seriously, we did not know

I am walking against MS May 4

     I am walking on the Lane's Ladies team.  Lane Hollenbeck is a young man from Rochelle who was diagnosed with MS several years ago.  His wife, Mary, organized a team to walk to raise money for MS.
     Here is our story.
     Emily was at Drake.  We all went to visit her one summer day.  It was hot.  Jackie had been spending a lot of time laying on the couch at home.  She did not want to go out.  She did not want to play cards.  She did not want to do anything but watch tv and sleep.
    We thought she was depressed.  I kept dragging her out as much as possible, sometimes not being very nice about it.
     But the outing in Des Moines was the worst.   We went to the zoo.  Jackie would walk 10 feet, then complain she was tired.  We would drag her to the next bench.  She would sit and complain she was tired.
      We all thought she was having a mental problem.
       We went to a doctor, who sent us to a neurologist in Rockford.  He did an MRI and we went to review the results.
      I remember him looking at the images, going into another room, making a call, and coming back into our room.  His first question was, "Does your insurance allow you to go to out of state medical facilities?"  I said, "Do you mean Mayo Clinic?  If you do, yes it does."
      He then said he had a strong hunch she had MS, but he was not an expert and suggested Mayo.  They made the arrangements and soon we were making the drive to Rochester MN.
      If you are not sick, Rochester  is a great place to visit.  And if you are sick, then Mayo is a great place to visit.  They did tests:  blood draws, MRIs, a spinal tap.
      We went home and gave them time to look at the results.
       We had a follow up appointment with a doctor who coincidentally was from Geneseo.  We talked about football, the rivalry, life in Illinois....then he got down to business.
      The diagnosis of Multiple Sclerosis hit us like a ton of bricks.  Truthfully, much of what he said after that was a blur.  I remember him saying hers was not advanced and that in all probability she would not be confined to a wheelchair or lose bladder control.
     I have never been so scared in my life.  Yet in a sense, we were relieved that we knew what was causing her problem.
     We went to Rush because the doc at Mayo said go to a teaching hospital, they are on the cutting edge of advancements.  We told family.  We told the staff at school.  We told our friends.
     The doctor at Mayo Clinic said MS affects something like 1 in 100,000 people, mostly women, mostly in the northern tier of states.   But again, he may have said 1 in 10,000....my mind wasn't focused on statistics at that point.
     Either way, we can count at least 20 people we know who have MS.  If it is 1 in 10,000, then we live in a world of 200,000 people.  We don't.
      We have learned about MS since that day.   We know heat is terrible for MS patients.  We know various agencies are investigating pockets of MS in Rochelle, Paw Paw, DeKalb....where the rates are higher than expected.  We know there is no known cause.  Maybe it's environmental.  Maybe it's a virus.  We know some people become completely disabled, unable to walk or dress themselves without assistance.
     We know it is a terrible disease.
      Truthfully, I am still scared.  I do scream and yell.  And cry.  It's heartbreaking seeing someone you love lose the ability to walk to the mailbox without help.  Or climb a driveway in Switzerland.  Or hear that she had to pick herself up off the floor because she lost her balance, and no one was home to help.
     I also live with another fear.  We had no idea.  How do we protect our children?  How do our friends protect their children?
     Jackie does a weekly shot, developed by the first doctor we saw at Rush.  People always ask does it help?  I don't know.  If she stops taking it and gets worse, that would be an answer.  But we don't want to find out that way.
     This is my third MS walk.  It should be my 15th.  For too many years I did not do my part to help find a cure, or a cause, or a relief.
     I like to believe I can make a difference.  Maybe not for Jackie, but for the Lanes of the world, and the future victims of this debilitating illness.  Someday, there will be a cure. Until then, research has to be done to find its cause and the best preventative and treatment options.
     Here is a link to the donation site:     http://main.nationalmssociety.org/site/TR