Honoring Ted!! Honoring Disability!

Having lived in Massachusetts for most of my adult life, my husband Dan and I decided to attend the wake for Ted Kennedy at the Kennedy Library in Boston, 20 miles away.

We got into a UMass parking lot and then Dan and I walked ( I had my newred wheelchair) to the library. It was very
interesting, inspiring, and wonderful - it was a very diverse crowd, we
met so many immigrants who wanted to thank him for immigrant legislation- many, many Africans. It was so respectful and quiet the whole time.

When we arrived at 8 they told us, it was a three hour wait, and we left
the library a little after 11. Everyone who arrived seemed determined
to get in line. The line was longer when we left then when we arrived.

The one strange thing was that the ushers or organizers kept coming up to me, saying I could go the the head of the line. I think because I was in
the wheelchair they wanted to give me special treatment. However, it
was a beautiful summer evening, in a lovely setting, with wonderful
people, so I just kept refusing to get to the head of the line. One
time they asked how many in my party, they could move us all to the
front, and Dan said thousands were in our party.

I just think that Ted worked so hard for equal rights for people with
disabilities, and one right is being with everyone else and NOT getting
preferential treatment when it was not needed. I was sitting the whole
time and everyone else was standing!

Most of all I wanted to thank Ted for his role in passing the Individuals with Disabilities Education Act and the Americans with Disabilities Act. Both have made enormous differences in the lives of my students, and in my own current life! As Tim said, " Massachusetts has lost its warrior!"

Driving down the highway of life!!!!

I did it!!!! I drove on the highway, Route 95 South, by myself, for 150 plus miles. I drove all the way from Portland, Maine to my home outside of Boston!!!! Yippee!

On Sunday, we dropped off Joe and Melissa at the Portland airport and had two cars! Dan drove one car home and I had to drive the other!

I got in my power wheelchair, clicked into the Permalock system bolted on the floor, grabbed the knob with my right hand, brake with left hand, said a prayer, and off I went - down the highway to home, sixty miles an hour!!! The longest hand control driving experience and solo!!! The next challenge - driving to work in Providence in one week!

Swimming makes us cry!

Yesterday my brother Mike and his wife Cindy, and their three kids - Christopher, Katherine, and Caroline, plus my dearest Dan, decided we would go swimming in Dennis pond on Cape Cod. So we drove two hours to their summer house with the donated beach wheelchair and secret hopes that I would be able to get near the water. The beach wheelchair is enormous and took up the entire space of our wheelchair van!

We arrived to big smiles and eager hands which helped with the transfer to the beach wheelchair ( I was already in my bathing suit from the start of the day!). We had a wonderful picnic on the beach, making strategies for the big attempt into the water. Needless to say, everyone helped me into the water, off of the chair, and then I was swimming and floating and walking and laughing and then we just all had a tear in our eye! To get me back onto the chair, even some strangers and the lifeguard helped stabilize the water throne which tried to float away! Then down the road to a great barbeque at my Mom's house and her famous potato salad and a 9 p..m. viewing of the space shuttle!

What a great day!!! No matter that last summer I swam far out to the boulders in the pond and this year I swam ten feet with a life jacket on. My dear husband and family made it possible for me to yell, "This summer I went swimming! This summer I might have drowned, but I kicked my legs and I moved my arms, yeah! I moved my arms around!"

New wheelchair coming in four days! Yikes!

Very emotional day to pick up the phone and someone tell me "the wheelchair is ready for delivery"! There is no way now to pretend not to be disabled, no way to pretend I still can walk, no way to say "I just use a scooter around the house!"

Today feels like a big punch in the stomach! Today I realize I really do have ALS, I really am disabled, and I really need the wheelchair! The emotions are overwhelming.

Putting a positive spin on all this means it will be easier to go over rough terrain, easier to drive once the lock in system is in place with the van and hand controls, and I will be able to travel longer distances. So I guess it will really help, but it is still so tough to know this is my new life, my future life!

July 4 on Block Island
What could be better than July 4 weekend on beautiful Block Island, Rhode Island - a short, one hour ferry ride from the mainland? Almost everything accessibility wise!!
We went to visit childhood friends from DC who had invited us to stay at their house - we knew there were four steps in, we brought our eight foot suitcase ramp and a six inch wedge. We didn't know my scooter would need to cross 50 yards of lawn and rocks before getting to the ramp!!
We didn't know the bathroom doors would be 18 inches wide, even with the door pulled off (forget privacy). We could not get the scooter into the bathroom!! We did not know that it is was a BIG step down to the deck overlooking the ocean! We did not know the bed would be four feet high! We did not know the acclaimed historical restaurant would have five steps, but no ramp - the waiters would carry me in? Too many accessibility challenges!! We left within 24 hours, to return to our accessible home! What an adventure!

Moving Day

Moving day tomorrow! Moving to the accessible house, except the contractor is not finished with the bathroom. Who needs a shower right? My three terrific sons are here to help pack! We will have some good times!