Mark and Wendy Kravitz

2 Jun

May 31, 2012

Mark, in front of his beloved espalier pear tree

In a slow, difficult manner of speaking, Mark told me that recently, he is unable to dress himself, button buttons, tie his tie and that Wendy is helping him get dressed.  Wendy added that he can do it himself, but it tires him out so much, it’s not worth it.  She exclaimed, “and I have gotten very good at tying his ties for him.” They laughed at this and Mark, with an impish grin, kidded Wendy about her technique and they laughed some more.  Late in 2010, because he couldn’t button small shirt buttons, Mark went to the doctor.  A long series of tests followed to rule out all other possibilities (Lyme disease mimics early symptoms of ALS), and Mark was diagnosed with ALS in April of 2011.  Wendy and Mark agreed to let me interview them for the Meeting’s blog about what its like to live with ALS or Lou Gehrig’s disease.  Even with the sometimes hard discussion that followed, one of my first and overall impressions was how their 40 years of marriage showed itself throughout the interview as a deep, gentle, and obvious bond.

ALS manifests in different parts of the body.  For some, their legs go first, but their speech is good.  For Mark, because he has the bulbar form of ALS it is the opposite, his legs are strong (he can still walk 1 ½ miles on days when he doesn’t work), but his speech and his upper body is affected, and it can be hard to make out what he is saying.  ALS mainly affects the muscles or more specifically the motor nerves start to degenerate, causing muscles, like the tongue and jaw muscles to weaken and atrophy.  The bulbar form also has the potential to diminish function of the frontal lobe of the brain.  This causes it to be harder to make some decisions, organize thoughts, and plan one’s life.  Wendy said, for example,  it is difficult for Mark to travel so she travels with him now. Surprisingly, his work as a United States District judge has been relatively unaffected.  His knowledge of the law over so many years seems to have become “crystalized” and he has no trouble functioning and being decisive and very effective on the bench.  Though, just recently, he has stopped hearing criminal cases, he does continue civil cases.  He continues to drive to work Monday through Thursday from 7:30-5:30.  He is going to start taking the train in June.  Wendy mentioned with gratitude how supportive his colleagues and the Federal court has been.  He is so well respected at work that they are bending over backwards to keep him there.

And no one knows how it comes about.  It seems to attack people who are very healthy.

On July 3rd, he is going to have a feeding tube inserted into his stomach.  He is losing weight and the tube can help him get more of the calories he needs.  He is having trouble eating and choking while eating is a problem. His appetite is falling off.  He is not having the feeding tube put in to extend his life. It will give him more options.  They can administer medications and it will allow him to stay at home as long as possible.  His diaphragm function has dropped from 99% in early 2011 to 65%.  Some ALS patients go on a ventilator to help them survive.  He said, “I don’t want it.  I want to die with dignity.”

Mark will end a double-blind clinical trial in July for a new drug being tested for FDA approval at the Hospital for Special Care, part of the UConn Medical Center in New Britain.  He will get the trial medicine after the study group is completed in late September.  I asked if the medication is strong and he said there are no side effects.  He then added slyly, “I have the placebo!” and laughed.  It’s true, he has noticed no benefit from taking the medication and has gone downhill since the trial began. He has refused to take another more common FDA approved medication since it only seems to extend patients lives just three months.

The disease can be drawn out or it can quickly progress over a couple of years; there is no standard timeline.  It’s not as if someone is hit by a bus and it is over suddenly. Wendy said, “As a family we have had time to
grieve together and slowly let go. We have been working very hard at it. We’re in a tailspin, but it is a slow descending tailspin.  We recognize we have no control over this, but there is an element of control over how you want to live the rest of your life.”  The kids, Lindsey, Jenny, and Evan have all been involved in the choices Mark has made about what he wanted to do.  Mark has talked about facing death with them and they have heard his living will.  Evan, now living in California, is going to work at home in Guilford for the month of
June.  There was some concern and discussion about whether Mark should continue to work or stay home and be with his loved ones while he still had good times to give, but for Mark, life is work, he doesn’t feel good unless he is being productive.  They have agreed that he will work from home on Fridays.  It is just
this kind of give and take that I witnessed in the short hour I was with them. I saw a part of Wendy that has an attitude like, Mister, I will follow with you wherever this takes you.  The tying of Mark’s ties, helping him dress and attending him when he chokes on food is where it has taken them as of now and both seem to accept with grace the give and take needed.  And Mark shows unquestioning confidence that she and his family will be there with him.  The love between the two was palpable, the trust inspirational.  It is the silver lining I witnessed.  May we all be so lucky when our time comes.

I asked Wendy and Mark if the Meeting can avail itself of anything, clearness committee, pastoral care?  Wendy said that a lot of people have asked and it is hard for her to think about what can be done.  She does have a spiritual support group of Friends. “I find people say, let me know what I can do, which is really nice, but there are so many people asking, it’s hard to think up what each person offering support might do for us.  I’ve got too many other things to keep straight right now. Some people have taken initiative to do a simple, small thing that they think of on their own. The best things are like that when someone just does something and doesn’t ask first”


One Response to “Mark and Wendy Kravitz”

  1. Maureen Lopes June 3, 2012 at 9:58 pm #

    I will always treasure the photo of Mark with this article, and being a part of their daughter Jen’s wedding. Thank you Wendy and Mark for sharing with Michael and all of us. You know that we are holding you in the Light. Maureen

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