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The Leg List
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The Leg List
My partner, Rebecca, was diagnosed with facio-scapula-humeral muscular dystrophy (FSH) 2 months after her 21st birthday.
FSH is one of several different kinds of muscular dystrophies, all of which cause muscle to breakdown and essentially die for no apparent reason, except for the gene mutation that tells them to.
The dying muscles don’t hurt, but the living muscles working overtime cause a constant, mostly low grade pain (the kind you get used to until it gets worse).
Rebecca was tested at age 5 when her mother was diagnosed and was told that she did not have it.
The doctors got it all wrong.
She has been told that she has one of the most rapidly progressing cases doctors have seen with some unique features like the rapid decline of the muscles in her left hand (and yes, she is left-handed).
In the past 2 years, Rebecca has become noticeably weaker. We knew it was time for her to get doing all of these things she had always planned to do.
On her own legs.
Under her own power.
So she made a list (that is how most things start with her). She calls it her ‘Leg List.'
There is nothing on the list she can do alone now, but could still do everything with a little help from her braces and the people who love and support her. She will certainly need a companion for each of these adventures for support walking, carrying and lifting things, helping her in and out of vehicles, not to mention to laugh at her jokes. She likes to remind me that she is not seeking to summit Mount Everest, but the truth is, most of the items on her list are quickly becoming her Everest.
She is serious about this and has already managed to shop Stanley Market and sail with her sister.
Her disease is picking up speed again (the rate of muscle loss varies over time and has kicked into overdrive in the past few months) so we did a little strategizing. “What is the most physically challenging item on the list?” I asked her.
The answer was clear – trekking to see the gorillas. Even some able-bodied people report feeling challenged physically by this adventure. Instead of feeling deterred, Rebecca became determined.
She was connected to Dean Tatooles, a photographer and wildlife advocate, who was touched by her story. He invited her to join his trip to Uganda in June and even committed to helping her garner the support needed for Rebecca and a companion to help her to go. The trip includes a trek to sit with the gorillas and a day with the chimps, a jeep ride into the wild, hikes to view 8 primate species and even a safari by canoe. The full itinerary can be found on Dean’s website:
http://scgphotosafaris.com/photography-tours-and-workshops/uganda/
And yes, this is where you come in.
You can help Rebecca fulfill a dream she has had since childhood, to tap into her inner Jane Goodal , to fancy herself Dian Fossey for the day. She actually learned American Sign Language as a teen with plans to communicate with primates (even though she never signed with apes, she did earn her MSW at Gallaudet University and started a not-for-profit organization to promote connection between the Deaf and hearing communities in Portland, OR).
And if all of that is not reason enough, you can be a part of Rebecca checking the item off of her Leg List that is one of the most challenging and significant for her.
All funds will be used towards the trip for Rebecca and her companion including things like park and license fees, ground transportation, lodging and meals included in the tour cost ($6990 each) and plane tickets ($1200-1700 each).
I hope you will help support her in this venture as she seeks to complete her Leg List and inspires others to set goals, make dreams reality and stretch.
Because at the end of the day, regardless of the pain, the number of times she has to ask for help and the dirty looks she receives pulling into a handicap parking spot (because from the car window she looks young and spry), Rebecca works full-time as a researcher, takes care of herself, our daughter and our home, just as much as I do (including being head chef). She volunteers with multiple organizations, has poured her heart and soul into a camp for kids affected by HIV and has become a leader in the field of adolescent and young adult cancer.
She can do most of the things she needs to do, with a good deal of creativity, and a lot of help. I do all of the carrying, reaching and lifting around the house, and always have an arm ready for stair climbs and uneven terrain. She relies on her friends and our neighbors too -- carrying groceries in, accompanying her on adventures with our daughter that may require carrying her and helping her pace herself so her muscle strength is not worn out too soon.
If you are interested, here is her list:
Trekking to sit with gorillas
Dancing at a Cyndi Lauper concert
Walking with elephants
Hiking the Cinque Terre
Floating in the Dead Sea
Having a pie throwdown with Bobby Flay
Flying a helicopter
Shopping in Stanley Market
Sailing with her sister again
Riding a horse
Walking the Great Wall
My partner, Rebecca, was diagnosed with facio-scapula-humeral muscular dystrophy (FSH) 2 months after her 21st birthday.
FSH is one of several different kinds of muscular dystrophies, all of which cause muscle to breakdown and essentially die for no apparent reason, except for the gene mutation that tells them to.
The dying muscles don’t hurt, but the living muscles working overtime cause a constant, mostly low grade pain (the kind you get used to until it gets worse).
Rebecca was tested at age 5 when her mother was diagnosed and was told that she did not have it.
The doctors got it all wrong.
She has been told that she has one of the most rapidly progressing cases doctors have seen with some unique features like the rapid decline of the muscles in her left hand (and yes, she is left-handed).
In the past 2 years, Rebecca has become noticeably weaker. We knew it was time for her to get doing all of these things she had always planned to do.
On her own legs.
Under her own power.
So she made a list (that is how most things start with her). She calls it her ‘Leg List.'
There is nothing on the list she can do alone now, but could still do everything with a little help from her braces and the people who love and support her. She will certainly need a companion for each of these adventures for support walking, carrying and lifting things, helping her in and out of vehicles, not to mention to laugh at her jokes. She likes to remind me that she is not seeking to summit Mount Everest, but the truth is, most of the items on her list are quickly becoming her Everest.
She is serious about this and has already managed to shop Stanley Market and sail with her sister.
Her disease is picking up speed again (the rate of muscle loss varies over time and has kicked into overdrive in the past few months) so we did a little strategizing. “What is the most physically challenging item on the list?” I asked her.
The answer was clear – trekking to see the gorillas. Even some able-bodied people report feeling challenged physically by this adventure. Instead of feeling deterred, Rebecca became determined.
She was connected to Dean Tatooles, a photographer and wildlife advocate, who was touched by her story. He invited her to join his trip to Uganda in June and even committed to helping her garner the support needed for Rebecca and a companion to help her to go. The trip includes a trek to sit with the gorillas and a day with the chimps, a jeep ride into the wild, hikes to view 8 primate species and even a safari by canoe. The full itinerary can be found on Dean’s website:
http://scgphotosafaris.com/photography-tours-and-workshops/uganda/
And yes, this is where you come in.
You can help Rebecca fulfill a dream she has had since childhood, to tap into her inner Jane Goodal , to fancy herself Dian Fossey for the day. She actually learned American Sign Language as a teen with plans to communicate with primates (even though she never signed with apes, she did earn her MSW at Gallaudet University and started a not-for-profit organization to promote connection between the Deaf and hearing communities in Portland, OR).
And if all of that is not reason enough, you can be a part of Rebecca checking the item off of her Leg List that is one of the most challenging and significant for her.
All funds will be used towards the trip for Rebecca and her companion including things like park and license fees, ground transportation, lodging and meals included in the tour cost ($6990 each) and plane tickets ($1200-1700 each).
I hope you will help support her in this venture as she seeks to complete her Leg List and inspires others to set goals, make dreams reality and stretch.
Because at the end of the day, regardless of the pain, the number of times she has to ask for help and the dirty looks she receives pulling into a handicap parking spot (because from the car window she looks young and spry), Rebecca works full-time as a researcher, takes care of herself, our daughter and our home, just as much as I do (including being head chef). She volunteers with multiple organizations, has poured her heart and soul into a camp for kids affected by HIV and has become a leader in the field of adolescent and young adult cancer.
She can do most of the things she needs to do, with a good deal of creativity, and a lot of help. I do all of the carrying, reaching and lifting around the house, and always have an arm ready for stair climbs and uneven terrain. She relies on her friends and our neighbors too -- carrying groceries in, accompanying her on adventures with our daughter that may require carrying her and helping her pace herself so her muscle strength is not worn out too soon.
If you are interested, here is her list:
Trekking to sit with gorillas
Dancing at a Cyndi Lauper concert
Walking with elephants
Hiking the Cinque Terre
Floating in the Dead Sea
Having a pie throwdown with Bobby Flay
Flying a helicopter
Shopping in Stanley Market
Sailing with her sister again
Riding a horse
Walking the Great Wall