I didn’t really want to retire when MS cognitive impairments forced me out of the classroom … but in retrospect, it did give me five years at home with Rick before his untimely death, and I appreciated that time allowed.
But there is now another reason to appreciate not standing in front of a classroom of 8th grade students learning about the Constitution’s origins and powers in our government … I doubt I could fulfill the expectation of all middle school social studies teachers … that unspoken but implied requirement that personal political preferences have no place in a classroom teacher’s syllabus.
I recently read the collective anthology of essays written by 27 psychiatrists … it is titled The Dangerous Case of Donald Trump. It offers practicing psychiatrists moral support from respected peers in opening the dialogue with troubled patients who need help in dealing with the stress of disagreeing with friends, family and co-workers over the status of the three branches of our government today. The book wrestles, writer by writer, with the conundrum of two mandates of the psychiatrist’s code: the Goldwater Rule and the Duty to Warn. The concensus within this group offering their perspective is that the Duty to Warn far outweighs the Goldwater Rule.
More recently, a number of former CIA officials decried the removal of security clearance of Former CIA Direcor John Brennan, and several other intelligence agents, by President Trump in a collective letter: “The move has united a who’s who of former top intelligence officials who served under both Democratic and Republican administrations… The group of former CIA directors, CIA deputy directors and Director of National Intelligence called the move “ill-considered” and said the threat of additional removals are not based on security concerns but have “everything to do with an attempt to stifle free speech.”
It may be time for educators to follow suit, forming a committee of professional teachers and school administrators who will write of the looming task of facing students when schools reopen in the coming days; social studies teachers will be the most likely to face contentious classroom debates among students, and on parent visiting nights among the adults as well, as regards the ongoing investigation of the current administration’s alleged criminal activity during the election of 2016. We can leave it to the psychiatrists to find a way to evaluate Donald Trump’s credibility as a national leader; we can leave it to the intelligence agents to file charges of irresponsible, unconstitutional activities of this administration; we can leave it to the members of Congress to seek the removal of Trump and his allies … but we must not leave it to individual classroom teachers to handle hot topic discussions regarding this president. The job of the teachers in middle school social studies classrooms is to present the Constitution … to explain the balance of power among POTUS, SCOTUS and Congress that is written into the documents’ lines … to explain why the first amendment is threatened by a president who wields power with a personal vengeance without modeling a disrespect of the office itself … to build an understanding why the second amendment writers never anticipated the possibility of a citizenry armed with weapons of mass destruction … to explain why the nineteenth amendment does not address equal rights (beyond the right to vote) for women and so seems to allow for the vulgar expressions of bravado regarding how “stars” like Trump can take advantage of women at will … and to explain the twenty-fifth amendment‘s potential to resolve the current debacle if only Congress were not so one-sided…
I am so relieved that I no longer hold the position of a highly qualified teacher of United States History in an 8th grade classroom filled with students who have conservative parents sitting next to students who have liberal parents … for how would I keep a straight face in defending their responsibility to respect the man in the office of POTUS?
But who among the educational community will take on the responsibility of soliciting and accumulating and editing such a guiding peer review of our current government for social studies teachers walking that tightrope?
Three more skin cancer sites this summer: malignant melanoma on my shin and chest, and squamous on my left thumb. So, three more surgeries, and after care left up to me. Apparently visiting nurses are not available for just skin cancer wounds care.
The weather for the month of July here in New England has been horrendous (to me) as we have had numerous heat waves, with temperatures staying in the nineties and humidity staying in the seventies for as long as ten days, and more often for at least two to three days. I have felt my mood affected by both the weather and the returning cancer and the absence of professional after care. I began wondering why I continue to halt the malignancy by agreeing to surgical removal. I’ve been lucky that I haven’t had to agree to chemo or radiation, as the surgeon keeps cutting until he reaches clear margins. I am told I am lucky. I don’t feel lucky. This makes ten different sites: four melanoma, three squamous, and three basal, all treated surgically, and dozens of early cancer sites treated with ‘cryo-surgery’ : freezing the site with a liquid nitrogen squirt that burns as much as the lidocaine injections for the surgery do.
I’m lethargic in the heat, and confused and depressed by my ongoing cancer attacks. I feel very alone, getting through these procedures, and handling the wound care twice a day for weeks after each surgery. I’ve just finished the third week of the third site, and it is almost time to go back to the dermatologist to allow him to look for and biopsy more sites. Do I want to do that? Or do I just want to take a passive response, stop looking for and treating these sites, and let mother nature take her course …
The psychiatrist has decided, with me, that this depression is deepening … that my grief is a complicated grief, and that my continuing wish to rejoin Rick in the hereafter is a clear indication that my current dose of medication is not sufficient. I failed last winter in my attempt to rejoin Rick, as first responders interrupted the process. My family and friends all told me it wasn’t my time … they didn’t want me to rejoin him. So I am here, but I’m not sure why, or what to do while I am. I won’t try that again, as I would no doubt be disappointing those who don’t want me to do that again. So I will begin a gradual increase in my meds, and I will see the doctor now every other week rather than monthly, while still seeing the counselor every week. They are both trying to help me see life as livable. I trust them. They are good people. I don’t want to disappoint.
I’ll also see another doctor this month: the endocrinologist who monitors the cyst on my thyroid and checks my blood levels for continuing osteoporosis treatments. I see him once a year, and usually have either a bone density test, or an infusion treatment, along with blood tests. The nurses who administer the infusion are very attentive, and I am not at all bothered by the procedure.
But I am exhausted. I am tired of medical visits. I am without any goals, and wish only to sleep in peace. But I toss and turn each night … I have vivid dreams in which time sequences and locations and personalities are all mixed up and make no sense. And Rick is not here to help me understand. I do not understand why I am still here, without him. It makes no sense. Why would God want me to have to live like this, without Rick? We belong together.
My life as planned stopped nearly a year and a half ago, when Rick died suddenly of an unexpected heart attack, in the wee hours of Christmas morning… at least, that is when I believe he died. He had just laid his head back on my shoulder, and closed his eyes for the last time, finally able to rest without pain. The doctors didn’t sign a death certificate until four hours later, in another state, after a valiant effort to bring him back. But I know, in truth: he left this earth in that moment, from our forever home. He left us all so suddenly.
He and I often joked about which of us would die first … we had both accumulated a lot of treasures – his were of wood and metal, primarily housed in the shop at the end of our driveway. Mine were of fabric and paper, some in the shop, some in the house. Both collections were so large they had become overwhelming, and he had added on to the tractor shed out back to hold even more. We knew there would be a day of reckoning for one of us, when the other had passed. We both believed quietly that it would be me who would go first … me, with all the diagnoses … I could recite them as a sing song litany … multiple sclerosis, mild scoliosis, osteoporosis, hyperhidrosis, malignant melanoma, squamous carcinoma, basal cell cancer … and for some reason, depression and anxiety…
His strength, compassion and love carried me through and over all of those maladies, through tests, and labels, and so called treatments … He was my partner, my love, my caretaker … my best friend. It wasn’t supposed to happen this way. But it did.
Some of the labels I’ve acquired have diminished in their importance; hyperhidrosis no longer reduces me to a dehydrated weakness. As a child, my aunt upstairs had suggested that, perhaps when I became a woman, my body would adjust and stop sweating profusely. She was almost right – rather than altering at menses, though, it was menopause decades later that finally brought relief from that syndrome. But by then MS and Melanoma had taken charge of my focus … damaging prescribed drugs and repeated surgeries took control of my schedule and my health. Rick, though, continued to be well, continued to encourage me to pursue my dreams, my teaching, my writing, my quilting. When I had to retire because of the MS cognitive symptoms, we made sure my pension was set up with a surviving spouse allotment. We didn’t do that with his pension, as, if for some unforseen reason I survived him, my pension would increase in his absence. And then the unforseen happened, decades before either of us had ever forseen.
The first season without him was winter … but we had prepared for that, as he would be laid up after the shoulder surgery. We knew Rob would come over to help with the new snowblower … we had enough firewood stockpiled close to the back door … we had a new refrigerator, a well maintained furnace in the house, and we closed the shop for the winter and planned to take it easy and do some day trip travels. I made it through that winter surrounded by friends and family.
Spring of 2017 was a depressing season rather than a respite from winter … the cold continued, the snow continued, and my inner debate about what to do with the shops continued until warmth finally returned in April and I opened the quilt shop. Again, friends and family were supportive and the shop occupied my time and attention. Summer came on, the quilt shop’s number of customers began to dwindle, and the long sunny days belabored the lack of business receipts. And then fall arrived. I had not yet been able to successfully have the shop furnace repaired or replaced, and know Rick could have done so by then … I felt badly about failing to do that, and to do other things that we had wanted to do together by then. But by then, I had begun seeking more sleep and fewer social events. I didn’t want to fail at anything else, and sleep seemed the safest way to spend the late fall…
I had survived all four seasons without Rick at my side. Rather than feeling accomplished, I began to realize that he was truly gone, and could not come back to me. And I began longing to be with him, and needing to be with him. And on December 21st, the first day of the fifth season without him, I did my best to join him, but I failed. I did not think I’d done anything wrong in trying to join him. I wanted to be with him at peace in our happily ever after eternity. I did not want to stay here for another round of seasons without him. But my effort failed, and instead of giving my friends and family the gift of happy, peaceful memories and reassuring thoughts of Rick and I reunited, I inadvertently gave them worries and concern.
And so I am still here … still unsure of who I am supposed to be, here without Rick. i am still the one with all the labels … the melanoma and squamous have reappeared … the familiar characters, dermatologist and skin surgeon, are again part of my schedule. There is a new therapist with whom I meet bi-weekly now, and she has set goals for me, for our sessions. One goal is that I will find new paths to joy, and one is that I will no longer have suicidal thoughts. Of course, trying not to think of something causes one to think of that very thing. So I try not to think at all …
My psychiatrist remains on my calendar each month. He knew me and Rick together, and is saddened by Rick’s death, and having known him, and having known us as a couple, understands the depth of my grief. His suggestion to help me find my way through this complicated grief is to open up and talk to my friends and family as I talk with him, sharing my longings and wishes to be with Rick, helping them understand why I did what I did. I told him I didn’t want to add to their worries. He told me they are already worried, and that they need to hear my honest thoughts. I trust his advice; that is why I am writing this, now. It is hard to vocalize my feelings and longings without tears, and I cannot hold an intelligible conversation through tears.
I continue to turn to music from the days when Rick and I were first together, trying to recapture the optimism and dreams that we shared. I try not to remember the music of the sad years, those in which we were most often stressed beyond our max, taking care of our elderly parents while continuing to be parents and grandparents ourselves. I continue to want to listen to Christmas music, as that was a constant in all the years of our lives together … but that holiday’s music is no longer a path to joy for me. He left me on Christmas morning. I cannot fathom that.
So I will go on, as an automaton … making quilts … offering fabrics and notions to those who join me in making quilts, or selling it reasonably to those who stop into the shop to share the love of fabrics and creativity. I will learn to do all of the medical self care that this century demands … all of the things Rick so capably did for me. And I will try not to ideate about death, though i will continue to long for his company, and wonder when I will be allowed to enjoy that again.
I’ll end this post with an appropriate song, sung by a young singer who, shortly after this was recorded, passed away of malignant melanoma. Wishing her a well earned happily ever after…
Karen Carpenter sings it perfectly … her voice so eloquently shares my wistful wondering … “tell me where do I go from here? You said you’d take me through the years, so where do I go from here?”
I have, on Facebook and more permanently here on a special blog page in his memory, posted a link to a song nearly each day since Rick’s death … for many weeks they were songs that echoed our courtship, marriage, life’s challenges and successes and our happily ever after years. More recently the songs I’ve been posting reflect the steady sadness that has become my ‘new normal.’
My purpose in posting those early songs was to share the rich happiness Rick and I found in each other’s company; Rick was a strong presence in my life, but a quiet, unrecognized kindness in others’. I wanted the whole world to realize what we and they had lost in losing Rick so suddenly. It was inconceivable that he should pass so suddenly and quietly from this earth. He was so much … and did so much, and gave so much … never expecting anything in return from others, and often receiving just that.
In perusing you tube for songs by our favorite artists from the fifties, sixties and seventies, I’ve come across a few that I don’t recall hearing back then. But perhaps I did hear them, but didn’t connect with them because my life at the time was in a different phase … today my life is very different than it has ever been. I am alone … never have I been alone before … I am never physically alone, as friends and family stay in touch with me, and visit me, or call or email me … but I am alone in my identity.
For the first portion of my life, I was one of many … when I was old enough to realize that my name, Theresa, spelled out “There’s a Crawford” I knew it fit my persona … I was just one of many Crawfords. When I moved from an all girl urban downtown parochial school that no one else in my family had ever attended to a small town public high school mid-way through, I had no identity … I was a true blank page, in a place where most had grown up together with friends as classmates, I could be anyone I wanted to be, and no one would be the wiser. I could be invisible, and no one would be worried or looking for me.
But when I met Rick, and we became friends and later a happily married couple, I knew who I was. He called me ‘his Lady.’ I was a singular identity … no one else filled that role. I knew what we planned, what we had and what we would need to achieve in order to meet our goals, and I set about becoming the person I became. It was hard work … physically, emotionally, academically and financially I worked hard to meet each challenge … sometimes walking home from high school and college … sometimes begging rides from neighbors and friends … Rick shared those plans and dreams with me, and worked as hard. We balanced each other well in strengths … what he could do I could not, and vice-versa. Together there wasn’t anything we could not do.
And when we retired we achieved our happily ever after. Our identities as son and daughter, and father and mother … each of those had taken strength and patience and strong faith, and each built confidence in ourselves and in each other. In retirement we were more simply husband and wife, and partners, and team mates, and still and always, friends deeply in love. And we knew what we had … we cherished those years each day one by one, unconsciously celebrating each one we had together, as though we knew an ending to that togetherness was just around a corner.
And now … I have to live into this new reality … no longer a wife … no longer a teacher, or a needed mother or grandmother … all others are grown and strong in their own lives. Each day still begins with an expectation that it will be lived, and something will be accomplished. There needs to be a plan, a dream, a goal to hold the focus on what it is waiting to be accomplished. I am without a plan. I rise and begin each day going through familiar motions … not because they are leading me toward a goal … but because each day must be lived in some way. The shop helps me fill some hours. Quilting with friends and young students helps fill some hours. Food shopping, laundry, bill-paying and Facebook fills many mundane, auto-pilot hours. There will still be family occasions … weddings, babies, showers … and more wakes and funerals will continue to compete with calendar days. But they will not be easily completed on auto-pilot. They will take their own measure of planning and attending, and holding a posture that will put others at ease and not invite commiseration or social coaching.
I will continue to walk this auto-path for as long as I need to … the new goal is to continue getting the beautiful fabrics into the hands of quilters who will make good use of them. The business plan is self-evident … running sales and discounts … advertising on Facebook’s many pages … encouraging others to take up or return to quilting by making it easier to get the fabrics and notions and lessons they desire… and when the bulk of the fabric and notions stock becomes depleted, it will be time to close that chapter … but not until the shop has little to nothing left to offer. And then … maybe then I’ll be able to rejoin Rick and continue that ‘ever after’ wherever he and I will be … together again.
“Dreams are for sleeping; love is for weeping; oh how I long to find a place to hideaway…” Karen Carpenter sings it so beautifully … https://www.youtube.com/watch?v=EKs_fYrMMqk
It’s been a month since I’d lost Rick to the unexpected heart attack on Christmas morning. I ask myself every day, how did that happen? We had changed doctors when our primary care physician retired unannounced, and then changed again when the doctor to whom he had bequeathed us as patients ordered a plethora of tests and his office staff could not keep up with the coding, resulting in our being billed repeatedly for things that ought to have been covered by our health insurance.
The new doctor that we chose operated via a network of nurse practitioners, all of whom focused on comprehensive referrals to many specialists. Rick and I had, as i said in my previous posts, more referrals that we had ever had to deal with, and this in the face of feeling pretty well despite our existing conditions.
When Rick sought relief for the pains in his shoulder, he was diagnosed via a painful MRI attempt followed by a new generation ultrasound. The rotator cuff tear was substantial, and surgery was scheduled. He was advised that he needed to have a full pre-op eval before hand. Included in that pre-op was a referral to a cardiologist’s practice, for a stress test. The results of the testing was negative (which is good in medical terms.) No evidence of any heart issues.
A week later, he had the surgery. Two weeks later the surgeon examined the site and declared it well maintained and okayed the beginning of physical therapy. As the end of the year was just a few weeks away, and the surgeon wanted the PT to be conservative, he and we agreed that waiting until the new year was acceptable, as our insurance would be changing with new cards, numbers, and different co-pays, etc.
But Christmas morning happened, and Rick died despite the efforts of the paramedics that responded to our call. What could we have done differently? Why did this happen to someone who had taken all the medical advice and followed all of the prescriptions for after care? I don’t have answers to those questions, and perhaps never will.
But what do I do now? I wrote to all eight of his doctors and referred specialists who had pending appointments scheduled for Rick in the new year; I let them all know that he had passed away, of a heart attack, and that I was lost without him. It was simpler to put it all in a letter and send it, with his obituary online, to his doctors through the postal mail. Talking one by one with each office on the telephone was unthinkable to me at that time … it would be impossible to remain composed, heard and understood, and so I sent the letter to each medical office, with the doctor’s name on the envelope.
For weeks I heard nothing in return. Then one day, nearly a month after his death, one of the specialists’ secretaries called and asked for Rick. I said I was his wife and could I help her? She said no, she had to speak with him to find out why his name was no longer in her database. I told her that I had sent a letter to all of his doctors about his death, and asked her to confirm that her office had received such. She checked ‘under a different category’ on her computer and said yes, they had received a letter which had prompted the removal of his name from their database. She also expressed her condolences.
I could not continue the conversation as my emotions spilled tears and my voice was quelled by the heaving in my lungs as I tried to control the crying. I said goodbye, and hung up.
That was two weeks ago. I have yet to hear from any other of the eight doctors’ offices I notified. I have not and will not call them to ask if they received my letter, for if one did, then they all did. I cannot see myself returning to that practice for my own general medical care. I have a neurologist, a dermatologist, a skin surgeon and a psychiatrist all in the Boston area; they are a tricky commute away, but I have no faith left in the local medical community after this past year of changes, referrals, new faces, endless appointments, tests, and then Rick’s death.
Ironically, my new insurance no longer requires a primary care physician to write referrals for me to see those specialists in the city … and I have no desire to continue with routine assessments for other health issues. My life partner is gone; truly half of me is gone; I will continue to face the cognitive challenges of ‘benign RRMS’, of recurring skin cancers, of likely skin surgeries, and of depression and anxiety that requires ongoing medication and consultation. I’m not looking to add any more diagnoses to my chart.
Will I bother to find another GP? Will I continue to travel into the city for my current specialists whom I trust and with whom I am doing well? For what purpose would I want to seek a GP’s help? I can get a flu shot at CVS. I can call a pharmacist to ask for advice with over the counter medications. I can ask my neurologist for help with MS relapses. What would I want another doctor to do for me?
I don’t have answers to those questions yet, either. I’m not in the right place right now to be making such decisions. I will wait until I am, I guess.
I so miss Rick. I so miss our future together. What will be ahead now?
To quote Dickens,
It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair…
2016 brought happiness and sadness, gains and losses. The year began in winter and ended in winter. There were more doctor visits for both Rick and I than previous years have seen. There were false reports and medical tests that added unnecessary stress. But summer brought happiness and optimism. We planned a great new adventure in our shops, and saw many more visitors than ever before. And as the fall began, we gained a lovely daughter-in-law and marveled at the most beautiful fall foliage any of us could remember. But in the final week the year signed off will a cruel slash of truth
It is a different world now. Yesterday we celebrated the life of my wonderful husband Rick, who passed away on Christmas morning. As I said on Facebook the next day, my heart died with him. Rather than a post here, I will publish his eulogy, written and delivered by our daughter Trish.
Laurent Richard Palardy may have been born in Peabody, but Georgetown was his hometown. If you knew him ‘back in the day’ you called him “Ricky”. If you knew him now, you called him “Rick”. Rob and I called him “Dad”. Our friends called him “Mr. Palardy”. Zoe and Tristan called him “Grampy”. But to my mother, he was simply “Hon”. She called him “Hon”, but she didn’t call him often. She didn’t have to call him, because they were usually holding hands.
My father had a smile that would light up a room, and a laugh that would lift the saddest heart. He had the largest hands of any man I have ever met, and he used those hands to work for the good of others. When I think of my father, I remember the quote by Saint Frances de Sales:
“Nothing is so strong as gentleness, Nothing so gentle as real strength”
My father was the original ‘gentle giant’. He always made a positive impact on the lives of others. In his work with the Fire Department, he used his physical strength to aid people, and his emotional gentleness to comfort victims. He volunteered with the Georgetown library, plowed snowy roads, drained soggy basements, and always showed up with a pickup truck and a smile when someone was moving.
Nothing was ever inconvenient to my father. He was never “too busy”, never too tired. He coached our soccer teams, and cheered all of us at every soccer game. He was an adviser to the Explorer Scouts with the Fire department, and coached Rob’s Lego League. He taught fire safety and woodworking in my mothers’ middle school classroom, and spent hours volunteering his time to help kids on community projects.
My father truly believed in the importance of nurturing and supporting kids. He opened his Wooden Toy and Gift business because he wanted kids to have toys that were safe and would last forever. His shop was always kid-friendly, and toys were always meant to be played with! I’m certain that Zoe and Tristan were not the only ones who believed that Grampy was secretly Santa’s Elf.
He would never have called himself a role-model, but he absolutely was. He taught us to never stand idly by when help was needed, and to never expect or demand a thank-you for doing what needed to be done. My father taught me to make my own decisions, and to believe in my own choices.
Above all, he believed in my mother. He respected her dreams, supported her ideas, and shared her values. My mother says, and we agree, that there was never, ever, a better man. They spent 50 years together, and were married for 46. And in that time, in all those years, my father never left the house without stopping to say “I love you”.
The time has come for him to leave, to go ahead without us.
And I know that as he goes, he hears us say “I love you”.
Please share your hugs and kind words generously with those you treasure. Here are all of us, at Rob and Heather’s wedding, enjoying the moment together. But now we mourn.
I know when I’m having an invisible relapse of invisible symptoms with this invisible condition called multiple sclerosis. No one else knows when that is happening, though those who spend time with me may notice a few odd things occuring.
I lose things … I forget things … I trip over things, or over nothing at all. My foot doesn’t come up high enough to take the next step and I fall. People have a conversation with me on the phone and I forget who I am talking with or what they just said.
It’s called, in the vernacular, Cog-Fog, or cognitive disonance. The online dictionary defines it like this:
the state of having inconsistent thoughts, beliefs, or attitudes, especially as relating to behavioral decisions and attitude change.
The damage done to the nerves by MS also affects your critical thinking and other cognitive skills. It’s not uncommon for people with multiple sclerosis to suffer from problems with memory and finding the right words to express themselves. Lack of concentration and attention is also common. Problem-solving skills and spatial relations can also be affected by the breakdown of myelin. Cognitive inadequacies can lead to frustration, depression, and anger.
And so I wonder … is the cog fog due to fatigue? Is the fatigue due to cog fog? It takes effort to remember something … to respond to questions … to learn new material … to walk without tripping over nothing … to go up steps by lifting each foot high enough … to look to the side without fully turning to the side … to take a corner without bumping into it … to walk in the center of a narrow walkway to avoid bumping from one wall to the other …
Do you remember when you first learned to drive a car, or a bicycle, or a bumper ride at the amusement park? Do you remember having to concentrate on which pedal performed which function? That in the bumper car taking your foot off the ‘go’ pedal was the same as putting your foot on the brake pedal of an automobile? Within a few seconds, as an adult, you adjusted your thinking and could use the go pedal to go or to stop. But with cog fog, you might have to re-learn that over and over, thus allowing yourself to be bumped by other bumper cars in the meantime…
So yes, cog fog contributes to fatigue, more so than the other way around. But most of us prefer to think it is the fatigue that causes the fog, and so better rest, or sleeping pills, could make us function better. But the truth disappoints.
It’s important to remember that cog fog is not a loss of intelligence, just as word retrieval issues is not the loss of vocabulary. The brain still knows what it knew … it just has issues retrieving the files so carefully stored. Everyone deals with “what was I just going to do?” moments … when you get up to get something in another room and forget what you went for, but when you go back without it you remember immediately what it was you were after? There’s an interesting explanation for that phenomenon, called the doorway syndrome. You can google it. But that is not cog fog. Cog fog does not immediately remit. At least, it doesn’t for me.
Sometimes my musings are a bit more esoteric than pedantic. The other night, I was wondering aloud to my husband Rick “Do you think there are fiction/mystery writers who work in the native language of Hawaii?” Now, this came about because we were listening to Christmas Music on the radio as we drove down the highway home from Maine. Mele Kalikiwaka is Hawaiian for Merry Christmas. But who originated the word Kalikiwaka for Christmas? Was it the missionaries who went there to convert the native population to Christianity? And how did they choose the letters within the limited Hawaiian alphabet? And why am I wondering this?
Rick is very patient with me, and agreed that it must have been a missionaries’ word that became part of the language of Hawaii. Was my thought process triggered by cog fog … like hearing music that isn’t playing is triggered by a hearing-impaired person’s wish to hear music? Or an amputee feeling pain in the missing limb?
The cog fog is now contributing to the fatigue, and I need a nap. Be well, all.
It’s been a busy few weeks, as we approach next week’s Humble Beginnings Adventure in the quilt shop. This is an event that has been in the planning and implementing stages for just over a year now. It began with a meeting at the fabric warehouse at the end of summer, 2015.
Kathryn, another small shop owner was there, browsing for fabric, as were Rick and I. After introducing ourselves, we spoke together of the mutual need to increase our customer base as we built our inventories … we spoke of wanting to publicize our shops’ existence, and how helpful the recent summer long Row by Row™ website was in advertising who and where we are. We knew of larger shops, well-established in their locales,that were well known and trusted to have the quilt-quality goods that the community of quilters looks for and appreciates, and supports. We knew that they ran successful shop hops each year, and had a loyal following of quilters. Our Quilters’ Quarter shop was then a year and a half old – and Kathryn’s was just coming up on her first year anniversary. She is running her shop as her business and career. I was running our shop as a community gathering spot for quilters and other friends to come together and enjoy creating beautiful quilts. With my teaching pension and Rick’s pension and social security earnings, we were not relying on the quilt shop for financial sustenance, as other quilt shops do. We did not have to meet a payroll, or afford insurance for ourselves and others. I was happy if the shop brought in enough working capital to pay its separate utilities and the monthly 2nd mortgage that had been incurred when we remodeled the second floor to relocate Rick’s woodworking space and make room for the quilt shop. The shop is doing that, but not yet earning enough to also pay for the expensive, quilt-quality fabric, thread and notions that we are acquiring.
And so we three together made a preliminary plan to gain partners in a shop hop venture that, like Row by Row™, would raise awareness of our shops and locations. We chose a time of year in which the environment would enhance the distance between our shops with its annual foliage display. Kathryn began recruiting a few more shops to join us, carefully selecting shops that were similar to our small size and unique in their own way. Geography was important, as we wanted shop hoppers to be able to enjoy the ride between our shops, with ours at the northeast border of our state, and hers at the south. In short order, we had five shops united in this goal. And a bit later a sixth was added. Kathryn was willing to handle the business end of the plan … she ordered brochures, tote bags, post cards, passes, etc., and organized a timeline of when to have our shop’s individual block patterns designed, block patterns printed, fabric to make up kits for our blocks, a sample quilt top completed at each shop; we began in earnest to be prepared. And each shop was to sell at least 50 Adventure passes to our customers. I gulped at that, not sure that we even had fifty customers… but we’ve managed to sell thirty-five so far. For their six dollar pass, customers will receive from each shop a free kit with fabric to make two blocks . It’s quite a bargain!
Of course, while we planned and kept things ‘under wraps’ until we were ready to reveal our plans, life went on and other plans were being made by other organizations. The printings had been ordered, paid for and received, making our chosen weekend dates unchangeable, before we learned that our local quilt guild chose the same autumn weekend as our Adventure weekend for their annual quilt show, which had always been in the spring. That meant that all quilters who were guild members would be busy on the Friday and Saturday of our Adventure’s three day event. And a local organization moved the date of their 5K walk/run for melanoma that starts each year virtually in front of our house; they usually scheduled it on Columbus Day weekend, but this year by chance chose the same weekend as ours, meaning that the road in front of our house (and shop) would be closed for a few hours on our Sunday date.
We knew that our son’s wedding would be two weeks after our Adventure, but didn’t know until late this spring that our nephew’s wedding would be the same weekend as our event, and as most of my family would be attending the wedding, they would not be around to visit our shop or support our efforts. No matter, I told my sister, the mother of the groom, who was very apologetic at the conflict in dates, that it would be okay, and that while we would miss their wedding we would be thinking of them. And I knew that our circle of artist-and quilter-friends would rally with us and help where they could, working around the quilt guild’s volunteer assignments and other calendar events. We will make this work. We have to make this work, as we have now invested several hundreds of dollars in event-specific fabrics, printing costs, kit-making supplies, refreshments, accomodations for customer comfort and so on. It is now feeling more like a business than just our own little retirement shop…
Having another cancer surgery on my back at the end of summer threw yet another chunk into our planned, relaxed approach to this event, as Rick was now my wound-care nurse, treating my back each night and day for the past eight weeks, trying to get the stubborn wound to heal. I’ve been prescribed both topical and oral antibiotics to aid the healing, and have been advised by the skin surgeon and his assistant not to stretch my back any more than minimally necessary, as that would only continue to open the wound. This, I kept to myself, trying to remember not to twist or bend while turning to pick things up in the house or the shop, but not wanting to sit out the chores related to planning an event for several hundred visitors in a three day period. Rick has arranged for the delivery of a “porta-potty” as there is no water in our barn to accommodate shoppers’ needs for a “facility.” He is planning to set up four canopy tents in the back yard to shelter refreshment tables and some sale articles. And we’ve used our ‘free become a member’ card at BJs to stock up on snacks as promised for the three days and possibly three hundred quilters (or more!) Our snacks will be simple treats and cool and hot drinks. We are not going to serve warm appetizers, though the other shops are planning to do more. I’m glad they will.
Rick and I are supplying the Grand Prize for the winner of the drawing at the end of the Humble Beginnings Adventure: we took one of our Singer Model 66 handcranks, dated 1915, added a hand crank and put it in a white oak base that Rick built for it, with two storage compartments containing needles, bobbins and a few other items. Kathryn asked us to assign a value to the prize, and we collectively came up with a retail price of about $200.00 Not too shabby a grand prize!
What I’ve learned from this experience is that running a quilt shop hop is no small matter, involves an output of a lot of money, either cash or credit (and as we don’t generate lots of cash it has been primarily on credit, with interest charges added.) Instead of feeling like we’ve done something exciting for our community of quilters and good for our shop, it feels like we’ve needed a lot of our friends’ help to get this up and running, at a time that the quilt guild itself needs their time and energy. My central business goal is still the word “HAPPY” and I do still feel optimistic that this hop may at least pay for its own expenses eventually, but presently it feels like it has added a large financial weight to our plates. It feels less like our normal ‘happily ever after’ and more like a business.
Our New England autumn environment will either make or break this event … the weathermen are predicting a ten day forecast of clear skies and comfortable temperatures next weekend … that will be good for the road race, the quilt guild, our nephew’s wedding, and our unpredictably-ill-timed Humble Beginnings Adventure. We’ll live and learn through this one … and perhaps be more reticent to offer to join in next time. We’re not spring chickens anymore … we’re more like autumn leaves, smiling brightly but fading easily! We are truly blessed with good friends who are like fairy godmothers with their rakes and their dusters and their work gloves and their wonderful creativity. We want to make this a happy event for all. Wish us good weather and luck? And thanks to those who will come and support us in this Adventure!
This week I heard back on the chest CT scan (the doctor’s nurse practitioner is still trying to identify why I have come and go rib pain when using my hands to sew, carry, etc.) Heavy breathing at night after climbing the stairs and lying down is another symptom that she would like to identify.
The results showed pulmonary nodules, but they are small enough to say that they are most likely not malignant, and so I will have a repeat CT scan in a year to compare the views, watching for any change in size.
The simple basal site on my back hasn’t yet healed, and the abscessed stitch that is weeping has enlarged from 3/16″ to 3/8″. I called the skin surgeon back to let him know that it continues to weep fluid and blood despite the past week of antibiotic cream twice a day; he decided to start me on an oral antibiotic today. I’m to continue that for two weeks, and if it has not by then healed, come in to see him to decide whether it needs another suturing. I’ve scheduled that appointment for one of the days that we are not in the shop.
I do trust my instincts. I regret not having held to them ten years ago when I allowed the first neurologist to talk me into the nightly injections which I now blame for the blooming of all these skin cancers; the disease modifying drug that I injected for four years was designed to attack my immune system, just as any chemotherapy will do. I believe in the six years since discontinuing the DMD my immune system has regained strength and the skin surgeon believes my immune systemis now attacking the sutures in my back – thus the continuing fluid and lesion growth.
Because I have had two melanoma sites (successfully removed with Mohs surgery two years ago) I do think that monitoring these other things that occur is logical; if melanoma metastasizes, it most often will do so with cancer of the lung, liver or brain, all of which are serious cancers. I will stay on top of these skin cancer sites, whether they are basal, squamous or malignant melanoma.
As for the multiple sclerosis … it is way, way back on the proverbial stovetop… that ‘whatever it is’ is still there, but just in the background of the skin cancer and the watch on other organs.
Last week, I heard back from the nurse practitioner that she had the report from the cardiologist (the one who had said that I had had a silent heart attack a month or so ago) … the two-day echo cardiogram testing he had suggested was completed, and it showed no evidence of ischemia, and so there is no evidence of my having had such an attack. I felt validated by that report, as I was sure if I had had an attack, silent or not, I would have known something was different.
I continue to avoid inflammatory foods (fried, meat, dairy) and believe my instincts will keep me as healthy as I can manage to be. I will avoid another episode of chemotherapy at all cost, physically, emotionally, and financially.
Be well, all. It makes life easier, if you can.
Update August 26, 2016
The sutures are removed, but a day later and I woke to find blood on the back of my t-shirt. Rick treated the small break-through bleeding with aquaphor and a small bandaid. If it continues to bleed, (being one of the signs of cancer, bleeding that doesn’t heal is a concern) we’ll try some of the formula that the dermatologist prescribed once before when my arm’s biopsy continued to bleed longer than it ought to have. I’ll let you know how that goes.
Update August 27, 2016
Uh oh … more bleeding last night. The incision without its sutures seeems to be spreading apart. It’s possible that the swelling on the sides will dimish with time, but I’ll call the surgeon and ask him to take a look at it early this week. And, I think I see a remaining suture at the very bottom of the incision…