Who am I?

When battling a chronic illness occupies the better part of a lifetime, it is tempting, though a trap, to use health issues as the focal point to focus the camera on your own life.  What do you do?  Oh, I have multiple sclerosis. But what do you do?  I have MS.  That’s a fulltime job, pal.  For the many who feel doctored to death, it sure does feel that way.  The idea that we are trading in a broader identity can be lost.  Pity.  We can lose sight of who we really are.

I am the husband of a beautiful, successful woman.  Our identities have merged, and we take from each other.  Our bodies, too, have come together, and we have given to the other.   Who are you?  A guy with MS.  Perhaps I am missing something here.

Who am I? you ask.  Well, a father, I say.  I have three who are young adults.  The oldest works in Shanghai.   He works building nuclear power plants and is fluent in Mandarin.  His brother is a television reporter in Spokane, his sister studying in Prague now.  If you ask them who I am, they will say a New York Times best selling author or simply a pain in the ass.  I doubt the letters MS will cross their lips.

I, of course, do not lose sight of all I no longer can do.  Those limitations stare me down and wear me down.  I am less than I was and feel doctored to death.  People like me spend too many hours in ruts and no longer see ourselves for who we really are.

I am legally blind, having endured too many bouts of optic neuritis, which steals vision from many in broad daylight.  Also, I am blind in a more far reaching way.  No longer do I see myself for what I am.  I am a captive of loss and can only see what is missing.  What is intact and still there is around the bend, out of sight and sadly beyond memory.  Another connection broken.
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Richard M.

Richard M. Cohen

Richard is an award-winning journalist, television producer and author that has been living with MS for over 40 years.  Published works include Blindsided, which chronicled his battles with multiple sclerosis and cancer, and Strong at the Broken Places, both New York Times best-sellers.  Richard is a frequent blogger who writes about his life with MS  - you can follow his blogs on his site Journeyman at www.richardmcohen.com.  

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    40 Comments

  • divagma55  Jan 9, 2014 8:33 AM
    There is a reason you are a best selling author. Bravo!
  • Avatar
    Bobo  Jan 9, 2014 8:40 AM
    You hit the nail on the head-not seeing who we are any longer, only the MS prognosis and our increasing limitations. Although some may say get over the pity party, it's where we live, looking out as the world seems to go onward. Most times I can be positive about what I can do, but once in a while I need help to find my way out of that MS forest of doctor appointments, new tests and frequent blood tests. Cheers. Bobo
  • Yvonne   Jan 9, 2014 8:40 AM
    So true! When I was forced to stop working, next to the money issue, that was my biggest concern. When people say what do you do, what would I tell them? I thought about making stuff up, but my conscience wouldn't let me get away with that! I still struggle with the issue. As always, your words get to the heart of living with MS. Thank you!
  • Richard Sprinkle   Jan 9, 2014 9:02 AM
    Priceless and oh so true, Mr. Cohen. My thoughts exactly. Upon diagnosis in 2006, I continued to deny and accept this MS stuff. 2013 brought my world from denial to WTF is happening to me? RRMS. Life over, hell no!
    New chapter starting for our family, most definitely!
  • Celeste   Jan 9, 2014 9:06 AM
    I also struggle with what I've lost, rather than who I am and what I do. I feel embarrassed that I can no longer practice law due to cognitive problems. If people ask me what I do I either tell them I'm retired (which is surprising to most, because I look too young to be retired), or I tell them the truth that I dog sit for my neighbors. Ultimately, I feel that I must explain why I'm retired or dog sitting--because I have MS. Translation: I feel sorry for myself, therefore you should too.

    I believe it is normal to grieve for what we've lost, but when we focus too much on that loss, then it's time to seek counseling, support or activities that help us change our perspective. For me, I am learning to be grateful for what I have. My neighbors call me the lady dog "whisperer." How cool is that?
  • barb   Jan 9, 2014 9:13 AM
    I have read your book and I found it helpful from someone else who has lost so much
  • Sharon   Jan 9, 2014 9:35 AM
    So true. I am lucky to have a supportive family who will not let me wallow in self-pity. But I do find myself wondering if I still have a purpose here on Earth. My kids are self-sufficient adults and I too often feel the burden weighing on my dear husband. Noone complains. God bless everyone who loves unconditionally.
  • Kerri   Jan 9, 2014 9:41 AM
    Grief can be consuming.

    I'm blogging about my active years to remind myself of what a full life I've led. It's therapy for my soul....and a written record for my kids someday if they're interested.
    http://climbingdownhill.wordpress.com
  • Diane   Jan 9, 2014 9:42 AM
    I have always teased about my identity, When a young girl I was the sister to my older siblings. When I married I became Dayle's wife, I had children and I became their mother. It was when I became an assistant teacher that I FINALLY had my own, I became Ms. Robinson! Well, that as well as all of the above. People can see that I'm disabled and I might tell them I had to retire due to MS but I usually smile proudly and say I am a grandmother, a Christian and most times a very crazy, happy woman!
  • Brad Reiss   Jan 9, 2014 10:02 AM
    Dead on Richard and many dead on replies. Nice to have found this website.
  • Jennine   Jan 9, 2014 10:22 AM
    Having had MS most my life without diagnosis I suffered but continued on anyway. I was told I couldn't do this and that, but did it anyway. I have though in the past 4 years lost my identity to progression and if you ask those who know me I am now two different people. It is sad to be who I use to be and to go on a hard rediscovery!
  • Kelly   Jan 9, 2014 11:24 AM
    I'm new to all of this. I waited 47 years for my first marriage to the man of my dreams and 3 days after my wedding, literally woke up with chronic pain that has lasted steadily for 6 months now. One month after the wedding, got the diagnosis and the same week, inherited his teen-aged son.
    My question is, when do I get to take care of me and my illness? I didn't have time to wrap my head around my new identities as wife and stepmother - and now this? How can I not feel so overwhelmed and disconnected from who I thought I was going to be?
  • Tonia   Jan 9, 2014 11:26 AM
    I completely agree with all of these comments. A person cannot understand unless they have gone through these struggles.
  • June   Jan 9, 2014 12:04 PM
    some days I am totally confused, as to who I am and what my needs are. I am also doctored out. Some people do not get it. I thank God for my friend Thelma who jumps to the plate in support.. I have been in bed the past couple of days. Yet, we get up and try it again.
  • Ann Johnson   Jan 9, 2014 12:05 PM
    Wow. I'm quite down at the moment. All my friends are doing things I thought I would be doing in retirement. I feel as if I'm living in a parallel universe. I try to enjoy today what I probably won't be able to do tomorrow. It's hard when all you can think of is what you could do yesterday.
  • Laurie Owen   Jan 9, 2014 1:40 PM
    HI Richard- I have read this and other articles you've written about. Family, spouses, careers, vocations,- they all come first. The MS just tags along. YOu are an amazing man who has not only dealt with MS but two bouts of cancer (I don't need to remind you). I love that you drink alcohol, because I love my evening chardonnay. Sorry about the blindness. I've had optic neuritis and it's a pretty daunting thing. Good luck and good health to you. Thanks for writing and you and yours have a very happy new year.
  • chandra micek   Jan 9, 2014 1:42 PM
    I too can understand where you are coming from!I find the unptedictibility of the disease to be one of the most difficult things to deal with and at times have trouble seeing all the unexpected blessings God has so graciously bestowed upon me.Thank you for your wonderful article, take care!!
  • Donna paden   Jan 9, 2014 3:45 PM
    I have lost my identity have isolated myself.
  • Donna paden   Jan 9, 2014 3:46 PM
    I have lost my identity have isolated myself.
  • Anita Towhill   Jan 9, 2014 3:49 PM
    I am a 58 year old RN, identical twin, grandmother, volunteer and a MS Advocate and motivator to help others become MS warriors and live each day to the fullest. When one door closes another opens
  • Avatar
    earthroamer21  Jan 9, 2014 3:50 PM
    Richard, I always appreciate your posts. Thanks for sharing this.
  • Dawn   Jan 9, 2014 3:51 PM
    I got diagnosed in 2005 and went through great depression then and wasn't even clear on the road ahead. You learn who you are by the strengths that you use, mind, body, family, friends. You can't loose yourself to any chronic disease you are the captain !!
  • Dawn   Jan 9, 2014 3:51 PM
    I got diagnosed in 2005 and went through great depression then and wasn't even clear on the road ahead. You learn who you are by the strengths that you use, mind, body, family, friends. You can't loose yourself to any chronic disease you are the captain !!
  • Jenny   Jan 9, 2014 3:53 PM
    Mr. Cohen, if we could only see ourselves as others see us.

    I envy you -- your kids are grown and doing well. I am a 49 year old mother of an 8 and 11 year old who daily are being told what they cannot have (because we don't have the income now that I am not working.) Also, you reached a pinnacle in your career that could only be characterized as success. I had not yet achieved that in my career. Due to a major career change, immediately followed by pregnancy, and now MS, I am forced into disability without that feather in my cap.

    I am sure there are those who see me as successful, but I struggle everyday to feel good about what I have accomplished in my lifetime. I ask God daily for the strength to live a life that is pleasing to him, and in that, I hope to find success.

    Be encouraged. Like your children, I think you are a remarkable person with a lot to be proud of. And I pray that my kids feel the same about me.
  • Avatar
    A_J_  Jan 9, 2014 4:54 PM
    I, have been "following" you...Wish I could meet you. I have had me for around 6 years...60f. Married. And I wish there was an answer to that question.
  • Rhonda   Jan 9, 2014 5:24 PM
    Richard, thankyou for your blog. After I was diagnosed in 2005 with RRMS I had a downhill slide from fear. Gained weight, put on antidepressants. The worse was questioning who I was because for so many years I identifyed as a working nurse. I had to quit working and have felt in "limbo" ever since. Not sure what to do with myself. Then one day I said, hell..I may just assume the long desired for role I intended as a retiree. Took painting classes, started reading all the books I had put off. Helped out with neighbors who had aging parents with alzheimers and eventually lost the weight which made all my symptoms so much worse! Now I am working on the stress management issue, cause after all this I still have my days and fatigue keeps pushing me down on the couch. My advice to anyone who has MS ...use the couch when you need to then find something more physical that interests you and get off the couch. Get out amongst the living and you will find yourself, a different self but none the less someone you will be able to be proud of.
  • Theresa   Jan 9, 2014 5:38 PM
    I saw my neurologist today, first appointment in a year. He said I was strong and to keep doing what I am doing, suggested I lose a few pounds. Already beat him to it, got a trainer and dietician. Yes it is hard work and MS can kick you to the curb once in a while, but it is up to us to get up and keep moving. MS is going to have to run fast to keep up with me. I have MS, it doesn't have me.
  • Dorothy Bolen   Jan 9, 2014 7:08 PM
    This soucnds like me. I wored as a medical lab tech untill an optic neuritis attack caused me to become legally blind and the hospital used that as a way to get rid of my career. I have developed many other health issues and the biggest has been not being able to drive now. I walk with my back pack to the losest store 3 miles away. I love to exercise, but in hot weather or winter I am stuck in the little apt. I struggle now to buy food because my SSDI is just over the poverty level so I need a part time job but in my city when they see I need accomidations I don't get the job.
  • Rebecca   Jan 9, 2014 7:25 PM
    I can still see who I am, very vividly. Others have a hard time seeing that I am here. When I get agitated or aggravated with them and remind them that I am still very alive and very vital, I am dismissed like a child that just doesn't know any better. I keep trying to show that I am still here. Some can see it, some cannot.
  • Barb   Jan 9, 2014 7:41 PM
    I have described this as being stuck. I feel I need to rebuild with the new knowledge and limitations but don't know which way to go so I stay stuck in caring for myself and dealing with the daily life. I know I will find the way but it just hasn't come to me yet.
  • Pamela johnson   Jan 9, 2014 7:51 PM
    I miss teaching so much!!! The kids kept me young. Now, I volunteer at a Senior Citizens Place. It helps me with my MS. I won't give up on a cure. I am so waiting for Feb to see the results of your stem cells. I don't have the money like you(I can no longer work) but hope it works and us little people can get the treatment.
  • sandy   Jan 9, 2014 7:56 PM
    Hello Richard!
    I was diagnosed with Relasped-Remitting in fall of 2006...I had to leave my career that I loved...but I am glad I did..because I live a stress free life and my Neurologist indicated that. I am stable.....I do hope that someday there is a cure.. I follow you Richard and you are so blessed! We love you.
  • Dawn D   Jan 10, 2014 12:31 AM
    You have so much strength through everything. And there have been so many times since my diagnosis I needed that. I have m.s. & lupus. With all this I have learned to become slightly more comfortable with the uncertainty of m.s. I have friends at both spectrums of this disease & what I have learned from it is to surround yourself with a few things good support thru friends & family, doctors and specialists, and finally things that make you able to cope like hobbies, meditation, church ... reading what you have shared is among the things that help thanks.
  • Sheila   Jan 10, 2014 1:43 AM
    So why do you do when you've survived all that and one too many falls have the drs telling you the hard facts that the news itself doesn't even matter anymore because you can feel it already in your own body. That maybe the last time you fainted and hit your head for the millionth time his him reading the MRI report using his jargon that is all too foreign already. I go numb at the mention of "fluid leaking from your cerebellum....." Then the sound goes out of the room, as I watch the Drs. lips move. I wiggle it strengthen my resolve. Then another phrase " clots in yours spine" .

    My MS. My MS is terrible, I have lost everything even my ability to want to know how bad it really is. Do you have a drug or catchy phase to get me through that? Maybe some hope from the dr that's treating me. He sure was finally willing to fill any prescriptions. Good thing I never needed to rely on him for any but the copaxone. And how well is that working?
  • Janelle   Jan 10, 2014 6:13 AM
    I was diagnosed in 2004 & my world was ROCKED! I was a single mom raising my son alone since he was just weeks old. He was just over a year from graduating H.S.
    I continued to work two jobs to make ends meet, sales rep traveling the state by day, waitress in the evening. In 2007 & I had to quit my P.T. job & in 2010 my full time job. I went to work just two weeks later for the School system as a lunch lady in an elementary school. Three hours a day & some days are tough but I make sure to get my self going & work thru my symptoms. I LOVE my job & feel it is a positive that I need each day in my life feeding the little ones in our community. M.S. brings much more than the illness in our lives to deal with. My income dropped to 45% of what it had been and I thought I was going to lose my home. I fought BOA for three years ..... struggled & went without to continue to make my house payment. With the help I sought out from the atty. general I finally got a modification which lowered my house pymt. by $500.00 per month & I am still in my home.Still have financial struggles but I have faced those for 26 years being single!
    Humor was huge in my life before I was diagnosed & I have found it to be the BEST medicine. When I stumble into a wall ..... I tell my coworkers to quit moving the walls around! When my words come out jumbled I turn it into a "jingle" and turn it into a song & start singing! When I recently was having issues @ the grocery store & balance was off, I stumbled and knocked a bunch of paper towels off an end cap. People were staring @ me like I was drunk so I said loud enough "Damn, should not of had so many Margarita's at lunch!"I laugh much & hold my head up high! I stay as upbeat & possible as I can. I have found positives due to my M.S. ~ I no longer work 19 hour days and if I want to sit on my deck for three hours & watch a bird build a nest ..... I can! Yes ~ I have my days where I get upset as I can't do what I use to. I was known for having the prettiest flower gardens on my block. They turned to gardens of weeds the last two years & I sought out help & getting them closed up. I use to love to dance and now I dance with the walls!
    I do believe God had M.S. enter my world to make me slow down. So I will continue to stay positive & focus on what I can do not what I can't do!
    Humor, Laughter & positive thoughts help me to carry on .......
  • Cindy Latvala   Jan 10, 2014 9:01 AM
    Undimtnosed.ug. I was diagnosed in November of 2001 after living undiagnosed around 15 years? On one hand it was a relief to have a label, but also very scary. I held it together for about a year? Due to cognitive issues I was forced to give up my career that I had spent 20 years building. I am struggling to rebuild my life after losing probably 10 years of it in getting a handle on my MS. Tysabry was a lifesaver, but after converting to the JC virus I decided to give up all treatment until something comes out that is safe to use for my secondary progressive form. I am very blessed to have an understanding and supportive husband who has suffered two forms of Cancer himself. It is nice to read a blog that is realistic as well as positive. Thank you.
  • Steffen   Jan 13, 2014 2:26 AM
    Great question! Thanks
  • Steffen   Jan 13, 2014 2:26 AM
    Great question! Thanks
  • Avatar
    finestglasses  Jan 14, 2014 8:28 PM
    It that is helpful makes a situation more pleasant or more easy
  • TiredTina  Feb 1, 2014 4:19 AM
    This really hit home for me, I have no idea who I am anymore! I remember who I was and miss that girl but I can't seem to find her because she has been buried by this disease. I spend too much time wishing I could be me again, the me before MS. I sometimes wonder if I am allowing MS to define who I am. This post really made me think.