Never Say Never

“I could never do that” is a phrase with which I have become closely acquainted, at times uttered by devoted friends and family in response to the limitations multiple sclerosis has placed on my activities and spaces—giving myself injections, receiving IV steroids, quitting reading, avoiding stairs, cutting back on work, avoiding heat . . . “I could never” is an unintended barb, like a burr that gets caught on a cat’s fur and burrows deeper. But when that burr nestles into my thoughts, prickling my mind when I least expect it, I turn it over and over, tangling everything. I come up with arguments against it, nobody listening but myself: MS is not a choice but something that happens in my body, so there is no way to live differently than to change the spaces I live in, the way I read, exercise and work.
 
If someone were to say to me, as people have, “I could never be a vegetarian,” which I am, I would understand. It’s a choice. The fact of MS, however, is not up to you. How you respond to it, though, is. My response has generally been to take my medicine and listen to my body, and to alter my life accordingly.
 
And here I go, turning the burr a little deeper.  
 
“You see, I could never do that. I love reading too much,” was a friend’s response when I told her how the optic neuritis (ON) I experienced at the end of my PhD coursework necessitated that I stop reading for a year. I couldn’t read most print, and even large print was challenging and caused pain.
 
During that rough period with ON, I listened to audio books and people read to me. I learned a different way of paying attention, by ear rather than by eye. I retrained my brain. To this day, reading a long book still wears my eye out to the point of pain, and I limit my reading to print that is larger than what you find in most trade paperbacks.
 
Like my friend, I loved reading, too, and still find pleasure in books, but not the same books, and not in the same way. I find richness in the use of language found in shorter works with larger print, and if a small-print book is available as an e-book, all the better. I adjusted.
 
“I could never live in a house without stairs,” my mother-in-law once said. “I no longer can,” was my immediate thought, in response. I held my tongue. She didn’t intend any harm, after all. My living space has descended over time. I slid from two-story to single-story dwelling over the course of 10 years. There are 4 steps to climb with a rail to reach my porch, and someday that may also be too much. Further adjustments. Before more damage is done.
 
In order to endure Houston’s heat with MS, I need central air conditioning and rarely go outdoors in summer. I find myself thinking, “I could never live in a house with stairs. I could never live in a house without central A/C. Another kind of never, out of perceived impossibility rather than preference.
 
Sometimes, mercifully, impossibility withers. This summer my husband and I traveled to England to visit with his family, staying with his mother in her two-story home. There is no air conditioning; England is rarely warm enough to require it.  While we were there it was exceptionally warm, and there were stairs to climb: my two nevers. How would I endure both heat and stairs? I worried my MS symptoms would worsen. To my surprise, I learned the pleasure of dry outdoor breezes. I opened windows and doors. I cooled off in the sea. And my bum leg grew stronger from my slow, careful stair climbing. 
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Laurie

Laurie Clements Lambeth, Author

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com

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    15 Comments

  • emily toohey   Nov 20, 2013 4:35 PM
    I CAN REALLY RELATE TO THIS!
  • Tracy Morgan   Nov 20, 2013 4:42 PM
    I've been diagnosed with ms for about 5 years. Im 44years of age an I read your comments often. I'd like to know what medications you take that help you with your ms.
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    jackiebcentraltexas  Nov 20, 2013 4:43 PM
    There is something so final about the word never, we think so anyway but after living with myriad symptoms since 2007 and finally being diagnosed in late 2012 MS has also shown me never is not final but just means relearning behaviors we took for granted all of our lives before the disease changed things. I was diagnosed at age 50, now after a year of self injections with Copaxone, learning steps and stairs are no longer my friend and that this lifelong lover of the Texas sun needs to listen to my legs when hot outside and fatigue hits quicker. I am one of the lucky RRMS patients because my symptoms are now mild after a year and a half prior to diagnosis when ended up on a walker for 3 months and also knock wood so far no eye problems since cataracts removed in early 2011 in both eyes.

    Laurie here is to taking changes day by day and still giving thanks that we have options available to overcome a lot of the drawbacks of living with MS.
  • Jane   Nov 20, 2013 4:57 PM
    I had many "I could nevers" that have been shattered also. The biggest one would be I could never make such hard choices or unfavorable changes. But I have and I do and I hope that I can confront more nevers with some grace as you have.
  • Cathy Kinsey   Nov 20, 2013 5:30 PM
    I used to feel like this until LDN.org LowDoseNaltrexone.org please read about this and consider. I no longer feel a lot of the symptoms you discuss. Please feel free to contact me and good luck.
  • laura   Nov 20, 2013 7:13 PM
    thank you for your "never say never" blog. I was diagnosed this past may with ms and it is taking some getting used to. sometimes, I forget that I have it, but when I try to do my, what's normal to everyone else, tasks, I am yet reminded that I now have this illness that I didn't ask for. I try to take each day, one day at a time, and do what needs done, but at a slower pace. I take my daily injections, weekly doses of vitamin d, and with a home (with steps!) and children, I am exhausted and it gets frustrating. why did I have to get this disease, I ask myself. looking at the silver lining, well, it could be worse, I am only in the first stage and my "youth" is on my side, the illness being caught early. life is what you make it, we all have choices to make each day and I choose to not let this disease beat me. :)
  • Sue W.   Nov 20, 2013 7:49 PM
    A lovely bit of writing. Despite the difficult subject matter, it rolls effortlessly.
    Yes, I hear you. Constantly, I lose abilities and have to adjust. We have stairs, I just rarely go upstairs. And when I have to, I go up on hands and feet, never on just two feet. And I come down on my bum. I plan my day, allowing for a long rest after bathing (I can't shower, I can't stand that long and a shower chair means I need to tilt my head back to rinse my hair, and the vertigo is too bad), a long rest after every activity. I am very nearly housebound, it is all too exhausting, and doing too much doesn't just mean fatigue, it means pain.
    The abnormal becomes normal. It's just a new problem, necessitating a new way of thinking, a new way of dealing.
    And it could always be worse.
  • Gerri   Nov 20, 2013 8:09 PM
    So well said. My MS was diagnosed at the age of 45. However, I had been living with it since the age of 24, unknown and misdiagnosed by doctors, so I never gave in to my unknown "malady". You do what you have to do and live and let live.
  • fran   Nov 21, 2013 9:55 AM
    Can someone tell me what the side effects of those 3 days of steroids are (when your MS has a flair up). I know your immune system tanks because that's what steroids do, so- when it tanks do you get some OTHER illness in the interim?
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    Bobo  Nov 21, 2013 10:49 AM
    Thanks for the well written never burrs. Those times when MS puts a crimp into my plans are hard to adjust to, or maybe I'm just being stubborn. I hate asking others to change location for a lunch due to steps, and I have had to cancel plans due to heat or just plain old fatigue. Some things will remain in the never category for me, much as I'd enjoy a set of tennis, or carrying my grandson to his crib. I'm trying to look at the things I can do and push to do some others that are getting tough to do. Thank God for a caring spouse who accepts my days as they happen. Cheers.
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    A_J_  Nov 21, 2013 1:20 PM
    Love this blog! Touches on so many little things that turn into major challenges. When planning any outing it's always smart to check handicap accessibility, something I never dreamed of!
    The list is so long...I have not had to deal with ON...applaud your forthrightness anbd refusal to give up!
  • Leslie   Nov 21, 2013 8:27 PM
    This is one of the most beautifully written blog entries I have read in my entire life. Thank you, Laurie, for capturing our realities. Leslie
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    Quaker  Nov 22, 2013 9:52 AM
    Yes, having MS brings up some strange questions.
    Like when I had MS for over 10 years and still maintained my employment
    working in a federal prison. I was asked by one of my fellow employees :
    "How does one live and work so long with MS"?
    I responded: "Denial".

    In some ways denial ( I think), is one of the best ways to treat MS. Because if you think about it to much, it will consume you.
  • Lee   Nov 23, 2013 12:11 AM
    It makes me wonder, yes,
    what are people saying when they say, " I could never..."
    "I could never imagine..." I could never do that..."

    I think, "I could never..." is a testament
    to people's lack of imagination,
    no, I think people don't want to imagine
    and maybe I don't want them to imagine,
    because I fear (feel?) that generally what people imagine
    would be my less dynamic, much less complex,
    than my life.

    I think what people imagine is generally sadder than my life.
    I think what's wrong is that people tend to imagine the pain
    without the multiple large and little pleasures
    that pepper people's lives.

    I think if you could imagine, perhaps you would understand
    how important access to healthcare and good healthcare is.
    I think if you could imagine, you would be an activist.
    I think if you could imagine, you would see how messy
    and beautiful and complex and full of details are lives are--

    Perhaps you can imagine, if you listen well--
    and when you can imagine, just a pinch,
    you will want to change yourself, just a little,
    into the imagining sort.

    (I think also, some people say, I could not imagine,
    because they are trying to pat people on the backs for
    enduring what they endure--they cannot see the pleasures of being read to by a man who is rubbing your feet at the same time.

    They will never meet that great guy on the bus
    who will tell you Brooklyn stories from a time before you were born,
    and greet you with the same warm smile cold morning after cold morning.

    (Thanks for your writing, Laurie, those phrases that get under the skin. Burrs, yes...)
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    karamissy  Nov 28, 2013 10:51 PM
    wow! u inspired me..i am diagnosed w/ MS 11mons ago...i am looking for some advise and inspirational stories like yours for me to carry on and move forward,live happily despite of my illness...i want to be strong woman like you...may i request to be your facebook friend..thank you...