December 24, 2003 by

Julia Tavalaro

42 comments

Categories: Extraordinary People

Julia Tavalaro, a wheelchair-bound quadriplegic who eventually wrote her own memoirs, died on Dec. 19. Cause of death was not released. She was 68.
Tavalaro was a young mother and wife when she suffered paralysis as a result of two strokes in 1966. Although she spent seven months in a coma, she eventually woke up, fully conscious and aware, but unable to communicate with anyone.
For six years, she stayed at a chronic-care facility in New York where the medical community declared her to be in a vegetative state. However, Tavalaro could understand and remember. All of her senses were intact. She could even move her head and eyes. She was a prisoner in her own body.
In the 1970s, speech therapist Arlene Kratt discerned cognizance in Tavalaro’s eye movements. With the aid of therapist Joyce Sabari, a rehabilitation program was designed to help Tavalaro communicate. They trained her to use eye movements to point at letters on an alphabet board.
Eventually, she learned how to touch a switch with her cheek, which maneuvered a motorized wheelchair. The switch also operated a computer. Tavalaro used that computer to write poetry, and with the help of writer Richard Tayson, she penned her autobiography, “Look Up for Yes.”
Tavalaro spent the rest of her life in a private nursing home. For the past few years, she was able to leave the facility for occasional visits.

42 Responses to Julia Tavalaro

  1. lorraine frank von frankenstein

    I have just finished reading the fascinating book Look Up for Yes, and i am very sad to hear about her death. Julia Tavalaro was an exceptional lady and she should always be remembered.
    My best regards to her family who should be very proud of her.
    A fan from Germany

  2. Scott Sutherland

    I, too, am saddened to hearing of Julia’s death. I am an instructor in a healthcare field. I am making Julia’s biography, “Look Up for Yes” required reading for my students. Their response is very positive about the affect her story has had on them. I am attempting to make the other healthcare departments at my collegealso make it required reading for them as well. Julia’s story is an inspiring, but very much an “eye-opening” experience. She is a real tribute to what determination and spunk can do to change one’s life and to find meaning from all the “bad” that comes our way. I will miss you, Julia.

  3. Dodie Serafini

    I am a nurse that works with patients that have suffered severe strokes or brain trauma and have locked in syndrome. I read Julia’s book as a project for a graduate school class. It was emotionally moving. I am prparing a book report that will be presented to a group of nurses. I cannot help but believe this will inspire them and move them to work with patients differently. We are all graduate students with the emphasis of our education on nursing education. As nurse educators we will have the ability to request students read this book. I would anticipate Julia will influence nursing.

  4. Maria

    I am sorry to read about Ms. Tavalaro’s passing. I read her book three times. She was a fascinating woman who most deffinately should be remembered for her bravery, determination and strong will to push forward. I am sorry that I never met this wonderful woman who is an inspiration to me.
    God Bless Julia and her family.

  5. Jillian

    I am an occupational therapy student at the university of the sciences in philadelphia. I read Julia’s book as part of a project for a disability narrative. Julia was a wonderful woman, but I would not forget to acknowlege Arlene Kraat and Joyce Sabari. I think this is really a message that shows how powerful occupational and speech therapies can be, and many people have not even heard of them. Julia, you became an inspiration to many.

  6. Charlotte Haupt

    I am from Germany and here Julia’s book is called “Bis auf den Grund des Ozeans” and today i finished it the third time. I think Julia Tavalaro was such a great and strong person and everytime i read the book i got goose- flesh. I am working with people with brain trauma and the book shows how important it is never to loose hope.Respect to Julia Tavalaro, God bless her.

  7. Shailesh

    Just finished reading her book. It is part of the ciricullum at the Baylor School of Radiologic Sciences. I cannot believe what she went thru at the hospital. May her soul rest in peace.

  8. Sally

    I just read MS. Tavalaro’s moving and heart touching book “Look Up For Yes”!! It was very inspirational. Julia was an exceptional person. I work as a nurse and after reading her book, you are more able to understand and value your patients than before.

  9. BETH CAROL

    I heard of Julia’s situation on “Beyond Chance” and wrote asking where I could write to her. I found out she was a resident at the Beach Terrace Nursing Home. I got to talk with her niece and her friend, Joe. In my own way, I spoke to Julia directly at Joe’s home, wrote letters, and sent pictures, stories, poems, books, and cards to her. She sent me a Christmas card and a Thanksgivings’ Day card that I will cherish forever. I read her book and was inspired by her courage and wisdom. She was special, and she left an impressionable mark on my life. In our way, we were friends being we never met. I will always cherish our friendship.

  10. Kendra O'Connor

    “Where there’s life, there’s hope.” Julia’s biography is inspirational, encouraging, convicting. I want people to read this book and to love their brothers and sisters in a real, tangible way. I want people to cherish life; it’s God-given. Remember how important quality time and touch and tenderness and talk were to Julia. They’re important to us all, aren’t they? Let’s share them!

  11. Elisa Fierro

    I have just finished Julia’s book “Look Up For Yes” and I have no words. It’s one of the most beautiful, moving and comforting books I have ever read. I have just read about her death and I do hope that it was peaceful and painless.
    Thank you and rest in peace, Julia

  12. Anne

    i just finished ready Look Up for Yes & thought I would look up to see where she was at today & read that she had passed away. What a sad but wonderful story. I work in a nursing home & am sure that the residents all know what is going on.
    Thanks for such a wonderful read Julia & Richard

  13. bridget mani

    I have just finished reading Julias book, “look up for yes”,although I have just found out that she died over ayear ago,I would like to express my admiration and thanks that she was able to communicate her experiences(!) to the world.

  14. Nicole Rondeau

    I am very sorry to here about Julia’s death i’m currently reading “look up for yes” Everyone needs to read this book to realise how lucky they are

  15. Sandy Caudell

    I had listed Julia’s Book “Look up for Yes” on our website and just finished reading it. What an inspiration and a “must read” for anyone dealing with those who have suffered a stroke, whether professionaly or personally. God bless Julia and also Arlene and Joyce for their care and insight into Julia’s disabilities and recognizing that she understood what was going on.
    Read it!

  16. Angela Williams

    Back in 1998, Reader’s Digest sent me a book with four novels in it, respresenting the “best nonfiction” at that time. I finally got around to reading one of the books, “Look Up for Yes”, and decided to to see what Mrs. Tavalaro was doing these days, and whether or not she’d written more poetry. It is so sad to see that she died three years ago. The treatment she endured from the nurses was horrendous! Her story has changed my own behavior towards the disabled. I no longer pretend I don’t see them. I look at them and speak to them whether or not I feel they can understand me. I’m sorry Julia became a mute quadriplegic, but I’m glad she was able to have such an impact on anyone who’s read her story.

  17. vickie

    Just finished reading Julias’ book & wanted to find out if there was a way to let her know how much it touched me.I was saddened to learn that she passed away, but I know that she is watching over us,& that from that place, she is laughing & walking in a perfect body.God bless her for her courage & will.I am a nurse who will,from this time forward, always strive to see the person inside & treat each person with the dignity & respect all of us want & deserve.Thank you, Julia! 🙂

  18. james m kolb

    James is my son & we met Julia @ her neice’s home in Massapequa Park. Jimmy(James) wrote to Julia in the Woodmere Nursing Home & her neice phoned
    us that Julia would be visiting her in Mass Pk. We were able to visit after Julia had her lunch that day. Our son Had seizures that day so he did not get up on the stoop BUT I DID AND A GIGANTIC W O W — what a lady JULIA WAS & STILL IS FOR US HERE. JULIA HAD HER POWER OF ATTORNEY INSCRIBE OUR “LOOK UP FOR YES” “TO ANOTHER KINDRED SPIRIT”.
    we just learned of her death & grieve with you all. Is her bk of poems out – what is the title & where can we purchase it???
    WE ALL GRIEVE SO VERY MUCH FOR ALL OF YOU!!!!!!!!jULIA WE SORELY MISS You lol, lol, lol
    this was truly a shock as we wrote Julia but – noiw I understand – no answer came. GOD BLESS JULIA ALWAYS – a true SAINT IN HEAVEN –
    Gods Speed — hope YOU are one of Jimmy’s Angels.

  19. Baynon

    I have not yet finished reading “Look up for Yes”, but went online to learn if Julia Tavalaro was still living, and read of her 2003 passing. The photos in the book were a surprise of images springing out from the field of text, almost of their own energy. Part of the enjoyment was that I had not expected them, and appreciated seeing the life and spirit of a younger as well as posttrauma Julia they depicted. Julia’s telling of her extraordinary survival, imprisoned in her own body year after year, awake with no voice, subject to the inconsistent values of caretakers who were prisoners to their own limited values until wrested from that sleep–from there, to inspire persons and parts of healthcare systems around the world as an author with the skilled assistance of Richard Tayson–one wants to say something to celebrate both their voices. There are cultural levels in society–from medicine to business to academia–where her life could inspire persons to be more watchful of their actions and decisions, more transparent and more honest in their own lives towards others, particularly regarding those who must trust in authority to have a future–this inspiration could reduce much suffering; I know. Julia’s memory of floating above herself and looking down on her caretakers as they worked to save her life, though an event not uncommonly written about in current literature, challenged my personal beliefs in that possibility. But if so, I ‘reckon Julia would be able to hear, one more reader of her biography say, “Thank you for all of who you were while you were here, dressed with your physical body, and for what you have left behind for those of us who require still, inspiration to move through life with what we must carry.”

  20. John

    I don’t know if any of you will believe me. That’s not the point of this post. My name is John Tropiano Jr. I am the son of Linda Tavalaro, a niece of Julia’s. I have read all the tributes here, and I am truly touched and I can almost feel the tears and emotions come again. Julia was larger than life. I had spent many a time with her. She was a wonderful person, I will show this to my mother, I think. I don’t know how she’s going to take it other than very emotionally upwelling. She loved Julia and was with her at her last moments.
    I can only hope each of you takes a little something from her book, as much as I have taken from her presence.
    –John

  21. David Pennington

    Why am I weeping as I write this? What kind of tears are these– can I find them a name? Why does Julia Tavalaro’s voice resonate so strongly?
    Because I know the sound of the silent scream; the echoes of despair banging around inside my skull, knowing that my condition was irreversible and praying that my last breath would be the next. I know the freezing cold pain, the burning unendurably hot nights; the slowly stretched-out years of mental darkness, thick with the black tar of suicidal fantasies. These are tears of empathy and solidarity that nourish the hope that the voice I have found will be not only heard, but there is profound joy in realizing that there are others like Julia Tavalaro who speak this language fluently.
    These are good tears; tears without whine or misery, tears to wash my hands and face and mind with; tears that refract the lamplight and turn to diamonds on my cheeks.
    The strokes that left Julia Tavalaro locked inside an almost completely unresponsive body gave her an opportunity to make a clear choice to “–work for happiness or die.” These five words should be mixed into baby food, posted along every highway, written across every newspaper headline and chanted in every church. The platform of every political party should include these five words in its motto. Kindergarten children should hold their hands over their hearts and sing “WORK FOR HAPPINESS OR DIE!” These words are the Pledge of Allegiance and the Anthem of Hope for any of us who expect to have more than a vegetative existence. Whether we are a Bill Gates, a Billy Sunday, or a Joe Blow, if we expect to lift our faces to the light at all; we can escape the numbing illusions that knowledge is wisdom, that control produces contentment and that the purpose of life is to accumulate material “stuff”, we all get to make the same career choice as Julia Tavalaro did. The obvious truth in her case was that she had almost no control over anything in her life except the decision to be happy. It is no different for us, however healthy, wealthy or wise we may be. I believe Julia’s voice will be heard long after what passes for newsworthy events have been forgotten. I will be reading her words again and again.

  22. Becky Hedgecorth

    Julia’s book taught me to treasure the little unnoticeable miracles in life, like my 18 month old daughter’s pudgy, sticky little fingers, carrying groceries up my stairs, or having a real, verbal argument with my husband. She was robbed of all of this and so much more; I will cherish the insignificant, the inconvenient, even the mundane as a tribute to Julia’s tragic, yet inspirational life.
    I never knew you, Julia, but I love you. Thank you for helping me realize the beauty in life.

  23. Jennifer Lazer

    I just found Julia’s book last week, and read it in 3 days – could not put it down! I thought she may have passed on since her book was published, and was very saddened to see that confirmed here. I, too, am very touched by her story. I also happen to be priveleged to work in the Department of Nursing at Mayo Clinic in Rochester MN; specifically, I work in a support role in the division of Education and Professional Development. I want everyone who reads this posting to know that I am going to see what I can do to spread Julia’s message loud and clear, and see what changes can be made in the healthcare industry! Much love to the memory of Julia, and to her family. I know your lives are diminished by the loss of Julia, but books are powerful and live on! I am most thankful to have found her book, I will treasure it forever!

  24. Yvonne

    Hey Julia, I have just finished your book, I have read it within 3 days… and I’ve been crying a lot of tears… for all the sadness, for all the lonelyness, for all the being desperate, being angry, being anxious, for the being separated from your beloved little doughter…
    You have died 3 years ago and I cannot get in touch with you anymore. I hope your dying was peaceful and I hope you have found your way to God. I hope you found a very good place in heaven, maybe you sit right next to Jesus. Or maybe you are running, flying, talking and laughing now.
    Love, Yvonne

  25. Luz de MarĂ­a Uzzell

    Dear Julia,
    I read your fascinating book during the year of 2001. I haven’t forgotten about you or your book. I’m not much of a reader, but your story, your book, made an impact on me. I happened to be looking up your book again in order to introduce it to my mother, and I’ve just found out that you have passed away in 2003. I want to thank you for sharing your life with the rest of the world. You were a courageous woman and a rol model for humans to follow. I trust in God that now that you have gone to another dimention, that you know about the many people, including me, that admire you. I’m sure you’re in a better place now, where there is no more pain, no more tears, no more desperation. Amen.

  26. Catherine

    I just finished your book, Julia. I read it in a little over one day. Couldn’t put it down. Then I went to the Internet to see if I could find out where you were and found that you had passed away. I am sorry we were never able to have contact, but I pray that you are in heaven now with our Good Lord and all others whom you would like to be with. I envision you talking, laughing and being able to enjoy the simple pleasures of life such as touch that we all take for granted.
    What a wonderful human being, and such an example for the rest of the world.
    I pray that you passed to the next world without pain, and that your Grandmother was there to welcome you to The Lord’s Kingdom.
    God bless you Julia.

  27. from Germany

    Like so many commenting here, I just wanted to say how very touched I am by Julia Tavalaro’s book.I read it for the second time today, the first time I read it I was only about 13 years though and did not really understand it all. So now I went right away on the computer to find out if there existed a way of contacting her, and I am very sad to have found out that she passed away 5 years ago. This is for you Julia Tavalaro- who opened my eyes for some of the most important things in life-being brave and strong-minded, never giving up on yourself and being thankful for the smallest thing. Thank you, Julia Tavalaro!

  28. Chris

    I have just finished reading “Look Up For Yes”.
    It is a very inspirational book for me. Many times I say to myself, “I cannot do this or that, because I have a little cold, or because I am a little tired, or because I just don’t feel like it at the moment.”
    I am really ashamed that I can’t get my act together and do the things I know I should be doing.
    I really need to see Julia Tavalaro’s life as an example of what true and undeterred determination can look like.
    I am grateful that I found my way to her biography, although it was very difficult reading for me, emotionally.
    And, I am saddened by the news that Julia Tavalaro passed away. She was a bright star in our universe of many potentially bright stars.
    Thank you.

  29. patrice

    I was privleged to work with Julia for over a year back in 1999. Her amazing spirit, extremely strong will and sense of humor will always be remembered! She was a woman who loved life to the fullest, despite her challenges! She inspired and challenged all whom she met ! She would be amazed that her story has touched so many lives.

  30. Chantelle

    Like so many others,I too have been priveleged to have discovered your autobiography,read it in a day,went to search for you on the net,and of course you are no longer in this dimension.Once again,mankind’s filthy underbelly has been exposed.People that are employed as ‘caregivers,nurses,doctors,etc,shoud be assessed by psychologists before they are permitted to study.Those with no/very little compassion should not be permitted anywhere near ill/damaged people.Yet,there you have it.Julia,how you got through the day,for many years,is just beyond my comprehension.You didn’t become cynical or bitter.That alone puts you in the league of Angels & Saints.I have absolute respect for you.I can see you released and free – bless you!And may we all learn from your experience.You are a shining light – live on.Thank you for sharing your life,will spread the word so that many more can experience your previous reality.Bless you Julia.

  31. Nancy

    Ijust read on the internet about Julia. I had never heard of locked-in syndrome until I saw an episode on the t.v. show House. I think may have been what was wrong with my mother, but the doctor was so quick to give up on her. I intend to go purchase the book LOOK UP FOR YES. May GOD bless Julia.

  32. Eve (Moms Hugs)

    To Julia’s Family & Friends –
    I picked up “Look Up For Yes” at Barnes & Noble when it was first published, and could not put it down. I bought it plus several more to give away, one to my son, a urologist. I hope Julia came to know how many lives she touched & changed through writing this book. She will always reside in my mind as an icon of courage & determination.
    We need to remember two wonderful women – Arlene Kratt and Joyce Sabari – Julia’s saviors. Without Arlene’s wisdom to “see” Julia, we would never even know Julia existed. With Joyce’s expertise to help her communicate, Julia could tell us her story in her own words. We might still not know Julia but for a gentleman who helped her write a book & get it published.
    We may not realize who, when or how we help someone live a better life, but Julia’s story reminds each & every one of to never pass up the opportunity to do so.
    I was saddened to learn of Julia’s passing and hoping to find a foundation was established in her name. The books are selling for high prices as collectibles now, some are ex-library books, which does not seem right unless the sellers are paying the profit into a foundation to help others like Julia.
    Love & hugs to the family & friends of this dear, dear lady. ~ Eve

  33. millie mann

    Julia’s life was a joyful adventure! A life worth living! How many other’s have never had the opportunity to be noticed as cognizant? Thank God for these therapists that could actually see Julia
    instead of the disabilities that Julia did not allow to define herself or her life!
    Julia, you were and most probably still are incredibly beautiful! Love M.J. Mann

  34. VIRGINIA

    ALL OF US WHO READ HER BOOK FEEL WE ARE JULIA’S FAMILY. HER SUFFERING AND THE IMMENSE COURAGE SHE SHOWED IN HANDLING THAT BODILY PRISON SHOOK SHOOK SHOOK SO MANY OF US.
    LORD, MAKE ME GRATEFUL FOR A BODY THAT MOVES,AND
    THANK YOU FOR GIVING US JULIA.

  35. Snupin

    My first impuls when finding out that Julia has died almost 7 years ago wasto cry…
    But maybe for her it was not such a bad thing?
    I dont know.
    I only just finished your book and had the urge to write to you, sadly I am to late.
    But I will say it anyway, Julia your story touched me. It left me happy and sad at the same time.
    Wherever you are now I hope you are very happy.
    Blessing and all my love to you and your family!!!
    Sincerely Yvie

  36. Tammy

    I just finished reading the book Look up for yes.
    So sad to hear she passed away a few years ago. Her book was amazing and uplifting. I am so glad I was told of the book and was able to read it. Rest in peace Julia

  37. Amy Lofthouse

    “Look Up For Yes” is required reading for one of my classes I’m currently taking. (Heading towards bachelors in RN specializing in Nephrology)
    What an amazing story Julia had to share with us. I, too, was sad to hear of her passing. I realize this was 7 years ago, but there was a glimmer of hope she was still with us. Through her words, I could feel her spirit. There were parts of the story I wanted to climb through the words in the book and slap the nurses/aides. By the end of the book, I felt at peace that she was at peace.
    My niece suffers from Rett Syndrome, which is the most severe from of autism that mainly affects girls. She doesn’t speak, she can’t walk, and needs 24/7 care. I always wonder what goes through the mind of our beautiful angel. I know soon we’ll be able to communicate with her (we’ve just received a computer that helps her choose words she wants to say with pictures, but she is only 6 years old). I can only hope that if our angel were to end up in a Long Term Care facility, she were to have the strength and wisdom that Julia had.
    Thank you Julia up there in heavens and in the stars for sharing with us your stories and your amazing poetry. You’ve taught this nursing student so much. Much, much love to your family!

  38. Alex

    I ready Julia’s book several years ago. I have worked as a social services director in a nursing home and am now a private consultant. The visions of the treatment Julia received make me shiver and shake in anger. This book clearly demonstrates that no matter the illness, debility, or stage of life, we are all human and should be treated with dignity and respect. God Bless Julia…may she always be remembered. I also applaud Arlene Kraat, who through compassion and forsight gave life to Juila…and hope for so many more.

  39. Marie Scarlet

    I read the book Look Up for Yes twice couple of years ago and when I was going through my old books, I came across it again. Well, I never forgot her since the first time I read it. For me, she’s really an inspiration… Its so sad that she’s not here anymore, but I would say a part of me says I’m happy for she will no longer be a prisoner of her own body… I am an occupational therapist and I would say that people behind the book, all those who helped her are all incredible and I am proud of them… I pray that Julia is happy now wherever she may be…

  40. linda

    It is 5-22-11 – Last night I read Julia’s book in “The Best of Nonfiction”. I cried more than once at the horror of the way she was treated by “health care professionals”, but I cried with joy at her triumphs. On 10-14-10 I had a mini-stroke (I’m 65). My blood pressure was so high I was transported by helicopter to a University Hospital in Birmingham, AL. I couldn’t move my arms or legs and my speech was so garbled it was incomprehensible, BUT like Julia my mind was sharp as a tack. I knew exactly what was going on. Incredibly, some of my health care providers (once I was in a room) treated with me with total indifference. And I too got angry. I did recover quite quickly and I often reflect on how uncaring and rude some of my caregivers were. Julia’s book ought to be required reading for any person enrolled in any kind of health care program from nurse’s aides to brain surgeons. They will all learn how far a little compassion for a patient can go.

  41. Sharon Cooper

    I read Julia’s book after a TV spot on Dateline years ago that highlighted her book. I was able to purchase her book recently and plan to share this with others I know in the nursing field. Thank you Julia for sharing your life. I am sorry to hear of your passing but would like your family to know that your message is still being read by many today.

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