Tuesday, March 29, 2011

Lipstick on a Cruise Ship

     “How could I have gotten so old without figuring out how to interact with people in wheelchairs?”  Sure, I had encountered people in wheelchairs and walking with walkers and on crutches, but I always kept my distance.
     What should I say?  How should I act? The answers had eluded me much as the appropriate dialogue when faced with a death.  My mother taught me to say “How do you do” when introduced to someone—I always felt stupid and wanted to say “Hi” or just “Hello”--but I learned to be as polite and refined as my mother insisted.
My mother never taught me what to say, or whether to say anything at all, to someone in a wheelchair.  I can only surmise that she didn’t know how to react either.
     I finally learned a lesson a few months ago while on a cruise.  It was one of those perfect days at sea that I had come to love when on cruises.  We didn’t have to disembark, to go through another store with diamonds, jewelry, watches, or just stuff, when the ship pulled into another port just like the last one and all those before. 
Sitting on the deck at a table in the shade near the pool and trying to ignore all the chaos around me (It was Thanksgiving week and there were lots of kids aboard.), I was reading something, I have no idea what, on my Kindle, and didn’t even notice the woman in her wheelchair who had pulled up near me.  She was very thin, could not sit without trembling and shaking, and was obviously very ill with what  I never did figure out. 
     I reached into my bag for a lipstick and, while putting it on by rote, as I had done thousands of times, the woman in the wheelchair said she really liked the color and asked what it was.  I had never taken the time to think about physically challenged people enjoying all the seemingly dumb things we do every day. 
Taken aback, but trying to be cordial, I looked at the lipstick, read the name of the color, and proceeded to tell her how much I liked it, had just discovered it at Walmart, and how much I wanted to buy more. (True to form with almost everything I like, it has since been discontinued.)  How, I wondered, could this woman even think about something as frivolous as lipstick?  I couldn’t figure out how she even applied it with her trembling hands.
     She then looked in her purse for her lipstick to show me the colors she liked.  Talking  about lipstick, I was able to forget how disabled my new friend was.  For the rest of the cruise, every time I ran into her, we were friendly and easygoing. 
     How many times, I kept thinking, had I looked right through or simply ignored a person in a wheelchair or leaning on a walker?  How awful each person must have felt when treated as a non-person.  How awful had I made each person feel?
     It was the casual encounter with the lady with the lipstick that changed my attitude. 
     By chance, very shortly thereafter, my daughter approached me with a tale of meeting a woman who trained service dogs for the handicapped and how, as a medical researcher, she was interested in conducting a study to prove the positive effects of service dogs on the quality of life of people with multiple sclerosis.
As we had done many times, we began our collaboration, intending to work together on the grant proposal she had been thinking about.  The project grew and grew and evolved into msbeyondmeds.com. 

5 comments:

  1. Jim Spooner April 23 at 1:03am
    Your lipstick story made for a good read.
    A non-person; interesting word and I need to say that at times I feel like a non-person by the looks, finger pointing and tongue wagging
    I have MS and I am not a well person. The problem with me is I don't look sick. I look like a guy who is too lazy to walk preferring to us a handicap scooter or an electric wheelchair to get around the store on. Hence the looks, the finger pointing, and the tongue wagging.
    One thing I have found, from my dealings with a few MS Support Groups is; you better agree with what the group is doing or you get kicked out and labelled as a radical or a disruptive person by the members of the group.
    In many cases the group was formed as a support group to help a person and their family deal with a life altering illness.
    To kick a person out and put a label on them is not helping the person heal. It is doing more to cause the person to throw in the towel and give up then anything else.
    This new group that is starting up is going to encourage free speech and will not evoke censorship laws if we do not agree with what is being said.
    We want people to feel better; I want to feel better, through activities that stimulate the mind and body.
    Medication is needed in some cases, however, being medicated is not always the best answer in helping a mind and body heal.
    My feeling is a service dog would go a long way in improving the mental stability of a lot of people with MS.

    ReplyDelete
  2. J S April 23 at 1:03am
    Your lipstick story made for a good read.
    A non-person; interesting word and I need to say that at times I feel like a non-person by the looks, finger pointing and tongue wagging
    I have MS and I am not a well person. The problem with me is I don't look sick. I look like a guy who is too lazy to walk preferring to us a handicap scooter or an electric wheelchair to get around the store on. Hence the looks, the finger pointing, and the tongue wagging.
    One thing I have found, from my dealings with a few MS Support Groups is; you better agree with what the group is doing or you get kicked out and labelled as a radical or a disruptive person by the members of the group.
    In many cases the group was formed as a support group to help a person and their family deal with a life altering illness.
    To kick a person out and put a label on them is not helping the person heal. It is doing more to cause the person to throw in the towel and give up then anything else.
    This new group that is starting up is going to encourage free speech and will not evoke censorship laws if we do not agree with what is being said.
    We want people to feel better; I want to feel better, through activities that stimulate the mind and body.
    Medication is needed in some cases, however, being medicated is not always the best answer in helping a mind and body heal.
    My feeling is a service dog would go a long way in improving the mental stability of a lot of people with MS.

    ReplyDelete
  3. Matilde Batista | April 14, 2011 at 5:52 PM |

    It usually requires having a handicapped person in one’s life to become comfortable and to become attentive to how other people treat them. Time and again, I have read how a therapy or companion dog greatly improves a handicapped child’s social life. I’m so glad you had that experience with a lipstick and are now involved in that research program with your daughter!

    ReplyDelete
  4. Lynn Guarch-Pardo | April 16, 2011 at 9:40 PM | Reply | Edit

    Almost two years ago I discovered that people avoid making eye contact with people in wheelchairs, when I found myself very unexpectedly confined to a wheelchair due to a severe attack of a rare autoimmune disease which caused me to become paraplegic in less than 24 hours. While I was being treated in a rehabilitation hospital we went on several “community outings” and it was at that point that I realized that people look anywhere except straight at a person in a wheelchair. I’m sure it is not due to anything except embarrassment at not knowing what is the right thing to say to the disabled person, or discomfort at not wanting to appear to be staring. I was very lucky that within two months I was able to progress from the wheelchair to a walker, and eventually to using a cane, and now I am able to walk unaided. But I have not forgotten the feeling I had while I was in the wheelchair, and whenever I cross paths with a person in a wheelchair I make it a point to look them straight in the eyes and smile or say hello. There’s nothing like “walking in someone else’s shoes” to make you understand their challenges.

    ReplyDelete
  5. Reply | Edit

    It is so gratifying to figure something out and be able to share the information. You are one of the lucky ones—you don’t have to spend the rest of your life in a wheelchair, but you have found a way to join our efforts and help people who do.

    Along with our research project to prove the value of service dogs, we intend to write a book about our experiences and those of the participants. We should be able to impact people with MS, but I really want to take it further.

    Service dogs can help people with neurological disorders, with autism, with post traumatic stress syndrome, with mental illnesses. Service dogs are not pets—they are partners dedicated to making life easier for their human companions. We have to teach the world how to interact with the physically challenged and how to act around a service dog.

    You have helped us jump start our efforts.

    ReplyDelete