19th Annual Wampanoag Ball: A fun time had by most

A week ago I was pretty excited to put on the new cat dress my daughter insisted I buy for the Wampanoag Ball. Not exactly satin and tulle but fun. I was a little afraid it might seem like I didn't take the dress code seriously but both the dress and the ball were perfect and I had an amazing time dancing with my husband who wore his tuxedo. Too bad the headlines didn't reflect what a great event it really was. I wrote the following response to set the record straight that appeared in the Cape Cod Times this morning.

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Nineteen years ago with a small group of Wampanoag women I started the Mashpee Wampanoag Winter Ball with the intention of having an event that celebrated our pride in our heritage and honored our families and community friendships. It was an instant success. After 10 years on the ball committee I stepped aside to allow a new generation of party planners and fundraisers to manage the event, and they have done an outstanding job.

Those inside the ballroom at the Sea Crest Resort Hotel in North Falmouth on March 21 night enjoyed what I believed was the best Wampanoag Ball ever, and I have attended every one.

From our humble beginnings at the old Sons of Italy, where members of the ball committee shucked oysters in our fancy ball gowns, gave out our first set of awards, danced the night away to music spun by my disc jockey brother Robert Peters, this year’s event had the same original intent with a upscale flair.

The hall was beautifully decorated with floral and balloon arrangements. The food was plentiful and amazing. The ceremony opened with our traditional drummers who performed an honor song for our awardees. A live band shared the stage with my brother, who was back with new tunes and his classic closing rendition of Earth Wind and Fire’s “Brazilian Rhyme.”

How terribly unfortunate that a few bad actors had to steal the spotlight. There is no excuse for that.

The March 23 headline about the Mashpee Wampanoag should have been about money raised at the ball for a playground and a charity event at the Tribal Government Center, where a sold-out crowd was entertained by the Harlem Rockets and raised money to support our elders. Instead, the Page One story was about fights, an overcrowded elevator and four people arrested. I do not blame the media for that: I blame a lot of poor decisions and actions both on the part of those involved in the supposed “melee” and on an overzealous law enforcement response that was both insensitive and inflammatory.

After the last dance I exited the ballroom escorting my elderly neighbor, who happens to have multiple sclerosis, to meet my husband at the hotel entrance with the car. I could not help but notice a large police and security presence but didn’t see or hear any sign of a fracas. Instead of finding my husband and the car in front of the hotel I was met by about a dozen officers and security and found the otherwise easy flow of the pickup circle completely blocked with at least half a dozen police cars. The officers seemed to be milling about waiting for something to happen and had no interest in the obvious obstruction they had created to the drive-up circle function as an orderly exodus from the event. As a result I had to pace around in the cold and search for my husband with my elderly disabled neighbor for about 15 minutes while police ignored us. I’m sure all of this can be confirmed on the hotel security video. Finally, a member of the ball committee came to assist me and told me that there was a disturbance on the second floor among some who had rooms and that it had been made even more contentious with police who asked why the Wampanoag don’t have their events in Mashpee, the implication being we are unwelcome in Falmouth.

While even the hotel manager said the police response was overblown, police insensitivity to the large majority of attendees and provocative remarks to an already insurgent group on the second floor made matters worse. Police also complained that the majority of those trying to get to hotel rooms were intoxicated. It should not be lost on anyone that many got rooms because they knew they would be celebrating and wanted to avoid drinking and driving.

At the end of the day, the resulting stain on the Wampanoag Ball is undeserved. A lot of lessons are to be learned, not the least of which is that we as a tribal community need to determine who is responsible for bad behavior, hold them accountable and teach them the value of being respectful.

Ironically, I have the same advice for the responding law enforcement who ignored the needs of law-abiding and cooperative guests, unnecessarily encumbered those trying to leave, and made derogatory and inflammatory comments to an already angry and unruly group.

I personally look forward to the 20th Annual Wampanoag Ball next March at the Sea Crest Resort.

The Wonder of Rhiannon

Her name was stored in my back pocket for years before she was born. Like an old boyfriend's phone number on a scrap of paper, folded and creased to tatters, it was a preserved remnant of my teenage enlightenment years. Like so many other young women of my era inspired by Stevie Nicks I vowed that some day I would name my own daughter  Rhiannon. She would ring like a bell through the night. While my naïve expectation was that she would take to the sky like a bird in flight these days I ask myself - I ask my Creator - will she ever win?

As she closes in on a third year of chronic illness, today she will undergo major surgery that I hope and pray puts an end to her pain and suffering and enables her to spread her wings. Trust me, no one deserves it more.

Born tiny and struggling and fighting for every minute, Natalie Merchant’s Wonder is probably a more appropriate anthem for Rhiannon. Starting life at hardly three pounds Fate did smile on her, and Destiny visited her neonatal intensive care cradle laughing in the face of every medical prediction:

Know this child will be able

Laughed as my body she lifted

Know this child will be gifted

With love, with patience and with faith

She’ll make her way

Beyond surviving the first six months, I was told not to expect a lot of things other mom’s take for granted: walking, talking, intellect… boy were they wrong. She not only walked she ran, she not only talked she advocated, and she not only learns but she thinks and acts with a moral compass that puts most people to shame.

Rhiannon endured physical and occupational therapy, countless surgical procedures, and the kind of personal hardship that goes along with having a disability that made her invisible to most of her peers.

People see me

I’m a challenge to your balance

I’m over your heads

How I confound you and astound you

To know I must be one of the Wonders

Of God’s own creation

And as far as you can see you can offer me no explanation

That’s okay, she trumped them. Inducted into the National Honor Society, she ran cross-country like a champion even though she finished dead last at every meet. Joined the human rights club and took the anti-bullying bill to the Statehouse and gave eloquent testimony in favor of the right to be treated decently for the bill that is now law in the Commonwealth of Massachusetts.

That's right I'm the proud mother of Rhiannon. Today she is in the fight of her life and can use all your blessings, your prayers, your good wishes, your light. Who or what ever you believe will carry the day should be tapped on the shoulder and reminded that Rhiannon has had quite enough and deserves to win.

All your life you have never seen a woman

Taken by the wind

Would you stay if she promised you heaven?

Will you ever win?

Will you ever win?

*Update: Rhiannon came out of the surgery just before noon with a good but not perfect outcome. Knowing it could have been a lot worse leaves us grateful. Her road to recovery will require one more surgery in six weeks time. Please keep those well wishes and prayers going as she soldiers on.

Then new normal isn't so bad

This morning mom picked up my cell phone from the dining room table and turned it over in her hand. What’s this?

It’s hard to tell how much memory she has of anything current but one thing is certain, most advantages of modern technology are lost on her. Even before being diagnosed with Alzheimer’s in 2010, I recall trying to teach her to use the computer to send email to her friends and family or to even to play solitaire. She almost seemed afraid of it. She did manage to use a flip style cell phone for a few years but today my iPhone 5 was a foreign object.

As are many common things like the coffee maker and the hair dryer. Putting on her seat belt in the car used to be automatic but now she doesn’t recognize its significance.

She recognizes things like a kind touch, a soothing voice, the comfort of logs burning in the fireplace, and is consistently delighted when I offer to make her a hot fudge sundae. I have come to learn there are things that matter, and things that don’t.

About a year ago I noticed that her prosthetic breast, the one that replaced her actual left breast lost to cancer in 1979, was ending up in her pocket by the end of the day. It was then I realized her skin had become so loose that having the fake boob bouncing around in her bra was probably irritating. The bra straps would leave red marks on her skin. So I liberated her. Mom was never big breasted to begin with, and wears layers of clothes even in the summer so the missing bump has hardly been an issue.

She has had three sets of hearing aids. None seemed to help a great deal. The first pair disappeared in what I fear was a malicious act of defiance to rid herself of the annoying buzzing noise in her ears. The audiologist swore the latest set would be more comfortable and improve her hearing without the irritating noise but he was wrong. They sit in the drawer unused and we have to repeat ourselves often in a loud voice and when she finally understands she laughs and says, Well I think I heard you now!

The latest thing to go was her dentures. A few months ago it seemed like she simply forgot how they worked. I watched her fiddle with them from just outside the bathroom door. At first she would turn them this way and that and ultimately get them in, then chomp her teeth together to get a tight fit. Then it became more troublesome and she couldn’t seem to get them beyond her tongue. She would gag and choke. I tried to help her but she wasn’t having it. So the dentures have been retired with the prosthetic boob and hearing aids.

We speak at her directly in a loud clear voice. We cut her food into digestible bits, and when I dress her for the day her slightly asymmetric appearance is a blur.

I’m not a perfect caregiver. There are certainly times I have become impatient especially when the change in my mother involves forsaking things we perceive to be normal like having two breasts and a full set of teeth. But the new normal is really whatever mom is comfortable with so long as she is otherwise healthy and happy. So if my iPhone is a paperweight, so be it.

Don't let the bedbugs bite: Or, what not to say to someone who has Alzheimer's

Are those my blue slippers?

Yes mom, those are your blue slippers.

She asks me the same question nearly every morning since she got the slippers this past Christmas.

Those are nice slippers, she says as I help her get dressed for the day.

And they are. I went online to find a perfect pair of spa slippers in her favorite color with a snug Velcro closure and rubber soles to prevent slipping.

By the time she is dressed her attention goes back to the same pair of slippers.

Are they yours?

No mom, those are your slippers.

Those are nice slippers.

It is as routine as the rest of the day for mom and me right down to the last words we share as I tuck her into bed.

Good night mom, I tell her as I flip the switch darkening her room, and then the next one that leaves only the nightlight a glow in the hall. As I walk away she says, Good night… pauses… sleep tight, don’t let the bedbugs bite!

She recites the rhyme nearly every night like I am still the little girl who was certain that hairy monsters lived under my bed, the kind that would grab me by the ankles and yank me into the terrifying bedbug underworld if my legs dangled below the bed springs after the lights were out.

I used to give mom a kiss on the forehead and say, Good night, love you.

Until one night half way down the hall I heard her talking to herself. I stopped to listen anonymously.

She kissed me on the forehead… pause … said she loved me… pause again… who was that?

There was a period in her cognitive decline when my mother would know enough to be devastated by that missing critical detail – my name. But that night she blurted the question into an empty room of purple shadows genuinely seeking clarity.

A few days later mom was watching television while I sat across from her on the sectional. It was around the time she typically would go to bed. She had nodded off for a bit and was startled awake by the cat climbing onto her lap. She looked at me and asked, Is there anyone here who can give me a ride home?

On the heels of the bedtime bewilderment over who was kissing her goodnight and who loved her, the question was a disturbing signal of her further decline. It caused me to do something that annoys me to no end when other people do it.

It still ceases to amaze me how often old friends and relatives she hasn’t seen in a while move in on her in an uncomfortably close way, especially when you consider they are for all intent and purposes in mom’s world strangers, and say, Do you know who I am?

Or even worse, Oh Shirley you remember me from the bridge club right? Frank’s wife? So I am. . .? Like it’s a Jeopardy question.

To spare mom’s dignity I jump in with the answer when I know it. When I don’t the old friend is stuck having to remind her and mom pretends to give a shit. I actually love watching her finesse those moments.

Asking, Do you know who I am? should top the list of questions never to ask a person suffering from Alzheimer’s or any kind of dementia. That is unless you are the primary caregiver, the one who has lived with the person since they were diagnosed nearly a decade earlier, and the one who has been the person’s daughter for 55 years. That person has a special right to know how far her mother has drifted from reality.

So on that night, as mom was asking me to call her a cab to go home when the bedroom she had been sleeping in for the last six years was ten feet away, I needed to know.

After getting her into her nightclothes I sat her on the edge of her bed and asked the forbidden question.

Do you know who I am?

Ha! She was indignant and asked the question right back to me.

Do you know who I am?!

She may have forgotten a great many things but not her stubbornly defensive nature. I could see the wheels turning. She knew she should know the answer but was stalling for time.

Well, I responded, I am pretty sure that I am your daughter. So now can you tell me who I am?

Grinning she looked up at me and said, Well… I am pretty sure that you are I.

True on so many levels it was a winning answer if I ever heard one.

I tucked her in, kissed her goodnight, and told her I loved her.