Things are Looking Up
Well, I have to clarify that. I still don’t dare look up unless I am holding on to something (or someone) steady. But for the most part, the vertigo is gone, the shingles on my forehead have dried, the new, improved, speedier brand of acyclovir is doing its job without any side effects. My eyelid is no longer swollen shut in the morning, and best of all, I can read the screen without glasses! (Yes, my print is bigger than yours, no doubt.)
I’ve also been able to start on the new book, the sequel to my MS book. I’ve opened a page for it on Facebook, and I’ve created and printed out its cover at CreateSpace, and have begun the actual drafting at FanStory.com. The hardest part is always getting started. This one is not opening with a prologue of tears; rather, it opens with a brief note about having written the first with the help of readers at FanStory. That will probably change as I get farther into the timeline of the melanoma diagnosis and treatment. But for now, it got me started. Saying thank you is always a nice way to start. I’ve deliberately set a deadline of the end of July for this book; I have two other ‘books in progress’ that will wait until I’ve finished this one.
I have more than one iron in the fire right now. Rick and I have been meeting with a few other artists (have I already told you this? I apologize if this is repetitive … I truly have no short term memory cells still functioning up there.) I’ll look back and delete this if I have. But this small group of artists are meeting to strategize and brainstorm together about marketing what we produce. We’ve met twice now, and are planning to meet again next week. Our homework this week was circled on our mind maps, and Rick’s was to continue trying to engage more customers in different venues. To that end, we signed on with Constant Contact which is reputed to facilitate regular newsletters to a broad email audience. Silly me, I thought they were going to help us by providing the broad email audience. I dutifully worked within one of their templates, formatting and importing some of our item photos, adding text that was informative and interesting, joining hyperlinks to fit their template, and changes colors where I could, and getting frustrated where I could not. After about four hours, I had a pretty decent newsletter (which I might have constructed on my own, quicker and easier, without their template restrictions.) But what iced the cake in terms of aggravation was, there was no email list to be shared: we had to create our own! Not wanting to further impose on the many people Rick had already emailed earlier this week, before we encountered Constant Contact, I developed a brief email list of friends that I thought might still be friends despite two email newsletters in a week. If we stay with Constant Contact beyond the thirty day free trial period, it will cost us an amount of money each month that may exceed what we actually recoup in sales. So that iron will be coming out of the fire soon enough, and we’ll stick with our own hyper-link-less newsletters, on a semi-monthly schedule, and call that venue addressed.
And my third iron in the fire, of course, is my granddaughter’s off-to-college quilt. I started this week working with the pattern she chose last month, and have decided that what she and I saw in the book can be altered a bit to fit my skills and her personality. So I have an idea in mind, but am not ready to share it here yet … I’ll make up a few squares and see how it works together. Her graduation is in a few weeks, but the quilt is for college, and college is in September; I’m on track for that.
After fussing and fuming my way through the email newsletter template today, we had a call from a fabric company that deals with Bernina repairs (we had gone to their store in Portsmouth, NH last week looking for a new needle threader for my machine.) They said the part was in … they said it was actually in last week when we were there, but the person looking for it was looking in the wrong place, or for one more specific to my machine than it needed to be. So hearing that it was there, we told her we would be up in an hour or so. She said she would let the two women working the counter, because she would be gone. Rick thought the drive and getting the part would ease some of the tension that the newsletter had built in my shoulders, so off we went. The holiday weekend traffic hadn’t built yet, so the drive was easy (though expensive: four dollars going through the Hampton tolls twice.)
The women working in the shop were in a bit of a dither when we got there, as the computer was giving them trouble. We waited patiently while they worked to get another customer registered into a class. One finally looked up and asked if we needed help – and then began to look for the part we had come to buy. I told her of the phone conversation just an hour before, but she had no information from the one who’d left … nor did her partner, who was clearly frustrated and feeling helpless with the computer. She couldn’t find the part, and was looking in all the same places where she’d looked last week. I told her that the other woman said it was a universal part, not a machine-specific part. She began looking in other places. She then went back to the computer to help her partner-in-despair, then went back to looking in more places. She said “Would you like us to mail it to you?” I looked at Rick, he reminded me that it was a holiday weekend and would take extra time, and we’d already paid the toll twice for two trips to the store … $8.00 in all, so I said we could wait until she helped the other customer with the class. It was only a few minutes before they made a decision to bypass the computer and enter the customer by hand. It was only a few minutes more before she looked in the right place and found the part I wanted. As I wrote the check, the class customer finished and left the store. She began to enter the check and purchase into the computer, and told me that if I registered as a regular customer with them, I would get emails about their special offers, and the computer would keep track of my purchases and I would earn a gift card after $200. in sales. So I gave her my email, telephone number etc., and Rick went out to get my machine to make sure the part fit. It did, and we headed out the door ~ just as the skies opened and emptied the clouds of sheer sheets of rain. We were soaked when we reached Abby (our vehicle … black and hearse-like, and named for the NCIS character.)
It’s been a pretty productive day (minus the quilt … I’ll focus on that tomorrow.) I’m sitting here typing this page for all of you (and for me, too, because if I don’t write it down, I’ll forget it. No short-term memory cells.) Just wanted to let you know that I’m better, and things are looking up! Now if I just knew whether this burst of energy at 11:00 pm is due to the medications I’ve been taking?
Related articles
“The Girl With Kaleidoscope Eyes”
I know, those words are used in a Beatles song memorializing the heyday of LSD highs. Yes, I did go to college in the late sixties, and again in the late seventies. No, I did not do drugs during those decades. I did not inject anything until diagnosed with multiple sclerosis in the first decade of the twenty-first century. And even then, I stopped the injections after four and a half years. No, I did not inhale anything, or smoke anything, though now, forty-five years later, I read that I would qualify, with MS, for medicinal Maryjane. I’m not going for that, either.
But yes, I do have Kaleidoscope Eyes this week, and have had them for the past three weeks. I guess I forgot to mention that in the previous post ~ you know, the one where I told you everything was going well? Well, everything pretty much was going well … I know how to deal with kaleidoscope eyes … close one when I’m trying to sign a check, sit down when I want to read something, and hold Rick’s hand when we’re walking through a store with rows of bright colors and oddly shaped packages. I love walking through a fabric store – usually eye candy for me. But not with kaleidoscope eyes.
It’s a symptom of MS … vertigo, blurred vision, double vision, rolling vision … and there are medications that will help it to pass. I only ask for those when it is completed with nausea, which can dehydrate me in a few days, necessitating a trip to the hospital for meds and hydration. So I have learned to ask for antinausea meds early, if nausea is present. But this time it’s just vision and spinning and walking “like a drunk.” There are T-shirts out there that have a saying printed on them: “I’m not drunk~ I have MS. “ But why call attention to it?
It’s called a ‘pseudo-exacerbation” which means, basically, a false relapse. Those are the only relapses I have. It’s is why I don’t own up to the diagnosis of relapsing remitting multiple sclerosis … because it’s fake. The pseudo-exacerbation does not reflect new lesions in the brain … they do not indicate furthering damage of nerve axons, or lessening of myelin (the protective sheath around the nerve axons.) And so when these things come and go, I feel like a fake. But I’m not a fake; pseudo-exacerbations are real. They are limiting. They are dangerous, if not respected. I don’t drive when I’m having “Kaleidoscope Eyes” (you’re welcome.) I don’t shop well when looking at the shelves invites colorful hallucinations. I don’t walk well outside on a good day, and would definitely fall and, thanks to the osteoporosis, break something significant when I’m experiencing vertigo and wonky vision.
By Thursday of last week, when I wrote that positively-framed post of good medical news, the vertigo and wonky vision was fading. We were planning to walk on Saturday, in Natick, for MS Fundraising. But this RRMS, or whatever it really is, is not only a faker, it’s a ‘snarky little divil,’ and pays me back when I start to claim I’m healthy. So what did develop on Friday (just in time for the weekend?) Shingles.
I know Shingles when it arrives uninvited, like pain, at my head. I called my family doc right away, said why I needed to see him, and they fit me in. I came home and started on the acyclovir I take when I have shingles. Saturday morning, when we got up at 6 to get ready to drive to Natick for the walk, the shingles were physically evident. I debated with myself about going, and decided I would go. MS would win this day, shingles would not.
As I said, though, it’s ‘a snarky little divil’ and it took its revenge Saturday night. Rick and I did succeed in walking that five mile walk, though it took us three hours this time, and we were the last to finish the walk (it’s not a race, and we don’t mind being last, as we’re in our sixties, and humble. 
The safety team’s bike rider accompanied us for the last quarter mile, uphill. He offered to call to get us a ride with the safety team’s pick-up van. We said no thanks, and that he could go on if he wanted to. He said no, he was doing his job. I was proud of both of us, and posted our success on Facebook and in an email to others who have walked with us or wished us well. I didn’t mention the shingles, having already been to the pharmacy and begun its prescription.
Sunday morning, when I woke up, only one eye opened. My fear factor fluttered a bit, for waking without vision is a possibility everyone with MS lives with, day in, day out. But it wasn’t my vision. It was my eyelid, which was swollen to twice its size, and hiding my world from my right eye. I took the morning pills, including the new one for shingles, and went downstairs. By noon time my eye was looking a little better, though still swollen, and the double vision was not evident (since I was seeing with basically one eye.) We decided to take a ride to Portsmouth Fabric Company, where we might be able to get a re placement part for the ‘semi-automatic needle threader’ of my sewing machine. We rode up, looked around, asked for the part, learned that they were out but would order, and then rode home. By the time we were home my eyelid was looking more normal than earlier, and the shingles swelling had moved down to the sides of my eye, both inner and outer.
Rick and I walked slowly into the house, now feeling the muscles rebelling from yesterday’s five mile walk (because we hadn’t stretched first, our bad.) Another flit of fear flew through my mind when I looked into the mirror and saw where the swelling had moved to. I remembered the EEG technician who had told me about her aunt, who’d died of mucosa melanoma in only six months (this was the year I was supposed to go to the dermatologist but didn’t get there.) I wondered if melanoma tumors under the skin could move around like my swelling was. But I reminded myself that it was just the shingles ‘moving through’ as the medication hastens its progress and my healing.
Yes, I still feel a bit sore and am limping, leaning to one side, and my hip bone is achy. But it’s not creaking, and it’s working. My vision, now that both eyes are open again, is a little bit blurred but I can sit here and type. Vertigo and Shingles and MS and Osteoporosis and Melanoma and Depression are no match for me … I made it through college in the sixties without doing drugs, and now that I’m in my own sixties with meds, I can make it… sort of. Because Rick is with me, and I have my dad’s cane, and Rick has his croquet-mallet cane, and we can hold hands … and I know I can fly, if I want to.
Related articles:
The Girl with Kaleidoscope Eyes (Lucy in the Sky with Diamonds, by the Beatles)
Medical Updates
Hello all,
I visited a few doctors recently, and wanted to give you an update as to how my overall health is progressing:
- May is Mental Health month. My mental health is currently stable … depression is being managed by a successful medication at a successful dose. Figuring out that dose took some time, but it is now sufficient to allow me to maintain my interest in things I love to do. I haven’t quite maintained the energy to do all that I love to do, but I can work on that as long as the interest is there.
- I had double vision for most of the past three weeks; with it came balance issues, and an inability to see in large busy rooms, such as the quilt shows I went to a few weekends ago. It’s not the first time that warm weather has brought this my way. It’s called Uhthoff’s syndrome, and is to be expected with MS. There is no medical treatment; just the advice to stay indoors with AC and avoid the sun as much as possible. Humidity makes it worse. Our dry weather this week (so far) has minimized the symptoms.
- This morning I went to the AJ Hospital for an infusion of Reclast, my annual treatment for Osteoporosis. The endocrinologist I saw a few weeks ago found all my labs in the good/normal range. He was pleased, as I was. The annual infusion is so much easier and less troubling than the weekly oral med was. And, unlike the MS meds, it is administered by a registered nurse in a hospital setting, which is most reassuring to me. I have no side effects from this treatment. I will have another bone density test next year to see whether Reclast has reversed any of the bone weakening, or at least kept it from worsening. For now, I remain a high risk for fracture. I am more careful walking now. I am fortunate to have not broken any bones in these past two years. I’ve had only one fractured rib, probably initiated by a fall on ice early one winter morning before I retired.
- My recent visit to the dermatologist showed no new need for more biopsies. Four or five more cryo-surgeries on my face took a few weeks to heal but they are now fine. Again, I am advised not to spend more than 10 to 15 minutes in sunlight, and always to wear sunscreen if I am outside in the sun at all. I do keep my hat and sunglasses on, even into the early evening/sunset hours. And yes, in that guise, I bear an unfortunate resemblance to another person from Southie. Who probably also has melanoma.
- Mosquitoes are beginning to return to our neighborhood, which is another reason to stay indoors. Last year a friend of ours here in town lost her husband to Triple-E (Eastern Equine Encephalitis), which is a fatal fever carried by mosquitoes in areas with horses. Our playing fields were off limits for the end of the school year and the summer town athletics, because mosquitoes carrying the virus were found here in town. I’ve ordered, from my favorite Avon lady, a spray that will work both as a sun screen and a mosquito repellant. And no, I won’t leave home without it.
So, if we can have a low humidity, I will be myself. If the temps and humidity climb again, I will be less than myself, and will stay inside until it drops. The Uthtoff’s syndrome, while limiting sight and balance, is sometimes scary but always temporary. Knowing that I have returned to new normals each time it hits is very calming.
Rick and I will be walking again this weekend for the MS fund raising. While it doesn’t compare to Michelle’s 14 mile run for lymphoma ~ she did that in about 2 hours, which is amazing to us ~ that’s about how long it takes us to walk 5 miles ~ it does feel good to be able to do that. Praying for low humidity so that I can finish the walk.
Someone asked me why I’m walking a second walk. It’s simple … because I can, for those who cannot.
Related articles
Twenty-Five Years Ago Today
It is an anniversary, though not one you’d expect to hear about. It was the beginning of the endings, and also the beginning of the beginnings. It was a day of sadness, of changes, of required strength.
Twenty-five years ago today, our son was six months old … a day to celebrate him … but a celebration set aside. The first of many celebrations to be set aside. It was the day the first of his four grandparents passed away. Rob was too young to understand what grandparents were, then, and too young to know that a six-month milestone might be celebrated. But there was a tender, extra level of sadness to that day. Larry would never get to know Rob as a person, and barely knew him as an infant. Larry was already dying of cancer when Rob was born, and six months later, he was gone from Rob’s life.
When Rob’s sister, Trish, was born, there were four loving grandparents in her life. As she grew up, living in the same town as all four of them, they took an avid interest in her growing and in her activities. There was, at times, some competitive envy between which pair of grandparents would see her for Christmas dinner; we made sure both saw her on all significant holidays. It was an expectation that was physically easy to fulfill, and we forfeited many of our own holiday settings to spend the days in theirs. She was the only grandchild for one set of grandparents, and one of many for the other set. But she was the only one right here in the same town as both sets, and so we shared her laughter and her beauty with both sets.
When Rob was an infant, his Christening had to be postponed a few weeks due to my aunt’s passing. He was three weeks old when she died, and we went to her wake, leaving Rob in the care of Trish, then sixteen, and her soccer teammates. Trish had broken her wrist that week in a soccer game and was afraid that she would drop her baby brother, and so the girls came to be with her that evening. We were gone two hours, as the wake was forty minutes away. The girls were delighted to help Trish. And Rob had, from that night on, many sixteen year old sisters watching him grow.
After his grandfather’s death, his grandmother became more dependent on Rob’s dad. In time his sister went away to college, I went back to my full time classroom, and Rob’s dad lost his job to an economic takeover that eliminated the jobs of a building full of people. Rob was then in day care; his dad tried to find a new job, but each one lasted only as long as the manufacturing work lasted. When Rob was old enough for kindergarten, his dad was working only part time in the new economy, and spending more and more time caring for his aging mother. Rob’s grandmother was going blind, and needing assistance with more than just house maintenance. She was dependent on Rob’s dad for medical visits, transportation, bill paying, food shopping, and social company. Rob’s dad left the part time jobs that had no benefits, no vacation days, no sick days. He became a stay-at-home dad for Rob, and a stay-at-home son for his mother. My own job as a teacher had benefits for us as a family, and so I continued on.
Before Rob was old enough for school, he was already intrigued with computers, and remote control, and Legos and golf balls that rolled through pipes in the back yard. On Sunday mornings while my dad was still able to drive, he and my mother would come to “watch Robbie grow” and Rob would entertain them with “demonstrations, explanations and presentations” in the parlor. They were happy Sunday mornings for Rick and me. After my parents left to drive home, Rick and Rob would go then to Rick’s mother’s house, to take her trash to the dump and to visit for a while.
Thanksgivings were now being spent here in our own home, with Rob’s three remaining grandparents joining us here for a meal. Christmas Eve was now in Maine, with our daughter and her two young children, and Christmas morning spent here at home with Santa’s presence growing more casual by the year as Rob was growing up, and his grandparents seemed to be shrinking down and needing more support. Christmas afternoons were most often spent at one or the others’ house. In only a year or so after kindergarten, my parents began having more medical issues, and aging issues.Rather than having the doting and competitive grand-parenting that his sister had experienced, Rob was now experiencing life with the equivalent of three very physically challenged pseudo-siblings; he shared his parents’ time and attention with his grandparents. He was growing up in the same town, but in a very different decade, and a very different economy.
Rob’s widowed grandmother remained in her own home during those years, living alone, fairly reclusive other than the time spent with us. Yet we still were able to reserve time for Rob’s activities: he, too, played soccer, and enjoyed his dad’s co-coaching, as his sister had. When he reached middle school, he also joined the school’s track team and enjoyed those meets. We were always at every game, as we had been for his sister’s years before. And I was still in my classrooms, full time. His dad was caring for his mother every day and every evening, and I was now caring for my parents every-other overnight. We did the best we could. It seemed very, very hard for those few years that still saw the three grandparents through winters in their own homes, needing maintenance, and chauffeuring, and bill paying and doctor arranging and food shopping and holiday celebrations. Our grandchildren were growing up in Maine without us, and the calendar of holidays with them had to be flexible, and they were graciously patient in seeing us when we could get there. The traditions had changed. They seemed, in fact, to have disappeared.
A few more difficult months passed, and then more changes were made. Decisions had to be arbitrated for my parents’ care with their many children’s input. Decisions for Rob’s other grandmother weighed heavily on her only child, Rob’s dad. My mother’s care had accelerated faster than we could schedule adequate help to address, and she had to be placed in twenty-four hour skilled nursing care. My dad came to live with us, and their house was sold to provide financial resources to pay for her care and in time, to purchase skilled company for him while I and my sister continued to work to support our own homes.
In less than two years, my mother passed away. Rob now had two grandparents. My dad, having lived with us for a year and a half, moved in with my sister who could oversee his medical needs more appropriately as a nurse, and Rick continued to oversee his mother’s care. In less than two years more, my dad passed away, and Rob was left with one grandparent. He was too young to be affected by his first grandparent’s death, but the deaths of my parents did affect him. He had become more reserved as a person with each increasing need of his pseudo-siblings. Their passings, rather than gradually freeing our time to be with him, coincided with his needing more of his own time. We were careful not to ‘smother’ him in compensatory attention. We still encouraged his sports, and his friendships here in town. But the schools were not as strong as they had been for his sister’s age group; the economy was taking its toll. Disappointed in the lack of technology and diversity in a limited curriculum, we decided that moving him to the system where I taught … a larger system with more diversity… would be an improvement that we could provide to him.
In three more years, his last grandparent died. Rob was now a sophomore in high school. His childhood had passed. As an adolescent, as an out-of-town student of limited economic means, with two older parents than his sister had had, Rob’s final high school years went by quietly. Relationships with family … the many aunts and uncles and cousins that his sister had shared holidays with … were not a significant part of his life. The traditions that once had filled his sister’s calendar as a child and a teenager were no longer in place … scattered by the years of elder care, relationships that had been strong were at least no longer strained, but no longer intact. A childhood had passed seemingly unnoticed by those who once had wanted only to watch Rob grow.
In less than two years from the last grandparent’s passing, I was beginning to fail. The diagnosis of multiple sclerosis was just ahead. The acknowledgement of clinical, probably life-long depression was to follow that. And malignant melanoma would follow that. Our parents never knew that I was weaker than I appeared. I didn’t have a name for the fatigue, for the sadness, for the sometimes come and go confusion and disorientation. Rick and I just continued to do our best. But we knew it wasn’t the best that we once could have done.
Rob is now grown. He is what he wished to become: a firefighter (like his dad, and the grandfather he knew) and a paramedic (like his parents were by necessity often para-professional medical consultants, schedulers, and decision makers .) He is a computer whiz who can help his parents and friends with technology as needed. He is an incredibly strong, silent type who will one day choose a partner to spend his adult life with. But for now, he is here with us.
And our grandchildren have now grown. One will be off to college herself in the fall, and her little brother will be only two years behind her. It might have been so different for Rob had we had him earlier than we did. He might have had a very different childhood, in a very different world, with a sister just a few years ahead of him, sharing what she knew of the schools with him … of life, and of us, and of grandparents with him.
Twenty-five years ago today, as I prepared to leave for work, packing Rob’s bag of toys and food for his day-care day, the phone rang, and my mother-in-law asked me to come to her house, and to call Rick home from work because his dad had passed away. It was the beginning of the significant endings in our lives. It saddened Rob’s sister, who loved her grandfather. It saddened his parents. It seemed to open the quarter-century of sadness that was supposed to be such a celebratory time in our lives. Rob and his sister, and our grandchildren … those are the bright spots in that quarter century. They are the happy memories that we have between us. They are our family … our life. The past is passed. The future will be what it will be. But today we have each other, and I am glad of that.
Rain, and We Do Need It.
Last night brought bright lightning and long, ominous sounding rolls of thunder interspersed with loud booms suggesting someone nearby was feeling the losses of lightning strikes on electrical power lines. The rain followed, falling in heavy drops that had cars and trucks splashing quickly on the road beyond our windows. But it stopped as quickly as it had begun.
Our lilacs had just begun to open, and the dogwood tree to bloom. The rain returned today with a heavy downfall again; we’re not sure whether there will be any blossoms left on the dogwood tomorrow. But the lilac will survive and thrive, as it had just begun to open. I have always had a lilac nearby … in the city where I grew up, it bloomed every May in the back yard surrounded by coal ash from the furnace. At our first house beyond the city, it grew outside our second floor windows, sending its wonderful aroma into the windows on late May nights. And now here at our home, we have a number of lilac bushes: some from my parents’ home, and some from Rick’s parents’ home… some are out in front by the driveway, and some out back, but none close enough to our bedroom window to share their scent. We had a woman tell us a few years ago that our lilacs out front were the most fragrant she had ever encountered … pretty good for a bush that had been transplanted only a few springs before.
I can appreciate the beauty of the blossoms, but no longer sense their scents. My olfactory sense declined about six years ago, when I first began the nightly injections of ‘disease modifying drugs’ for multiple sclerosis. With it went most of my sense of taste as well. Down to only three senses now, I’m learning to appreciate each of them more. Hearing will be next to go, and has begun already. I often ask my husband to turn up the television when the newscasters look like they’re saying something interesting, and he obligingly does so without comment.
The other two, the senses of touch and vision, are both vulnerable as well. I have an altered sense of touch in my left fingertips, and can easily (if foolishly) lift a hot bowl out of the microwave without pain using my left hand. Of course, there’s a danger in that, and so I’m careful to use my right hand to avoid a burn.
Vision is the sense I am most afraid of losing. Hot weather often causes double and blurred vision for people with multiple sclerosis, but that is a temporary, not damaging loss, caused by the irritation of the myelin-impaired nerves that control the muscles that focus our intricate vision. I do have a cataract, and have had it now for over twenty years; the ophthalmologist told me that when it is ready for removal I will be the one to come asking for the surgery, but I’m not there yet. He says it has been ready for years, but it does not bother me often enough to risk eye surgery. I hear they get better at it year by year, and it is a very simple procedure now. Even better for me … I can wait a few more. When heat bothers my vision, I am free now not to have to drive to work. I can close one eye to eliminate double vision. I can sit down when walking becomes challenging due to dizziness connected to vision. Retirement does have its advantages.
Six years ago, I was enjoying the scent of lilacs; I was enjoying the taste of beef stew, turkey and squash and cranberry; I was listening to the birds’ chatter as I sat on the porch writing in my journal on a Sunday morning. I was knitting, and sewing, and embroidering with students in school, with nimble fingers that could then handle multiple strands of colored yarn, and intricate patterns of knitting stitches. And I could match colors from memory when shopping in a fabric store.
Five senses … six years later, I’ve lost most of smell and taste, some of hearing and touch, and preciously guard from the sun my vision. I put on my sunglasses before I go outdoors, whether it is sunny or cloudy, foggy or early evening. In a store lit by bright lights I wear them indoors as well. I can still type despite the tremor in my left hand (though the letters a,q and z (my granddaughters’ initials!) and upper case letters of the right side of the keyboard often result in double letters as the tremor hits keys twice. I most often have to retype the pronoun I as my left pinky’s weakness leaves it in lower case even though I consciously hit the shift key.
Do I blame the DMD for these losses? Do I accept them as age-related? Am I more honest in admitting to these signs of decline because of my diagnosis? I don’t know the answers to those questions. I don’t ask others if their less-dominant hand’s fingertips have lost feeling. I don’t know whether people continue to enjoy the taste of food as much as they once did as children … I do know that they seem not to have lost their sense of smell, as they often share their delight in the scent of flowers. When we had a skunk take up residence under our barn one spring the smell was very difficult for Rick to deal with, and yet I never even sensed a whiff of it. Some losses are gifts, I guess.
I enjoy reading, and typing these blog entries, and my book reviews. I can still see the computer screen (though I do dim it more than others might) and I can always enlarge the font on it when my eyes grow tired. I can, with a magnifying glass, thread the needle on my sewing machine when I jam the automatic needle threader (as I did earlier today … and I will be searching tomorrow for an address where I might be able to order a replacement part for that.) I read many books on the Kindle Rick and Rob gave to me a few years ago, as that also allows for font-size adjustment. I try now and then to write in my spiral notebook journal … but often my mind wanders before my fingers cramp up. I guess it is because, sitting in the parlor and writing in what used to be my writing chair, where once I would sit for hours writing hundreds of words on scores of pages … commentary on our lives, our world, our families … my job, my students, my partners … all of those memories come rushing back when I sit to write in my notebook, and my mind is lost in the reveries. Typing on the laptop is different. It is purposeful, not lackadaisical. Type is more formal, and so more focused. It’s hard to explain, but easy to understand.
And so that is what’s been on my mind this week … the changes brought with the DMDs … the injections now admittedly ineffective, judged so by study after study, and yet continually prescribed and accepted by doctors and their patients. I am amazed that there is not more outcry about their failure. I am resentful that I may have endangered my self, and my senses, by accepting and acquiescing to the difficult injections for so long. And yet others are going on in their second decade of these medications. I am not. I believe I am better without them. But I cannot retrieve what I have lost to them … or to age … or to the diagnosis itself. It’s hard to explain, as I’ve said many times. But it’s easy to understand.
Related articles
http://www.healthcentral.com/multiple-sclerosis/c/215658/154812/found/
A Pleasant Few Days Among Friends and Quilts
I attended two quilt/needlework events this past week. One, the Merrimack Valley Quilt Guild’s annual Quilt Show was at a middle/high school in a nearby New Hampshire town. So many beautiful quilts were hung on portable racks that stood at least eight feet tall and still some reached the floor in length. Some of those quilts were entered in a contest for ribbons. Some were hand-sewn and hand-quilted entirely, and others were hand-appliqued and machine quilted. All showed a dedication to the art of quilting, and to the creativity of the quilters. I envied their skills. I admired their work.
The second was the 40th Anniversary Tea and Show of the Essex County Needlecraft Guild. This was held at the Hellenic Center of nearby Ipswich, Massachusetts, and featured quilts and much more. Japanese Bunka Embroidery by my high school friend, knitted doll clothing for the 18 inch dolls that reminded me of the knitting that I did years ago for those very dolls … sweaters, hats, mittens … crewel work, fabric purses, felted figurines ~ all were treats to the eyes. All were proof, again, that women today have not lost the appreciation of hand-made beauty.
I didn’t offer any of my work to the first of these two shows. It came up quickly, and I didn’t feel ready. But I did bring four of my holiday lap quilts to the second, along with one of my tea cozies. And I sat at a table and demonstrated how to make the cozy to some interested members of the guild. I was in delightful company … women my age, some decades younger, and some decades older ~ clearly at least three generations of women who enjoyed sharing the arts of knitting, sewing, crocheting, felting, puppetry, doll fashions, embroidery, crewel and so much more. 
It was humbling to see my work among theirs, and it was gratifying to see these women showing interest in what I could do, and what I would share with them. I confess I was saddened to realize how much I have forfeited in my skills, due to the tremor that I always brush off as a minor inconvenience. In truth, I had forgotten how many things I no longer do. I, too, have knit patterned stockings, and doll and people sweaters, hats, mittens, and even skirts. I used to embroider neatly, and did a crewel pillow featuring a basket of summer blossoms years ago. I used to paint miniatures … small wooden tiles of florals and landscapes with magnets on the back for refrigerators, or with eye-hooks on the top for necklaces. I used to make macrame plant hangers, and knit cabled sweaters with so many different stitches, and fair isle sweaters with so many colors. Once, I knit Rob a sweater with snowmen on the front, and a pile of snow and shovel on the back, of my own design. I made knit Christmas stockings with names and reindeer on them, and once was able to take a thirty year old stocking from a teacher and make a duplicate of it for her infant son.
At the end of the show today, one of the crafters, a puppet-maker who also designed seasonal hats, asked me if I would teach a workshop on making the tea cozy that I’d displayed. I was happy to say yes, I would. She asked if I taught classes in our own workshop at home, and I said I would, if people would come. She said she felt they would come, and she would try to make that happen. What a wonderful thing that would be, to have people coming to our shop to learn, and to see all that Rick and I have to show them.
The business of this week has tired me. I told Rick yesterday that my eyes were starting to wander and lose focus. As I moved across the large room filled with beautiful creations and many people, I felt ‘unable to see’ specifically any one thing … everything seemed to blur together, as they would if i were wearing someone else’s eyeglasses. I had a brief sense of vertigo as well, and seemed unable to walk in the direction I wanted to go. It was just after six o’clock, and time for us to take down my friend’s award winning applique quilt, and gather up my own smaller quilts and tea pot with cozy, and head home. We stopped for a quick supper, then brought her quilt to her, and then came home. 
I have a regular appointment with the ophthalmologist in a week or two, and will let him know of the blurred vision today, and of the ‘floaters’ that are multiplying in my stronger eye. A few times today I tried to brush what I thought were fruit flies away from my face, and probably looked silly doing so, when there was nothing actually there.
The good news this week is that the genetic test I’d had done a month ago yielded a result of ‘no mutation noted.’ So I am not carrying the specific gene mutation that my nieces have … and that is good news for my children and grandchildren. I was asked to let my family know that, but to pass along the caution that, given the cancer histories of the previous and current generation, they need to be aware of the existing risk and make healthy lifestyle choices. She also validated the choices I’ve made over the past seven years since my diagnosis with Multiple Sclerosis: the meat-free, low to no fat, nothing fried and little dairy menu, with more exercise and less stress. ‘Less stress’ was not something I could willfully arrange, but is something that life has generously brought my way.
I will come back here some day soon and post pictures of some of my past creations, to share with you what I’ve lost to a simple tremor. But with those photos of the past, I’ll continue to post the quilts yet ahead for my machine, and for the eventual recipients of what I can make and give. For the saying goes, to those whom much is given, much is expected. The skills of needlework begins as a gift, and I am happy that I am still able to use that gift to give happiness and warmth to others.
Related articles
Having a “Fly on the Wall” Day at Home.
It’s in the low sixties today, and sunny. We have the greenhouse windows open, and the kitchen’s Dutch Door top, and the air is fresh and just a bit smoky. Less than two miles from here, in the woodlands behind the elementary school, the firefighters are battling a five acre brush fire, and calling for mutual aid looking for more brush trucks (which are large fire engines that have four wheel drive and carry more than a hundred gallons of water.) We haven’t had much rain in the past few weeks, and so the woodlands are dry, laden with fallen branches from the winter storms. The wind is light, just 4 mph, which is fortunate in such conditions. In years past, Rick would have long ago donned his fire ‘turnout gear’ and responded either to the scene or to the fire house to bring the truck to the fire. But today he is home with me, connected only by listening to the monitor, hearing the calls for more trucks. Rob isn’t home today ~ if he were, he too would respond to the call. 
I listened to Vice President Biden when he addressed the police and Tuft University’s students and faculty this past week, at the funeral service for campus police officer Collier who was assassinated by the two brothers who had set the bombs at the Boston Marathon’s finish line a few days earlier. Joe Biden’s words echoed my memories of my father’s own … Biden offered his condolences to the Collier family, and in doing so, he reminded all of the officers present that their families, too, are affected by worry each time an officer puts on his uniform and heads out the door. That is true for the families of firefighters as well; my dad knew that, and always reminded his rookies to keep one hand ‘on the ladder for the family who waits for you at home’ when working a fire call. I knew my dad would be proud of Biden’s words.
Hopkinton, a town about twenty-five miles away from us, has a 40 acre woodland fire going at the same time. With a fire that large, it may well take more than a day to extinguish it. Rob will be on duty in nearby Lexington tomorrow and may be called to that as mutual aid. I’m told that the state had given used ‘deuce and a half’ trucks to several small towns, as those are vehicles that can drive through woodlands and they have tanks that would bring about a hundred gallons of water to the scene of fires like these. I’m also told that the state retrieved those vehicles a few years ago, leaving the towns without the extra support. Our town has a ‘combo’ truck to use for woodland fires: it is a Combination Engine/Pumper and carries water and travels with good traction. Once, a few years ago, the Combo was weighed down with water and stuck in the mud on the way into a fire scene: our Deuce and the neighboring town’s Deuce were able to work together to pull the Combo out. We’re without that support, now. No one has been able to tell me why, yet. 
Of course the ‘families who wait at home’ wait with worry. Certainly my mother lived with that worry, as my dad rose through the ranks of the fire department, from private, to lieutenant, to captain and then to Deputy Chief. Most family members of firefighters wait with prayers on our breath. Many wait without monitoring via radio transmissions. When my dad was injured in a warehouse fire (the roof collapsed and timbers fell and pinned him) we heard via a neighbor, who had heard via a newscast on a portable transistor radio. I was about eleven then, and was a spectator at the fire, just a block away from where we lived in the City of Boston. Dad was a lieutenant then, and was taken to the hospital to be checked out. I ran home, not knowing that he was the firefighter on the stretcher, but knowing that I wasn’t supposed to be at a fire scene. Dad always told us sternly to stay away and out of the way. I learned when I ran up the street that Dad’s name was on the radio, and that he was hurt. But an hour later, he came home in a cab, to let us know that he was alright, they got him out before the smoke could do its damage. And we all hugged and kissed him. I never told anyone that I was there at the scene. But being there, I saw how quickly all of the firefighters reacted to the collapse, and how quickly they found a way to release him and the others who had been pinned by the collapse. And I may have felt the most relief of all.
When Rick decided to join the fire department in town, I was hesitant. My dad had just retired a few years before, just a year after my brother had died of smoke inhalation in a late night fire in Connecticut, where he was manning an all night open shelter for runaway teens. His death was very hard on my dad, following just a year after the Vendome fire where Dad felt the loss of nine of his brother firefighters in his beloved City of Boston. I told Rick why I was hesitant, with memories of worry as a child. I told him I’d learned to respect the training that protected my dad in the fire department, but that even with that training and equipment, lives could be lost. I didn’t know how much or how diligent the training in a small town department would be. But in time, I came to respect that, too. 
Ten years later, our daughter joined Rick as a firefighter, and began the trainings that would help her to protect others and herself. She went to college then, and no longer attended trainings or fires in town. Her dad, Rick, later ‘retired’ from the firefighting role as he could no longer attend the trainings, either, and knew that without those, he would not be as capable a firefighter as he would want to be. His last fire, a structure fire near the square, trapped him for a moment in the cellar of the building, when a ‘flashback’ knocked him off his feet.
And then another ten years later, our son decided, too, to join the fire department. He began as an explorer: fourteen years old, he and others would train on supportive tasks that would help the firefighters at the scene of a woods fire. The learned to test the hoses, test the portable pumps, fill the air canisters for the breathing apparatus and provide drinking water and tools as needed by the firefighters. When he turned 18 he joined the department as a firefighter. He went to the state training academy and passed the physical and paper and pen tests; he then went through training as an EMT and then a paramedic, and is now fully employed by Lexington.
And so I’ve learned through the years and generations to trust the brotherhood of the fire departments. I’ve learned to respect the trainings that they use. I’ve become a part of the fire department’s fund raising association, so that they can continue to buy proper equipment and train in proper ways. I’ve been a daughter, a wife, and now a mother of firefighters. I accept the stress that comes with those roles. And I still pray each time a siren is heard, near or in the distance. It might be a fire truck, or a police car, or an ambulance. Whichever it is, it carries well-trained, caring individuals to the scene of someone in need of protection, of care, and of help. It carries men and women who are prepared and will get the job done. And it carries people who are loved by “those who wait and worry at home.” God be with them, and with us, all.
And, for those who want to know, “How am I doing?” I’m keeping busy, helping Erie 4, “the oldest, privately-owned and funded volunteer fire company that is still working as part of a town fire department in the United States of America” as 
their clerk, and I’m helping to raise money for our public library as the Vice President of the Friends of the Georgetown Peabody Library, and I work to help promote the visibility of small businesses in town as a member of the Alliance for Georgetown. I am a member of two local quilt/needlework guilds, and I am sole proprietor of Terry’s Thoughts and Threads, in which I make and sell quilts and books. Of course, I also help Rick with fabric accessories in our Wooden Toy and Gift shop. Retired after 30 years of teaching public school classes, I am enjoying my free time, and spending every minute I can with Rick. At a recent doctor’s visit, I was pronounced ‘unlucky in health but doing quite well.’ And that’s good enough for me. I’m happy. I’m ‘fine.’ As I often say, I’m not perfect. But I’m enough. My goals in life are simpler now. I just want to continue to be enough.
Boston Strong
Just a few weeks ago, I’d used a pressure cooker image to open my blog. My favorite television character, Gibbs (from NCIS) doesn’t believe in coincidences. And if I am to agree with him, and generally I do, then I have to wonder what made that choice of image so timely? I was reaching back in thought to the fifties and sixties, when my parents were still feeding a large family, and the five pound bag of potatoes was quickly emptied as the spuds were peeled, chopped, and added to the heavy steel pot of water. Never would I have thought such a pot would be used as a weapon, other than in the way of clunking an intruder over the head with it. Rather than an explosion, I wrote of potential dangers that pot held when it was being used properly, but inattentively. I wrote of the steam it would build, and the pressure it would contain. I wrote of the lead safety valve that would pop if too much pressure built up within. But I never imagined the intense pressure of a bomb exploding, releasing and flinging the heavy top, and allowing the shrapnel within that bomb to scatter among those nearby, causing horrific damage to human flesh, to human beings.
And so I chose my image carefully for this week’s entry, a day later than my normal posting date. “Boston Strong” is the phrase being used repeatedly: in voice, in print, and in images, on the media, by the citizens of Boston, by the mayor, the governor, and even the president. It is the image that MIT chose during the week to portray with a display of the American Flag in lights, hung on one of their buildings, and captured in many cameras by folks happy to see a positive image in that dark week.
Is it a coincidence that an innocent, young security officer hired to protect the campus of MIT would, within days of this display, be brutally murdered by the same killers who exploded the pressure cookers in the midst of happy spectators of the Boston Marathon’s Finish Line? Was it their intent to assassinate an employee of that proud university? Or was it simply a coincidence that he would cross their paths before another innocent victim would. He was out-manned and out-gunned, and he died for his job, and we can say for his university, and perhaps for his city, and his country.
I considered removing the image of the pressure cooker from my March 26th entry, realizing that while I was searching the free images of the internet for that icon, the brothers may have been designing the bombs that they would place within these once respectable pots. But I left it there on my blog for that week. To remove it could be seen as an act of cowardice … an act of weakness, of giving in to the intimidation desired by these brothers. I would not be a display of “Boston Strong.”
The president said they chose the wrong city to try to intimidate. My father’s beloved City of Boston gained a lot of accolades from all of the agencies that came in to help after the bombings. But in my mind, the president might have said that about whichever city was attacked. How could he not? He stressed that he and others who came here as students felt a part of Boston in their hearts … a belonging to the city that welcomed them then, and needed them now. Is it a coincidence that he could claim a part of Boston because he is among those who received education in my father’s city?
While the city of Boston and the adjacent suburbs were locked down … while the citizens of this state were told in no uncertain terms to stay inside their homes … to “shelter within” the safety of buildings built many decades ago … Rick and I had a scheduled breakfast with retired friends in a nearby town. It was not a town within the locked-down area, but it was halfway between home and Boston. I felt some reluctance to keep the appointed date. I hesitated for two different reasons … I felt badly for those under lock down who could not leave their home to make appointments, social or otherwise. And I was leery of the proximity to the highway of the place we would join our friends, for the highway led straight in to (and thus out of) Boston and adjacent areas.
Rick, always the calming voice when I worry, reminded me that we could not give in to a terrorist’s intimidation. And with that encouragement, that “Boston Strong” motto kicked in, and we did go to breakfast. Our friends did as well, and we had a lovely, friendly American breakfast-out.
No one yet knew where the remaining brother was hiding. No one could say he was still in the area. And if he were not, no one could say whether he’d driven south, west, or north of Boston. We knew he couldn’t have gone east of the city, for that would have required a boat. I knew that much. I thought that much.
Is it, then, a coincidence that I had that hesitation … that those thoughts crossed my mind unspoken that morning… and later that evening he was found in a boat – dry-docked for the winter, but a boat none the less. Oh, there were celebratory jokes on social media later … “Wife to husband: I told you that boat would be nothing but trouble!” and a poster exclaiming “The Worst Get-Away Vehicle Evah!”
The people in the locked-down areas were celebrating in the streets, and cheering for the hundreds of police officers as they pulled away after the arrest. We watched the events unfold until well after midnight. We watched it again the next day. We could be watching it re-run even today if we were to choose that, but we haven’t.
I often have a sense of deja-vu. I have often had dreams of circumstances that later played out in real life. Most often the characters are slightly different when the events occur, but there is always a connection to the person in life and the person in my dream. I don’t share many of those instances, and when I do, it is only with Rick, for he will not judge me for my dreams, nor for my instincts. I don’t make predictions based on my dreams. But I watch, and I do see them play out now and then. Some might call it a sixth sense. Others might say that it’s all in my imagination. And the logical ones among us would tell me with compassion that it’s just coincidental.
But Gibbs would say, “There are no coincidences in life.”
Related articles
A Familiar, Univited Guest: Pain
Pain. Pain is something that comes and goes with age. As young children living relatively healthy lifestyles, getting a lot of outdoor exercise, running races, riding bikes, climbing the jungle gym, jumping over hydrants … no, we didn’t have P.E. classes then, but we really didn’t need them. Our muscles were consistently in use, as were our creative imaginations. But occasionally, someone would break something, and feel real pain.
As teenagers growing up in the city, we were aware of territorial rights and the physical pain that might be inflicted should one cross barriers at the wrong time. There were fist fights, and there was running. Running was actually good exercise, as long as it wasn’t a sudden burst of unusual energy. Most of us ran as often for fun as for safety, and unless we fell or turned an ankle on a curbstone, pain wasn’t a factor in our teen years. Cuts and scrapes on asphalt roads and cement sidewalks did hurt more than a tumble on a dirt road might … we were pretty familiar with Mercurochrome, preferable to the dreaded iodine. Soap and water could also sting. Most of us avoided that by not telling our parents that we’d been on the run from a different neighborhood group. As a result, we had what is almost unheard of today: pus. Raised, yellowed scabs that festered on knees and elbows and then fell off, leaving new pink skin beneath exposed to the sun and dirt of the city. ‘No skin off my nose’ is a phrase we learned to respect.
As adults, we used some of our muscles less consistently, but continued to believe that they would be responsive when we called on them now and then. And we learned the truth in another phrase: ‘use it or lose it.’ In time the pain of childbirth, or of headaches caused by long hours of study or reading without eyeglasses, or the numbing pain of near-frostbite when we first went to ski or ice skate without the right socks or gloves would remind us that we were mortal, and subject to whatever risks we dared entertain. Some who joined gym programs enthusiastically heard the phrase ‘No pain, no gain,’ and learned to judge their own progress by the lessening of pain as well as the strengthening of muscles.
And then we age. And everything we had taken for granted in those younger years is now remembered nostalgically. When a group of young adults would whirl past me in a school corridor I would find myself shrinking back against the walls, seeking stability. I would marvel at the weight of their backpacks, and the ease with which they would sling them over one shoulder and run down the stairs without tripping or stumbling. I would remember then how swiftly I’d run through the neighborhoods and the subway stations, feeling as though I could fly down those wooden escalators to catch an incoming train, and how easily I would squish myself into the crowded train before the doors would close.
Today I caused a pain to return. It’s a pain I’ve had before, and I’ve become accustomed to its presence. I know what its triggers are, and I most often avoid them. I’ve had a few trips to the emergency room on weekends when primary care doctors aren’t on call. Sometimes I’ve been brought there by an ambulance, and other times as a passenger in our truck. Neither rides are comfortable when a lower back pain has taken up residence, but the treatment available at the end of the ride is worth the discomfort en route. Of course, avoiding the triggers is better.
What triggered today? As many times as Rick has told me to call him upstairs if I’m going to bring laundry down, and he will bring it down for me, today was one of those days when I forgot about that trigger, and assumed that a single basket of clothes would not be much of an effort. But half-way down the staircase, I felt it approach. By the bottom of the staircase, I felt the need to put the basket down and call Rick. But did I do that? No, I didn’t have much farther to walk to the washing machine. Of course, when I got there and opened the door, I bent down to pull out the load that had finished washing last night, and Pain reared its ugly head and kept me in that ‘bent over like a number 7′ position. I straightened up slowly, carefully, paying my dues for having ignored a trigger. And I thought of another phrase that I’ve ruefully come to understand: ‘Youth is wasted on the young.’
Of course, today is Saturday, and the primary care doctors are not on call. I won’t have to go to the emergency room today, for the pain is beginning to ease. I’ve put on the ‘corset’ brace that the orthopedic doctor prescribed when he saw me in the hospital last visit. It does work well to hold me up straight whether standing or sitting, easing the pressure on my lower back, and banishing, eventually, Pain to its sultry hideaway. It will lurk there, waiting for my next event of poor judgement and forgotten triggers. It will return then, and remind me, nostalgically: there are better days ahead.
A Brisk Walk in Good Company
Yesterday’s bright sunshine belied the cold temperatures along the mouth of the Merrimack River in Newburyport, Massachusetts. The few wispy clouds moved quickly across the horizon as though seeking warmer air over the Atlantic ocean, following the West Wind eastward. And groups of people dressed in winter’s warmer clothing gathered at the waterfront park to register their names and offer their donations. Those fortunate to belong to a team had as one of their layers of clothing a colorful shirt; others wore orange or white T-shirts offered by the Walk sponsors listed on the back of the shirts, hidden by the outerwear made necessary by the low temperature and 19 degree wind chill factor. Still, there were smiling eyes behind those sunglasses. For the people gathering there were enthusiastic, optimistic, and physically able to walk.
Team Terry’s motto has been “Walking to Beat the MonSter” (capitalization intentional.) And for five years, Rick and I have walked in an organized MS Walk in Massachusetts. Beginning in our late fifties, and now in our early sixties, we feel fortunate to have the health it takes, the stamina it requires, and the motivation to face the cold sunshine each Spring in this effort. The National Multiple Sclerosis Society provides staffing and recruits volunteers to register the walkers; warm up exercises to music opens the event, and the National Anthem is sung just before the walking begins. At walks in later spring and warmer weather, photo ops of a sea of orange attracts the local press. But on a cold early spring day, it is only the walkers, staffers and volunteers who brave the cold and gather for the walk. We had a small burst of light snowflakes during the walk last year, but the sun stayed in the skies, shining and warming everyone by the end of the walk. Rick and I made the full five miles again last year, but I “fell gracefully” at mile four, losing my balance for just a moment, but landing gently on someone’s still-frozen lawn. No harm done.
Team Terry was smaller this year, though larger than the first year, when Rick and I walked without a supporting team in Marblehead. “Let’s just see if we can make the five miles,” we said to each other. And so we walked, on an early April morning, from ten in the morning ’til about noon time; during those hours on the peninsula known as ‘The Neck” we and the other walkers shared our energy and admiration for the spectacular coastal views of our ocean, The Atlantic. As the temperature rose twenty degrees in those hours, from cold thirties to warmer fifties, we shed our winter coats and willingly handed them off to the volunteers following in cars for just that reason. And when we crossed the finish line, tired and sweaty and dragging our feet, holding hands to stabilize each other, we were greeted with cheers and congratulations, and pizza and cold lemonade, a harbinger of the summer to come. We’d made it, stumbling and frequently resting on the last mile. We’d made it.
The next year we decided to walk more locally, in Newburyport, and invited friends and family members to walk with us. And the year after that, and after that, the team began to increase in size, with sisters, nieces, friends of family and school friends of mine. In the fourth year, Rick and I decided to name the team formally, and order T-shirts from an online printer proclaiming the motto and showing a strong, successful image of a conquering walker. There were fifteen walkers that year, and each had a Team Terry shirt.
In this year, illnesses and other commitments conflicted with gathering for the walk, and so Terry and Rick and two sisters and their two friends walked as a team. The sisters and their friends succeeded in walking the full five miles; Rick and I, having less stamina due to less walking through the slippery winter, took the shorter 5K cutoff, but were still greeted with cheers, pizza and soft drinks none-the-less. We’d met their goal of donations, and met old and new friends at the finish line.
Last evening, following the walk, Rick and I were at a social event, a celebratory gathering of the Friends of the Library, where we relaxed with more friends, old and new, talking with other artisans and writers, illustrators and patient spouses, with light refreshments and photographs.
Rick and I are planning to walk again, in Natick, Massachusetts, mid-May. We will be a part of a larger team organized by Terry’s neurologist’s staff, and the donations for this walk will go directly to the MS Center there in Brighton, Massachusetts. The ‘Journey of Hope’ quilt that I made will be raffled or auctioned off a few days before the walk at another event in Brighton. If we can, Rick and I will be at that event, and perhaps see or meet the winner of the quilt.
… In thinking of this tradition of walking to raise money for a cause, and the exponentially increasing number of such walks and causes, I’m reminded of a few walks back in the mid to late nineties … “Step by Step” walks for cancer fund-raising, walks organized by two of our science teachers in Andover. I’m reminded of the ironic twist of fate: the diagnosis, treatment and resulting death of one of those two teachers, of cancer. I remember her enthusiasm, her energy, her optimistic belief that a cure for cancer was within our reach within our lifetime. I remember her determination, once diagnosed, to fulfill her lifelong wish to visit the Galapagos Islands. She did that, just a few months before her demise. She did it with excitement, with appreciation of nature’s diversities, and with the love of her life. I will always remember her for that, and for our shared conversations in the lunchroom, or in our classrooms at the end of the school day. When I learned that she was on the roster for outdoor bus duty that last hot week in June, I shooed her inside and stood in her stead. Heat then was already my enemy, but to think of her having to do that for what was surely her last week as a teacher …
In my last year as a teacher, a friend took all of my lunch and bus duties, shooing me back upstairs to my classroom. I will always remember his kindness in doing so, and in taking on the team leader responsibilities mid year when I told him I no longer could trust my attention, memory and energy for parent meetings and building issues. That’s what friends are for. Friends are there for the important needs in life. Walking to raise money is not high on my priority list of needs; going back to walking just with Rick, just as far as we are able to do so comfortably and safely, and walking with that appreciation of nature and of our ability to walk is more my focus now.
I will make another quilt for the MS Walk next year, but will offer it to the group in Newburyport. Or maybe I’ll instead suggest a community quilt, having each donating team make their own signature square, and having it put together to be raffled at the walk. Or maybe I’ll organize a quilting bee where several local quilters come together to make a quilt for fundraising. Time to share the work, time to share the good feelings of creating and giving for a cause.
It is good, always, to have an achievable goal set for the near future. It is a reason to continue.
