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Multiple Sclerosis (MS) is widely thought to be a disease of immune dysfunction, whereby the immune system becomes activated to attack components of the nerves in the brain, spinal cord and optic nerve. New information about environmental factors and lifestyle are giving persons with MS and their health care providers new tools...

The post Living with multiple sclerosis appeared first on OUPblog.

Esther Ehrlich’s debut novel, Nest, is an arresting story of an eleven-year-old girl named Chirp Orenstein, whose life becomes acutely sharp and complicated as her mother’s illness overtakes the family

Readers will instantly fall in love with Maggie. Her narrative voice is smart, funny and clever, which makes her a highly entertaining, endearing, complex, triple threat.

I rarely talk about my disability here, because really, who wants to talk about that ugly word? It suggests that we CANNOT. Others have decided to label me “disabled,” not me. From the parking spaces I gladly pull into (who doesn’t want to be right by the front door?), to the forms I fill out, I’m reminded of this label constantly. I accept this label but this label doesn’t define me. It’s the last ingredient in the complex recipe that is me. It’s there, but it’s not important. My cake will rise without it. (Oh boy, that’s corny. But hey, that’s me.)

Me and my cane with the “Good Luck Cow” in Brandon, Vermont, May 2014.

Multiple Sclerosis hit me in late 2009, just as my career was catching fire (excuse the blatant allusion to Suzanne Collins). In fact, when I was being interviewed by literary agents, I was on an anti-anxiety medication that made my anxiety WORSE, although it took my doctors and me a few weeks to realize this. I took the medication before bed and then couldn’t even speak in the morning until it wore off, around 11am or so. That’s right, I was so full of worry that I could barely force my voice into a whisper. Yet an agent, excited about my submission, called me 90 minutes earlier than our agreed-upon noon conference call. I had to suck it up and somehow appear brilliant and enthusiastic. I don’t know how I made it through that call.

The year 2010 was a blur. I don’t remember most of it. I know I signed with my agent and received my first book deal for THE MONSTORE, but it barely registered. All I could think about was that I would never walk properly again, that I would never figure skate again, never play tennis again, never take family hiking vacations. I couldn’t even drive a car. I couldn’t pick my children up from school, which was only 2/10 of a mile from my home. I focused on the COULDN’Ts. There seemed to be an avalanche of them.

What finally pulled me out of my funk? Was it reaching the elusive goal of publication?

Sure, that helped. But this lifelong goal realized had little to do with my recovery.

Time did. And so often, this is not what people in crisis want to hear. They think there is some magical solution to get through the hard times. And sorry, but I don’t have one. I just had time. And the great thing about time is that EVERYONE has it. It’s available to anyone who’s going through a rough patch.

I had time to process what had happened to me. Time to understand how my body had changed. Time to make adjustments in my daily life. Time to realize that the inner core of ME hadn’t been altered. I was the same goofy, bookish, creative, foodie, writer and loving wife and mother. Albeit with a cane and a mobility scooter. Big freakin’ deal!

Time also made me realize how much time I had missed. I never wanted another “lost year” in my life. All that worrying didn’t solve anything. Worrying rarely does. It makes you miss out on the here and now. The present is so precious. I didn’t want to miss another second of it.

So I got back to being ME. I started writing again. I sold more manuscripts. I began teaching and speaking at conferences. The word “adapt” became my mantra. I learned that I COULD do all that I intended, just with preparation and adjustment.

I’m here to tell you all that you can indeed reach your goals. You’re in charge. If you encounter a roadblock, it is only a temporary one. You will find a way around it. It may take time, but try to see time as a gift rather than a burden. We authors know that it takes years to get published and years to see our books in print. We eventually learn to accept time, as time brings great things.

The only way you won’t reach your goals is by quitting. (Or by excessive worrying.) Envision success, not failure. Focus on the elements within your control, not those beyond it.

Go ahead, make a list. What can you control? What can you NOT control? Then rip the paper in half and throw away the “beyond” section. (There’s a reason I made that section black.)

Today I’m happier than I’ve ever been, even though I can only walk the length of my driveway before needing to sit.

So guess what? I sit.

And then I get up—time and time again.

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Tara speaks to audiences big and small about overcoming disabilities big and small. Contact her at tarawrites (at) yahoo (dot) com for more information.

We interrupt the regular bookish nonsense for a brief post on MS Awareness Week.

As you may know, my beloved Bookman was diagnosed with Multiple Sclerosis in 2005. I’ve been posting about MS Awareness week since 2006. This year I have been hemming and hawing and almost hawed myself out of posting about it not because things have been bad, far from it, but because of fatigue.

Nine years with MS and Bookman is doing really well. He has no new symptoms and things go on in a not-getting-worse kind of way. There are good days and bad days, but having settled into a sort of normalcy of living with a chronic illness one gets used to it but also tired of it. Tired of thinking about it, tired of talking about it, tired of hearing about it, tired of cheerleading and fundraisers and awareness weeks. And certainly one gets tired of living with it.

And that’s why I finally decided to post for Awareness Week. Because while Bookman isn’t getting worse, he also is not getting better. There is still no cure. Scientists still don’t know what causes MS. There have been some interesting discoveries over the past year that might eventually lead to treatment therapies that could, if not cure the disease, at least repair some of the neurological damage and keep it from getting worse. The time it takes for these things to develop means it could be years or a decade or more and for people who have an unpredictable chronic disease that is a really long time. My being tired of all of it is nothing compared to how Bookman and millions of others who actually have MS feel.

Bookman has benefited from one development over the past year. Prior to spring of 2013 there were no oral MS medications and Bookman had to give himself a daily injection. Now there are not one, but two oral medications. Bookman started taking one of them in May and so far so good. No major side effects and since he hasn’t had any relapses we assume the medication is working as well as his injectable medication did but it will be awhile before we know for sure. It was a bit disconcerting when he first started the oral medication to hear is neurologist say, “well we’ll know in a few years whether or not it works.” We’ll know it is working if he doesn’t have a relapse and he has a couple MRIs that come back showing no new myelin damage. In the meantime my skinny husband is grateful he no longer needs my help to squeeze up some imaginary fat on the back of his arms for an injection. And we both happily watch the years of injection site scars slowly fade from his arms, hips, legs and stomach.

We remain grateful for health insurance and his good general health. But not a day goes by that we don’t both look at our framed broadside of Jane Kenyon’s poem and know that one day it might be otherwise.

I’ll go off the topic of children’s book art — just for today. You might have noticed that the blog has been left with the lights still on, but untended in recent months. Not a lot of discussion about illustration, drawing or painting has been going on here.  I want to explain, rationalize and ask your [...]

A family gathering in my grandparent's backyard. My Aunt Jean is 2nd from left. Uncle John is taking the picture. (Oh, and I'm the little squirt on the right)


My 94-year-old uncle died on Feb. 20. My aunt died twelve days later. She was 90. They were a remarkable couple. Uncle John was my dad's brother―the middle child among three sons. My Aunt Jean and he spent much of their adult years in Chicago.

Although life was good, not long after they were married, Jean was diagnosed with Multiple Sclerosis; a potentially devastating disease, especially for a young mother raising three young children. But, it didn't stop either of them. My uncle set out to get her the best care possible, and she faithfully exercised (swimming daily) through the pain. It was years before she was forced to give up her cane for a walker and eventually, a wheel chair.

Still, they took all life had to offer; traveling the world and, after retirement, moving to California to build their dream house, complete with amazing ocean view. Their time in the new home would be short-lived, however, when my aunt began to deteriorate and had to move into a complete care facility. My uncle visited her every day until his failing health prevented it. But, whenever possible he still took her to church and out to dinner on Sundays.

The completion of their journey begins and ends in early February when my aunt, whose 65-year struggle with MS finally caught up with her, was rushed to the hospital. "She only has days to live," the doctor told the family. The family believes it was then that John decided it was "time for him to go;" his caregiver days over. But, Jean surprised everyone; family and doctors alike, and left the hospital in good spirits. My uncle's path was, however, irreversible and he simply "went to sleep" a few days later sitting in his wheel chair.

The Friday before her death, Jean began to deteriorate, once again. But, just like before, on Saturday she rallied and smiled and talked to her daughter. On Sunday, a caregiver saw her pointing to John's picture, telling him, "I'm okay." Early Monday morning he came to get her.

And so, they are free. He from constant, frustrating battles with old age; she from the never-ending struggles with a disease that still has no cure in sight. No longer bound to wheelchairs, I like to picture the two of them dancing on clouds as my aunt tilts her head back and laughs…just the way I remember.

When Al Gore received the 2007 Nobel Peace Prize for his efforts to raise awareness about man-made climate change, his acceptance speech featured a new word, or rather a new sense of an old word, that Oxford lexicographers have been watching closely: carbon, in the sense of “carbon dioxide or other gaseous carbon compounds released into the atmosphere.” As I wrote back in July, this extended sense of carbon can be found in all sorts of novel lexical compounds: carbon-neutral (2006 New Oxford American Dictionary Word of the Year), carbon footprint, carbon tax, carbon trading, and so forth. In his speech, Gore introduced another compound into the mix: carbon summer.
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When carbon-neutral was named The New Oxford American Dictionary’s Word of the Year for 2006, the choice highlighted how recent efforts to combat climate change have brought forth a whole new class of carbon compounds (the lexical kind of compounds, not the chemical kind!). To be carbon-neutral, you can use a carbon calculator to estimate your household’s carbon footprint. Then you can seek to reduce your own carbon emissions, or you can purchase carbon offsets or carbon credits. Countries can institute carbon taxes, while eco-conscious companies can engage in carbon trading on the carbon market. And maybe someday, if we’re all low-carbon or even zero-carbon, we can live in a post-carbon world.

Putting aside the politics of the global warming debate, lexicographers are particularly interested in how the usage of the word carbon has been expanding in recent years. Not everyone is happy about the carbon boom. Salon’s advice columnist Cary Tennis recently fielded a letter from “Bothered by Bad Buzzwords,” who complained that carbon-neutral and related terms misuse the word carbon. “What I don’t understand is why no one is calling the concept correctly,” the letter-writer grumbled. “Carbon is not carbon dioxide! One is a black solid. One is an odorless, colorless gas. Couldn’t they call it CO₂ neutral?” (more…)

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