funeral. She has been an inspiration to a lot of people, just like you have been to us. Continue to keep your positive outlook on life. Tami started to wear make-up after she had been with you. She had a lot of fun putting it on.
Feel free to come out and see us anytime. We would love it! You would love Nebraska too!
We wish you the best in the year to come!
Love ya,
Karen
Do you want to know what I think was the secret to Tami's strength? She was loved and she KNEW it. The secret to her family's strength will be in that; she was loved and THEY knew it.
The one major point made clear to us at the Pocono gathering was that a handicapping condition does not just happen to the individual, it affects every member of the family and other loved ones in some way. The attitudes of the family unit play a vital role in how life is dealt with by all concerned.
So take care of each other and have a happy New Year!
Alicia Mourned
April 25 1985
Hello Readers,
For those of you have it with been following the progress of the children who have Progeria over the past four years, it is with great sadness in my heart that I now make this updated report.
On the evening of Sunday, April 14, 1985, young Alicia Gowans of San Jose, California, passed away after suffering respiratory problems and subsequent heart failure.
Alicia was of Mexican-American descent and had just recently celebrated her 15th birthday on February 20. Alicia will always be one of mine. She was the first of the children who I had met back in 1981.
"Little Ricky" was Alicia's 4 year-old pal who, when it was time to leave the funeral home, said "Mommy, Wake Alicia up – it's time to take her home." She is also survived by many loving friends who will miss her greatly at the fourth Progeria gathering this June.
Meg passed only 6 weeks later from many of the same complications as Alicia.
The Me In Me
Meg Casey's eulogy in her own words (written at age 22 - before she went public )
I'm an artist and my favorite media in which to work in pen and ink and water color. I used to do oils but there I was dependent on others I want to be independent. If the top of the tube was on too tight or the turpentine too heavy or I needed an easel moved, I needed someone, and someone wasn't always there. So in frustration – not because I didn't enjoy oils, but because I couldn't be sure that the help I needed was always on hand – I stopped doing them. I am creative and enjoy all kinds of music. I tend to do things in spurts, full of enthusiasm. I'll do it every free moment I have until I tire of it and go on to my next spurt.
I am proud, sometimes stubborn – an independent personality stuck in a dependent body. Those family traits have gotten me into trouble from time to time and will doubly in the future. They've also, along with the constant love and encouragement from each individual member of my family and from my friends, helped me grow into the young woman I am today. They've enabled me to look back upon my life and unashamedly and almost unconsciously point out all my of physical problems. There are obvious anyway but people are curious about "points of interest".
I'm not sorry for myself; it wouldn't do me any good if I were. I've had a happier and fuller life than many "normal" people and I've learned to accept myself and to know my capabilities. I've learned that it's alright to strive for dreams; that I can do anything if I set my mind to it. I've learned how wise my parents are and I'm becoming more and more like them every day.
I hope to do something worthwhile with my life. It's the way for me to go and the way in which I can be proud of being "unique".
A Daughter Remembered
May 29 1985 (3 days after Meg's death)
Dear Readers,
Meg is gone but she has left such memories and done so much good in her short life. We cry for ourselves but not for her because in every minute of her short-life, she lived … she lived for others, to make this a better place for all.
How do I write this, her last column, and say the things she would have said? I don't know. She had such a special gift, but, of course, she was a special person.
As it was said when Meg was presented The 1984 Fear Champion Legion of Honor Award – "We honor her, not merely for her intelligence or charm or assertiveness, we honor her for choosing life in all its fullness. for rising above the confines of time, space, and body, for teaching each of us what true transcendence means - to be all that we can be, to live with spirit in the Spirit and to reach out to embrace that the lives of others with that heartfelt concern we call "Love." To paraphrase Shakespeare – "This is the noblest wrinkle of them all." She especially … who in general herself thought and common good for all in all of us. Her life is gentle, and the talents as mixed in her nature might stand up and say to all the world – THIS IS A WOMAN!"
This was a woman whose favorite quote was "I asked God for all the things that I may enjoy Life: God gave me Life that I like to enjoy all things." And she did! She loved life, she loved people, and especially she loved you her readers.
I thank you for her for all your letters (They made her feel so good) and ask that you pray for her and most especially for us that we accept God's will. It's going to be very hard.
Sincerely,
Meg's Mom
Milford Citizen Editor's note: Meg Casey died Sunday May 26 1985 at Yale-New Haven Hospital following acute respiratory problems. Her mother, Margaret Casey, submitted this column for publication and asked that Meg's photo be included.
