Look Around You

There is a lot of illness in the land, and there are varying ways of coping.

The final piece on this weekend edition of the CBS Evening News told the story of  a man dying of ALS (Amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease.  The fellow is a businessman in North Carolina and father of two  who had an admittedly crazy idea to give away donuts, lots of donuts, to school children, just to make them smile.  Krispy Kreme got wind of the far fetched plan and provided thousands of donuts and a bus to make his deliveries to area schools.  He demonstrated how to live while dying.

I have learned through writing columns and books about real people living with serious conditions that people are stronger than they think, and many if not most rise to the occasion.  I have written about good people, strong souls, who soldier on, living their lives as best they can.  I think self-defined victims are in the minority.  there is a lesson here for those who grapple with serious health issues.

Grace in the face of serious sickness is stunning to witness.  It is a blessing for families of those who must face the task.  It eases the pain of spouses and children of any age.  Aplomb and dignity become a gift to the sick, too.  The ability to rise above the daunting challenges at hand and think of others is remarkable.  Satisfaction is to be drawn from that skill.  I sat on a panel with Elizabeth Edwards in her last years of life.  I told her I admired how she comported herself.  She just smiled because she knew what I meant.

After some years on the Advisory Council of the Harvard NeuroDiscovery Center, I told its founder, the former Dean of the Harvard Medical School, I would rather have MS than Alzheimer’s, Parkinson’s, ALS or Huntington’s, the other illnesses being researched at the Center.  Each is a uniquely horrible condition.  MS is no picnic, but I would not trade places, and this makes a point.

It is a valuable coping mechanism, at least for me. Look around.  See the suffering in our midst.  We are not in the battle with chronic illness, really any kind of illness, alone.  There are  over one hundred and thirty million of us.  Many chronic conditions are cruel.  Others have it worse than we do.  I profiled a woman with ALS in one of my books.  I was introduced into the ALS community and saw the illness at close range. ALS carries an average life expectancy of two to five years and a slow death.

The ALS community is very active and tight, more so, perhaps, than the MS community.  Probably that is because ALS automatically means a tough journey down a one way street.  People who must live and die with the illness need each other.  That offers a useful frame of reference for adjusting to other physical problems, specifically, our own.

 

 

11 Responses to Look Around You

  1. Tracy McReynolds February 24, 2014 at 12:55 am #

    My mother lost her battle with ALS in 2010, just 10 months after onset. I was her primary caregiver until the last few weeks. This is a horrible condition for not only the diagnosed but the family who have to endure. I have MS, age 42 (dx 2006). I gave everything I could to make the last days of my mother’s life the best they could be. Reflecting back, I felt like I was watching the last years of my life and what they might become. Life is a strange thing…,but I know I want to live each day to the best of my ability…part of that is sharing, loving and giving. I’m truly thankful for having gone through my mothers diagnosis and mine! I know what is important in life….living each moment like it’s your last!

    • Richard M. Cohen February 24, 2014 at 7:06 am #

      Tracy-

      Your story is unimaginable though I imagine not that uncommon. These are both bad diseases. I wish you well.

      Best,
      R.

  2. MimiNOLA February 24, 2014 at 8:00 am #

    Thanks for the reminder. I watched a documentary on Stephen Hawking. He has endured for so long by knowing he had more to learn here. At times, isolation and self-pity are my most insidious diseases.

    • Richard M. Cohen February 24, 2014 at 9:25 am #

      Those are self-inflicted wounds. Please try to be nicer to yourself.

      Peace,
      R.

  3. Geof February 24, 2014 at 3:22 pm #

    I think I know what you mean. When I was first diagnosed, I resolved to take my shots in front of my children whose medical conditions were so much worse than MS (my wife and I foster medically fragile children). I thought they should learn not to fear the temporary sting of a needle or the little bit of blood following it. The truth is through the years I have gained and learned so much from them, more I think than I have been able to give back. Not the least of their gifts has been perspective. I sometimes think it is my job as a parent to give them a framework from which to manage their expectations. Then they go and change mine with the grace only a child never having known otherwise could muster.

    • Richard February 24, 2014 at 3:30 pm #

      I agree. You are a good parent.

      Best,
      R.

  4. coco February 24, 2014 at 3:30 pm #

    you are right Richard, I have said many times I would rather have mine (dermatomyositis).
    Namaste’

    • Richard February 25, 2014 at 7:13 am #

      What does that mean?

      R.

  5. coco February 26, 2014 at 12:02 pm #

    The word Namaste is a combination of the two Sanskrit words: nama, and te. Basically, nama means “to bow” and te means “you.” The Namaste salutation was transmitted from ancient India to the countries of South-east Asia, and has now traveled virtually all over the globe. In Japan the Namaste hand gesture is called Gassho and is used in prayer and healing sessions.

    Interpretation:
    The God/Goddess Spirit within me recognizes and honors the God/Goddess Spirit within you.

  6. Nancy Cincotta February 28, 2014 at 11:55 am #

    Richard, I am thankful for the parts of my life that are good and pure. For having two children that keep me focused on what is real in life. I am very aware of the worser maladies that are in the world and I am lucky in so many ways to be able to deal with my m.s. I am very thankful that you are going through this stem cell journey in such an open public fashion, your success will be a success for all of us suffering from this disease .

    • Richard March 1, 2014 at 10:10 am #

      Nancy-

      I am lucky to have found a seat in the first car of the train. We are on the same jouurney. Hopefully we will see results and others can make the trip. Just keep the faith.

      Best,
      R.