The Scleroderma: The Blue-Lipped Zebra Report!

I’m thinking of myself as the “Blue-Lipped Zebra” these days. Let’s just call me the BLZ for short. You know, a rare breed of difficult patient who is ornery, persistent, and stubbornly insistent on getting straight answers. I’m trying to not use that zebra voice, but if pushed I may whip it out. I’m going after all my doctors to get to some explanations about my panting, blue-lipped, exhausted current state of being. I made myself promise to keep my internal dialogue under control and to not get pulled off topic. Sounds like a good plan, right?

Whew. It is only Wednesday and I’m pooped! I have talked with or met with three different doctors and scheduled 5 different tests. I also made repeat appointments to get back to these doctors after the testing is done. I went into this determined to do a better job coordinating with my doctors and to shift the conductor role to my new rheumatologist. I’m reflecting on what’s happened so far and what my next steps are, and I’ve decided to share with all of you.

Before I tell you about my medical adventures this week I want to show off the monster orchid. It now has 5 blooms open and it looks great!! Isn’t that an amazing color?

Prologue: I have been struggling with shortness of breath, extreme fatigue, and feeling dizzy/faint. My lips frequently look blue. The itching is insane, and what is up with these rashes? I have more recently developed abdominal pain in the area of my spleen. After initial testing my internist has diagnosed secondary polycythemia.

Act 1: The Internist

This was my first phone appointment. My internist is the doctor who diagnosed me with secondary polycythemia, which is a condition with too many red blood cells. The high cell count, in my case, is now presumed to be due to an underlying problem involving my lungs or heart; since lung and heart damage is common with systemic sclerosis that makes a lot of sense. We talked about my gene test results (I do not have the genetic mutation that would have caused the more serious form of polycythemia, which is good!) and planned my call with the pulmonologist. That’s right: I got some coaching from my internist! I agreed to send her an email about what happened with the pulmonologist and rheumatologist after I met with them, and she assured me that she would order any testing that the other two doctors did not. That’s right – I asked her what testing I should ask for. I love this doctor!!

Act 2: The Pulmonologist

Well, this didn’t go the way I thought this would… good thing I got some coaching. It started out with this doctor saying that she didn’t know what I expected her to do over the phone when she hadn’t seen me in her office for over a year. (She fussed at me last time for coming earlier than a year. I tried to make an appointment, but the nurse insisted it would be better for me to make a phone appointment before I saw the rheumatologist… ugh!!) I explained the situation to her, and she immediately said that she didn’t agree with the diagnosis, and that she didn’t think that my rbc count was all that high. <The BLZ was pretty disgusted by this and wanted to blurt out that the diagnosis wasn’t open for debate, but I throttled it into silence…> After redirecting the conversation to my symptoms (you know, ending up on the floor panting for air after a little vacuuming…) she did agree that there was probably an underlying problem driving the elevated rbc count and it would be good to order up some tests before I came to see her in her office.

Sigh. Why is this so hard?! I wondered if we had just been talking at cross purposes about the same thing. <The BLZ wondered why I had to keep battling for routine testing when my diagnoses required it. Whatever.> The tests were ordered and I agreed to make an appointment to see her in her office a few days after the testing was completed.

Act 3: The Rheumatologist

Finally, finally I have landed in the rheumatologist office that the BLZ has longed for. This doctor felt that the lung testing was absolutely warranted, and that if nothing came up she would go right for a cardiologist referral and heart testing, and a hematology referral also if needed. She kind of thinks that this is my heart, but it is good to get the lung testing done first. <The BFZ is now bucking around… happy for action, but a little scared, too.> She reassured me that the tests that were already ordered were exactly the ones that she would have ordered, but they were just the opening round. She mentioned a test that the pulmonologist has refused to order, saying that it is the only way to get accurate information. Yay! Then she did the exam and reviewed the notes on my orthopedic referral since I still can’t walk and I’ve developed more tendon issues in my foot. “Why hasn’t there been a follow-up on this?” she asked. She ordered two MRIs to look at my hip and foot, and gave me the paperwork to get a handicapped parking pass. She also ordered blood work, told me to call her after the testing was done, and that I should be in her office again in 8 weeks. <The BFZ was stunned. Usually I’m told to come back in 6 months.> I have the scleroderma director that I’ve been looking for, people!!

Epilogue

I spent 5 hours over the last two days making phone calls, appointments, reading all of the medical notes attached this week’s appointments, and writing emails. Whew. Through the constraints of scheduling calendars I will be talking about my test results with the rheumatologist before I interact again with my slightly hostile pulmonologist. When I read the pulmonologist’s notes on our phone appointment it kind of smelled of “cover your ass” and the BLZ’s nostrils crinkled in disgust. After begging for inhaled steroids for a couple years, when I saw her last time she offered me a few months worth. Yay! I said. I wanted to check with the rheumatologist before starting them because I’m already pretty immunosuppressed, which I did, and the inhaled steroids were prescribed soon after by my internist and I’m using them right now. In the notes she wrote that she had recommended these steroids and I that I had refused. <The BLZ immediately noticed the nasty trickery with the verbs there…she offered and I deferred!> She also described my landing on the floor while vacuuming as “needing to rest while doing moderate tasks”. The BFZ is beyond disgusted at that. <Get a new pulmonologist, the BFZ barks!>

In between all of this I also got my newest pair of Snowshoe socks done! How cute are these? I knit them holding a wildly bright variegated yarn with a dark, inky blue single ply yarn. My yarn information is on my project page.

So, it was a pretty darn good start of the week. Tomorrow I head off to get an echocardiogram of my heart, and over the next week or so the rest of the testing will happen.

Coronavirus, be good and stay away from me!! I’m going to be in a lot of medical facilities for the next few days.

You all be safe out there!

The Scleroderma Chronicles: Upsetting vs. Concerning

I haven’t been blogging all that much about my chronic conditions lately… the truth is, I hardly know what to say. I’m sick. I still struggle every day. I’ve been making a lot of adjustments over the last couple of years as I tackle never-ending obstacles, but I really don’t dwell on things too much and I don’t make too many demands of my doctors. I’m still happy, busy, and I manage work-arounds for lots of things that I want to do. Then suddenly this winter I realized that I wasn’t doing all that well after all.

Background: For several years I have been consistently complaining to my doctors that I am short of breath, fatigued, itching, rocking blue lips, and not quite right. My doctors are all like… hmm… that is interesting. Well, it isn’t (insert specific issue that this doctor treats me for), so I’m not sure what to do. We’ll keep monitoring… Maybe you should ask this other doctor about it…

This last December I really hit the wall. I was so exhausted that I was afraid to go shopping by myself. I ended up on the floor panting for air more than once. I collapsed in the yarn store. My lips were blue. The itching drove me crazy. Something in my side hurt and strange bruising kept popping up. Fainting suddenly became an issue again.

I spent most of December in bed reading books and knitting gnomes!

I went to my internist and told her what was up and she immediately ordered several tests. Some scary things like lymphoma were ruled out, but others suddenly reared their ugly heads. I have way too many red blood cells and too much hemoglobin. My cell count spiked to its highest last December when my symptoms were at their worst. Suddenly a new diagnosis was placed on my chart: polycythemia.

Now the fun really begins. I have a lot of things written on my chart. I am diagnosed with several autoimmune conditions: limited systemic sclerosis  (scleroderma), Sjogren’s Disease, and fibromyalgia. These diseases come with a boat load of complications as they tend to cause trouble everywhere they go: I have stage 3 kidney disease, lung disease, hypertension, Raynaud’s Phenomenon, gastroparesis, tendon damage, bursitis, several crazy eye issues, fluid around my heart, and a stomach that has herniated partly into my chest. Seriously, who knew that was a thing? Actually, my whole GI tract is in trouble. My muscles hurt and the joints are swollen. Do you see how confusing treating me can be when a new medical problem emerges? No one wants to rock the boat! My diagnosed conditions actually make it harder for me to get good health care at this point. I know that I am a high risk patient, but this is ridiculous, doctor people!

My internist checked to see if I had the very serious and rare version of polycythemia called polycythemia vera, and since my hormone levels were normal she concluded that my polycythemia was being caused by an underlying condition, and we should just monitor my red blood cell count in ongoing routine rheumatology blood work.

What? Wait… what about my blue lips, panting and all the other symptoms? My immediate reaction was… OH, NO, WE ARE NOT DOING THAT!!! I am done with the ending up on the floor panting every time I try to do something reasonable like… say… cooking dinner! I dusted off the biological researcher part of my brain, generated a list of essential questions, and did a bunch of online searches to see what I could find. The trick to this is to have good questions and the right seach terms. As I worked, things became more productive. Wow. I learned a lot and now I had more questions for my internist. I wrote her back an email with a bulleted list of questions that… she never got. She’s on vacation. One of her partners looked at the email, became alarmed by my symptoms, and called to urge me to head to an ER immediately (!!) to be evaluated. She was pretty insistent…

Which kind of proves my point! Anyone else who ended up on the floor with blue lips, panting for air, because she tried to vacuum the living room would receive timely medical intervention!! This is not reasonable. I’m not getting the care that I should because I am too complicated and there are too many doctors involved. This has been going on for three years and now it is worse. Did one of your parents ever say to you when you were a kid misbehaving in the backseat, “Don’t make me pull this car over!” I am now pulling the car over and stopping this ride.

This is kind of intense, huh. Let’s take a break to admire my favorite orchid!

Tonight as I write this I am just hours away from a phone appointment with my internist. I have my questions ready to go. In the afternoon I have another phone appointment with my pulmonologist; I plan to tell her about the new diagnosis and to ask her about testing that I should have to help identify the underlying cause of the polycythemia. Maybe she will have some other ideas. Tuesday morning I have an appointment with my new rheumatologist and I hope to pass all of this to her. This rheumatologist specializes in complicated cases, is recommended by the Scleroderma Foundation, and prefers to personally coordinate the entire care team. Yay! Here I come! I am the girl for her!

There are many things that are happening to me that are upsetting: my hair is falling out, I have a rash on my face, and I now use a cane to get around. This is the kind of stuff that makes you want to sigh and stay in bed some mornings. You wish it wasn’t happening to you. It’s upsetting.

Then there are things that are just down right concerning. In my mind a red flag pops up and a small siren goes off: strange and unexplained bruising, double vision, pain in my left side, blue lips, panting for air while trying to open a door, tremendous itching after showers. This kind of stuff is a call to action; get out of bed and deal with it! I am now mobilizing all of my energy towards GETTING TO THE BOTTOM OF THIS and securing answers, treatment, and hopefully, an improved quality of life.

Because there is a difference between upsetting and concerning. I am not upset, but I am concerned. I am mobilized. I have questions and I want answers.

I am totally over the blue lips look!

I’ll let you know how this all works out. It should be a busy week.

The Saturday Update: Week 9

The local news station posted on Facebook this morning that there are only 300 days until Christmas. Why do they do this? Already, I am feeling the pressure and thinking about what I need to craft/knit/weave for this year’s Christmas.  I did take out the spinning wheel this week and got organized to do some quilting. So much pressure if you are a fiber artist/crazy person…

Knitting

I had a busy knitting week. It was so busy, in fact, that I already did a little posting about what I was up to as I worked out the swatches to knit another cat to match my son’s kitten Jonesy and ended up dyeing some mohair yarn in a crockpot. If you missed it, here is that post.

Last night I took the swatches up to my son’s place to match them to the real thing: Jonesy.

They were a big hit; Jonesy thinks they are a new kick toy. They are also a good match, especially the color that I dyed to create his stripes.

I got back to work on my Pebble Tunic later on in the week. It doesn’t look like I made a lot of progress, but I have connected the front and back and am knitting down the body of the sweater making some increases as I go. It is all mindless knitting until I hit the pockets in another 10 inches of knitting or so.

This yarn is just wonderful to work with. My project notes on Ravelry are here.
I also went back to simple knitting because… well, this is embarrassing… I snipped into my thumb with my scissors. My scleroderma hands sometimes misbehave, but this is just ridiculous!! Good thing I had a knitted finger protector on hand to hold the bandage in place and add protection.
I’m also finishing up the second snowshoe sock being created at DK weight by holding a wild multicolored yarn from Western Sky Knits with a single ply inky colored MadTosh yarn. The project notes are here.

This is a bittersweet project to finish up. It is the last one that my sweet boy yarn chomped/supervised earlier this week. I’m so glad now that I let him eat all the cookies that he wanted, tolerated all his knitting help, held and babied him when I wanted to do other things, and switched him back to his favorite food for those last few weeks.

MacKenzie was always a lot of help. If you missed it, my boy left me this week and I blogged about it here.
Garden

The best part of orchid ownership has arrived: the orchids left the craft room with its grow lights and moved into the living room to strut their stuff to the general public. Okay, it is just me, but it makes me so happy to have them out on display.

The miniature orchid with its darker magenta blooms joined the rose gold orchid on the china cabinet. Do you like that funky unglazed orchid pot? I get them at my local nursery and the orchids really seem to like them.
The Monster orchid is now on my coffee table where its lovely orange/pink bloom (there are more on the way) displays well with the plum furniture and the gold walls. Happy orchid, happy me!
Books

Well, I have settled into the most amazing book ever this week. I can’t believe how much I love this book. I bought it because Melinda of Knit Potion recommended it on her blog. Oh, my goodness!! I am so glad that she pointed this incredible book out to me.

<Disclaimer: I am a life long science geek and biologist. I didn’t always love plants, but now I drive people walking along with me crazy as I stop to take a good look at vegetation. I was thrilled when a slime mold emerged in the pot of one of my jade plants this summer. I’ve gone on workshops and field trips to forests, burn zones, and learned about the forest management strategies employed to maintain Denver’s watersheds. I think that it is absolutely reasonable to marvel over the mechanics of water movement through plants and the complexity of chloroplasts…>

I’m about a third of the way through the book, and so far it is a collection of stories about the interactions and meaningful relationships of different individuals with… trees! Sounds kind of strange and boring, but no, it is not! It is magical. I am hoping that the people catch up with each other to save the forest soon…

Here it is. I did take a break from the book and watched the movie Tolkien. Would you believe it – trees feature in this movie and Tolkien tells his kids to go talk to the trees. That’s it. Never underestimate the power of communing with trees…

Before you think that this is crazy, let me share with you a little tree story from my family. Starting her life over after tumultuous times and a painful divorce, my mother bought a trailer home and began to garden again. She grew amazing roses and boatloads of blackberries. She planted a tree. A Podocarpus Macrophilia tree, to be exact. She loved the tree, fed it, babied it, and eventually hung a bird feeder in its branches. She treasured this tree and it just thrived under her care. Mowing the lawn under the tree one day she began to realize that there was something wrong: abdominal and back pain. It was cancer. Years later, facing down her coming death she selected her burial plot and made all of her final decisions in a manner that serves as a pathway to me and all others who knew her. She chose a location with a beautiful view of the hills and canyons of San Diego, under a Podocarpus Macrophilia tree. The last time I saw her grave there were wind chimes and a small bird feeder hanging from the tree.

Never discount the importance of a tree.

Have a great week, everyone!! Read a little, knit a little, and garden like your heart can’t live without it.

The Scleroderma Chronicles: Rare Disease Day 2020

I’m an orphan. I’m a zebra. I am rare. This is a club that is hard to get into because it has really specific criteria, but it also has lots and lots of members.

What, you say? Whatever is she talking about?

I’m talking about rare diseases! A rare disease is classified as one that impacts a small percentage of the total population. Here in the United States that means fewer than 200,000 people diagnosed with the condition/disease. Perversely, there are a lot of people with rare diseases as there are almost 7,000 different rare diseases!  Some of these diseases are common enough that you may be familiar with them: albinism, achondroplasia (a type of dwarfism), and autoimmune hepatitis are examples. Others are very rare. Most are genetic in origin, and half of them impact children. More than 90% of rare conditions have no drug treatment. You can learn more  about rare diseases in general and search for specific conditions/diseases in the links at the end of this post.

So, what is Rare Disease Day? The purpose of this day is to raise awareness of the many, many diseases that are classified as “rare” around the world. The hope is that by shining a light on these diseases, and to put a face on the people who struggle with the many rare conditions that are out there, there will be improvements in how these people are handled in the health care system, drug companies, funding agencies, and by the public.

I joined the rare disease club 5 years ago when I was diagnosed with systemic sclerosis, a serious form of scleroderma that has no cure, can be disabling, progressive, and often fatal. These last 5 years have certainly been eye-opening for me, and I believe that my experiences are shared by many others who struggle with rare diseases. Let me list some of my epiphanies during this journey:

    • People in general are dismissive of illnesses that they have never heard of before. If you are a person with a rare disease, it is almost a certainty that no one has heard of your disease. Oops. You just got written off as an attention-seeking hypochondriac by a person who hardly knows you because they never heard of your disease…
    • The health care industry is designed to treat people with common diseases, and often ignores, dismisses, or denigrates patients who don’t fit the normal profile: the zebras. It is really, really hard to get a diagnosis for some rare conditions (autoimmune diseases like mine are famous for this). If you have a rare disease, you are trying to make your way through a system that wasn’t designed to identify and treat you.
    • There is little incentive for drug companies to develop treatments that can only be used for a small patient population. That’s why there rarely is an effective treatment or cure. That’s also why drugs for rare diseases are called orphan drugs; another name for a rare disease is an orphan disease. Yep, I’m an orphan, but there are several drugs with orphan status in the development pipeline right now. I’m lucky that way; most orphan diseases have no drugs for treatment under development.
    • To be rare means you may be too risky to treat. Once you are diagnosed with an unusual health condition it actually interferes with your medical care; because you are complicated physicians are likely to dismiss or “just monitor” symptoms that would receive immediate attention in another patient. Without more experience they can’t be sure what is “normal” for you and/or if the treatment usually used for other patients might make things worse for you. There’s another whole blog post about this on the way!
    • It is really, really hard for people to wrap their heads around “chronic.” We almost all universally believe that people can get better if they just try. Attitude is everything, right? If you just took this supplement, started eating keto, got more exercise and sunshine, tried essential oils…
    • Closely associated to this belief in the general public is one that assigns blame to the ill for their disease. If you are sick it must be because you ate too much red meat, or are obese, or failed to exercise enough. You should have eaten organic!! I know that people do this because they want to believe that they are safe from a similar diagnosis, but it still adds to the burden of those dealing with a life off the mainstream, caused, not by their choices, but by an inherited flaw in their genes.
    • If all of this wasn’t enough, or maybe because of all of this, rare diseases are expensive and isolating. Resources are few. Support is hard to find. You feel alone. An orphan.

So, this is Rare Disease Day. Some people with rare diseases must share experiences like mine; many are far, far worse than my own. If you would like to learn more about rare diseases here are some resources:

MacKenzie Speaks: Hey, Yellow Boy! Save a Garter Snake for Me!!

Hi. I’m MacKenzie.

Life has been good to me.
The Mother of Cats has given me lots of pets, toys and cookies. Even though she didn’t always give me everything that I wanted, I know that she did the best she could.
I once beat up the pit bull who lives next door…
and I spent hours and hours out in my favorite shady spot waiting for wayward squirrels and birds…
and I supervised lots of knitting projects for the Mother of Cats. Maybe there was a little yarn chomping on the side, but hey, I’m a cat!!

Today things got really bad for me again and the Mother of Cats held me tight as I slipped away to heaven. I’m on my way there now and I totally expect to have some cookies waiting for me when I get there!

This is MacKenzie, signing off.

>^..^<

Hurry up, Bro! I’ve got a garter snake all warmed up for you!! Just wait until you see how big the butterflies are here… There is a cat mint patch bigger than anything you’ve ever seen before, too!!

MacKenzie

January 2004 – February 26, 2020

Knitting Jonesy: Yarns and Swatching

This is Jonesy.

Jonesy is my son’s kitten; in this photo he is 5 months old.

Once again I am organizing the yarns to knit up a cat using the pattern by Claire Garland. Jonesy is interesting with his white chin, cream paws and tail tip, and of course, all of those stripes. Okay, I may have something of a cat knitting problem, but I’m not defensive or anything. I’m kind of compelled by the creative and technical challenge of making the mixtures of yarns create a believable, if not exact, copy of the cat. Also, I’m having fun!

So I collected these yarns with the conviction that they were a good start to make knitted Jonesy.

I planned to use the fingering yarn for the base throughout the cat and the stripes and different shades would be created by the mohair blends. When I knit MacKnitzie I used black mohair to create the stripes; when the cat was done the black was greatly toned down by the mohair and it was kind of grey. I figured that the same effect would tone down that dark cedar colored mohair at the top of the picture when I knit it in for stripes.

I learned my lesson a couple of cats ago. Always knit swatches with different combinations of yarn to use in planning the cat.

I kind of feel like that dark cedar is a little too dark. Wow. Those stripes really will stand out and are much darker then they appear in the photo. I kind of want something more like dark caramel to use. I looked everywhere online and in local stores hunting for the shade I had in my mind.

Nope. Nope, nope, nope. I had this color in my mind and nothing else was going to satisfy me. All right then; I have acid dyes and I have skills. I decided to try to create the color in my dye crockpot!!

I played around with some dyes on white wool I had lurking in the garage, and after those results I settled on this combination of caramel with some shots of orange.

I re-skeined a ball of mohair/silk yarn using my trusty niddy-noddy and then added it to a warmed crockpot with a glug white vinegar. I sprinkled the dry dye powder onto the top of the yarn, put the lid back onto the crockpot, and then walked away for an hour. (By the way, this crockpot is used only for dyeing! I keep everything that I use for dyeing in isolation in the garage so it can’t get mixed in with cooking utensils and pots.)

Ta-daa!! The dye exhausted faster then I expected; after an hour on high heat it was over.

The yarn after the first dye operation was really close to what I wanted, but when I got it out of the pot I found that there were several chunks of white yarn underneath. Nope! Time to over-dye. I dissolved about 1/8 teaspoon of caramel dye to the water in the pot, added another glug of vinegar and put the yarn back in. After another hour of high heat in the crockpot the dye had struck and I was done.

This is what I ended up with.

I was happy with this yarn… doesn’t it look like it will produce stripes more like Jonesy? More swatching!!

I now have more options to use in the cat. The very top combination really looks like Jonesy’s stripes! I don’t want to cast on until I see Jonesy again as he is changing quickly while he grows (a dark stripe just appeared down his tail!), but I really feel like I have the yarns I need to knit him up.
Planning the face is going to be interesting… how will I get in those freckles?! I used 5 different combinations of yarns on MacKnitzie’s face and chin, which really helped create the illusion of a real cat.

Whew. Time to put the Jonesy project aside and to go back to my sweater knitting. I also have a second sock to cast on and get going. Did I mention that it is snowing outside again? Oh yeah, something else happened today…

The monster orchid has opened a bloom!!

The Saturday Update: Week 8

Knitting

Have I mentioned that it has been snowing a lot here in Colorado? I have several projects on the needles at the moment, but my feet were cold Sunday night and I needed more bed socks of the cashmere persuasion right away! I hit the stash, found a nice cashmere blend yarn from Western Sky Knits, and hunted around for the pattern I used for a previous pair. Oh, yeah. The pattern is in a book that is full of wonderful socks: Socktopus by Alice Yu, and the pattern is Om Shanti Bed Socks. Once I had the pattern, book and needles located I cast on and got to business; two days later I had my socks!

How cute are these? The socks are knit toe up with an unusual treatment that allows the perfect shaping in garter stitch that is repeated in the heel. I like the lace even though it messed with my head while I was doing it, and I added the garter to the top of the sock to make things look even. My project notes are here.

Do you like the slight haziness of the picture? That’s because I had a big, fat fingerprint across the lens of the camera on my phone. Sigh. Anyway, you can almost imagine how comfy they are on my feet just looking at them, right? The lace makes the sock hug my foot and they are just perfect to keep them warm while I try to fall asleep. These socks are knit on a larger gauge then you would usually use for a sock, so they aren’t tough, but they are comfy!! I couldn’t help but drool over all of the nice patterns in the Socktopus book and I’m thinking that I will be making some more socks from the book before it goes back on the shelf.

MacKenzie really likes the mohair and sock yarn mix that is making the fabric of the sweater.

MacKenzie and I continued to work on the Pebble Tunic and made some good progress on that too this week. The construction is top down in an interesting fashion; the back is completed to the bottom of the armhole, then the front is knit to match. I’m now on the front knitting down to the point where the two sides will be attached to knit in the round. MacKenzie is not impressed… he just wants the sweater to be a blankie for him while he naps.

Garden

This must be starting to become a little old for all of you… I have some orchids blooming. I’m really kind of childish about them; every morning I rush to the craft room to see if I have a new bloom. Anyway, the miniature orchid opened its first bloom this week and the monster orchid has buds forming that are just… well… they are monstrous! I can’t wait for one of them to open… any day now!

Here are the four bloomers. 
Here is the new bloomer. It is my smallest plant and the magenta bloom is a perfect addition to the garden. I’m not sure, but there appear to be two more stems emerging from the main stem holding the buds below this flower. Yay! Blooms all spring!!

As soon as the monster orchid blooms I will post the picture!

Books

I finished The Water Dancer last night and I’m still thinking about the book. Sometimes I’m not sure I liked it all that much, but at other moments I am sure that it may be one of the most impactful books I’ve read in a while. It is a book about slavery, freedom, the eternal harm of broken families, and the power of purpose and mission. There is cruelty and loss. There is magic. There is the peace of freedom and reunions. There is an enduring question: what is a good life? When I got to the end I thought: this is the end?! Later on I decided that the ending was actually pretty darn good. This book will stay with me for quite some time.

This is Black History Month here in the US, which contributed to my choice to read this book right now.

The plantation in this book is set in Virginia on the eastern coast of the United States. The plantation in this book is dying as the soil is exhausted and the crops are no longer productive enough to maintain operations; owners are going west to the state of Tennessee, and slaves are sold or relocated as operations ship to the new state. Tennessee. My dad’s family was from Tennessee, and I know that my dad was born and raised on a farm. There was that story about the runt piglet that he made a house pet out of, and the time the cow came down with rabies… Out of idle curiosity I googled my maiden name and the word “plantation” to see if I would get a hit.

Suddenly Black History Month took on a whole new meaning for me. There was a return on the search that told me that there was, indeed, a plantation that carried my maiden last name. It is located in North Carolina just below the border with Virginia, the location of this book. There are testimonials from slaves with my last name in the National Archives. There is a town that has my last name, and it is located in an area of North Carolina with a lot of Dutch influence, which matches my maiden last name’s history. I know that my father’s family relocated to Tennessee from an eastern seaboard state. The history of America that is in this book is part of my history, too.

Suddenly the book had a lot more meaning for me. I am crushed. I am full of sorrow. I am only responsible for the actions of my own life, but I am burdened now by the thought that the pain, struggle, need for autonomy, and recognition of personhood that these slaves lived is also part of my history. I was raised in another part of the United States, California, and live and worked in integrated communities, but my roots on my father’s side go back to this.

I mentioned The Water Dancer last month to another member of my book club as one we might want to read. “Oh,” she said dismissively, looking at the book, “I think we should only read books by authors whose names we can pronounce.” Seriously? Ta-Nehisi Coates is not a big deal. Just sound it out!! You should have a last name like mine, or a chronic disease that no one can pronounce (scleroderma). Whatever. I took her comment to be racist or xenophobic.

I let it go. I wish now I had not. I’m glad I read the book, I’m not happy that I did that google search, but now I’m on the hunt for the story of my family in America. Ancestry.com, here I come.