Saturday, October 23, 2010

Deborah Peters Goessling 1953-2010


Deborah Goessling, the author of this blog died on Monday October 11th, 2010. Below is a transcript of a talk she gave at a religious retreat. Throughout her funeral services, this speech was always mentioned, so I thought it would be a wonderful way to share her kindness, love, and grace with all of you.



Do you remember what you were doing one month ago on a Saturday morning?  Where were you on the last Saturday in February?  What were you doing?

I, with my husband, Dan, was at Lakeview Cemetery in Wayland, picking out a burial plot.  We were specifically looking at Plot 57 in the corner of the property overlooking the Town Beach.  You may wonder why a relatively healthy 56-year-old woman was picking out her resting place.  I guess you might call it grace.

How do I define grace?  Grace comes from God and dwells in us, it is a gift from God, and grace allows us to be more courageous than we ever thought possible.  Grace allows us to slow down and be appreciative; grace helps us be patient and cheerful.  Grace guides us in our understanding of our weaknesses and our options for the future.  Grace is both an optimist and a realist.  Grace is a gift that I have been given in the past few years in abundance.

I have lived a blessed life.  The oldest of six children, born into a loving, blue collar family in Hillsdale, New Jersey – my mom always said that we did not have much money, but we sure had a lot of fun!!!  I attended St. John the Baptist elementary school and then Immaculate Heart Academy, an all girls’ school. I was the first person in my family to go to college, attending Boston College on a full scholarship.  I went off to college with a strong faith nurtured by my high school nuns who no longer wore habits, and theology classes that analyzed song lyrics by the Beatles, including the Long and Winding Road.  I took courses with Mary Daly at Boston College on feminist theology, which only served to deepen my faith and awe of God. I was passionate about being a special education major, and eager to work with children with disabilities.  After all, I had a sister, Mary, two years younger than me with Down syndrome, and I found her fascinating.

So after getting a Master’s degree from Boston College in severe special needs education, I moved back to New Jersey for my first teaching job.  I loved all ten students with physical disabilities, and learned to work with physical therapists and speech therapists, as we did range of motion exercise, put on AFOs or braces, repositioned children, and got the students talking and learning.  It was fulfilling work.

During the next twelve years, I worked with children with multiple disabilities, married my sweetheart of four years, and had three wonderful sons – Sam now 28, Joe now 26, and Tim almost 24.  In 1987, I set off to Boston University to earn a doctorate in special education.  In the meantime, we attended the Paulist Center, a progressive Catholic church in Boston (which I had known from my BC days) for twenty-five years, where our children were baptized and made first Communion.  They all came home to Wayland though, for confirmation at St. Zepherin’s.
   
Dan and I tried to develop good spiritual habits in our children.  Our family had an individual personal grace at dinner each night, weekly Sunday mass in Boston and discussions of the homily on the way home, service work in shelters in Boston, a cluster religious education program with eight families for over fifteen years, advent wreaths, and special Lenten prayers.  We all grew in our spiritual lives.  Sam, Joe, and Tim graduated from Wayland High School and went away to college and work. Now Sam and Joe live in Texas and Tim, who has made movies since age seven, lives in Los Angeles.

Life as a professor at Providence College the past fifteen years has been beyond rewarding – educating young undergraduates to become teachers is a joy.   Receiving letters and emails from my former students in their first year of teaching or their tenth year, always delights me. Spending time in schools with young people continues to be challenging, fun, and creative work. Trying to improve my teaching each year, develop new courses on autism and inclusion, have all been satisfying intellectually and creatively.

I am still married to the love of my life, for over thirty years now, and I feel blessed.  Dan and I have had so much fun together -  a cross country trip, overnight canoe camping trips, music festivals, and trips to England, Mexico, and Italy with our boys..  We have helped each other help our sons.  It has been a very active, happy life!

So now grace has recently come for a visit.  Grace first, noticeably, popped into my life in a significant way, when I made a decision to be with my mom as my dad was dying of lung cancer in Brewster on Cape Cod in 2001.  I left my family and work for seven weeks to provide hospice care to my dad with my mom.  How did I do that – how did I help him die, how was I strong and cheerful?  I do not know how I came to do that, only that grace paid a visit and helped me through.

In January 2008, after a very bad fall when I broke my left arm in four places, I was diagnosed with ALS or Lou Gehrig’s disease.  This is a powerful motor neuron disease that progressively destroys your muscles and robs you of the ability to walk, and later talk, eat, and breathe.  The current life expectancy is two to five years, and there is no cure.  I have leg onset ALS, which means most of my deterioration, is confined to my legs for now.  I have gone from using a cane, to using a walker, to using a scooter, to needing an electric wheelchair, to being unable to stand and walk.    In the past week, I can only get out of bed with Hoyer lift, a device that puts a sling around your body and then it lifts up the sling, with you riding along.  Dan has become very competent in working this machine.  So all this change has happened in two years.

So while, I have many sad days, I also have many days filled with grace.  My life has changed in many ways!  As my friend Susan, likes to say, ALS has worn off all the rough edges.  I like to think it is the grace of God that has given me a new outlook on life.  After years of fighting in the kitchen over how to cook with my husband, we now peacefully concoct dinners together.  I cannot stand over the stove, so I am the sous chef now, making salads and chopping everything in sight.  We laugh and talk and enjoy cooking together, that is the work of grace.  I came of age during the women’s movement and I still have my own checking account, I am an independent woman.  But grace has helped me ask for assistance, be grateful for help, and to better understand the world of dependency.
   
I have learned, as St. Francis tells us, to accept the things I cannot change.  Yes, it is clear I will never paddle my ocean kayak again, nor see my grandchildren, nor travel to Africa where I always wanted to go, nor swim in the ocean, nor snowshoe at my friend’s house in Vermont, nor dance a slow dance with my husband, but grace reminds me each day what I can still do!  I can still pray, I can still love and make love, I can still laugh, and read and write poetry and mediate on all I have been blessed with by God.  His precious grace has given me the power to see the glass as half full rather than half empty.

Grace helps us treasure the time on earth we have.  Grace helps us understand that preparation for death is really a way of learning to live well.  Death is not to be feared, but a reminder to be the best we can be.  Grace reminds me that now is not the time for weeping, now is the time for me to spend precious time with my sons and husband, to cherish the days with friends and family, to write advanced directives, and find a burial plot.

God ‘s grace is with me always, some days I have to look a little harder to find it.  God’s grace was with me as we wandered around Lake view Cemetery last month and grace “ will lead me on”.

I would like to close with some words on death, and grace from Kahill Gibran.  This passage on death is taken from his book, The Prophet.

“You know the secret of death.  But how shall you find it unless you seek it in the heart of life?  The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.
If you would indeed behold the spirit of death, open your heart wide unto the body of life.  For life and death are one, even as the river and the sea are one.
Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honor.  Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king?  Yet is he not more mindful of his trembling?
For what is it to die but to stand naked in the wind and melt into the sum?  And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and see God unencumbered?
Only when you drink from the river of silence shall you indeed sing.
And when you have reached the mountaintop, then you shall begin to climb.  And when the earth shall claim your limbs, shall you truly dance.”

Thanks for listening to me discuss God’s grace and how it is changing my life each day. I do hope to one-day wear the starry crown.

Friday, October 1, 2010

Back to school!

I have been teaching for one month now since my spring sabbatical and summertime off.  I have a reduced load, teaching two courses rather than three.  After one month, I can say it is going well, although my colleagues and students may disagree.  I teach two sections of EDU 418, Methods and Materials for Teaching Students with Mild/Moderate Disabilities.  It is a senior class and we meet at 11:30 am and 1:00 pm on Tuesdays and Thursdays.  On various Wednesdays we  have department meetings.  I serve on committees, meet with students, advise students, and enjoy my time at work very much.  So far, I have a helpful driver who gets me there on time and home again safely. 
Everyone asks me," how long will you teach?"  "You seem more disabled by the ALS?"  "Are you tired?"  "You know you are eligible for social security disability income?"  I know I will need to quit sometime, I just do not know when that sometime will be.  Thanks to everyone who makes it possible for me to work, thanks for the encouragement by my family and friends, the smiles of my students, the chats by colleagues, the belief that disability does not need to define everything!  Thanks!

Friday, September 17, 2010

ANOTHER MACHINE COMES INTO OUR LIVES!

No, this is not a picture of me as a preschooler, but IT  IS a picture of a breathing assist, non-invasive machine called a Bi-Pap.  This is similiar to a C-Pap machine which many people use for sleep apnea.

In late August at my ALS clinic appointment at Massachusetts General Hospital it was determined that my lung capacity had weakened.  After further pulmonary tests, my doctor, Merit Cudkowitz, recommended that I use a Bi-Pap machine at night to assist with breathing, as it would relax  the muscles in my diaphram and give them a little rest at  night.

A respiratory therapist visited and set me up and currently I am sleeping with the machine about 3 hours per night through a nasal mask.  I need to increase the time to six -eight hours, but this is only the first week.  Needless to say, this is not the sexiest bedtime experience, but Dan and I have some alternate ideas.  It actually has NOT been as much of a hardship as I imagined, but  it has had a big psychological impact on us, as my body obviously weakens.  The advice one hears, "Take a deep breath!" seems to have new meaning.

Monday, August 30, 2010

Wonderful Lake Michigan Goessling days !!!!

All the anxiety, all the accessibility challenges,  were definitely worth a wonderful six days with 28 members strong of Dan's family!  What a delightful time - cooking teams, scrabble tournaments, late night serious talks, colorful hand fans for cooling, croquet, sunsets, onion tarts, volleyball, mounds of home fries,an outdoor shower half-a-mile away for Deb, rummy cube games, guitar music at night, health talks, root beer floats, braadworst, buckyballs, sunshine everyday, and many wonderful memories!!!  All in Sturgeon Bay, Wisconsin on the shores of Lake Michigan!

Thursday, August 12, 2010

A Giant Adventure - the Goessling Family Reunion

The site of the of the thirty member strong Goessling family reunion is in beautiful Door County, Wisconsin at the Sand Bay Lodge and Cottages resort located on Lake Michigan.  It will be an accessibility challenge.
I offered to stay home and let Dan, Sam, Joe, and Tim attend, but they weren't buying that idea! They wanted me to come!   So ....................................


We will have our accessibility challenge.  The nearest wheelchair van rental is in Chicago, where we will fly to from Boston.  There are ramps and such at the resort, but not an accessible shower, Dan says he will use a hose!!!!  The toilet is not in a good location to work with the Hoyer lift, so we will rent a commode as well as a Hoyer lift.  I will be bringing the following for the adventure:
*Powerful grey sling to use with Hoyer lift
*Manual wheelchair as back-up
*Metric wheelchair repair kit, which always freaks out TSA, but is necessary because my Red Rover   Permobil chair is Swedish.
*Bed rail to assist with getting out of bed
*Charger for wheelchair
* Supply of blue cloths called CHUX which sit on my wheelchair cushion
*Portable gel seat to help my bottom be comfortable on the long plane ride
*Female urinal
*Courage and calmness

We will be gone from August 14 through August 19.  Keep us in your prayers, especially Dan who will need to do so much in a new place to help me out!!!!

Monday, July 26, 2010

Happy 20th Birthday to the Americans with Disabilties Act

What A Difference One Inch Can Make


Deborah Peters Goessling
July 26, 2010
Deborah Peters Goessling, Ed.D. is an associate professor of elementary/special education at Providence College, Rhode Island. Her wheelchair is named Red Rover.
I never realized how much one inch made a difference in my life. As an associate professor of special education, I teach students who want to become special education teachers and work with kids with disabilities. Ironically, two years ago I was diagnosed with ALS, Lou Gehrig’s disease. Now I'm the one who is really learning about disability.
In the U.S. there are more than 1 million wheelchair users. Although today we celebrate the 20th anniversary of the Americans with Disabilities Act, accessibility is still a big issue. And often it comes down to just one inch.
In the past few years, one inch has prevented me from using a friend's bathroom and from socializing on a beachfront deck because the entrance was too narrow for my wheelchair. At the post office counter, one inch lower means I can pay for my stamps. When we cannot get my beach wheelchair deep enough into the water, there is no relief from the heat. While my family is swimming and splashing, I must remain on the sidelines. With just one inch too much to the left or right, I'm unable to place my wheelchair into my van's "lock-in" system to be able to use hand controls to drive. For me, one inch can make the difference between attending a friend's 50th birthday party or staying home and mailing a gift. It limits my ability to attend family gatherings, work celebrations and bridal showers and makes me feel excluded from friends and family.
When I went to my brother's house he made a little entry ramp for me, but I couldn't visit, because his door was too narrow for my wheelchair. Most wheelchairs, like mine, measure 28 inches across and benefit from a 30-inch door. From my experiences, most residential doors are less than 30 inches wide.
Now, I am not saying that businesses and the government are in violation of ADA; I am just saying that 20 years later there are still many accessibility challenges. Many more challenges then even I, a professor of special education, could have imagined. It was a big surprise to me that a ramp doesn't always provide enough access, mandated curb cuts can be so deteriorated they cannot be used, that doors can be too narrow, thresholds too high, chairs too low and blackboards too high. We do not need more legislation, but people could be a lot smarter — and more thoughtful — when it comes to designing buildings. An inch may not seem like a lot, but to me and many others it makes a world of difference.
 

Wednesday, July 21, 2010

OH MY POOR HOT SWOLLEN FEET!!!!!!!




Summertime and the feet are hurting.
Lack of leg movement and the feet are hurting.
No circulation in my toes!  No circulation in my ankles.
Summertime and the feet are hurting.

Tried to stop wearing shoes too tight.
Tipped the wheelchair back, raised my legs to a new height.
Dan massaged my feet so they just feel right.
Summertime and the feet are hurting.

Went to my local podiatrist to see what was the score!
" Wear compression socks and then wear them some more!"
When is it ninety degrees in the shade?  Wear the tightest socks in town?
"Yes, everyday, 12 hours a day, and your swelling will go down!"

Well, my feet wear the nylon and they wear the cotton.
These socks are knee highs and very, very hot.
These socks hurt to pull them on and then to roll them down.
But in a few days,I have the least swollen feet in town!

So, summertime and the feet are hurting.
Socks are on and the feet are flirting.
Just a little swollen and now my sandals fit!
Oh summertime blues, but soon the heat will quit!

POST YOUR SUGGESTIONS FOR MY SWOLLEN FEET!!!!!!!  THANKS FOR THE HELP!

Wednesday, July 14, 2010

Celebrating July 4 on Little Deer Isle, Maine !!!!

What a delightful holiday - warm weather, cool nights, star filled skies with a visible Milky way, and Sam, Joe, and Tim with us in Maine.  Together we enjoyed  the parade, the Fish Fry on the pier, Stonington fireworks, games (including a new Monopoly card game!), an LL Bean trip, and a home-cooked lobsta' dinner.   The boys made a new path to the cove and got me to the ocean, so I could put my toes in the water!  What a treat!  The memories will last forever and the good times just rolled and rolled.  I feel blessed!

Monday, June 21, 2010

SPIN for ALS Research!

Last Sunday, June 13, Dan organized a group for Team Debbie to ride in our first "official" fundraiser.
Below are, left to right, the riders: Dan, Lynn Garone, Amy Salomon, and Dennis Berry.  The group rode 25 miles, starting in Wayland, MA and continuing through Sudbury, Lincoln, Hudson, and Concord.  It was the furtherst Dan had ridden a bicycle, and he did the 25 miles competently and with a smile and with his friend Dennis.  See Dennis and Dan below at the completion of their 25 mile trip.  The fact that these friends came out for this special fundraiser, makes my heart smile.  Thank you Amy, Lynn, Dennis and Dan. 

Tuesday, June 15, 2010

Debbie does sailing!!!!

On Saturday, June 12, in the light drizzle, Dan and I took advantage of the open house at the Piers Point Adaptive Sailing Program in East Boston.  I heard of this program through a church friend, and I was eager to give it a try. Since I can no longer stand, it was great to know they had a lift welded into their dock.  I brought my favorite sling, and I was up in the air, over the water, and into the boat.  The staff and volunteers were tremendously  helpful, but not paternalistic. 

I used a joy stick tiller, because that was what was on the boat, but next time, they suggested I use a real tiller to guide the boat and sail.  So much about sailing came back to me, it was just wonderful!!  The wind was light, but we spent an hour sailing, and I am eager to go back!  What an awesome place!
http://piersparksailing.org








Thursday, May 27, 2010

So many Guardian Angels !!!

Yesterday, I realized, that  so many, many people are helping me cope with ALS.

A package arrived in the mail yesterday from a friend's cousin, who is a great seamstress.  She heard I needed skirts to wear, and she started sewing me some from beautiful, functional fabrics.  First two skirts arrived in the mail, then two more, then two more.  No money has exchanged hands, just kindness to me, whom she has met once in ten  years!  She is a guardian angel!

Tomorrow a friend and her sweetie are cleaning and opening our cottage in Maine, lots of scrubbing, bed making, and getting rid of dead ladybugs and mouse droppings.  What guardian angels!

My mom provides dinner once a week; my sister spends Mondays with me and helps me to shop for clothes and compression socks; a colleague comes to my  house for an academic meeting, another colleague gives me rides to work, without a complaint.   Terrific guardian angels, kindness without reward!

My brother drove me to Cape Cod and back (about 225 miles) for a legal meeting. Another brother from NY brought his five kids and wife up here to do autumn outdoor clean-up - raking, trimming trees, and organizing the shed.  They even brought their own lunch and dinner to share with us!

Friends of friends send me inspirational cards, neighbors stop by to chat, friends suggest lectures or concerts I might like to attend with them, and then check the accessibility for me.  One friend comes for lunch and brings a beautiful bouquet.  One guy built a whole ramp into his home, so I could visit.  People have dinner parties in their basements and haul their china and fine crystal down the stairs, so I can participate. A college roommate drove down from northern Vermont, just so we could go see spring flowers together in the Arnold Arboretum! So  many guardian angels!!!

Then there is my favorite guardian angel, my dear husband Dan. He is patient, trustworthy, and very, very caring.  He makes me smile, and laugh, and is without complaint.

Why are people so thoughtful?  How do they manage to be so kind?  It must be God at work!
I am grateful today for all these guardian angels !!!!!!!

Monday, May 17, 2010

Joe proposes to Melissa and she says yes!!!

On Friday evening, May 14, Joe suggested to Melissa that they take a walk to a park, near where they live in Austin, Texas.  Earlier in the day, big brother Sam, had helped Joe pick up the custom-made diamond ring from the local silversmith, clean the park bench where the proposal would take place, and keep park goers from sitting on the bench before the appointed proposal time.  Joe gave Melissa a glass bottle of Coke and two lollipops, symbols of their first date when they were in the Peace Corps in Panama together.  She said yes to the proposal, and Joe brought out of his backpack some wine he had brought back from Argentina last year, plus two engraved wine glasses. 

  We are thrilled with the news of their wedding, currently planned for Spring 2011!  May their love continue to grow and shine on us all!!


Tuesday, May 11, 2010

The Secret of Skirts!!!!


"What's up with the skirts?"

"Why are you always wearing skirts?"

Some of my friends have asked me this question and some of you who see me frequently are probably wondering also.  Today the secret is revealed!

Three months ago, my wonderful British physical therapist, Sue, started advocating I wear skirts.  I thought it was a crazy idea from England, I love wearing pants!!!  But ALS changes many things, and she persuaded me that it was easier to use the Hoyer lift and toilet when I could just lift up or remove the skirt.  Then she taught me to use a female urinal, which has added new independence to my life!!  I do not have enough leg strength and arm strength to wiggle out of pants to use the portable urinal.  But I can lift  up my skirt!!!!!
                                             Maybe this is more info than you wanted, but now you know the secret!

Sunday, May 2, 2010

Quick Thinking at the Mall!

I went to meet my friend, Alicia, at John Harvard's Brew Pub for lunch last Friday.  I drove the fifteen minutes from my house to meet her.  I had no problem parking in an accessible parking space with diagonal stripes to the right of my van.  This space allows the necessary room for the side ramp to come down and for me to roll out.  The picture to the left shows the inside of my wheelchair van.  There is a lock-in system for my Permobile wheelchair, so I just roll in, lock in, and drive using hand controls.  We had a great time, lots of nice talks about our kids and our families.  After lunch, Alicia suggested walking me to the van; I said it was not necessary, but she insisted. 

When we got to the van, some one  had parked next to my van on the diagonal stripes!!! Ohhhhhhhh no!!!
We could get the ramp down but there was no room for the wheelchair. Alicia said she would back-up the car a few feet, looked in, saw there was no seat for the driver, and then she said, "Ohhhhhhhh no!!"
We tried to problem solve and thought maybe a store or the restaurant  would led us a chair for Alicia to sit on, so she could drive the van. But she is smart and fast-thinking.  She grabbed a shopping cart, pushed it up the ramp, turned it on its side, sat on it, and backed the van up the necessary four feet, so then I could get in, after she removed the shopping cart.

What did I learn?
1.  Do not panic, we can find solutions.
2.  Shopping carts have many functions and can be used as chairs, when turned sideways.
3.  It is good to have clever friends!
4. Keep a folding chair in the back of the van for these future problems.
5.  Remind people not to park on the stripes  next to a side entry van!

Thursday, April 15, 2010

Opening Day at Fenway - Red Sox defeat Yankees!

Sam made a great assumption at Christmas 2009 - he assumed attending a Red Sox game on opening day would be on my "bucket list".  He was correct!!!  He gave Dan and me tickets to opening night, April 4, at Fenway Park in Boston.  He also made sure he had to accompany us to the game. 

It was a wonderful evening, warm weather (57 degrees), a come-from-behind victory for the Red Sox, and the first pitch thrown out by a former Red Sox player, Pedro Martinez, who the  whole stadium still loved!
It was a magical night and one I will always remember!

Friday, March 26, 2010

Crusing with the guys was wonderful !!!!!

-Seven days, March 14-21,  at sea, leaving from Fort Lauderdale, Florida to the southern Caribbean with four wonderful guys - Dan, Sam, Joe, and Tim. Pictured to the right is the top deck of our ship, the Celebrity Solstice.  It has a large lawn and we were all able to be play bocce, but I did not win the game.








Here we are on St. Patrick's Day morning on the balcony of our room.  Joe has supplied five green Irish hats, which we wore all day, five Guinnesses for breakfast, and sweet Irish music on his IPOD.  Plus we had room service deliver breakfast goodies!  What a treat!!  We started and ended the day singing and drinking with Guinness!



Sam, Joe, and Tim looking mighty fine for their Irish dinner!!!

Playing by the pool and sticking my toes in the cool water.  Each day was sunny and in the 80s!!
In the picture to the right we are leaving Tortola, where all the guys had wonderful snorkeling after taking a taxi ride to a great beach.  I chilled on the ship!  Here we are all cleaned up for dinner and then some serious family board games!  Joe won Rummy Cube, but Tim beat me in Scrabble. Plus frozen drinks for all!!






On the last day we played croquet and Mom almost won!!!  On Labadee, near Haiti, I was able to get my toes in the aqua ocean waters of the Caribbean, thanks to Sam' s strength and everybody's help getting me into a beach wheelchair.  We had a wonderful seven days together, saw fireworks, talked, laughed, played and reminisced!  The air travel was not too bad, the wheelchair was not damaged, and I will probably try flying again some day.  Dan was super with adjusting to new commodes and slings and Hoyer lifts.  We were truly blessed and we are grateful!!!

Friday, March 12, 2010

Vacation Anxiety on the High Seas?

Why am I so anxious on going on a seven day Southern Caribbean cruise with my wonderful family, Dan, Sam, Joe, and Tim?  We have planned this for six months and now that we are leaving on March 14, I am a bundle of tension and fear.  We will be leaving out of Fort Lauderdale, FL and traveling to San Juan, Tortola, St. Martens, and a few other places.  We have an accessible room with a balcony, a roll-in shower, raised toilet, and raised bed.  We are renting a Hoyer lift and shower commode chair.  And still I am anxious!!!

I am anxious because:
I hate all the transfers involved with airtravel - from wheelchair to aisle transport chair and then repeated to get off the plane.  Transfers involve two large men hoisting me quickly from chair to chair.  Last October, the last time I flew, my back was hurt by the transfers and I was very nervous.  Now I need to keep a lid on my anxiety.

My wheelchair could be damaged.  My $30,000 Red Rover which I am in 16 hours a day is vital to my independence and comfort.  While we will bring a back-up manual chair, it would  be terribly disappointing to use that, to say the least.

Dan will be the primary caregiver, in an environment where I will need to be lifted out of  the bed, the wheelchair, the shower, the toilet.  Each time we put the sling under me, adjust the straps, test the sling, and raise me up and lower me down we are looking at 15 minutes of activity and work for Dan.  I worry that he will be worn out by care for me on HIS vacation.

Sam, Joe, and Tim want to get me into the water - any water - pool or ocean.  I cannot stand, how will they do this?  Will they understand if I cannot do this?

On the positive side, I know I will love spending time with my family, eating good food, being in a warm environment, seeing new places, playing games with everyone, and sharing a few drinks.  We will take many pictures, which I hope to post, and make happy memories and count our blessings.  Bon Voyage!

Friday, February 12, 2010

Super Bowl and a Super Weekend !!!!!

Despite all the difficult challenges of ALS, sometimes there are days of pure happiness and gratitude.  This happened last weekend when Tim, Sam, Joe and his girlfriend, Melissa came home for Super Bowl weekend - flying in for two short days from Texas and LA.  We had quiet time together and also fun - ate at Helmand, a delicious Afghanistan restaurant in Cambridge, then went to  hear very uplifting music from Ladysmith Black Mambazo.  On Sunday we all prayed together at our church with great music, saw the Orlando Magic beat the Boston Celtics in the last quarter, and went home to the Super Bowl.  Melissa, who went to Tulane, knew the "Who Dat" cheer and dance, which she taught us all to do, as we cheered on the Saints to victory. 

Now everyone is gone, I miss them, but we did make some wonderful  memories of family and good times that will be in my heart each day until I see our sons again, hopefully in March!

Tuesday, February 2, 2010

We made it to New York City!!!

For the past eight years, my kindergarten friend, Pam, and her husband, Matt have met Dan and I in NYC for a winter weekend of jazz, theater, and fun!!!  We live near Boston and they live near DC, so it is the perfect place to meet.  What would happen this year with advanced ALS?

Getting a hotel for one night, seemed too much work!!!! Size of room for power wheelchair, adaptive seating for showers, toilet risers, height of bed, etc. etc. etc.  But should we just give up on going to the Big Apple?  Maybe???

But I love many things about Nigeria, and I had read several glowing reviews about a new musical about the grandfather of Afrobeat, Fela!  I really wanted to see the musical about his life, called FELA, hear the music, see the African dancing, and reflect on his political, musical, and raunchy life.  Some say Fela is the Bob Marley of Nigeria.

So we went for just the day - Amtrack at 8 a.m., time for a fast lunch, the play, and a few drinks and snacks afterwards before boarding Amtrack at 8 p.m.  We never took a cab, just walked the seventeen blocks in 15 degree temperature and the north wind.  Disability services on Amtrack were good, and it was a smooth trip, thanks to a little help from my friends, Pam and Matt, and of course, my dear Dan.  What did I learn?  Never say never, maybe there is another way!

Sunday, January 24, 2010

SNOW MOUNDS!!!


Last Thursday evening, I was rolling down the streets of Waltham, MA with my mom and Dan, heading from a lovely Mexican dinner to the movie theater  to see "Young Victoria".  It was a cold night, but we were ready to cross the street and walk two blocks.  After rolling down the sidewalk a long ways, I was ready to go across the cross walk and into the theater, but I could not!  The ramp and sidewalk were filled with ten inches of frozen snow, hard pack.  Dan kicked at it, but it would not budge!  My mom, almost 82 years old, climbed over it, hanging on to both of  Dan's arms.  I had to return to from where I started and go three extra blocks to get into the theater.
What are people thinking - wheelchairs are tractors?  Just  another ALS frustration!!!  The movie was great!

Wednesday, January 20, 2010

The Flying Trapeze - oh geez!!!!

Over the holidays, I was "fortunate" enough to receive a Hoyer lift, based on the recommendation of my physical therapist, that my  ability to transfer was declining and my legs were weakening!  This is not fun!!!

I have never liked roller coasters, nor swinging high in the air!!  This is terrifying!!  Dan, who loves all things with flight, has been in the sling a few times, and likes swinging around in it!  Dan is still being trained, but we all know that any day this will be my means of transfer.  It is time consuming to get me situated in it, all clipped in safely, and then move the lift from bedroom into bathroom.  I hope my transfer legs hold out a little longer!