October 26, 2011
Two years ago today, Riley came home from a typical Grade 11 day complaining of flu-like symptoms and feeling totally exhausted.
It was two days before his 16th birthday and the start of a very long, painful and complex journey with Lyme disease.
Two days from now, Riley will turn 18 ….a birthday that looks so much different than any of us could have ever imagined. He will be 18 going on “old soul”.
As a family we keep talking about how the journey of illness teaches in a way that few other life experiences can….some are welcome lessons and others we would rather pass by, but no matter what Riley is growing wiser and stronger….high school diploma or not.
The bits of progress that we enthusiastically reported the last couple of months are being masked by an intense flare-up of symptoms the past 2-3 weeks. Riley is now suffering from increased muscle weakness, facial and tongue swelling (swallowing, whispering and smiling are hard again), tingling and burning sensations, abdominal pain, brain fog and agitation, burning eyes (acid on his eyeballs), hot and cold sensations throughout his body, night sweats, very tender foot soles, and insomnia. In addition, he frequently gets body shakes… as if he has just come out of a glacial river- teeth chattering and all. Sometimes these shakes are evoked by a surge of emotion, positive or negative, such as a great golf play on TV, or overexertion during a whispered conversation, sitting too long after his bath/shower, or talking to or about someone or something that means a lot to him
Part of this intense flare-up is the result of a new treatment protocol to “attack” the co-infection called Bartonella. For a brief time several months ago, Riley was taking medications to address this infection, but he had to stop because the bacterial load from the Lyme bacteria was so severe that his body couldn’t deal with both treatments at once.
The symptoms that Riley has reported as being the worst these past couple of months are a sign that the Bartonella infection is raging. Bartonella is known to cause many of the symptoms that Riley is experiencing, especially the intense abdominal and neurological issues. He said to me the other day, “Mom, it feels like my brain has been ransacked. There’s been a ‘break and enter’ and everything has been turned upside down- furniture knocked over, piles of paper thrown everywhere, the whole house in turmoil… it’s a mess, but luckily they didn’t take anything. I just can’t find things easily”. This is Riley’s brain- he tries to finish a sentence and loses the word (has to go looking for it in his ransacked brain). He also experiences agitation - spontaneous emotions that seem to come out of nowhere, and he has also been really sensitive to touch again.
In a recent neurological QEEG assessment, Riley’s brain was described as a computer where the hard drive has everything properly stored, but it’s frozen and looping in circles…it needs to be rebooted and cleaned up in order to function fully again. The good news is that the hard drive is there and gradually being restored. We are starting some further neuro and physiotherapy in the coming weeks, as he is able.
Riley’s brain function continues to be better than it was several months ago. The severity of startle and anxiety caused by sensory input has remained toned down enough that he continues to be able to watch golf and some soccer on TV (still can’t handle shows or commercials -too fast and loud). The biggest thrill for him has been the ability to listen to audio books on his iPod. He is going through 2-3 books per week!
This is where all of you come in…Blog Reader BOOK PICKS.
Just like the “staff picks” at Indigo- we are looking for our “Blog Reader Picks”.
On Riley’s birthday this Friday, we would like to present him with a book list of picks from all of you… books you have loved and why this is so. Then over the course of the next few weeks we can download some of these books for him and he can think of you as he listens to your selection. J
So all you readers out there- send us the name of a favourite books-new and hot, oldies but goodies and we will pass these onto Riley. If you have time please send him one or two sentences describing why you liked a particular book.
If you haven’t checked out audiblebooks.com…it is a great source for audio books- this is where Evan downloads all of the books for Riley to listen to on his iPod. He’s not at the KOBO or Kindle stage yet, because reading for him is still too difficult, and he is definitely not able to hold a real book- so Hurray for iPods (thank you Steve Jobs!!!).
Look forward to hearing from you when you are able….post book pick as comment on blog or email is great.
Christine
A book list?! What a great idea! My pick would be The Unfortunate Events of Lemony Snicket. :)
ReplyDeleteWow! Were to start with the reading list. I have to say, in the last year, I've been gobbling up books by Kate Atkinson. I've read "Behind the Scenes at the Museum", "Case Histories", "One Good Turn" and "When Will There be Good News". Most of the stories feature, in some way, a character called Jackson Brodie who is a private investigator -- with his fair share of bad luck. Her writing is "delicious" -- there is a great mix of humor and drama. I'd recommend anything by her. . .
ReplyDeleteHi Riley,
ReplyDeletein case I forget- The Stone Carvers by Jane Urquhart. Canadian romantic epic centred around the daughter of a German woodcarver settled in Ontario. Appreciated the poetic prose with tremendous psychological character development and a wonderfully compelling story.
I would suggest:
ReplyDelete"Room" by Emma Donoghue. A cleverly written book where the author uses language of a 5 year old to tell the tale.
"The Shack" by Wm Paul Young. A stimulating and entertaining look at heaven.
"Marley and Me". A light hearted book for animal lovers!
Here it is Riley...the big day! HAPPY BIRTHDAY to our very dear friend and hero. We take a deep breath and a long moment today to be grateful for you, for all that you are giving us through this journey, for your courage and your humanity, and for the many small bits of progress that have happened in recent months. We love you like crazy!
ReplyDeleteAnd, we have been thinking about the books that have moved us in some way through our own lives...fiction, non-fiction, sad and hilarious. The list got way too long. But, we have chosen a few we would love to share with you. Here they are:
Lake Wobegon Days by Garrison Keillor--very funny, collection of short radio shows from Prairie Home Companion and the lives of ordinary people.
No Man is an Island by Thomas Merton--a piece of wisdom from a man who lived a life of monk and psychologist, great thoughts about our lives and our creator.
A Prayer for Owen Meany by John Irving--prepare to be in stitches with this story of a young boy growing up...with a life that is hard to imagine.
Stone Carvers--we have to add our vote to this, and may we add, this story is even better if you have seen the actual monument in Vimy, France--it pulls at every heart string...let's dream of the day you will visit there.
Cat's Cradle by Kurt Vonnegut--one of Brian's teen favourites, a classic, how can you not be tempted by a story where theology is designed by a calypso singer--a book about all kinds of madness.
The Mind's Eye by Oliver Sacks--the very best author on how our brains and our minds work.
Naked by David Sedaris--good thing you are having this birthday, this collection of hilarious short stories is definitely x-rated, don't let your mom listen.
Stone Angel by Margaret Laurence--how could a story about an old lady and a nursing home be a gripping page turner? Don't start this one unless you want to find out. Literary genius!
Jonathan Livingston Seagull--Dale was reading this one at your age and read it over and over and over.
Happy Birthday Riley, You are in our thoughts on this special day, and continue to inspire us with your character and tenacious progress. There is a book called Deep Survivor recommended to me recently, and this suggestion of an audio book list for you has inspired me to read it, as the description of the book seems to resonate with the knowledge and experience you are gaining in your current journey. You will have lots of books recommended, so let me read it first and screen whether I think it is worthy of making your list. It takes a few weeks for delivery, so expect to hear back from me on this in December. In the meantime I might suggest two additions to your list. (1) The Hunger Games trilogy by Suzanne Collins; a science fiction story targeted at young adults, which I really enjoyed. There is some philosophy in here as well. (2) Les Miserables by Victor Hugo, which is of course one of the literary classics - and contains one of the more famous literary characters ever created - Jean Valjean. Lots of luv from the Broadfoot clan, and looking forward to the day when you are back fully on your feet and we are able to visit with you. And hey - now you are old enough for it to be over a beer :)
ReplyDeleteHappy birthday Riley! I'm glad you can listen to books, getting lost in a good story is a wonderful way to pass the time while you grow stronger. I love to read and see many of my favorites in the list above. Here are some other gems that I love for a variety of reasons:
ReplyDeleteThe Handbook for Lightning Strike Survivors (Michele Young-Stone) - a quirky tale of a girl hit twice by lightening. It's mostly about the relationships/characters around her and a tad dark. My strongest memory is that while reading it, I got stuck out in a HUGE lightening storm in Chicago, I was sure I was going to be hit!
Pillars of the Earth (Ken Follett) - one of my all time faves. A historical fiction of monks set in medieval England. Don't let that scare you off, the story is amazing and educational, too!
The Stand (Stephen King) - I have read this many times and even did a paper on it in college. Not gruesome like some of his other books, an amazing story of survival.
Water for Elephants (Sara Gruen) - loved this story of the circus in the great depression. The writing is so real, you feel like you are there.
There's a few to get you started, always more if you ever want them...thinking of you with prayers and love.
Karen
Happy Birthday, Riley!!! We would like to pass this simple thought on to you: "We think of you often & relish news of all the the gains you have made". If you have a connection with fantasy, Greek Mythology(not required) and characters/heroes who are typically dyslexic or have A.D.H.D. this book series might be for you. The action, never leisurely in any of the five books in Rick Riordan's Percy Jackson and the Olympians fantasy series, runs at a frantic pace throughout. Also the incredibly humourous Harris and Me by Gary Paulsen about a city boy who gets sent to a relatives farm for the summer(this book brought back fond memories of visiting your Great-grandparent's farm near Blufton when I was a young boy... yes I got kick by a cow too). Jerry Spinelli's Maniac Magee is touching tale with inter-racial themes. These books might normally be for slightly younger audiences but might be just right considering the circumstances. All our love to all you!!!
ReplyDeleteHappy Birthday Riley. There are truly so many that I would love to recommend and these are the few that come to ms immediately when thinking about what to recommend:
ReplyDeleteTo Kill a Mockingbird - just saw the stage play this week and totally reinforced how incredible a story this is and how much I love it n
East of Eden - just read this boom this past summer and felt so intrigued by the character development. It was really great.
A History of Love by Nicole Krause - I read this a couple of summers ago and it was really great. Kind of unexpected but truly great.
Two by Miriam Toews - A Complicated Kindness - had always been recommended and after reading it - I truly know why. Also, The Flying Troutmans - a completely dysfunctional family on a road trip. Funny and extremely meaningful.
I could go on, but I'll stop myself with those recommendations. Think so often of you and your family. Take care.
Jenn Grimm :)
Wishing you a very Happy 18th Birthday Riley! We knew it was coming up. Joe is in Invermere right now but wanted me to pass along a warmfelt birthday hug to his buddy Riley. Joe doesn't really have a fav book, he still likes looking at sports magazines and bike magazines and stuff like that. So when he does pick up a book, other than the upgrade in Math that he is taking right now to improve his mark we are hoping that Riley will be up and about and will too be reading on his own. God Bless you Riley and you are in our thoughts and prayers. Hugs to you buddy! :)
ReplyDeleteHappy Birthday Riley. My suggestion for your book list is the Stephanie Plum series. Stephanie is a bounty hunter in New Jersey. She tries hard but gets into all kinds of trouble. The writer, Janet Evanovich, is hilarious. There are 18 books in total. I've read 16. I was in stitches most of the time. Don't get these books if laughing hurts.
ReplyDeleteStart with One for the Money. http://www.amazon.com/s/ref=nb_sb_ss_i_2_7?url=search-alias%3Dstripbooks&field-keywords=stephanie+plum&x=0&y=0&sprefix=stephan#/ref=sr_kk_3?rh=i%3Astripbooks%2Ck%3Astephanie+plum+series&keywords=stephanie+plum+series&ie=UTF8&qid=1319927214
Riley: I had no idea this was going on for you, until I visited with my dear friend Vivian Szabo the other day, and she let me know. I am too late for the BD list, but I would echo one of Dale and Brian's picks. That is, Thomas Merton, though I would say his Seeds of Contemplation would be for me one of my desert island books. I can only read short bits of Merton at a time - his writing plums such depths - then I have to go away and think and not think about it, try to live some of it.
ReplyDeleteI will join those who have been praying and thinking of you and your family, in the days ahead. If I think of other books - I should - I love to read - I may post anyway even if it NOT your birthday.
Hi Christine...can't wait to make some audiobook suggestions for Riley (Happy Birthday Riley!) But where to start? What has he enjoyed so far? This might help me to narrow things down a bit...Rachel xo
ReplyDeleteHey Riley,
ReplyDeleteSome great suggestions here. I want to re-endorse the suggestions of David Sedaris, Kurt Voneget, John Irving (Prayer for Owen Meany) and Sara Gruen, (Water for Elephants). all such great authors. I think I may have already made the suggestion that anything read by Frank Muller is great, my favorite is The Talisman by King and Straub. If you like vampires, I really liked the series by Huston starting with Already Dead. Anyway, audio books are a great love of mine, hope you find some inspiration in them as well.
-Erik RN.