Ireland, Scotland, and England

Synesthesia

Seeing Colors Inside the Music

My earliest memory of music is a purple acrylic music box my mom had that played Scott Joplin’s The Entertainer.  I remember obsessively watching the little metal bars strike each note and falling to sleep to the song which seemed to inject me into a vivid world of colors and imagination.  It was in front of my mother’s giant phonograph (that played 45s, 33s AND 78s) that I learned to appreciate the likes of Elvis, Frank Sinatra, and big band music of the 40’s.  Saturday Night Fever, Xanadu and Grease became my soundtracks through loneliness as a latchkey kid.  Carly Simon, Jim Croce and Simon and Garfunkel soon began to seep in with my sister’s influence.  My teenage years were defined by the 80’s British Invasion of New Wave and Punk such as Duran Duran, Adam Ant, the Cure, Depeche Mode, Bauhaus and the Sex Pistols along with cassette tapes of Prince, Genesis and the Police found in my other sister’s bathroom.  And YES, I did spend hours in front of the VHS learning the latest dance moves from Madonna.  In the 90’s, I experienced first-hand the rock/funk fushion of the Red Hot Chili Peppers, Nirvana’s angst, the melancholy of Smashing Pumpkins, whatever that was that Eddie Vedder was trying to tell us, and Tipper Gore’s distaste of it all. I am proud to have experienced live acts such as David Bowie, Rolling Stones, Chic, Sting, No Doubt and Beastie Boys.  Billie Holiday, Doors, Grandmaster Flash, Mumford and Sons, Lou Reed, White Stripes, Queen and Chopin grace my Spotify playlists. My appreciation of music spans nearly 100 years and almost any genre (ok not country).  This page is a work in progress to pay tribute for my love of music.

Malawi

Hello Friends and Family,
My dear friend Moses is a pastor in Malawi, Africa.  As many of you are aware, our family has been connected with him since hosting him in our home on his visit to Texas in 2009 and 2010.

We recently learned that his church in Mzuzu, Malawi is attempting to build a primary school.  When my daughter Aliya found out, she was determined to help.  We came up with the idea to try GoFundMe.  I have asked that he send pictures if possible.  We would be thrived to earn even a small amount to help educate children in Mzuzu. We plan to have updates of the project.

http://www.gofundme.com/school4malawi

@schools4malawi

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About Malawi

Malawi is a tiny country known as the warm heart of Africa. It is also one of the poorest and most AIDS-stricken countries in the world.  In 2007, my family hosted Pastor Moses from Lilongwe, Malawi in our home.  He was given a second chance to travel to the US the following year and stayed with our family once again.  Our families have remained friends throughout the years.

Last year, I was looking at the blog on American Occupational Therapy Association and noticed a post from Sue Coppola, the US delegate for the World Federation of Occupational Therapists (WFOT).  She visited Lilongwe, Malawi in 2012.  We have since been in contact and in 2013 formed the WFOT Malawi Workgroup along with other occupational therapists and stakeholders.  The purpose of the group is to begin the first university-level occupational therapy program in Malawi.  It will be located at the College of Medicine in Blantyre.  Please join our OT Malawi group on Facebook for continued progress.

Organizations for Malawi

MAPMalawi Against Physical Disabilities (MAP) sends teams to the outreach areas to meet and assess the needs of the people with disabilities in their communities. There, the therapists impart or train guardians and mothers of the disabled person on how to continue with treatment in their homes. In order to provide a cost effective service, MAP decided to employ rehabilitation technicians who are equipped with knowledge of physiotherapy and occupational therapy to be seeing the clients in the district hospitals and also carry out early detection and may be prevention of the disability where possible.  I have corresponded with the general manager of MAP on several occasions.  Our family adopted this organization for Christmas last year to provide funding for some equipment for children.  Here are some pictures from one of MAPs clinics:

Bill and Melinda Gates Foundation Impatient Optimists – Malawi

HOPE is a locally based non-profit in Malawi whose ultimate goal is to build a sustainable community center for single mothers, widows, orphans, elderly, and the visual/audio impaired.  HOPE will provide a sanctuary where education and opportunity will be accessible to those most vulnerable in society.

Raising Malawi is committed to supporting organizations and individuals who fight tirelessly to help the estimated 1 million orphans, vulnerable children, and their families and communities in Malawi.

Ewan McGregor and Charley Boorman truly have a heart for giving and they’re pretty funny too.  I have followed both since I watched Long Way Round (LWR) and Long Way Down (LWD) in which the pair travel around the world on motor bikes.  In LWD, they visited Malawi.  It is clear they are dedicated to making a difference for children internationally. LWD includes the UNICEF documentary The Missing Face, which is about the AIDS epidemic in Malawi.

Grief, Dying and the Pediatric Rehab Therapist

Photo: Matthew High

I often get asked “How do you do your job?” followed by “It’s so depressing” or “I couldn’t handle it”.  On most days I disagree.  I get to meet great kids with amazing spirits.  They teach me far more than I teach them which includes how to be a better person.  But today was hard.  Another little friend of mine was handed a “death sentence”.  I felt guilty because I couldn’t talk about it with his mother because I knew I couldn’t keep it together.  As a scientist, I know that the human body is a complex system beyond our comprehension.  As a spiritual person, I get that some things are meant to be beyond our understanding.  I still find myself asking “Why this kid?” “Why this family?”

Pediatric rehab therapists are on the medical front line.  The family is handed a diagnosis by a physician and left to figure it out on their own or referred to the social “experts” who really have no idea how how it feels to have a dying child.  Families often turn the us (rehab therapists) because we see them every week.  We are there to see tiny celebrations and share disappointing set backs.  They bring us videos because their child held a cup or said a word.  They ask questions we can’t answer: why? or how long? or what happened with other kids you have seen?  We see families in all stages of grief.  Some have been angry because we can’t fix it.  Some have thought if we push harder and faster the child can cheat death.  Some have shown accepting grace.

On days like today, I wonder how the pediatric therapist is supposed to grieve.  We are expected to show empathetic neutrality–be a compassionate listener, but keep our emotions in check.  The truth is, it sucks.  Watching children die and seeing their families experience overwhelming grief is not something I would wish on anyone. Today I decided that instead of trying to rationalize it, I would think about what I learn from it.

  • I do not know what it feels like to be a parent of an ill or dying child.  I never pretend I do.  I pray that I will never know what it feels like and thank God everyday for my healthy children.
  • Kids are the most resilient, amazing beings I have ever known.  
  • Sometimes the “experts” are wrong.  I have seen a lot of miracles and never judge a parent’s unwavering determination to make their child better.
  • It’s ok to grieve and it should be talked about.  Grieving is healthy human process.

Elisabeth Kubler-Ross has some excellent books on the topic.  We are, after all, only human.  If you are a healthcare worker and experience cumulative professional loss, I encourage you to acknowledge your feelings and get assistance if needed.  Peace!