The Pit Crew

Why do I get to survive and, relatively speaking – within this crazy-ass incurable NF2 world – thrive, while bright spots of sunshine and goodness like Michie O’Day and Felicity Lingle die?

As you may have noticed, I’ve fallen into the Survivor Guilt portion of our program.

I’m sure I’ve said this before and this is the absolute truth of it all – if not for Ten, Jen, and Oni, I’d be dead or in some crap nursing home and, most assuredly, would have been before the end of 2021.

Real life, in case you missed the newsflash, isn’t like the movies. You know, where John Wick takes blow after blow, gets shot, falls down zillions of flights of stairs, gets up and fights back or escapes on fleet feet. I don't have a John Wickian constitution – total bummer. I KNOW.

I know that, at my current health level, I could take care of myself if I had to but it would be a LOT of work and I’d need to move to an assisted living type apartment. Those are pricey as fuck though. Maybe just a regular apartment would be fine but I’d need one within a block or two of the T (the train/trolley line). I can’t drive anymore so I’d be on public transportation for all my doc appointments.

Whether on my own or in assisted living life would be a LOT more expensive, a ton of effort, and really lonely without Jen, Ten, and Oni.

Now I can focus on blogging, exercising (and feeling guilty about not working out enough), staying on top of my symptoms and in contact with my docs, making some art, reading, and, of peak importance, Cake appreciation time. Oh yeah, there’s also all that important time that I spend staring off into space pondering such world shaking concepts like:

• Do salmon dream?
• How long would it take for an abandoned golf course to revert to a natural state? How long before it turns into a field filled with wildflowers, bees, and bunnies?
• Are Republicans at all capable of self-awareness?
• Do orcas laugh? Do they bust a gut when they sink those yachts?

Our good boy Cake earns his keep by catching mice and looking tremendously handsome. Me? I’m more or less ornamental. Luckily, at this point, I’m still self-cleaning. No need to dust.

IF I was on my own, I’d have to spend most, if not all, of my time doing basic upkeep shit. What would take a healthy person no real time at all, might take me a day and I’d need serious naps afterward too. Laundry? Dishes? Scrubbing the loo? Vacuuming? Dusting? We can completely forget about cleaning the baseboards, high dusting, and windows. My balance is just not up to the task.  

Mind you, this might well eliminate the need for all those pesky PT exercises. I mean, wouldn’t performing all these chores amount to the same thing? I’d just need to add in some cardio and *BAM* I’m good. 

Okay, so there’s an upside. Nah, I WAY prefer having my family here. Cake may earn his board by slaying mousies and I don’t BUT at least Ten doesn’t have to clean a second, larger litter box.

Huh? Eh?! That’s something…RIGHT!?

Michie O’Day

I signed on to Facebook last night and got some tremendously unhappy news. My friend Michie O’Day has died. She took the last train to the coast on September first.

I suppose this didn’t come as too much of an enormous shock. I hadn’t seen any posts from her since July and, in general, her posts had been pretty sparse over the past few months. I suspected something was up. Still, reading the news was startling and I'm, of fucking course, wicked sad.

Michie and I had an enormous amount in common. We were both painters (Her, traditional landscape. Me, figurative along a German/Austrian expressionist line). We were both wild about recumbent triking. We loved to travel and solo travel was definitely a thing. We were around the same age – just one year apart. 

Into the Wild, Michie O'Day

We both have/had neurofibromatosis type 2 and our manifestations of this rat bastard disease were remarkably similar. In fact, our symptoms, experiences, and surgical histories were more alike than they were with our respective NF2er family members.

In the face of adversity (and Michie and I had/have plenty of that), we were/are obstinately upbeat. Well, she was bright, sunny, and determined to persevere. Me? I’d get pissed – you know, “NO fuckin’ disease is gonna take ME down. FUCK THIS SHIT! I will SO walk again!” Etc. etc. ad nauseam. Point is, we were both persistent bitches.

I think she stopped triking before me. Though her legs still worked, her balance had degraded too much to manage getting up and down from the recumbent trike. Solo triking would have been daunting if not full on impossible.

Why did I stop? The Amazing Bob had just died and I knew that I was too down and distracted to pay proper attention to the road and traffic. I didn’t trust my deaf self OR the careless drivers in their giant SUVs.

I believe Michie and I lost the ability to paint (as we once had anyway) at around the same time. For me, it was primarily due to my essential tremors – I just shake, rattle, and roll too damn much. For her, I believe it was her failing eyesight and the muscle weakness in her hands. She could no longer wield a paintbrush.

Michie at the Portland Museum of Art

Michie was a huge inspiration to me. She was deaf, losing her sight in one eye, and in a wheelchair but was able to thrive while living alone. WOW! I don’t know the specifics of her home arrangements but I know she had a caregiver coming in (medical check-ins? physical therapy? dunno), as well as a house cleaner, and grocery delivery. She had an active social life with dinner parties and days out at museums and restaurants.

She also contributed to this here blog, Tell Me A Story.

In May of 2022 she wrote Living With NF2 where she spoke of our special talent for growing benign tumors in our brain and spinal cord. 

Rather than talk about the surgeries, treatments and medical consequences, I want to share some of what I’ve learned over the past 39 years since diagnosis

Michie and I were/are especially talented tumor growers. Until September first we were both quite good at survival too.

In 2015 she wrote of a solo trip (while deaf and in a wheelchair – Jesus, overachiever much?) that she took to a rocky island off the coast of Newfoundland. While there she painted, did chair yoga, drank gin and tonics, and stared out to sea. I'm just surprised she didn't solve some international crisis while there too. You know, all while sipping her gin and putting the final touch on her latest seascape.

In 2016 she wrote about her beloved hearing service dog, Doc. That year, she also wrote about transitioning to a wheelchair and, generally, needing more daily help.

Michie O’Day was a hero.

Living with Neurofibromatosis type 2

A guest post by my friend and fellow NF2 warrior Michie O'Day.

May is a Neurofibromatosis (NF) Awareness Month - a busy time in the NF community. Patients, family members, leaders in medical treatment, science, research, patient care, and advocacy are all busy sharing important information - and raising money for our cause. This is all good, but I want to take a different tack... Here goes.

I have NF2 - which I describe as a special talent for growing benign tumors in my brain and on my spinal cord. Rather than talk about the surgeries, treatments and medical consequences, I want to share some of what I’ve learned over the past 39 years since diagnosis. My goal all along has been - and remains - not to give up too soon. Even though this genetic disorder can been debilitating, progress is being made. Surgical techniques are better (and less invasive!), scientific knowledge about our messed up gene, which allows these tumors to grow, drug options, patient care - all of that has improved significantly.

I’m also a good patient. I’m resourceful, confident in my abilities and coping skills, resilient yet open-minded. (I’m just talking medicine! Not politics.) I expect a lot from my doctors, and I want them to expect a lot from me. All this leads to my ultimate goal - to live a happy and productive life. How to do that while carrying this heavy load? Here’s my short list.

Get Good Advice
In 1983, while living in NC and after a CT scan at Duke Medical Center revealing acoustic neuromas, I sought a second opinion from Dr. Allen, then practicing neurosurgery at Johns Hopkins. I knew him from previous consultation in the late 1970s and trusted him completely. His words are still guideposts for me.

“You face a lifetime of surgery.” He thought I could do better than the young neurosurgeon at Duke who wanted to operate. I did not like the surgeon at Duke so was receptive to Dr. Allen’s advice.

“You need someone who is highly, highly skilled, who has excellent judgement, and whose philosophy works with yours.” - Dr. George Allen

This affirmed my instinct that NF2 tumors are not for your “neighborhood neurosurgeon.” I’ve seen this happen in my own family and with others who have recently been diagnosed and don’t fully understand what’s at stake yet. Get referrals and travel if you must to find the right doctor (neurosurgeon or neurologist, depending on your case) and continue with him/her for as long as you are pleased with their qualifications and care. As Dr. Allen advised, don’t make yourself crazy going all over the country interviewing various surgeons every time you need treatment. There are more doctors treating NF2 patients now, but Dr. Allen’s advice has served me well. Continuity of care is important.

I also met with the pastor of a small church I attended in Henderson, NC. Rev Jones had multiple sclerosis. He was a fine man and very helpful to me - a frightened 27 year old. “Remember ownership” he said. “You have NF. It doesn’t have you.”

“Instead of asking what if? Learn to say so what?” also from Rev Jones, who knew where of he spoke.

Some Observations
A life with NF2 is indeed a journey. You’ll come to know yourself well. You’ll also develop your own philosophy about illness and develop practices for dealing with the inevitable disabilities and discrimination. I cannot imagine doing any of this without strong spiritual beliefs.

Over the years, I’ve learned the importance of being adaptable, the need to think creatively to roll with the inevitable changes that come with the disabilities caused by your tumors and treatment.

Be prepared for major changes in your lifestyle and activities. For example, hearing loss in lesser degrees changes some things. Complete deafness changes many more things - and will likely have a profound impact on relationships and career options.

Loss of all my hearing was of course a big deal, but it was not devastating in the ways I feared. With the support of good employers, family and friends, I continued to work, had an active social life, married a good man, began painting, traveled, and relocated to the coast of Maine. I also had an amazing hearing service dog - “Doc” - who added much to the quality of my life.

Loss of balance and peripheral neuropathy cramped my style in bigger ways. A wheelchair became a necessity in 2015, so there are many places I simply cannot go now. The neuropathy is weakening my hands. No more painting or cooking. I miss painting a lot, but if anything I have more appreciation of art by others. I miss cooking too, but I can still eat! Now my vision is at risk. Yikes! Creativity won’t compensate for blindness - if it happens - but spiritually grows. I’ve found that some Buddhist philosophies are helpful with loss too.

Build good working relationships with your doctors. The right doctor will respect you and listen to you. Remember that you are a diagnostic tool as well. Information about how you function in your day-to-day life is important.

If you find that your doctor is not listening to you, respectfully request referral to another physician.

Emotional loss comes with disabilities. Know that and get help for depression if you are hurting. Yet also understand that with disability you can also find creativity - new ways of doing things you enjoyed before, and new activities to try.

Be careful about people who treat you as “less”, who put you down. They may not understand what your daily life is like and can damage your self-esteem (which may already be fragile after the surgeries and ensuing disabilities). This has happened to me even with close friends. It has been sad, but I wonder if those who have known me longer have a harder time dealing with the “new” me?

Keep up with your appointments. Don’t skip MRI scans or other diagnostic tests. Try to follow the doctor’s plan for you. After all, that’s what you’re paying for, and timing is crucial for treatment. If you’re having problems with their directions, it’s your job to communicate that to the doctor. Hint: use good judgement as to how and when you complain!

Having a good sense of humor is helpful for relieving stress. Just don’t go overboard. Being able to laugh at myself is probably the best tool I’ve got.

That’s it for today. I hope you’ve found my list interesting and helpful. Personally, I think I have a truly fascinating life. It’s slower than it used to be, but I like the wisdom that comes with age. And patience? Still working on that.

Nissa Marie

My friend and fellow NF2 (Neurofibromatosis type 2 ) warrior, Michie O’Day has a friend whose battle with NF2 is winding down. She’s graciously allowed me to share her words.
~~~~~
NF2 is not a disease; it’s a rare genetic condition. Those of us who have it are missing a tumor suppressing element on chromosome 22, and therefore we grow non-cancerous tumors in our central nervous systems. Because there’s no “off” switch, we grow these tumors all our lives (usually beginning in our 20s). Surgery and radiation have been the only treatments for decades; now chemo therapies are being developed and showing promise, also gene therapies are in a very early stage of testing. If something else doesn’t end our lives first, NF2 is our exit route. It is slow, for some people it is physically painful, and it’s just so sad. I’ve witnessed it twice when my mother and younger brother died long ago.

But there are many sad endings in this world, which has had a bellyful of them since COVID struck. Tonight I need to tell you about one person.

My friend, Nissa Marie, has been fighting NF2 for over 20 years. She is indeed a warrior, and is extraordinary in her kindness, humor, faith and love for others. (The list keeps going). Knowing her diagnosis, Nissa proceeded with her goal to graduate from medical school and become an ER physician, which she did successfully until deafness (part of the NF2 experience) forced her into early retirement. She remained active caring for her nephews and others, between surgeries and other treatments, and her inevitable progressive disabilities.

And Nissa bakes! She makes cakes and cookies, with the help of her 4-yr old nephew, Maverick, to give to friends, and has won baking competitions. I love how Nissa continues to find ways to heal.

But now, medicine has done all it can do to keep Nissa functioning, serving and being a joy to the people she loves. Her remaining choices revolve around end-of-life care. She wrote and asked for my prayers and asked me to ask others, which I am honored to do. I’ve been through rough times & losses due to this genetic horror story and can speak with enormous gratitude about the power of prayer that comes from your inner circle and beyond.

If you pray, please remember Nissa in yours too. She is really special.
~~~~~
The closing bell comes at a different age for each NF2-er. My mother lived to be 85, my cousin Carmel lost her battle while in her 50s, friend Felicity was in her late 40s, her father was in his mid 60s.

Paraphrasing my buddy John Donne:

No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, earth is the less…any person’s death diminishes me, because I am involved in humankind, and therefore never send to know for whom the bell tolls; it tolls for thee.

Wonder Women

This post is for Celeste, Felicity, Michie and everyone else who’s struggling with the bullshit of a sketchy corporeal and/or cerebral existence.

I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.
~ Anonymous

I’ve always tried to be strong, unafraid and unfazed, always moving forward to meet the challenges of 48 bazillion scary surgeries AND, at the same time, maintain my warped sense of humor. I’ve done this not just for me but for my younger sister who also has the family curse, Neurofibromatosis Type 2.

Warum? I motherfucking REFUSE to let this rat bastard, shitheelian disease consume my life. Yes, the last couple years have been action packed (the battles, it seems, come in clusters – a few years in my 20s. My 30s were quiet, My 40’s were WAY too fucking busy (one spine slice up, three brain ops and my hearing took the last train for the coast). NF2 left me mostly alone until my late 50s. Since hitting 60, I’ve had two spine surgeries, almost lost my left eye and, so far, just one craniotomy. And I just turned 62 – all this excitement is one hell of a challenge to my cynical yet weirdly buoyant state of mind.

I don’t want Celeste or my young pal Felicity to despair or define themselves by Nf2. My friend Michie, who’s my age and also a painter, is much like me. She’s a partner in FUCK this Nf2 shit – I will enjoy all that I can/while I can and I will laugh. Nf2 is NOT the boss of me!

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.
 ~ Martin Luther King Jr.

Right, the fuck, on!

On those days when I can’t even crawl, I rest. Yesterday was one of those.

Resting is not laziness, it’s medicine!
~ Glenn Schweitzer

If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.
~ Carmen Ambrosio

That’s hard to keep in mind and, more challenging yet, to give myself credit for those small bits. It’s necessary to keep me keeping on though. This morning I've brushed my teeth AND flossed. I walked down the stairs. Later, I’ll take a shower and wash my hair (standing up, if my legs feel strong enough). I won’t be able to walk down to the seawall every day but I will again and, in a few months, maybe I’ll even be back to my regular mile and a half morning rambles. I can see that happening!

Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.
~ Kelly Hemingway 

I don’t like freaking out or swimming in the Sea of Despair. Who, the fuck, does? We all gotta feel what we feel ‘cause it ain’t gonna go away if we push it down into that steel lock box in our beans. What’s BIG important for me is to know that sadness and panic are temporary.

I just need to breath deep, eat a cookie and, maybe the same day or maybe tomorrow, reboot my system.

Life is either a daring adventure or nothing at all.
~ Helen Keller

TELL it, mi amiga!

I often say now I don’t have any choice whether I have Parkinson’s, but surrounding that non-choice is a million other choices that I can make.
~ Michael J. Fox

Right on, mon frère!

Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.
~ A. A. Milne

The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten.  
~ Anonymous

Doc

Doc was my pal Michie's beloved helper dog. He was a trained service animal as well as a true BFF. This is their story.
~~~~~~~~
Six years ago yesterday, Doc exhibited unmistakable symptoms of a brain tumor. Having been through four surgeries myself to remove brain tumors there was no way I could put him through that. He would be so confused and in such pain... So six years ago today I held him in my arms as Dr. Plor gave him the injection to put him to sleep. Here is Doc's story:

My family always had a dog when I was a kid, so after I became deaf at age 39 I knew I wanted a hearing service dog. Not only could such an animal alert me to sounds I could no longer hear — doorbell, alarm clock, telephone, smoke alarm — but as a certified service animal he could go everywhere with me. No kennel bills!

In October of 1998, after six months of intensive sound-response and obedience training in Michigan, Doc flew in the cargo hold of a Delta jet to Baltimore, where my husband and I picked him up. Like a new mother, I held him — still shaking and scared from the flight — on my lap in the back seat of the car for the 60-minute drive home.

And so it began....

Doc and I worked with a regional trainer for several more months — we aced our exams and became an official team. For the next 12 years he alerted me to the assigned sounds and so much more. With Doc proudly wearing his cape, and his ID card in my pocket, we went to museums, hotels, stores, restaurants, hospitals, offices and many friends' homes; we travelled on trains, planes and buses together and he loved riding shotgun in my car.

He shared my joy in a fresh snowfall and trembled with me when I cried. He curled up on the hospital bed with me after neurosurgery. He was a charmer, so smart and funny. Friends and strangers were drawn to him. Those who knew him agreed that he was the best dog who ever lived — and he really was.

When I moved to Maine in 2000, it was just Doc and me. What a companion he was! In addition to his work, he was great company on a road trip and at home... curling up under my desk when I worked on the computer, snoozing by my easel while I painte or watching from his chair as I worked in the kitchen. We took long walks together, played in fields, sailed on Penobscot Bay, sat on the sofa and gazed out my living room window at the village, harbor and islands below. He taught me about patience, about grace in the face of adversity and, most of all, about unconditional love.

In 2004 I signed up for a two-week course in drawing and painting at the Haystack Mountain School of Crafts on Deer Isle. I was pleased with my current style and method of painting, but welcomed the opportunity to work without distractions for two solid weeks. I had no specific plans or goals for the class — only knew that I wanted to do something different. This was an opportunity to experiment, so I figured I would just go and see what happened. Doc, of course, went with me. Every day.

On the first day of class we were instructed to cover the studio tables with big sheets of brown craft paper to protect the surfaces from our messy supplies. I looked at Doc on the floor beside me and drew him on the brown paper. I had never enjoyed drawing. The color and texture of the paint turn me on. But drawing Doc was fun!

For the next two weeks that is just what I did. I experimented with different papers, pencils, charcoal, chalk, and water colors. I drew Doc life-size and on smaller scales, and I had a blast. About a year later I was ready to try to capture him in oils. The paintings went quickly and I often laughed out loud as I worked.

I also knew that I would outlive Doc and I wanted to record him so that I would have tangible evidence after he was gone. Thus began the series of paintings.

I lost Doc on November 15, 2011. Today, his paintings and a few drawings fill my home in Portland. Maybe I will paint him again. I will surely continue with the drawings.

During the years that I was painting Doc, I said that I was not a pet portrait painter. I could only paint Doc because of our bond. I still do not consider myself a pet painter. The idea of painting a dog that I don't know leaves me cold. But two other dogs I've met since Doc's death stole my heart.... I'm not done yet.

Transition Lessons

A post from my awesome friend Michie O'Day—fellow painter, triker and NF2-er.
~~~~~
I've had a revelation. It's taken a few day to unfold and I'm not sure that I can explain it adequately. It's spiritual, amongst other things, but I'll try.

I'll begin with the hymn that is playing on my mental jukebox.

Amazing grace, how sweet the sound
That saved a wretch like me.
I once was lost, but now I'm found.
'Twas blind, but now I see.

Such a beautiful old spiritual. Everyone from the South knows it well. We grew up with it—Sunday mornings, every funeral and more.

Here's my news: I no longer hold any negative feelings about now being in a wheelchair. Wow! But it's true. I really don't. I'm beyond the shock of rapidly deteriorating mobility. (For the record, the progressive neuropathy seems to have slowed down. Not stopped, but at least not worse by the week.) I fully and totally accept who and what I am. Better yet, I even embrace it, as was my intention with deafness once Dr. Martuza told me that prognosis 20+ years ago. And it's been my goal with the mobility issues. But I had real trouble embracing such a sea-change and honestly thought my life was going to be all downhill from here. Not so!

Through the grace of God, I now see the beauty (a catch-all word) of needing help and allowing others to help me. This is not the way I was raised. I was raised to be independent and to take care of others, especially my mother and brother (who both had NF2) in times of trouble. So, it's a big leap for me to say, yes, I'd like help with [fill in the blank]. It can be as simple as carrying my coffee to the dining table to as intimate as help bathing—which I do need and appreciate.

Others have been helping me in many different ways for a long time but I often felt ashamed for asking. That's me, not them. Many people have been generous and kind. I'm the one with the hang ups. But what I've finally learned and accepted is that their generosity (be it time, money, good humor, lifting, carrying, the list goes on) is genuine. My job is to accept it and appreciate it. And to be honest about what I need.

Pretending just doesn't cut it.

So where am I? Well, I now have a new vantage point, a new perspective. Some of that comes with aging. (I'm now 59. Gasp!) but I also believe that dealing with something like NF2 accelerates the path to compassion and wisdom. And I'm grateful for that.

So how did this break-though come about? I have to give a lot of credit to Gail, my care-giver. She's here 3 mornings a week. Gail's a ray of sunshine, warmth and friendliness—letting herself in the front door and bustling around my kitchen, then waking me up for coffee and breakfast. Yes, I am spoiled! No way to sugar-coat this. I DO appreciate it—big time! Gail radiates a lot of warmth and positive energy. And I'm no fool—I'm soaking it up as fully and fast as I can.

I want and intend to learn from everything that happens to me. I'm lucky in that my basic needs are met: I love where I live, I have many wonderful friends, my days are full and interesting, I have creative and productive pursuits and I don't have any pain. (Amazing....) So the balance is good.

My disabilities will get worse. We know this. We just don't know what will collapse next or when. How does one live with that kind of uncertainty? First is to recognize that I'm not the only one. We all face these things at some point. The idea is to deal with it as best you can when it happens, to cultivate productivity and happiness, and to give and receive.

 This has been the lesson of transitioning to a wheelchair. I'm laughing and smiling as I type these words because I feel like the luckiest woman alive.

You can view more of Michie's fabulous work here at her website MichieOday.com.

On Fogo Island

While Jen and I were in Montreal, my friend Michie O'Day was, and still is, up on Fogo Island off the coast of Newfoundland. Michie and I have obscene amounts in common—we both have Nf2, we both paint, she was a triker before me, we face adversity in much the same way (with pragmatic machisma and humor), we're about the same age AND we're both mad about rocky shorelines. This was her note to me from her remote island escape.
~~~~~~~~~~~~~~~~~

The view from Michie's room!

It's Sunday morning as I write these words.  I'll leave Fogo Island on Tuesday after nine amazing, wonderful, restorative and healing days.  I found just what I was looking for here—multiplied exponentially.

Living with Neurofibromatosis Type II  is both a challenge and an opportunity.  I've said, since the early days (I was diagnosed 31 years ago), it shows you the stuff you're made of.  I've also said that God didn't give me NF2  (my god is a loving god and just wouldn't do this to me), but he did give me the tools I need to live with it. I'm optimistic, resilient, funny and most of all pragmatic—all essential traits for dealing with the endless tests, the uncertainties, the long and painful surgeries; the life-altering and progressive disabilities that come with the NF2 territory.

Sure it's tough, but it's the only life I know.  It's also been my ticket to early retirement, my incentive to move to Maine—one of the most beautiful places in the USA—where I've been very happy and matured as an artist.  NF2 has given me perspective and peace. It has introduced me to some of the finest people I've ever met—friends with NF connections, who I wouldn't have met otherwise, and brilliant, gifted, kind medical professionals, among others.

Cuppa by Michie O'Day

But at age 58 my batteries were running low.  Mobility was (and still is) declining fast.  Deafness seemed easy (which it's not) by comparison.  And I honestly began to wonder if my life had peaked and it was going to be all downhill from here.  Was it still worth the effort?

Benediction by Michie O'Day

Then, last summer, some of my neighbors honeymooned in Canada—including a stay at the Fogo Island Inn.  I looked it up and knew I had to go there.  The place is expensive (and worth every penny!)  I looked at my budget and figured with careful planning I could go in 2017.  Then I looked at my mobility (I began using a wheelchair 9/21/2015) and decided there's no time like the present.  And here I am!

The view out my window for the past eight days has been magnificent slabs of granite and the powerful, beautiful North Atlantic Ocean.  The inn itself is a wonderful combination of informality and elegance. Think beautiful new hardwood floors and floor-to-ceiling windows; handcrafted furniture and brightly colored quilts—all locally made.  The remoteness is welcome.  It's just me, the earth and sky.  But it's not uncivilized!  A gin & tonic with ice made from the millions-of-years-old icebergs that float by Fogo Island each spring is a marvelous thing.  And the food rocks—especially if you like cod.  Best of all though is the staff.  They are all friendly, warm (without hovering), helpful, kind, knowledgeable. A terrific and nurturing group of people.

I've been painting here.  I'm going to go home and paint a lot more.  I've also been doing chair yoga.  I'm going to go home and take better care of my body.  I've been eating like royalty.  I'm going to go home and diet!  I know that my disabilities are likely to get worse, but I'm not giving up yet.

I'm renewed and I'm happy.

With zest for living,