At 19, I was diagnosed with Friedreich’s Ataxia. We’d been married for about two months and I was about that pregnant. I could walk, without help even. Stairs were more difficult and I needed a hand or, at least, a handrail. At our wedding, we stood on two steps that we then climbed to light the unity candle. I held on to Craig the whole time, just like at the football game where we’d met 2 1/2 years before.
When I was diagnosed, we’d driven to Seattle. We left in the middle of the night since we were both awake. One stop at Frankie Doodles for breakfast and we were off for a honeymoon that would just happen to have a doctor’s appointment. We arrived, rented a hotel room, checked out the space needle and went to my appointment.
We still laugh because I was a ditz at that appointment. The doctor held the flash light in front of my face, and said, “Open wide.” So I opened my eyes really wide. LOL
Well, I was diagnosed based on case history and experience, but they drew blood for the actual test that was nearing completion. Two and a half years after that, I was diagnosed by blood test. I was told to eat healthy, exercise and keep a positive attitude. That was as close to any kind of treatments we had.
So, we skip ahead six years and I begin using a walker. Holding onto walls, especially after several sudden falls and sprained ankles, just did not seem like a healthy thing to keep doing.
Three years after that, 2003, I fell in the hallway of our home. I broke both bones in my ankle. Surgery gave me two titanium plates and eight screws. I couldn’t put weight on it for over two months. The boot came off when my daughter was in the hospital, so I didn’t jump right into therapy. I started therapy a month or so into 2004.
I could walk a few feet with with my walker, but I was very, very nervous. I’d never broken a bone before and I definitely did not want to do it again. Hearing the snap, feeling the most intense nausea. Ugh Plus, with FA, I had sat for so long in a wheelchair where balance doesn’t matter, with the feeling of safety that came with it, that I felt dizzy when I stood up.
I still do at times, like my brain is blue water and my skull is one of those clear rectangles that move like a seesaw. Makes standing, especially with holding on to movable objects, a strange thing. A curious mix of strength, weakness, fear and determination.
These pics aren’t my legs, but here is what we are trying to do. I locked my knees for so long when I walked that I’ve done some damage. Now we are trying to fix it from the first pic to the second.
I began pool therapy last fall. I had a lot of strength to gain. My therapist has been amazing. Recently, I have begun land therapy. Walking with my knee cage and with parallel bars. It feels good. And suddenly 5′ 1/2″ feels really tall. LOL I wish I knew what happened to our digital camera. I could take small video clips of it.
I just wanted to log my progress a bit. Have any of you fought a journey like this?
I love all those stories! The picnic, Bruce Springsteen concert, kissing all those troopers! LOL Had to be fun. Yesterday, Craig made waffles for breakfast and chicken fajitas for dinner. Yum. In between, we visited a few antiques stores that we’d always wanted to look around in. Several were more junk or just old junk with a few cool items. However, the one that was our favorite, was full of old furniture.
Bed sets with headboard and footboard and dressers. Vanities with large mirrors. Gentleman’s drawer sets with two low drawers, a long mirror and a hat box. But I fell in love with the steamer trunks and hope chests. I cracked him up because if it was a box, I had to open it. Same with drawers. lol
But they had the most gorgeous old fashioned writing tables that flipped closed at an angle and opened to reveal sectional pieces and small drawers. One of the tables had a glassed in bookcase for a back drop and when the lid started to open, to long pieces of wood would slide out to support the table part and slide back when the lid closed. Gorgeous.
Then there was this Chinese apothecary chest. About 3 feet tall and 3 feet wide and one foot thick, it had around a hundred small drawers. There were 2 slots per drawer and on the outside it each drawer was marked with Chinese symbols. If we’d had Craig’s cell phone, we definitely would have taken pics.
Then there were the books. We fell in love. Unfortunately, they were mixed in with obviously new ones, like some of Dr. Phil’s, but there was a 1915 printing of Return to Tarzan by Zane Grey. Two of those and one in really good shape. Little kids beginning reading primers. Cloth-bound hardbacks with no copyright date in them. Longfellow, the Song of Hiawatha and many more.
There was a 1939 yearbook from close to Spokane with letters and an invitation to the 50th reunion inside. The outside binding was made of metal and it would have been so wonderful If I was writing a historical set in that time period. And there was this pretty lavender, decorated book called Princess.
I love that store. And I found out how fascinated by older books Craig is. Trust me, his love of books is a big change and definite growth since high school. It was awesome knowing we could share it. Too bad my wheelchair wouldn’t get me into the old bookstore around the corner. Too many steps.
But I think we need to learn a lot about old books before we start collecting any. Like, what does it mean if it doesn’t have a copyright? What if there is a leathery paper binding? Lots to learn. lol
What is your favorite hobby?
Also, chosen by number of years married, the 3 winners of a free copy of Betrayed are:
Alexis Morgan – 34 years
Vicky Burkholder – 35 years
Katherine Allred – 41 years
All of you ladies are an absolute inspiration. So are you, Ann Roth. Over 20 is huge.
Thank you all for celebrating our anniversary with us.
I can’t wait to spend the day with you tomorrow.
I love our wedding anniversary. It’s so funny, though. Everyone was worried it would rain too much for our outdoor reception and the whole day ended up smokin’ hot. I had a beautiful Cinderella dress with a high collar and lots of hand crocheted appliqueing. My mother did the most beautiful job. It was hot though. I want to add pics but that will have to wait until my scanner works.
This year might be the rain, though. lol I’ve written a lot about how we met, started dating and got married in the archives. But to recap, we were 19, had dated two and a half years and didn’t know it, but were to have our Miracle Child by the end of the year.
Does anyone have a fascinating anniversary or wedding story to share? Answer in the comments and in the spirit of the holiday I will give away 3 copies of Betrayed!
Have a great day tomorrow!
A book of poems about life, love, loss and cancer written by 13 year old childhood cancer survivor Thalon Marie-Leigh Hansen has just been sent to print at Lulu.com. Thalon is donating the first, hardbound copy to the annual Candlelighters’ dinner party this year, on April 25th.
For anyone who does not know about Candlelighters, I’ve blogged about them before and they can be found in the Cancer category in my blog archives. They are an organization designed to aid families through as many of the trials and tribulations of dealing with childhood cancer as possible. They provide snack baskets at the clinic for the children to eat when they’re at the hospital all day. $300 provides a snack basket for a month.
They also provide $25 gas cards, an invaluable tool with today’s gas prices. When Thalon was in treatment, we drove everywhere five days a week. We live in the middle of town and we drove to all the extremes for the different therapies, pool, physical, occupational, chemo, speech, etc. Insurance required only 1 therapy a day so the five days a week is no exaggeration. Gas was a nightmare.
Candlelighters also supports the Ronald McDonald house and Family Room in the Children’s Hospital. They provide food to families suddenly moved in for a week or more. Laundry services. Beds to sleep in. Comfortable areas to sit and try to feel at home.
I can’t say enough how proud I am of my kid. She’s done such a great job. Put her heart and soul into these poems.
It just sneaks up from no where some times. Everything is going well and life is productive, then suddenly a day comes when there’s not much more than basic living that I can manage. Frustrating and disappointing when it impacts goals and plans, but it is what it is.
I finished the the opening scene yesterday. Now I know the changes I need to revise it and build from there. It was one of those mornings when I was able to wake up at 5 am and get a lot done.
Today was not one of those days. I woke up way late and haven’t begun, yet, but I wanted to post progress for yesterday’s work.
Oh, and last night? We watched War of the Roses, On Demand. I love the free movies. Many of which I’d forgotten were ever made, or never had a chance to watch. Craig had no interest in War of the Roses for a long time, but I tell you what. Just watching it he laughed so hard seeing some of the things Kathleen Turner and Michael Douglas did to each other.
Kathleen Turner is one of the most beautiful actresses I’ve ever seen. And Miracle Child has developed an interesting fondness in Michael since I showed her Romancing the Stone. She thinks he’s hot. lol Him and Bruce Willis. I can’t disagree about Bruce. I think bald is beautiful. lol
Another beautiful actress is Michelle Pfeifer. And her handsome hero, Jack Nicholson, in Wolf. I’d never seen it before, but it was great to see a werewolf film done so well. And the insights to publishing…well. True or not, that was cool. I wish I was a “cool” looking author like Maude. Dressed in black and silver with hair to match. Wow. lol
All in all, not a bad day. Which is so good. It was Miracle Child’s 3 yr anniv since her last chemo treatment. I know, how cruel to do that on April Fool’s Day, but in all honesty, most holidays have a whole new meaning now.
Have a great day!
Wish me luck. I’m jumping further into book 3. Book 2 has been retitled Cursed. It’s about Alex and his high school sweetheart, who’s a bit more than the girl next door.
I’ve been awaiting revisions on Cursed and reading The Anatomy of Story by John Truby while letting book 3 bloom in my mind. It’s titled in the same vein as the other two: Damned. I’ve had so much fun with that. My writing plan is The Damned Plan. I refer to it as that Damned book. It makes me giggle.
I’m starting fresh. Lots of notes written on a story that’s been in my head a good long while, but only the first 750 words are written. It feels good.
Sometimes it seems the day blows by so fast and I was barely able to keep up with the absolute necessities. I stayed up late Tues night working on my website. Last night, while dh watched Blood Diamond- which turned out to be a really good movie – I typed up my youngest daughter’s poems. We’re having two copies bound and one donated to the Candlelighter’s dinner auction at the end of April. She’s very excited.
So, I did that, then we went to bed and I did something I knew was a mistake, but I couldn’t stop myself. Craig brought home from Borders, Predatory Game by Christine Feehan. My husband loves me. *twinkle*
I began that and I gotta say, it didn’t take long to fall in love with Jess Calhoun. Of course, being wheelchair bound myself, I keep reading about his awesome strength and workout regimen and thinking, hell, I know exercise is good for me. Why don’t I do more of it?
Then I try to imagine fitting it into my schedule with my fatigue levels. I have therapy twice a week and right now they are getting me to walk with Swedish Knee Cages so I don’t hyper extend. It’s been a couple of years since I walked so much. If I devoted each day for a month or so to working out, I’d be doing really good.
Instead, I am devoted to sitting in my recliner and writing on book 3. And having a very hard time regretting it. lol
It feels so wonderful to have my website back again! I’ve spent the last several hours working on the content of several pages. I’ll be adding more soon. At the moment, I’ll be happy to see links working.
As I was working, I came across a discussion of the “rule” for happily ever after in romance. As usual, there were the typical derogatory remarks about how nothing is real in a romance and it’s all about the hot bods and the eroticism. Why, oh why, does the hero and heroine have to walk off into the sunset? Why can’t one of them die? Why can’t the reader experience the “real” emotions of pain and anguish?
Why are pain and anguish the only “real” emotions? What is the point of reading about people who fail to realize their dreams and never rise above the adversity in their lives and relationships? How many people would enjoy reading a mystery that was never solved? Unsolved Mysteries, certainly, but in the mystery genre? How many people would watch CSI if they never solved a case? Or House if he never managed to heal someone? How big would Stephen King have gotten in the thriller genre if his books didn’t thrill?
Yes, Gone With the Wind was beautiful in it’s tragedy. Many books are. If you want to feel haunted and sad and hopeless about fulfilling certain dreams, tragedy is certainly the market for you. But there are other “real” emotions to surround yourself with. Hope, fulfillment, optimism, love.
How many people do you know that are on anti-depressants? I have my own. It’s called a romance novel. If I see two people struggling to be together and I read through hundreds of pages about it, then they should end together or what was the point of reading about their struggle? If one of them dies, then there should be a reason why they have to be dead, that makes sense, or what was the point of killing them?
Mark Twain said “Truth is stranger than fiction. Fiction has to make sense.” The same with death in fiction. We use stories to understand life, to influence our feelings, enhance our thoughts. Real life is not just about the negative, the depressing or the tragic. Real life is also about happiness and peace and joy.
Personally, I think a good romance mixes the pain and the joy and ends up with the best representation of real life there is. It’s not all sex, hot bods and eroticism. There is some – of course! Who wants to live without ever having sex or close intimacy with another person? A monk or a nun, and that’s about it. But the point is the relationship! The thought that with work and perseverance, we can have a close, lasting bond with another person.
And after hundreds of pages of working and persevering, if we make it work, why is that so horrible?
I think something touched a nerve. What do you think about the HEA in romance? Post in the comments over the next few days and I’ll be drawing one lucky person to win an autographed copy of Betrayed!
I want thank you for all your support and faith in Jamie’s writing. It has paid off fully. Today’s party went great. We sold a total of 71 copies of Betrayed! I cannot even express how proud of my beautiful wife I am!! She has worked so Hard and come so Far. Hopefully the next book will not be as hard or time consuming for her (or me) LOL. My manager said this was the best signing the store has ever had. Even though the vast majority was family and they wanted their copies for free, they still bought some.
Jamie will be in touch when she has recovered some.
Thanks again, Craig