Wednesday, January 4, 2012

2012 Resolved: To Speak of the Unspeakable

The Unspeakable Bits; From A Life With MS

My name is Trevis Gleason and I live with multiple sclerosis.

For the past decade, I’ve lived with my diagnosis; for the past 25 years (probably) I’ve lived with symptoms of MS. For nearly seven years now, I’ve been the nominal leader of a community of people living with this disease through pages of the Life With MS Blog at EverydayHealth.com.

One thing I’ve read and heard over and over (and over) from people on my blog and when I speak to groups about MS is, “I thought I was the only one” or “I felt so alone…” These comments particularly come up when we converse about some of the ‘stuff’ about MS that people don’t talk about in polite company.

I am honored and humbled that the National Multiple Sclerosis Society has asked me to, on a monthly basis, address some of those dark-corner conversations and fearful topics in the coming year.

In these cyber pages, we intend to open up the doors which have long been closed (by society, by our families and – quite frankly – by many of us living with MS) to discussion. This evolution is not intended to be a grandstand for the doomsday set – quite the opposite. I have always felt that information is the counter to fear and that with knowledge – even knowledge of the nasty bits – I can make decisions for myself and my family that are based on sound reasoning.

By peeling away the layers of mist and fog and politeness, we hope to see the scariest parts of living with multiple sclerosis for what they are; possibilities from which we should not hide and about which I’ve felt better once I’ve acknowledged them.

In a world where the internet will get you answers to every question under the sun (and a certain percentage of those answers might actually be factual. . .) I applaud the Society for offering us the space to discuss the scariest questions about MS.

We have some basic starting points in mind for these discussions. If, however, there is one thing I have learned through my years of blogging it is that when we open these things up to the community we end up with a far richer conversation. To that end, I’d like to take this opportunity to ask you – the readers of The Unspeakable Bits – what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?

Will there be information in these pages that you might rather not read about? Likely. Do I intend to candy-coat any of the topics? Not A Chance. We owe it to ourselves to be honest.

Oh, by the way, I have also been told I’ve a bit of a “dark” sense of humor when dealing with these things in my own life. Were I you, I’d expect a bit of that to come across in these pages as well. I guess that it’s just how I cope…

People who live with MS are some of the strongest people I’ve ever met.  I believe that by linking arms with one another and around the facts, we can raft ourselves together and survive the MS storm far more effectively than by swimming alone against a sea of rumors and half truths.

To this end, we will begin our conversations next month – the month which will see us acknowledging/celebrating Valentine’s Day – by discussing one of the most joyous parts of human life, but an element of life which MS has changed for many of us with this demandable disease.

Our next blog will open the bedroom doors to a conversation about Sex & MS.

What other taboo topics – what other “Unspeakable Bits” – would you like to see opened for conversation in these pages over the next months?

Wishing you and your family the best of health (and a Happy New Year!)

Cheers,

Trevis



You can follow Trevis via his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.


17 comments:

  1. Looking forward to your unspeakable bits and wit!

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  2. I would like to participate in this coversation. I look forward to the opportunity

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  3. Hi Trevis,
    As a teacher my greatest fear was cognitive decline. I have what they've called benign RRMS, and it is known for its invisible symptoms: cognitive decline, fatigue, and depression.

    With brain atrophy, innumerable brain lesions, some black holes, and spine and neck lesions, I have very few physical symptoms to speak of. Doctors who see my MRIs before they see me expect to see a very old, disabled patient. I am, to them, an enigma. And so that is the title of my recently released book at Amazon: Multiple Sclerosis, an Enigma. I miss my short term memory the most!

    Maybe you'll consider including the taboo of a teacher (or a doctor, or a lawyer, or a writer) with cognitive decline?

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  4. What a great topic to tackle. As a society we often keep to ourselves many issues that one feels is not fit for social discussion. Not only do I have MS but last year I nearly died as a result of a bowel perforation. This resulted in a colostomy in order to save my life. Talk about "unspeakable"! I was never ashamed of the colostomy and spoke openly of it all the time. Some of us may remember when we were embarrassed to say the word Cancer. I look forward to an open discussion of those unspeakable issues associated with MS. Blog on!

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  5. Great service. Highly needed. I look forward to following your posts.
    Judy

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  6. Things that come to mind right at the top are constipation -- how's that for a dirty term -- and the suggestion that if I just change my attitude, things will get better. Perhaps that's true, but it annoys me no end. Look forward to it. - HJW

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  7. I am so glad you are doing this Trevis. Another taboo topic is those who leave/divorce their spouses because they have MS and have become disabled. I am so looking forward to these conversations and getting "Real" about just what MS is doing to our bodies and lives. Count me in.
    Thanks, Carmella

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  8. I enjoyed your introduction and I am looking forward to reading about the "unspeakable bits." Starting the discussion with "Sex and MS," a subject that is a "taboo" for many people, not just those of us with MS. Hmm, do I have any suggestions to offer? I've been dealing with cognitive issues since 2008. It isn't "invisible" and it makes me feel stupid. Vision impairments caused by MS.. similar to other conditions, but different. I'm going to watch and learn before I throw anything else out there. Thank you so much, Trevis, for all that you do.
    Kindest regards to everyone!
    Macia Davidson

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  9. Trevis, Maybe something about the delicate balance of symptom management and medicine addictions? Thank you for all you do!

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  10. Think you can talk about the snake oil salesmen (and women) that are much too eager to separate people with MS from their hard-earned and much needed money by promoting cures and improved QOL by following their methods and buying their products? Just a thought. Welcome to the MS blog world.

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  11. Cognitive decline for sure... Please have a discussion about that. I too have what the doctor calls benign symptoms because I am not physically impaired. I need quiet to be able to think.....this can cause family life problems and is hard to describe how tired and frustrated I get trying to perform any task. Can't seem to get people to understand how jumbled I feel.

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    1. I agree. I blogged about this. Why is it so difficult for my family to understand that I cannot have a conversation with you while the TV is on AND someone is sitting next to me talking on the phone? My brain shuts down completely.
      I can't wait for this blog to go live! Thank you Trevis! Maybe we could also talk about those of us who have soiled our pants or the creative ways we avoided it. No one wants to know that sometimes, "oops I crapped my pants!" ;)

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  12. One issue I would love to see discussed is how to deal with employment issues with a "silent disability." I've had several encounters where my fatigue and cognitive challenges have required accommodation from employers, schools, etc. There has been several issues with supervisors, teachers, co-workers, and fellow students who cannot understand why I get "special treatment" and "extra days off." Can you discuss the inherent prejudices against those of us with silent disabilities in a country characterized by its value of independence, self-reliance, and hard work? I'm interested to see what others have encountered, and any advice they can share...

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    1. Excellent idea for a discussion, Gaila. I taught for thirty years, and was within two years of retiring with a maximum pension; MS fatigue, both physical and cognitive, ended my career last June. There are no realistic accommodations for a TEACHER with cognitive fatigue. And there is no SSDI for teachers, as we are not allowed to contribute to SSA, because we have a self-funded pension (giving 11% of our salary each month.) SSDI would not match my thirty year pension anyway, but if I were younger, or diagnosed earlier, without enough years for a pension, I would have been up the proverbial creek.

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  13. I have just found this blog and am so looking forward to following you Trevis. Glad you are hitting the topic of sex and MS. Another "unspeakable bit" that I would like to hear your thoughts on is loss of bladder and bowel control. Talk about shame....

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  14. Cognitive issues and depression. Why is it so hard for family members and friends to understand you are still the same person? How about the fear that you'll be given up for "crazy" and institutionalized? How about the guilt when you think of how your uneven moods and abilities have affected your children? I was diagnosed 28 years ago. My MS had always been recessive until about five years ago when it became progressive WITHOUT ME KNOWING ABOUT IT. I was clinically depressed and trying to "cheer myself up" while unknowingly alienating my spouse as a result of cognitive MS. When I finally got help - a guilt-laden social taboo for my generation - I became balanced again. But what part of the brain will be next and - will I know about it?

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  15. I'm really interested to see what you're going to have to say about the unpleasant and downright nasty parts of MS that are so bad we can't even talk about them. As I'm sure you don't by now I have a Potty Mouth sense of humor and so I will definitely be chiming in with my shitty little comments. Thank you Trevis for posting the ugliest parts of a truly ugly disease.
    http://www.thepottymouthbook.com/

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