When Bad News Arrives

My phone rang this morning with a familiar request.  Would I talk to someone just diagnosed with multiple sclerosis? I am often asked to speak to a usually young person who has been diagnosed with the sickness.  Leave me alone, I think.  What do I know? I ask myself.  There are no answers, only questions, doubts, fears.  Okay, I say, but have him or her call me.  A friend or relative may think someone wants to talk, but often the poor confused soul just wants to hide.  I get it, and more often than not, my phone does not ring.

So here is my unsolicited, perhaps unwanted advice.

Slow down.  Take a deep breath and do nothing.  Finding the perfect neurologist, as if one exists, can wait.  There is time later.  Do not dive headfirst into an MRI machine.  You’ll get a headache. I will get you an appointment next week.  Sit down and think.  You are not going to wrestle the beast to the ground.  But you do need to coexist with it for a lifetime.  You have signed up for a lifetime membership in this club, which will not expire until you do.

MS is a mind game as much as a disease of the body.  Are you going to be victorious or a victim?  Too many of us construct fences around ourselves, limiting us by assuming the worst.  I am a believer in healthy denial.  Do not deny the disease.  That is a losing hand.  Deny the certainty of possible outcomes.  You have started on a journey without end.  Learn to live with uncertainty.  You do not know where your journey will take you.  Your attitude will play an important role in your health.  Chill out.

Join a gym.  Get in shape and stay there.  Body strength can save you when you need to hold on or fall carefully.  And you will feel better and look healthier by dropping the weight and toning up.  Learn to respect yourself.  MS too often attacks self-esteem and confidence.  You are psychologically stronger than you think.  Do not forget that.

Please learn to laugh.  Illness is arbitrary and the theater of the absurd.  Crying gets you nowhere.  “I am thankful for laughter,” Woody Allen noted, “except when milk comes out of my nose.”  Actually, that can be pretty funny, too.  Do not overlook what your family and friends need to cope with your situation.  A positive attitude will lighten their load.

Yeah, I know.  Well they do not have MS.  Yes they do.  We are not alone.  Our families and friends walk in our shoes with us, no matter how we stumble.  I helped raise three kids who had to live with my condition.  We laughed a lot.  Never tears.  When I could not button a shirt or tie my shoes and got angry with myself, they called me on it.  When I swore a blue streak at the top of my lungs, my youngest threatened to wash out my mouth with soap.

Know this.  You will survive.  And you can have a good life.  But you have to work to make these things happen.  Toughen your skin, my friend.  None of this will be easy.  Accept that.  Your future has not been taken from you, only your directions to Easy Street.

 

 

8 Responses to When Bad News Arrives

  1. Karen November 14, 2013 at 9:49 am #

    Love this! Thanks…

  2. Dena November 14, 2013 at 7:17 pm #

    My husband (who has had MS for 11 years) is a Peer Counselor for other men with MS through the Los Angeles MS Society. It’s great that you speak to newly diagnosed folks, there are so many questions. I know I wish we had someone when he was diagnosed.

    • Richard M. Cohen November 14, 2013 at 7:57 pm #

      Your husband is doing important work.

      God bless,
      R.

  3. David Greenspan November 17, 2013 at 7:09 pm #

    Solid advice for anyone who isn’t a trust fund baby,

  4. Amanda June 12, 2014 at 11:04 pm #

    I was just diagnosed with RRMS on May 1st. I’m a 41 year old wife and mother of 5. “Learn to live with uncertainty” Wow, this is truly what I’m struggling with!
    Thanks so much for sharing your experiences. I can tell you don’t think so but it’s a brave thing to put it all our there!

  5. Nik August 9, 2014 at 10:56 pm #

    I am a 41 year old woman too. Just diagnosed. Mother of a twelve year old and I’m scared to death. Reading your posts and finding this one has been particularly helpful. Thank you so much Richard. I’m back at my gym and just ran two miles. It took me 55 days from my “CIS”. I’m going to remember your words and workout so I can be strong when I need to be.

  6. Michelle Rivera October 4, 2014 at 9:26 pm #

    I’ve been reading your blog today for the first time. Your comment of “Your future has no been taken from you, only your directions to Easy Street” is bringing mixed emotions to me. Part me says, ‘What bullcrud! I’m nothing like I was. I had to move from a two story house 3 months ago to a single story house, much older than my previous house and not as nice. I’m single, using up all my energy teaching all day and then feeling guilty as I have none left for my 14 year old. Every day feels like a marathon with energy and then I am too exhausted to rest. My twin sister has to take care of me so much and I hate it!!!!!” Yet the other part of me, a lost part perhaps, finds hope in your statement and says I still can maneuver streets, even if they aren’t easy street.” Thanks for your blog, I can relate to it.

  7. Kait April 3, 2015 at 5:47 am #

    So, I’m a late starter, I only just discovered this blog and am reading literally from the bottom up, and just wanted to pause here and say “Thankyou” for the pep talk. This was exactly what I needed.

    I’m five years in with my type 1 diabetes diagnosis, and last month learned my thyroid has also given up on me. I find myself juggling insulin pumps and white canes for my legally blind eyes and now they want me to pop a pill for a thyroid that no longer does its job. I was (am) overwhelmed and pissed off with my immune system for letting me down. But your right, tears don’t help. Getting off the couch, joining a gym and getting myself fit. So that I can have children off my own is what will help.

    Easier said than done I know, but one step at a time is the best that I can do, and step one is to change my attitude.
    Here goes nothing….