Posts Tagged ‘caregiving’

Thursday, February 22nd marks the 20th anniversary of Michelle’s accident. For over 18 years she has been living at home with us. This is not the life we would have chosen but it is the most meaningful life we could ever have. All of the pretenses and posturing that occur in every day life have been stripped away. We are living with someone who wakes up every day with a smile and thanks God that she is still alive. She tells us how she is surrounded by love and lets everyone know how much she loves them. Being in her presence brings out the better part of all of us. When she was unconscious our neighbor, Charlotte Baecher, wrote a poem that describes the transformation Michelle has brought to all of us:
In her sleep
her spirit is one with His
both so alive to the other
What immense transactions are going on
by mind and urge and sight
a complete “hearing” and surrender,
a knowledge we cannot know or guess.

But now we ask Him, please to bless
her even more – and give her back
to us and all distractions
a messenger transformed by you
to lift us who love her
to where she has been.


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Update: PBS World “Your Health: A Sacred Matter” with LOC Marilyn Martone to air July 7
June 22, 2017 News 0

A reminder that Lady of Charity Marilyn Martone and her daughter Michelle are featured in a new PBS documentary film called “Your Health: A Sacred Matter”. Marilyn will speak in the section on caregiving (about 12 minutes towards the end of the film).

Friday 7/7/17 at 7 PM, Eastern Time
World Channel

The World Channel is found on many cable and satellite services; check your local listings or visit worldchannel.org to find the station in your area.

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The film, “Your Health: A Sacred Matter,” will be on the World Channel on July 7th. For FIOS users it is channel 473, for Cablevision it is 133, for Spectrum it is 1277. It is an excellent film on the relationship between religion and medicine and Michelle and I are in the last 12 minutes. Enjoy!


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I was in Houston Texas this weekend at a conference on Religion and Medicine. On Saturday evening there was the premier screening of a film entitled “Your Health: A Sacred Matter.” It will view on PBS in May and Michelle and I are in it as are some of Michelle’s team members as well as members of our parish. You can see the trailer at the following web site. You can also check the web site as to when it will be shown in your area. yourhealthasacredmatter.com

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I gave a talk last night on the family and caregiving issues. One of the attendees spoke of a company that allows employees to donate their sick or personal days to another employee who might need them. What a wonderful idea. It doesn’t cost the company anything and it builds solidarity. How do we turn this into a national movement?

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Thanks to all for the birthday wishes. Michelle had a wonderful birthday. In Michelle style, she always has a smile on her face. She brings us all joy.



Michelle’s Birthday 2014 Happy “38”


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It’s almost 16 years since Michelle was hit by a car and suffered a traumatic brain injury. Although she has multiple disabilities, she has taught us the true meaning of love. She composed a song, “I am Surrounded by Love.” She is surrounded by love because even on her worst days she teaches us what love is all about. Happy Birthday darling daughter.

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For those of us who are caregivers, here’s a sign of hope.

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August 5, 2013 by Marilyn Martone | Edit

The music from the local fire house’s annual outdoor party blasts from five blocks away. I imagine what it would be like to be there – talking, having a drink, and maybe even dancing. But I’m a caregiver and my daughter’s aide is on vacation this week. Besides I’d probably find it hard to go without my daughter because everyone else seems to have forgotten that she exists and I am her connection to the larger world.

Besides there’s too much to do. My husband is having surgery on his back this week and I need to take him to do his pre-op work on Tuesday and then spend all day Thursday with him at the hospital. I also need to take my daughter into the city on Wednesday to see her neurologist.

In a few hours my two young granddaughters are coming for dinner so my son, who is now raising the children by himself, can have some free time.

My husband also wants to know why I don’t spend more time with him and my friends are telling me that I need to take care of myself.

Just as I’m wondering who I should take care of first, my daughter gets a large gash in her knee as she is transferring into her wheel chair. Blood is gushing out all over. I rush her to the car and as I brace her legs for the transfer my white slacks get covered in blood.

Nine stitches and three hours later I return home. I’ve disappointed my granddaughters, my son, and my husband again. I clean up the blood, turn my daughter over to the evening aide who is not on vacation, listen to the music from the firehouse, and wonder if loving is always so fragmented and at times so lonely.

Posted in brain injury, caregiving, disability | Tagged Brain Injury, caregiving, disability, TBI | Leave a Comment

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The Mayo Clinic is in the midst of sponsoring a scholarship for their Social Media Conference in October. I am one of the entrants and as far as I can tell the only one representing brain injury. If you would like to see me win please click on the link and vote for me by hitting the like button next to facebook. If you are not on facebook you can also vote by posting a comment. Spread the word on your web sites. Many thanks.

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