Falling Into Place

I recently asked myself, “Has using art to examine and share the effects of MS on my day-to-day life changed me?” The answer is an emphatic "Yes!"

I didn't start taking self-portraits until 20 years after being diagnosed with primary progressive MS in 1988. During those years, I managed to cope with my symptoms by simply getting on with my life. Of course, there were physical limitations I needed to respect. For instance, walking became very difficult – so I first used a cane, then a walker and finally in 2000, a mobility scooter. And gradually my hands became less and less able, curling in on themselves, and making it hard for me to hold onto objects without dropping them. I adapted by changing my primary art medium from drawing and painting to photography. I also avoided writing by hand as much as possible, preferring to use the computer. For the rest of it, I just figured dropping things on the floor was a fact of life, like it or not.

I stayed active and used any and every device to help me do so. My scooter gave me freedom, my wheelchair accessible minivan gave me wheels, and my can-do attitude kept me out there doing my thing. I flew with my scooter from Detroit to Beirut, Lebanon by myself in 2005. I was in and out of Washington, DC for years demonstrating on the streets for peace. In nine-and-a half years I put 89,000 miles on my accessible minivan, many thousands of those miles on solitary road trips.

What I wasn’t doing was paying attention to how I felt about being disabled, especially about identifying myself as a person with a disability. I joined no disability organizations, nor did I hang out with disabled people. When my neurologist retired in 1993, I never replaced him. I never used meds either – just did my best to stay healthy through exercise and diet. As I said earlier, I simply got on with my life.

Then in June 2008, I turned the camera on myself and started photographing every minute of my daily life. I thought I was doing it for other people, to show an inside view of life with a disability. I now know I was doing it for myself.

While working on this project I discovered there were two identities within myself. One was the photographer who insisted on seeing everything, and the other was the subject who did not want to be seen…especially in the act of falling or having to open containers with her teeth or needing to ask for help cutting up food or wetting her dress when she couldn’t get to the toilet in time.

But my photographer-self was relentless, so my subject-self acquiesced. Then something unexpected happened. The more I saw of my life – even what I considered the “shameful” bits - the more comfortable I became with the whole of it. And the more comfortable I became, the less separate my two identities became. For when my subject-self began to see my life through the eyes of the photographer, it looked not only interesting but beautiful.

By the time my self-portraits appeared online, in exhibits, and even in a book, I had come to accept not only the images, but myself as a person with a disability. And I began to see my body not as a stranger, but as a warrior, an ally, my best friend. Instead of turning against me, I realized my body was working incredibly hard to give me the life I wanted. And I expected a lot!

In essence, my artistic eye restored my self-esteem. Through creating these self-portraits I have learned to see beauty in every moment of my life, even the falls I dislike so much. Because beauty is truth, and I am finally facing up to the truth of my life with MS. While some may look for cures, I am now content to embrace my body exactly as it is...and be grateful.
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Patricia

Patricia Lay-Dorsey, Photographer

The book “Falling Into Place: self portraits” by Patricia Lay-Dorsey was published by Ffotogallery in November 2013. It can be ordered through Ftotogallery or purchased at the International Center of Photography in NYC.

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    21 Comments

  • Clive Whiteside   Feb 18, 2014 10:56 AM
    Hi Hope that this will do a lot to help make people aware of MS and of disability in general. Some times I think a picture is worth a thousands words as people often say.
    Thank you for taking the time to do this I have also shared this to a page on Facebook Tim the MS Bear that I use to make people aware of MS
  • Paul S   Feb 18, 2014 10:56 AM
    I know only to well how this creeps up on you, one day i can do a lot of things that other days are impossible......how ever the days of doing are becoming numbered. I have just recently been diagnosed as secondary progressive and to add to the fact i look after my father who has dementia and Alzheimer .
  • Bobbi   Feb 18, 2014 11:12 AM
    I am so excited to see this!!! There are SO many people in my life that judge me -- and they have no idea how hard daily life is for me. Maybe more people will understand...
  • Loraine   Feb 18, 2014 11:25 AM
    At last somebody speaking out for us all. just been diagnosed with MS after 5 years of being told it's just a virus causing all the symptoms. And sometimes the pain is overbearing, and makes me feel like all I ever do is moan. Well done Patricia you give me inspiration to continue my healthy lifestyle and to just accept my new challenge x
  • allison  Feb 18, 2014 11:34 AM
    Beautiful writing and beautiful pictures! Thank you for sharing, you make me inspired to deal with my bad days and carry on. Everyone has to keep their perspective on what life gives to be thankful for.
  • marsha   Feb 18, 2014 11:45 AM
    Bravo to you. I, too, have lived with this challenging disease for 40 plus years. My scooter is a life saver and allows me to get where I need to go. My mantra has always been, be grateful what you can still do and enjoy the fact we have memories of easier days.
  • Janine   Feb 18, 2014 12:19 PM
    I admire your spirit and positive attitude. I needed to read this article today. I'm recently having harder days with MS, so you have been an inspiration. Thank you!
  • Brenda Steinbach   Feb 18, 2014 12:50 PM
    Thank you,Patricia, for sharing your story. I have been living with MS for 40 years and through it all continued to exercise. I have gone to school to become a personal trainer and senior fitness specialist. I now am trying to build a personal training business and am targeting the MS market to encourage exercise!!!! I am so proud of you, Patricia!
  • Kathy   Feb 18, 2014 1:00 PM
    Patricia - you're in inspiration! I LOVE your story - and your attitude - and your strength. What a gift you gave to the world - and yourself - when you became your own subject. Thanks for being so generous with sharing your self. FUMS!
  • Kayla W.   Feb 18, 2014 1:45 PM
    Patricia, you are amazing in so many
    ways. Falling Into Place could absolutely
    not be mote
  • Kayla W.   Feb 18, 2014 1:45 PM
    Patricia, you are amazing in so many
    ways. Falling Into Place could absolutely
    not be mote
  • Kayla   Feb 18, 2014 1:59 PM
    I'm not good at this. Does it
    show? As I was saying the title
    could not be more appropos.
    As if the plans were made long
    before you even thought of
    it.
    Falling. I do some of that more likely
    losing my balance. I have
    more fatigue than anything.
    That can be so tough because
    people can't see it. Yet it is
    debilitating. I want to read your
    book.I will probably have fewer pity
    parties.
    God bless your book and
    God bless you.
  • Tami smith   Feb 18, 2014 4:05 PM
    Thank you! for sharing .
  • Patricia Lay-Dorsey   Feb 18, 2014 4:16 PM
    I am deeply touched by your response to my blog entry. It was for you that I created this body of work, so that you would feel seen and heard for who you are and how you live your life. Everyone has a challenge of one kind or another. The point is how we choose to deal with that challenge. My way involves creativity, yours might involve something completely different. The important thing is that we do the best we can with what we've got. And that we know we're not alone...
  • Mary Hagler   Feb 18, 2014 4:54 PM
    Patricua, thank you. My husband has suffered with progressive MS for the last 29 years. He was a television photojournalist and I was a newspaper photojournalist...I've not photographed our life seriously because I always detested other photogs who did the photo layouts on the disabled to enter contests etc. I'm now starting to photograph the daily struggles we face... He is bed fast and failing I'm in my late 60s and he just turned 50 and it is so hard to just do the day to day it's incredible . Your photography has inspired me to start documenting our life if only to
    Leave behind for relatives who always say oh just exercise more Ron or Mary he can't be that hard to care for .... You need to be working to get more income.... Seriously ! Keep on Patricia you are an inspiration !!!
  • Gerri Ballas   Feb 18, 2014 5:15 PM
    God bless you. I too have MS but now in remission. I applaud you for doing all that you do and making your life livable. You are truly an inspiration and more people need to hear your story.
  • Avatar
    woordh2003  Feb 18, 2014 6:11 PM
    Patricia. Thank you for an I spirational blog!!! I m with you all the way. Diagnosed 2 years ago, will not let MS stop me. Thank you for lifting me up!! Love Nancy








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  • Carolyn Cordon   Feb 18, 2014 7:27 PM
    What beautiful and strong words. Looking at oneself in an objective way like this, seeing the beauty and strength in what one can do are fantastic. Thank you for this, Taking life and making more of it is such a fine way to go. MS isn't fun, but it's not the end of fun either!
    http://mickjaneandme.wordpress.com/
  • Patricia Lay-Dorsey   Feb 18, 2014 8:24 PM
    Mary Hagler, if my photos can give you and Ron back a sense of yourselves as photojournalists then it is all worthwhile. Please don't imagine I have it all together either. I still have the moments I cry out in frustration and the chances I don't take because I get discouraged. In my eyes your caring for Ron is harder than dealing with MS yourself. At least when it's your own body you know from the inside how it feels. Whereas you must try to imagine what Ron is feeling and what he needs. Yes, bring out your camera and document the story you and Ron are living. And when you do, please email me some of your pics at playdorsey at comcast.net. I want to see life through your eyes. Thank you for taking the time to post a comment here.
  • Fiona law   Feb 19, 2014 2:34 AM
    Patricia,

    Loved reading your words of truth and wisdom. I have MS, 58years old and Australian, trying to work with the challanages , love the inspiration you brought to the table. Good on Ya matie....
  • Georgia   Feb 19, 2014 4:28 AM
    you are and inspiration! self esteem, regrets in life, confidence, are also emotions I feel. your writing makes me feel inspired that i too can live a full life with the emotional roller coaster i am on. thank you, maybe this is what i needed to get me up, and move on with something new, that i too can still be capable of something productive that will change my life and view, of myself.