A few weeks ago, I started Tweeting. I know all you who know me are laughing. My friend, Rika, was in hysterics the other night, as she watched me, with just one Tweet, increase my Followers, from seven to fourteen. That is a one hundred percent jump. Woohoo!
(Is that the appropriate response? I have never really been quite sure how to use that word – Woohoo…)
Up until a few weeks ago, I have been the anti-social-media queen. I am perfectly happy in my own little world: driving the kids to the school, music lessons and the swimming pool, venturing out of the neighborhood for errands, an exercise class or two, museum visits, maybe taking on the occasional design project and, of course, many doctor visits. I like being at home and have no real need to know what is going on in the outside world. Henry and Christian have kept me abreast of current events and with news from our friends. Henry is very on top of world happenings and Christian has a Facebook page where he is quite active. (I do admit that sometimes I think it is weird that Christian knows more about my friend’s lives than I do). Henry and Christian have always tried to keep what they share positive, especially after I flipped out about the dying bee population which, according to Henry, means eventually we will have no food. (Can someone invent mini drone bees to pollinate the plants? Please…)
My entry into social media came about when Christian and I thought we would give my brother, Doug, founder of LifeLineRacing (LLR), a hand and take over the charity’s social media. It is hard to run a nonprofit all by yourself, especially as everybody seems to get busier by the minute. Thus, me, scouring the annals of Twitter searching for relevant and positive articles for the LLR Facebook page.
It has taken some time to get used to Twitter. When I first set up my account, I followed LLR, @racing4CF (That is a Twitter handle; see I am learning.) and Jenny Lawson, @thebloggess. (I love Jenny Lawson. Even though I read her books a while ago, they still make me laugh.) At first, all that came up on Twitter were photos of shirtless tattooed men, whom I later learned were cystic fibrosis (CF) athletes showing off their lung transplant scars. Then I read lots of tweets about Jenny’s vagina being lasered. Lots of tweets. It was hysterical. Christian was a little confused by the subject matter. I tried to explain that Jenny was chronicling a visit to the ObGyn where she saw a poster suggesting that every female would benefit from vaginal reconstructive laser surgery. She did not even know this was a thing and began questioning her own need for the procedure. I do not think she normally tweets about all of her doctor visits, but the poster got to her – just another thing to be anxious about. Jenny has a lot of anxiety, which I appreciate. She makes me look halfway normal.
This is not the first time Jenny’s vagina has been a topic of conversation in our house. When Henry was home sick for a few days in sixth grade, I insisted he read her first book, Let’s Pretend This Never Happened. Henry has a pretty sophisticated sense of humor and I thought reading it would help hone his own blogging skills. He started that morning. I did not hear from him all day, which was pretty weird, because at about that time he had started growing like a madman and was constantly hungry. When I finally checked on him, he was half asleep, reading and giggling. A huge smile seemed permanently fixed on his face. He said he loved the book but confessed he had skipped the chapter entitled “My Vagina is Fine. Thanks for Asking.” (See Jenny, no need for vaginal reconstructive laser surgery. Your vagina is fine.) Henry went on to explain that he did not think it was appropriate for a 12-year-old boy to read about someone’s vagina. I thought it would have been fine as it is a pretty funny piece, but Henry has always been good at self-regulating.
While Jenny’s tweets (Is “tweets” supposed to be capitalized? I am not sure.) continued to amuse me for several more days, I began to reach out to the Twitter CF community and was hit with tons of information: serious overload about trips to Disney Land, a YouTube channel called the “Frey Life”, kids endlessly attached to nebulizers or jumping on those mini-trampolines, the current fight in England between Vertex and the NHS over the CF life-lengthening drug Orkambi, patients in hospital beds, the aforementioned lung transplants, constant fund raising, the London Marathon...
I skimmed everything. It was overwhelming.
Then I ran across one tweet that really hit home. It was crafted by Brad Dell, a gifted columnist with CF. He goes by @BradDell_ on Twitter. He tweeted, “A mom told me a babysitter had to calm down her 6-year-old-son with cystic fibrosis because he was sobbing about dying from a terminal disease. I cried for the same reasons at his age. I didn’t imagine that 18 years later, I’d be comforting a parent about it. This disease, man.”
The tweet baffled me. What it said in “140 characters or less” (though it seems that you can use more characters these days) brought forward so many emotions: for Brad and his toughness—he recently had both a lung transplant and cochlear implants and is doing great. The photos online of him rock climbing and horseback riding are inspirational – for the little boy and his realization about his illness and for what Emlen might go through in the future, for what he is aware of now and for what he doesn’t know.
Emlen is eleven. He is happy, well-adjusted, does great in school, has lots of friends, is interested in so much and really loves life. He knows he is sick and that his daily therapies and everyday meds help his disease. He thinks it is a drag to have to go to the CF Clinic all the time, (We have been there A LOT this past winter.) and he gets annoyed when he is on his nebulizer while he friends are outside playing. But, he knows that when he is not well it is harder to do his activities, focus on school work, learn the drums and have fun. This morning he said over breakfast, “Hey, I have not coughed in a while. That is good, right?” He has just finished up another course of antibiotics. It is his life and he is used to it.
(He is allowed to watch all the YouTube he wants when he does his therapies. That makes him happy. Sometimes, if he finds a good channel he will ask to do his nebulizer and vest several times a day. That works for us too, win-win.)
So far, we have managed to keep the long-term nature of his illness at bay. We have not broached the longevity issue at all. I am not sure if this is the way to go, banking on some miracle drug to intervene and lengthen his life, or to count on the regimented diligence of his therapies to keep his lung function up within a “normal” range. Regardless, it is what we are doing. We have occasionally gone to great lengths to avoid the whole issue with various slights of hand and clandestine methods.
A couple of years ago, the local paper, The Concord Journal, published an article on Emlen, CF, his swimming and LLR. Emlen had just finished up a successful swim team season. He was one of the top point scorers in his age group that year. Also, he ended the season placing first in the 25 yard butterfly and the 25 yard breaststroke at the Metro West Swim League Championship. (He managed to do this with a sprained ankle. However, we did not mention this to the reporter for fear of boasting more than we already were. You have to have limits, right? Many thanks to Amie, a fellow swim mom and physical therapist, for taping his ankle with KT Tape so Emlen could stand on the starting block.) When the article ran, all four of us piled in the car and drove to the local drug store to buy tons of copies: for the grandparents, cousins, good friends and for our own personal stash.
At first glance it seemed to be a pretty good piece in a small-town paper kind of way. It was called “Going for Gold”. The front page, above the fold, sported a huge photo of Emlen, with a big smile and floppy wet hair, at the pool sitting on the starting block, goggles in hand. It started off positive, setting the scene with a description of Henry practicing a jazz piece on his tenor sax, the notes wafting down the stairs and throughout the house. The words continued on, summarizing Emlen and all that he is about – electronics, fishing, swimming – and his disease.
So, we read it. Out loud. To Emlen.
I am so grateful that at the time he was rolling around on the floor only half paying attention, lamenting that we would not let him watch TV, because towards the end of the piece, past the touchy-feely Emlen stuff, the facts about CF came into play. One line stood out from all the others, the line about life expectancy. I stumbled as I read, but managed to recover by saying something like the “life expectancy of a person with CF issss….. long.” I did not read that the life expectancy of a person with CF is 34 years. I skipped the rest of the paragraph which continued to discuss CF as a terminal illness and moved on to the part about Doug, LLR and its work.
“Is that it?” Emlen asked when I stopped. He seemed happy that we were finished with the reading session. He left the room to go be a nine-year-old boy. When he was gone, we gathered up the papers into several piles: a pile to be mailed to the grandparents, cousins and friends, a pile to be filed away and a pile for the few that we were leaving around the house. Then I got out a big black thick Sharpie. In every paper that was not relegated for the mail or posterity, I redacted the life expectancy line.
Later when Emlen was rereading the article, he asked why some of the words were blackened out. I made an excuse along the lines of, “the printer had too much ink. That it happens sometimes in the printing process. It was a mistake.” He accepted this as kids do with simple truths – or non-truths as in this case. It was an easy cover up because in this digital age, my kids are not that familiar with newspapers. The subject never came up again.
Until last summer, when, after being over at a friend’s house whose walls happen to be plastered with framed newspaper articles about family members, Emlen asked if he could get his article framed. “Do we have any left?” he wanted to know. He said he had the perfect spot for it in his room.
I agreed. I thought it was a great idea. “We should celebrate your accomplishments. I know we have a few papers left over.” I said, as I mentally organized my week to fit in a trip to the framers.
Clearly, I had forgotten about the article’s need for a Sharpie.
I unearthed the newspapers from the depths of storage, found one that was in pretty good shape and brought it to Frameables in Concord. It is a great little frame shop with a fantastic inventory. They have been able to easily frame all the stuff I bring to them. They even had a frame made in New York for the Anne Appleby that Christian gave me a couple of years ago. The owner, Andrea, really knows the business. I also like the shop because Andrea is the mother of our neighbor. She likes to tell me stories about him as a kid. I file these away and mention them at the most opportune times – at least opportune for me, not so much for him.
Andrea was not in the shop that day, so, no new stories. But it was quiet, and we were able to spend some time deciding on the matt color. Newspapers with their grey-y newsprint background are hard to coordinate with the numerous choices of whites. Once that was done, we chose a frame. Then we talked about dimensions, wrote up a work ticket and I paid. “It will be ready in two to three weeks,” they said as I walked out the door.
Check that off the list of things to do. Not a second thought about it until two in the morning, when I woke up in a panic. Thoughts were racing, “We are getting THAT article framed, to hang in Emlen’s room. With THAT life expectancy line typed up in black in white. What was I thinking? Oh shit. What are we going to do?” I lay awake for the rest of the night, searching for a solution.
At about 5AM I figured it out. As soon as business hours commenced, with X-Acto blade, glue stick and yet another copy of the newspaper in hand, I rushed back to the framers to carefully cover the number three of the “thirty-four-year” life expectancy line with the number seven. I figured seventy-four is fantastic age to live to and managed to find several number sevens in the paper. It is a good thing I have a Masters’ Degree in Architecture which I earned after three and a half years of using an X-Acto blade for teeny-tiny precise work. The cutting and pasting of the number seven was a little fussy, mostly because our glue sticks are old and gummy. I have not bought new ones since the days of pre-school arts and crafts, but I got it to work.
“Now, I can really check that off the list.” I thought to myself as I left the store.
I will mention that I woke up at two in the morning that night wondering why I did not just put a nine over the three making the official CF life expectancy ninety-four. I seriously considered going back to the frame shop to change it again, but decided that I did not want to be known as more of a headcase than I already am. So, I left it.
Emlen is pretty happy with his article. It looks great in his room. Actually, he is super proud of his article. He has read it many times. And, I guess, for an eleven-year-old kid, seventy-four is really far away.