I am still Twittering. That is what I call it. Henry and Emlen get annoyed when they ask me what I am doing, and I say, “I am Twittering.”
Emlen has gone to great lengths to try to explain to me that one “Tweets” but one does not “Twitter.” “Mom, that is not how it works. You TWEET while you are ON TWITTER.” He says this with an eyeroll and a huge body shrug of frustration. Of course, this amuses me and makes me want to use the “wrong” words even more.
“Really?” I respond with a glint in my eye. Henry has gotten used to this teasing behavior from me and lets it go, but Emlen can’t. Everyone needs to be doing the exact right thing at the exact right time. He is either going to be mechanical engineer, lawyer or project manager when he is older. Although at the moment, he is proving to be a really good writer, so who knows.
There does not seem to be a verb that encapsulates what I do on Twitter, or what everyone who has a Twitter account does: the scrolling, reading, liking, retweeting, commenting, and just plain tweeting. When I look up “Twittering” in the online dictionary, the definition I get is what one would suspect, “to utter a succession of light chirping or tremulous sounds.” When I go a little deeper into the research, I am sent to Wikipedia to the pen and oil inked drawing, “The Twittering Machine,” by Paul Klee, 1922.** (Klee is one of my favorite modern artists, so I am thrilled that he has a work entitled “The Twittering Machine.”) Birds, perched on a wire branch-like hand crank, conjure images of the bipolar relationship of nature and the mechanical. One can almost hear the noise incessantly created as the crank turns and the birds chirp. The context of the drawing is left up to the viewer, for his or her own interpretation, as it is a simple drawing with no background.
I see two images immediately. In the first one my mind wanders to an old run-down farm, where modernization has replaced the old and simple tools. They rust away while birds repurpose them into the foundation of their new habitat. The second image is Twitter itself. All those tweets, repeated, noisy and constant; run by the continuous computerized cranks of people. Even the bird’s tongues take on different shapes as if each of them has their own opinion. It is as if Klee knew where we were headed. Or, did the founders of Twitter have Klee’s drawing in mind when they first started their company? I am not sure. The birds and the machine seem to hover precariously over a rectangular pit, about to fall into oblivion the moment their balance is disrupted. Twitter is large and looming; it is not going away anytime soon.
I think I like Twitter. As I mentioned before it is an incredible resource of CF information and support. I am beginning to feel kinship with many of the people I follow. The whole thing can be borderline intimate which I see as a bit weird because I realize that I will never meet any of them and everything is all out in the open.
One of the first CF-involved people I followed is a woman named Susan Perri. (@susanperri). She is very active, tweeting about healthcare and her thirty-one-year-old son who has CF. She teaches kids with autism. She is an artist. When I followed her she direct messaged (DM) me, writing about what she does, what she stands for, how she is leaving the fight for CF awareness up to the younger parents and focusing on healthcare. She asked what kind of art I do. I should have responded, but I was in day two of twittering and was a little overwhelmed. So, I will now. “Susan, you are the best. I will continue to follow you. I hope everything for you and your son. When I am art-active, I do more sculpting stuff with found objects, creating things out of what used to be something else. Thanks for asking. I really like your paintings. Art is so good for stress relief. I am glad you have that outlet.” ***
Then I found a bunch of mothers of CF kids. I really get them. They are going through the exact same thing that I am. I have good friends from the neighborhood, from the swim team and from the kids’ schools, but they do not really know my day to day realities. About a year and a half ago very good friends of ours took Emlen on a weekend long excursion. I gave her the “Emlen Manual”. It is a three-page document that sums up his care. Mostly it discusses the number of enzymes he needs to eat before each meal, because that is the most complicated part for someone who is not used to the routine. She laughed briefly at my attention to detail. However, when she returned him a few days later, her comment was “That is a lot. I am glad I had the instructions.”
I could talk about CF all the time, but it can be depressing and sometimes I need an escape. Also, if I am complaining/venting, other people begin to chime in about their daily grind. Sometimes I find myself annoyed, which is unfair since we all have stuff we are dealing with. Once I patiently listened to a mother go on and on and on about how her child had pink eye for days and how awful it was. (Pink eye is gross.) I empathized, “My kid has CF and the medical stuff is a lot.” She cut me off, saying that at least it was not pink eye. I guess, in hindsight, that was when I stopped talking about Emlen and CF.
One family I feel a kinship with on Twitter goes by @AlexsCFArmy. Their daughter, Alex, is Emlen’s age, has CF and deals with all the same stuff – the exact same stuff. I follow her ups and downs, her success on the soccer field and in school, her hospitalizations and round after round of IV antibiotics. Alex was in and out of the hospital with some pretty serious GI issues at about the same time Emlen was in and out of the hospital with sinus issues. It’s similar. You never know when you are headed for a hospital admission.
I also follow a few people who have a sense of humor about the whole CF thing. This one guy Simon Green (@simonjongreen), tweeted, “I like to giggle when I fill out a form asking for accessibility requirements and I have to write ‘quick access to a toilet.’ It is funny because it’s true and references my love affair with the commode.” I laughed out loud thinking that this is one of the points we have to include in Emlen’s medical 504 plan for school.
And of course, Jenny Lawson (@thebloggess) continues to amuse me. (She has nothing to do with CF. There has to be some non-CF-stuff that I look at, right – like the Dali Lama and Mindfulness Wellness?) Jenny has this schtick where she tweets “The most baffling thing Amazon recommended today”. At first, I was not sure if this was actually her or if she had been paid to pimp out Amazon. But after she went on for days about Amazon’s recommendation for cat wigs and then tweeted photos of her own cats wearing the wigs, I would like to believe that it really is her.
Once, she tweeted that Amazon had recommended a book called The Haunted Vagina while she was searching for reading material for her daughter. Seriously. I looked it up. That is its title. The book jacket features a half-naked woman front and center with a haunted house and old weathered tree darkening the background. Jenny tweeted photos of her reading the book and packing for a trip with the book. Also, she hosted an online reading group for the book. I would too if Amazon had recommended it for me, which it wouldn’t because I have boys. But, on second thought, a haunted vagina might be scary for any teenager.****
(Hmmm…Maybe I should hand those out on Halloween night…? Yes, that is it. I have been wracking by brain on what to dispense to the trick-or-treaters this year. I like to give something with the candy. Two years ago, I managed to unload all the plastic wrapped tooth brushes that Christian had collected from his years of bi-monthly business-class flights to Europe. We had two drawers full of them – in other words, tons. Last year I handed out the massive pile of dentist-provided toothpaste samples, the little Colgate and Crest tubes that are not enough toothpaste to take with you when traveling, but you feel guilty if you throw them out. However, this year I am out of dental hygiene supplies. A few witches, aliens or New England Patriot Gronks could receive a copy of The Haunted Vagina as a treat, maybe? I wonder if Jenny’s tweets made the price point go up?)
I will confess that I have also used Amazon for book recommendations. They are usually more “spot on,” as my British tweeting friends would say, than the local public library. When I manage to have a trip to the library on my radar, which I usually do not, and there happens to be a parking spot, which there usually is not, most of the books I collect bomb. Emlen hates them. He is a notoriously picky reader, only enjoying books that fall into The Dairy of a Wimpy Kid or Captain Underpants genre. “Comedy only. No girl drama. Nothing scary. And please stay away from mysteries,” he insists. So, it is not really my fault or that of the library’s.
(I just remembered, I have to renew the last round I borrowed. They are due today. Emlen is still slogging through them.)
The most success I have had in finding books for Henry and Emlen were based on suggestions that came from the elementary school librarian. Mrs. Pettyjohn retired last year, but in the eight years I volunteered in the school library, she always knew exactly what would hold my children’s attention.
I liked my library volunteering days. Once a month I would schlep into the school to sit at the desk, man the computer and check books in and out. Henry and Emlen are no longer in elementary school, but while they were it was the perfect volunteer job for me for two reasons. First, it is quiet in the library, not like the chaotic art room or the classroom on math project day with the thousands of tiles, numbers, equations and noisy children scattered about. Library duty is quiet because the kids are not allowed to talk, at least not that much. They are not really even supposed to talk to me, except when I am checking out their books. The second reason for enjoying this job, is that, in between checking in the returned books and checking out the new books, I shelved books. There is a strict order to their location and I love it. Ficton is alphabetized on the left side of the library. Non-fiction is organized by the Dewey-Decimal system on the right. The biographies are alphabetized over by the computers. The fairy and mythical books, the easy readers and the series books are scattered elsewhere, but it never waivers. Every book has its place. Perfect.
Sometimes I would arrive at the library early to get ahead of the shelving part of the job. Mrs. Pettyjohn and I would catch up on what was going on in our lives and I would ask her for book recommendations. She would usually have some ready to go for Henry and Emlen; World War II novels for Henry and, as I mentioned earlier, the more creative, funny ones for Emlen. Most of her suggestions were a success and led me to other books by the same authors – just like Amazon, but Mrs. Pettyjohn is not a giant complex algorithm on the internet. She is a person. She would not recommend The Haunted Vagina.
Even when Henry graduated from the elementary school, she still helped find good reading material. As he got older, he lost interest in reading. He couldn’t stand the dystopian novels and vampire dramas that his peers were so gaga over. At one point he had all but stopped reading books, focusing only on automotive magazines and The New Yorker cartoons. Also, I suppose the introduction of Instagram and Snap Chat into his life via his new iPhone contributed to the reading pause. We argued about it. I instated the “read a book for one hour a day” rule before any screen time. And I promised him that I would talk to Mrs. Pettyjohn, “to get something decent.”
However, I was unable to pick her brain that month. I got distracted. When my library rotation came up, I went in early, but rather than chatting and shelving books, Mrs. Pettyjohn was waiting with a book for me. Ghosts by, Raina Telgemeier, had been graciously gifted to the library. The author is very popular and has been on the New York Times Best Selling list. Her newest one, the one Mrs. Pettyjohn was handing to me, is about two sisters. The younger one has cystic fibrosis (CF). Mrs. Pettyjohn wanted to know whether I thought it would be appropriate for circulation in an elementary school that had a CF student, regardless of the author’s status.
“Why not?” I thought. I was naïve.
I thanked her for including me in the decision. She responded that she thought I was the only person who could actually make the decision. I spent the next hour, ignoring the piles of books that needed to be checked in and shelved, quickly reading the very colorful cartoonish and super-friendly drawings of the graphic novel.
Basically, in summary (this is not a book review, because if I was not so personally involved with the subject matter the story might be very good), after being moved to a salty sea aired town on the coast of Northern California, Catrina and her younger sister, Maya, who has CF, must come to terms with the lifespan-limiting aspect of the disease. Maya is about eight years old (I do not have a copy of the book, so this is all from memory and might not be accurate) and extremely sick. She drags her oxygen tank with her everywhere she goes. There are drawings of her in bed with her nebulizer medicines surrounded by racks of medical equipment. It is pretty dramatic. But Maya has a good outlook on life and it is hard to temper her natural curiosity. She insists on exploring the rumors that their new town is haunted. She desperately wants to see a ghost. As Maya’s conditions worsens, the author uses the town’s annual Day of the Dead celebration to access the ghosts of town’s past residents. The sisters discover the world beyond and come to the realization that one should not be scared of death. Dying is not the end, but merely a phase of life.
At least that is what I remember. I might be confusing it with some aspects of the movie Coco. (Again, I do not have a copy of the book.) Also, I am unsure if Maya dies at the end because at that point the students were coming around to check out their books. And I was a tad horrified that a book with such a dire picture of CF had been written, and that it might be readily accessible to Emlen.
After the children left, Mrs. Pettyjohn asked whether I would feel comfortable having the book added to the school’s collection. Trying to be polite, I told her I thought the book was misleading. I did not know of any elementary school student with CF that is that sick. (OK. I do not know anyone else with CF, so it is a little hard to say, but in all of my twittering, I have not run across a CF child who is as ill as Maya. In and out of the hospitals, yes, but not dying. CF is a progressive disease. The adults are the ones that are really sick – with oxygen tanks and 21% lung function.) I told her I did not want Emlen to read the book. He did not need to know this could be his fate. I also thought his friends should steer clear. First, because they might look at Emlen differently if they knew and second, because I did not want anyone who might be mean spirited bringing it up over and over again.
So, that is me, wanting a book to be censored from a public elementary school library. All I could see in my head were book burnings with ashes of Catcher in the Rye floating in the air. I felt badly because public schools are always strapped for cash and gifted books are a blessing. Fortunately, Mrs. Pettyjohn agreed. She didn’t think the subject matter was presented in a positive way, even though the author had said the book had been thoroughly researched. (Research materials found where? The 1950’s when a child born with CF would not make it past 8 years of age? Apologies if that is snarky.) Mrs. Pettyjohn said she would tell the gift giver that they were going to put the book in the back room to be saved for a more appropriate time.
I mentioned this whole book-censoring drama to my friend, the one who had taken Emlen away for the long weekend. She remarked that she had just purchased it. I think I went pale, because she immediately said she would look at it before placing it in the “to read” pile. She read it and decided to shelve the book for a later date as well.
Emlen’s official Middle School 504 Review meeting is next week. We are going to meet with all of his teachers to see how the 504 that we wrote this summer is holding up: ready access to bathrooms, staying away from sick kids, being excused from homework if he is too tired, etc. I wonder if I should explore having Ghosts pulled from the middle school library? Or is it too late? Do any of Emlen’s classmates know what it means to have CF? I would guess not. Kids tend towards simple truths. And, in Emlen’s case, he is young and looks healthy, ergo there is nothing wrong with him, other than having to swallow six pills right before he eats – oh and turning really red when he gets hot. His friends do think that is weird.
That is what I see on Twitter, the twittering machine, the birds chirping perched on a rusty hand crank. In my Twitter feed, the little kids with CF are running around participating in sports, going to their doctor appointments and attending clinic visits. Their parents work tirelessly keeping them healthy and raising awareness.
The teen CF crowd is a little light on tweeting. I suspect that is because as teen you do not want your disease to define you or, in the worst-case scenario, you just do not want to deal with the disease at all. There are a few CF teens present, like Morgan Coxhead (@PastiesForPooches) who wants to be a professional footballer and fourteen-year-old Benat Broderick (@BenatFightsCF) who chronicles his life while championing for EVERYONE with CF. (I am not sure he sleeps).
The twenty to thirty something CF’ers are most active, information turns out so fast in this age group that it is hard to keep up. They are all about social media: Blogs, Vlogs, YouTube, Instagram. They use all the outlets so efficiently while discovering themselves as full people, contributing to society and balancing their health care requirements. A lot of them make it their full-time jobs or at least their second full time job to raise awareness. Brad Dell (@BradDell_) is a gifted writer and columnist, writing about his personal experience with the disease. @NormalLife7, Kate Eveling (@thevfto) and @FreyLife produce daily/weekly vlogs. Gunnar Esiason (@G17Esiason), tweets, blogs, has a podcast and gives lectures about CF all over the country. He is busy. And of course, I would be remiss if I did not mention the current super hero of the CF world, Josh Lewellyn Jones (@JoshLJ24), who just lifted one million kilos in twenty-four hours. He broke the world record to raise money and awareness. He even has his own hashtag, #MillionKiloMan.
Every once in a while, a very active CF Tweeter goes quiet. I like to think that they are on vacation or taking a break. I need breaks from Twitter too. I get it if that is the case, but I also know that it might be because they not doing well. It is tough to accept.
However, with every medical breakthrough, the life expectancy of CF increases. At the North American Cystic Fibrosis Conference this fall, the Cystic Fibrosis Foundation announced that it hopes, given all the positive data from the clinical trials of the new triple combination drug therapies, that 90% of all CF’ers will be doing well by this time next year. Longevity for CF is becoming more and more realistic. I am glad that Emlen will have a good chance to explore his future, whatever it is that he decides to do. (I still vote for mechanical engineer, lawyer or project manager). So, maybe, censoring the truth for a little longer is OK...
*The Longevity Series, Part One: Redacted” is in the Archives, May 2018, in case you are behind. I am. I had planned to complete all three pieces by now. But life gets in the way and other things come up.
**(Photo of work from, Naubert - Riser, Constance, Klee, The Master Works (London: Bracken Books 1988) p.70
***I finally answered @SusanPerri. I have not heard back yet. I do not expect too. I enjoy seeing what she tweets every day. She is working so hard trying to save healthcare. I am just going to say it once, for Susan, please vote.
****Henry will be home on Halloween night, recovering from his NOT-CF sinus surgery. I asked him if he would like to help me hand out The Haunted Vagina to the older trick or treaters. He looked at me like I was certifiable. Enough said.
Emlen is doing well - at least physically. The sinus surgery was a success. Thank you for asking. We got back from the hospital mid-week. It was a much shorter stay than expected. The next morning, after sleeping for twelve hours, Emlen announced that he could feel air moving on the back of his throat when he used his nose to breathe. I had to think about that, because the sensation is pretty normal for those of us with open sinus cavities.
On the other hand, there have been some psychological ramifications from having surgery scheduled two weeks into the first year of middle school. Calling it anxiety would be putting it mildly. It has been drama. Emlen’s nervous tummy is back. He refuses to eat. That spirals into not having any energy to deal with, well, EVERYTHING. This morning, with a big sigh, as he stared at his whoopie pie breakfast (at this point I am not even asking him to eat something “healthy”) he wondered what was going on with his body. I know what is going on. He was pretty much tortured for three days and now has to get used to school all over again. Yesterday, it was all about the lunch tables and who was eating where.
I suppose it will get better, a little bit every day.
Thank you for the hospital visit care package. Emlen tells EVERYONE about his emergency underwear. I am trying to get him to put them in his backpack to be carried with him at all times. I think it would be funny; reminiscent of when the children carried zip lock bags of extra clothes everywhere. But he declines with a huge eyeroll. Apparently, we have come to that age where I am beginning to embarrass him – all the time. I asked him this point blank yesterday, if we were finally at that age. He rolled his eyes while nodding, which is quite hard to do. You should try it. I did. That embarrassed him too.
And thank you for my socks. I LOVE them, pink and blue "Bitches get Stuff Done" socks. Perfect. Henry was a little worried that I would wear them in public. He announced that I could wear them the same way I wear my Nordstrom NBA branded Golden State Warriors Stephen Curry socks, with long pants and tucked well into my over-the-knee-high boots. Then he realized that the lettering was on the toes and no one would see it. I am wearing them today.
Today is a get stuff done day.
And my feet are cold.
I think I have recovered from the whole moving into the hospital thing. It has taken a while. Mostly, because even though you are finally home, and it is nice to be home, there is still tons of medical follow up to do. The ENT who performed the surgery pulled tons of "infected Emler’s glue-like puss" (his words) out of Emlen’s nose. The cultures grew staph* and steno* which totally makes sense as these were the two bugs Emlen has been dealing with for the last year. Now he is on a pretty high dose of two oral antibiotics (Yay! No IV antibiotics!) to try to take out any of the bacteria left in his nose or that happened to be knocked loose during the surgery and is now trying take up residence in his lungs.
(Maybe that is why his stomach is upset all the time? No. He was fine last week while he was home, recovering and not at school.**)
Then of course there were piles of undone laundry, bill paying, grocery shopping, and emails to tackle. Here is my status: the laundry is back on track, the bills are paid, the pantry is stocked (we do not really have a pantry, but it is a nice way to sum up hours of food shopping, organizing, preparing and cooking. One little phrase.)
Oh, and, Henry is complaining that he does not have quite enough football to watch on Sundays. Hulu is not cutting it. He misses NFL RedZone. We will have to explore more non-Comcast options for him. Add that to the list.
I am almost caught up on emails. The big one that caught me off guard was the middle school band teachers inviting Emlen to join the Wind Ensemble. I thought it was odd, because Emlen plays the drums. But after a bit of back and forth I figured out that “Wind Ensemble” is just a fancy name for “Advanced Concert Band”. After some thinking and asking a bunch of questions, (Are there other 6th graders in the band? What is Masquerade Night? Do I need to wear a costume? Do we take a big coach bus to NYC in April?) Emlen decided to do it. I just spent the last hour signing Emlen and Christian up for the NYC trip. It is three days of concert band, orchestral and jazz music, nice restaurants and Broadway theater. Christian is going to tag along to help train the middle school nurse in all things cystic fibrosis (CF). Hopefully this will allow Emlen, in a couple of years, to head off to Washington DC on the eighth-grade class trip without his parents tagging along. Christian will also be in charge of eight other kids. Chaperoning! Fun? (At least it will be for me. I will be at home being silent. Maybe Henry and I can go to Nordstrom and buy more socks. They should be on sale by then, because it will be spring time and NBA season will be over.)
On top of all the household chores (I swear some days I am just a maid) I had to jump right back into getting Henry to all of his medical appointments. I think I mentioned them last time. Braces off. Retainer molded and fitted. Yearly well check and flu shot done. We saw the ENT too. I would love to have wrapped that up with a simple long course of antibiotics, but it seems that there is going to be some more follow up. After some poking and prodding the ENT concluded that Henry’s sinuses are perpetually inflamed as evidenced by a developing polyp. (What is it with this family?) That is going to lead CT scans, more appointments and possibly surgery. Please cross your fingers and hope that it is a mere outpatient procedure. It will probably take forever to coordinate.
In the mean time I have tasks looming, future tasks, not catch up tasks. Swim team starts in a week. It will be good to get Emlen back in the pool. He is always calmer after swimming. Our first meet is in a month and it is time to get the Thoreau Sharks Ribbon Committee back together. Ribbons need to be cut. Hundreds of firsts, seconds and thirds place ribbons are waiting, still wrapped on their spools. And, we need to order a gazillion participation ribbons. I think we only have a few remaining from the summer. Then those will need to be cut. I do not mind. I still love my pinking shears, and it gives me an excuse to watch TV. But you already knew that. I just finished the whole West Wing series, so if you have any suggestions for something new that would great – on Netflix, since we might dump Hulu because of Henry’s whole not enough Sunday football concern.
And art projects have entered my head. Sketches of string wrapped antlers, copper wire, mica, CF med vials, burlap, mushrooms, like the fish from ages ago, are scattered through the house on sticky notes. It has been a long time since the studio has been calling to me. I am not sure why now. I have a lot going on. Perhaps because I all but retired from the interior design career. I have only one California client left. As I said to him last month, while we were finding a garage door for his house on the hill, “for him and only him.” But whatever this art thing is, it is worthy of getting a sketch book and exploring. At least it will be a place to store the sticky notes.
Ack. I just got off the phone with Henry’s ENT. According to the CT results, his sinus cavities are worse than Emlen’s. They are recommending the same surgery that Emlen had. On top of that they want to do some genetic testing to confirm that Henry does not have CF. Great. I am almost one hundred percent positive that he does not. He has none of the symptoms other than a polyp and sinus inflammation. But can you imagine? However, it is likely that he is a carrier of a CF gene. Which one would be the question; my gene, which partially works, or Christian’s gene, which does not work at all? There are theories floating around the CF medical community that if you are a carrier of a CF gene you may be more prone to CF-like symptoms such as exercise and/or viral induced asthma, sinus disease, GI issues, and excessive sweating while not actually having the disease. (I believe them. I think that answers my question: What is it with this family? It is the CF gene.) However, as our pulmonologist says, it will take time for the rest of the medical community to catch on. Maybe they can follow Henry and see how his health progresses? Maybe even for free. He can be a very tall science experiment.
Say hi to Miranda, Iris and Tim,
PS. While editing, I read an article about a man who was diagnosed with CF in his thirties. He and his wife were having trouble conceiving. It turned out he was infertile, as so many male CF’ers are. It was not the infertile part that caught my attention. We already knew about that. It was the late diagnosis part. How could his doctors miss that? A mild case maybe? Did he have any symptoms like sinus issues and polyps? Who knows. The article did not go there. But, given what is going on with the Henry’s nose, the ENT and genetic testing, I think I am going to go back to bed. Please wake me when it is over.
*I shortened “staph” and “steno” because I can never remember the names of the bacteria we are dealing with. You would think I would be able to after seven years of this. Denial? Oh yes…
**We finished the courses of antibiotics two days ago. Emlen still had an upset stomach this morning. It is not the meds. Just nerves.