A new hope

The challenge for those living with chronic conditions is to learn as we live and work with our doctors to identify therapies that will help us and ease whatever pain.  Too frequently a patient discovers an ammunition shortage–leaving him or her with no end game, hardly a surprise because there is no end.  These are incurable illnesses.

When Meredith and I attended an adult stem cell conference at the Vatican, we knew little of what to expect.  Now anyone who can read is aware that there is a never ending controversy about the use of embryonic stem cells in research.  The link to the abortion issue is too close for comfort among many Catholics and conservatives.

It seems that most research today uses adult stem cells.  Hence the Vatican conference and the Church’s interest in moving beyond the anger.  Then I learned that a lot of stem cell work is done with autologous cells.  That means the patient’s own stem cells.  Who can argue with that?

So there we were in the middle of Rome, in good cheer and eating good food.  Each day could be taken at face value, with no agendas in play, only the full potential of an emerging therapeutic modality.  I let down my guard, and my mind opened.  And so, I was receptive to all I was hearing from eminent scientists from around the world.

I was blown away.  Not only are diseases being treated with stem cell therapy, organs are being grown in labs.  And nobody claims it is morally wrong.  The research was credible, the stories stunning.  And this was now.  Today.

I chaired the panel on autoimmune diseases.  We focused on multiple sclerosis.  I described the patient experience and played traffic cop for the other panel discussions.    There were doctors and patients telling their stories.  One presenter was Dr. Saud Sadiq, an MS specialist from New York.  Much of my presentation had centered on hope, how difficult it is for patients to discover and sustain it.  I also spoke of the loneliness of illness, no matter how loving our families and friends.

Dr. Sadiq quoted my words frequently in his presentation.  He demonstrated how tuned in to patients he is, which is his reputation.  He met Meredith and our grown children who were at the Vatican to discuss growing up in a house with chronic sickness.  They spoke at a lunch and certainly earned their supper:

We spent a week in Rome.  My head was swimming with possibility.  Conventional therapies had failed me for decades.  Optimism and hope were alien concepts.  Something inside me was simmering, on a very low boil on the rear of the stove.  The sensation was unfamiliar.

It seemed a stretch to relate all I had shared to myself and the losing battle I was waging against a progressive neurodegenerative disease.  I played with fantasy, a game too dangerous to play in the past.  It was all understated.  But it was there.  The genie was out of the bottle.  I felt no ambivalence.

I ran into Dr. Sadiq as we left the goodbye dinner.  He smiled and said, “Come see me when we get back to New York.”

2 Responses to A new hope

  1. Deborah Perelmuter October 17, 2013 at 1:56 pm #

    Hope is a four letter word.

    Thanks for documenting your part and observations from the Vatican conference.

    I am a patient of Dr. Sadiq’s and have been since his small digs on 59th St back in 1999. Hope is what keeps me going, although day in and day out, hope can sometimes just be a word. But the more I hear of today’s research and hopefully tomorrow’s successes, the more I try to “keep it together”.

    I worked full time for 30 years, 17 of which were with the disease, the last ten or so with greater difficulty, but didn’t show it….the career I had (public policy/financial) was bigger than MS and there was no time for weakness (it was a financial crisis after all).

    I did reach my limit on ability to commute and work to the extent my career demanded. Disappointingly, I’m on a leave. But on the plus side, I can read posts like yours and spend more time on myself and on that four letter word – hope.

    Thanks for all you and your family are doing.


    • Richard M. Cohen October 29, 2013 at 3:52 pm #

      We all are in this together.