Staggering the Line

The line I stagger, the line many people with relapsing-remitting multiple sclerosis (RRMS) stagger, walk, or straddle, wavers over time, from time to time. It jumps, rolls. It scribbles.

Line 1

In the exam room, we walk the line, heel-toe, if we can. When we can. The line does not reveal itself, nor does it reveal the effort exerted to trace its trajectory. We imagine the line there before us, a tightrope. Someone is usually there to catch us, white sleeved safety net, in case we stumble.

Line 2

The line divides. Some say the line defines us. On one side we are disabled. On the other, we are able-bodied. What is seldom recognized is that for people with RRMS, that line is hard to locate. I’ve sent out search parties, but none have returned. Meanwhile, the arch of my left foot absorbs the line and holds it as numbness. At such moments, the line reminds me of its potential to push me one way or another.

Or is the line ever-permeable, a barrier that absorbs qualities from either side? Quite possibly, this is where I live. It has its comforts.

Line 3

The line wants to determine our needs. If symptom y is x, then treatment z is needed. I never know when. At what point, for instance, are steroids needed? The line determines certain treatments to be necessary even if you haven’t crossed the line. In this regard, the line categorizes us all as one. Take your medicine, the line says, regardless of symptom. For some, its necessity is hard to believe. It might be easier to understand, in time. Some say the treatment’s worse than the medicine. I’ve been there. But there are many medicines now, says the line, encouragingly. The line reminds us of illness, but the line reminds us of life. These are not opposites.

Line 4

The line says keep moving along, as long as possible. The line claims to be infinite. Sometimes the line says cane or it says walker. The line says wheels and chair. The line tries to measure necessary assistance, who needs what and for how long. The line told me long ago, “You don’t need recordings for the blind. This is temporary.” Just how temporary, the line never divulges. The line has also told me, “You don’t need a scooter. Think of the money. You can still muddle through in the heat.” During the year I couldn’t drive, I thought of installing hand controls in my car, but never did. Seven years later, my hand quit, crossed the line.

Where is the equation measuring the bisecting lines of need and time? If we had one, would we trust it? Would it know us?

Line 5

If I lay all my canes on the floor tip to tip, they form a single line. The walker, the chair, are intricate, sturdy sets of lines. The wheel, if you unpeel it, is an unending line. Harmless. These lines can be stronger than any dividing line.

Have you ever seen through a line? After MS affected my vision, I wore bifocals for a while to help me read. My gaze often rested on the line between the upper (distance) and lower (near) portions of the lens. This beveled edge blurred and burned as it caught light, too painful, but also a reminder of my recovery. As though near and far folded in on themselves, the line diminished any difference or division, any clarity, leaving only an indefinable haze for a moment, until I turned my gaze elsewhere.

The other day, in line at the post office, I was instructed to tape my own package. The dispenser was heavy and cumbersome. Instead of a straight line, the tape came out folded or crinkled, its “Priority Mail” inscrutable. How could I tell the clerk that I needed help when I appeared fully able? I crumpled the tape I couldn’t use into a large tangled ball, and kept trying to get the lines straight.

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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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    23 Comments

  • Eddie S.   Aug 6, 2014 11:32 AM
    Great article...might add:
    Line 7. When fear of showing weakness causes me to reject the help to walk the line and drives away people who will help and carry you down the line.
    Line 8 When the fear from the fatigue,stress and the unknown causes rage to drive one OFF line
  • Avatar
    marshina  Aug 6, 2014 12:10 PM
    Beautifully written, Laurie. Stay out of the heat the best u can. Use whatever helps. I put hand controls in my car and a lift for my scooter. The next car I realized I didn't need the controls or the lift. This is a go with the flow and adapt disease.
  • Lori   Aug 6, 2014 2:07 PM
    We all do what we have to do. Some days are harder than others. I think the hardest part for me is that most of us don't look sick. I agree with Marshina, MS is a go with the flow & adapt disease. One day at a time, that's how I'm rolling :)
  • Jenifer   Aug 6, 2014 2:24 PM
    As a women Dx with MS in 2003, I am so glad Someone, said it in a way that others can understand!!! Thank You SO much
  • taylorl  Aug 6, 2014 2:32 PM
    Thank you Laurie. I have been having a bad day and you lifted my spirits. Everyone says that I look wonderful and do not expect me to be frustrated or hurt. You said it beautifully.
  • Lori Kiker   Aug 6, 2014 2:59 PM
    Laurie you write what we feel so elegantly so others can understand. Keep up the good work.

    Thanks,
    LORI
  • Annie   Aug 6, 2014 3:02 PM
    If only I could capture the feelings/thoughts as well...
    Thank you Laurie!
  • Dwana Hill   Aug 6, 2014 3:21 PM
    Great article.. I always get the remark you don't look sick. I use my cane now all the time to help with balance issues and to hang on to something.
  • Avatar
    bbawake  Aug 6, 2014 3:26 PM
    So true. I also write to process this life called MS
  • Becky D.   Aug 6, 2014 4:48 PM
    I now see a neru who doesn't ask me to walk a line or time how long it takes me to walk down a hallway. He doesn't prick me with a pin, either. We talk and he he asks me, "how are you doing?"
    This change in care was really good for my spirits and that's half the battle.
  • Avatar
    cindygere  Aug 6, 2014 5:46 PM
    Though I have had MS for some time, diagnosed in 1997, and I am 52 yrs old. In the beginning had multiple things that Happened. Dizziness, cross eyed for over a year, Spasms.... I have done pretty good for years now. I have tremors, fatigue and other issues I have come to know as apart of me. But for the last month I have been having tingle in my face, legs feel like jello, feelings of heat on my ears, neck, down my shoulders and chest. My doctor ordered MRI. Results showed no new or active lesions. I went to the ER yesterday thinking ok well maybe I having a heart attack but thank God I wasn't. They said was stressing too much. I accepted that. Today same thing was happening to me. I see my doctor tomorrow. I know my body and I know I am having MS issues. I don't know how to tell my doctor that it's NOT all in my head. It has been very hot here in Boise, I'd. And I love gardening but I have been taking it easy. Any advise will be greatly appreciated.
  • Bindol61   Aug 6, 2014 6:12 PM
    As always, you've said it so well.
  • Shannon Leigh Podobnik   Aug 6, 2014 8:25 PM
    Very powerfulling stories, Me Diganoised Nov. 2012 3 Days before my 32nd Birthday. Was told I would be wheel chair bound & or Bed ridden if my ins. Did not kick in when it did. Was told I would have to use a cane. All of my Drs. Made me practice walking with a cane. I just laughed & said you can't be serious???....... I am stronger than this. Too make a very lonnnggggg story short I get my monthly infusions, No walker, wheel chair, or Cane, I am me I am stronger than this invisible disease. I live for my Daughter & Husband fight everyday I stay & look normal as possible. But the most important thing is staying positive & just looking forward to another day...... God Bless whom every will read this along their way. God & Jesus will do miracles when you don't even realize it. We got this disease because we are strong powerful people God knew we could take it on that we are strong enough. He had to give this to someone. He just wanted to give us another challenge to keep us on our toes. Lol..... Thats how I look at things now. I look for the positive & not the negative. Stress will tear you apart & eat you alive faster than a real disease sometimes. Take care Everyone & Always Smile no matter what you maybe going through. God Bless!!!
  • martyne   Aug 7, 2014 4:48 AM
    I simply want to thank you all for sharing.There is not a support group available to me in person, but you are one to me this morning!
  • martyne   Aug 7, 2014 4:48 AM
    I simply want to thank you all for sharing.There is not a support group available to me in person, but you are one to me this morning!
  • annmarie   Aug 7, 2014 7:13 AM
    Each day we must try, try,try. Do not give up. Life is too short, so much to live for. I just became a new grandma of twins. God is good. Being strong is the secret. Sometimes, that is harder to hear. I have a mild case of MS 27 years, thank God not too serious.
  • Alejandro Garcia   Aug 7, 2014 7:56 AM
    Great article! I was diagnosed 06/2014. Already in a wheelchair, in recovery with pt and prayers. I feel safe to say my rrms is quite aggressive. The article is very well written and very inspirational, thank you!
  • Avatar
    refusetoquit  Aug 7, 2014 10:30 AM
    Such a stripped down volnerable writing of 'the line' in many aspect's of MS. Laurie, I thank you for bringing MY line front and center today.........exercise........to keep from 'crossing over', it need's to be done daily in some way. You put a 'jump' to my 'step', figuativly.
  • Dottie B   Aug 8, 2014 1:32 PM
    Great read, thanks. I'm rrms for 17? years. Dr. at Yale at that time said I'd be in a wheelchair within 10 years. I currently walk 2-3 miles a day. The doctors don't know what each of us can accomplish or withstand.
  • Teresa Clinton   Aug 14, 2014 6:05 PM
    My husband was diagnosis last July 22. The day after his 56 birthday. He has termors,double vision, walks with a cane, depression, lots of pain in his leg. This has been a roller coaster ride. I was glad to see some positive comments. Thank you and God bless you each and everyone. Praying for a cure.
  • Avatar
    mzwort  Aug 15, 2014 12:26 PM
    Beautiful. Thank you.
  • capitolcarol   Sep 3, 2014 2:27 PM
    Thank you for a great article. I have all these terrible symtpoms and try not to let them get to me. I want to try in some way to be in control. I try to exercise every day, as well as trying to walk a little bit each day. I walk not in a straight line by more like Herman Munster staggering along, but at least it is something. I am so glad to read others' comments and know that I am not alone.
  • Cindy   Sep 18, 2014 11:27 PM
    Hi Laurie - I am a junior in high school and am currently working on a project in my Anatomy class. Each student gets "diagnosed" with a chronic condition, and so for the next three months, I will be doing research on what it is like to be living with Multiple Sclerosis and how to deal with the physical and emotional aspects of it. First of all, I just want to let you know that I am so inspired by how strong you are with dealing with everything and I really hope you are doing well despite everything that has happened.

    I was wondering if I could ask you some questions about MS and how things have changed since your diagnosis. My questions are below and I am looking forward to hearing from you! Sorry in advance if some of my questions are too personal; it is okay if you do not feel comfortable sharing.

    1. Aside from the relapses, how has MS affected your daily routine? Are there activities that you cannot do anymore because of MS?

    2. What kinds of nutritions do you have to look out for? Has MS affected your diet?

    3. How long do the relapses usually last for? If on medication/therapy, will relapses never occur?

    4. How has your physical and emotional state changed since your diagnosis?

    5. Have your life goals changed throughout these past few years? Has MS affected these goals and if so, in what way?

    Thank you so much for your time,
    Cindy