Mystery Lane

Mystery Lane

Thursday, August 21, 2014

Ice Bucket Challenge

Unless you live in a cave chances are you have heard of the Ice Bucket Challenge.  This campaign has been going on over a couple of weeks now in an effort to bring awareness and fundraising to ALS (aka Lou Gehrig’s Disease).  Hundreds of thousands of people have participated, including me.  Recently there has been a lot of talk about how it is just a “fad” or “Why is it only for ALS?  Other charities deserve money too”.  Some have commented they are sick of the videos.  I get it.  The challenge has exploded into something I don’t think anyone planned for.  While everyone is entitled to their opinion, I am going to share mine in the form of a story.  It isn’t pretty or a happy feel good fluff story.  So if you want one of those I suggest you stop reading, now.  If you want a glimpse into what ALS is, keep reading.

My Dad and step-mom Sandy used to live about a ½ hour from me.  One summer we noticed Sandy was slurring her words.  Sandy insisted she was fine.  Dad and I talked about it a few times when she wasn’t around, we were both worried.  In addition to the slurring, she was stumbling a lot.  We thought she might have had a stroke.  She finally agreed to go to the doctor and he ruled out a stroke but didn’t have any idea what was going on.  She continued to get worse without any reason why.  Then my Dad died suddenly.  Sandy was living alone and I was worried about her so I tried to go over to visit more and we had her come over one night a week for dinner.  One night when she was here she tripped, 3 times.  She had become so unsteady on her feet, something was very wrong.  Another night she dropped her plate and chipped a piece out of it.  I still have it.  Every time I use it I think of Sandy and I say quietly to myself “Life is too short.”  It is a good reminder.  Finally, with the help of her brother and sisters Sandy started trying to find out what was happening.  I had been doing a bit of online research myself in an effort to find a diagnosis that might foretell what was going on.  At one point I came across ALS.  I remember briefly reading about it and thinking Sandy was really exhibiting some of the early signs, but there were other things she was exhibiting too.  I didn’t give it much thought.  Then she went to an appointment and the doctor mentioned ALS and wanted to take a chunk of muscle tissue from her arm to be tested.  That night I sat down at the computer and began learning about ALS.  After an hour of reading, I knew what was happening to Sandy.  And I knew she was going to die. 

A week later I took Sandy to the hospital for her surgery to remove the piece of muscle from her arm.  As we were in pre-op the nurse came in to get vitals.  Sandy told her she didn’t think she needed to do the procedure because she had a stroke in her mouth, not ALS like the doctor said.  The nurse looked at me.  I just smiled and shrugged my shoulders.  A stroke in her mouth!  That Sandy could come up with some great stories!  Later the nurse said that the doctors felt pretty certain it was ALS, I responded “So do I.”  A few weeks later the results were in.  It was ALS.

Sandy decided to move back to Colorado, her home, to be near her son and brother.  It was heartwrenching to have her leave.  I wanted her to stay so I could take care of her.  I found a retirement living center just blocks from my house and wanted her to move there.  She was determined to go home to Colorado.  One thing about Sandy was once she got an idea in her head there was no changing her mind.  Off she went to Colorado.  She moved in with her son and he began the gigantic task of taking care of her.  For a few months I would call and talk to her on the phone.  Then she lost the ability to speak.  So I would call and talk and she would just make grunting sounds back.  Finally I stopped calling, it was just too hard for me.  If you knew Sandy you knew this, the woman could talk, a lot!  Sandy was a talker.  Constantly asking questions, telling stories, talking to just talk.  Talk, talk, talk.  I guess if there was any solace in this it was that even though Sandy lost her voice she had talked enough for at least two lifetimes throughout her life!  To know someone as a talker, then watch them lose their voice, is a painful thing.  You don’t realize how powerful a voice is until it is gone. 

I tried to visit as much as I could, but with a child with special needs at home and a husband who worked full time it was hard.  Every time I visited I could see her body deteriorating.  At one point Kevin, Jackson and I went down for a visit.  It was during that visit I realized there wasn’t a lot of time left.  Kevin and I decided that Sandy had to be a priority and I would go to Colorado once a month to spend time with her and hopefully give Mike a little break.  By this point Sandy used a walker to get around and she had a feeding tube.  I always thought it was ironic that I had a child with special needs, but it was my stepmom who had the feeding tube.  I hated that thing.  Sandy was such a pistol about it.  She liked to control the valve, so I would inject the liquid food (which was stinky and sticky by the way) and she would turn the valve on and off.  I never could figure out if she was just messing with me or did it accidently but she would always turn the valve at the wrong time and the liquid would go everywhere, except into her!  She desperately needed that because the once stout little woman I knew growing up was as thin as a rail.  She was at least half the person I grew up with.  Her weight loss wasn’t the only thing.  Watching her use a walker was horrifying to me.  Sandy wasn’t a sitter.  She was always go, go, go.  My Dad used to say “Good god woman just sit down for 5 minutes!”  She was rarely ever sitting.  She was taking the dog for a walk, delivering Meals on Wheels, working at the Senior Center, working at the Senior Center Thrift Store, gardening in her yard, making dinner for the Eagles Lodge, going to Curves for a workout, running errands, volunteering at her church daycare, playing the piano at church.  Sandy was a woman on the go.  Watching her sitting down all the time and needing a walker to move around was awful.  My last two visits with her she was in a wheelchair.  Every time I wheeled her around in it I had to hold back tears. 

Sandy didn’t like to go out and about anymore except to the movies.  The 6 months before she died I went to see more movies than I probably had in 20 years combined.  On the way home she always wanted to stop at McDonald’s and get a cheeseburger.  Although she wasn’t supposed to eat or drink because she could choke to death she just wouldn’t give up trying to eat.  Even though I knew she shouldn’t be eating I would still stop and get the cheeseburger.  I can’t imagine never being able to eat again.  I knew it was hard for her to accept so I just went along with her.  She was dying and I wasn’t going to say no. 

The last couple of visits with Sandy I knew her life was ending soon.  She had become increasingly weaker and spent most of my visits just sleeping in bed.  Her breathing was more labored and the light was gone from her eyes.  The second to the last time I saw Sandy I sat down with her and said my goodbyes to her.  We both cried.  She knew it was coming and so did I.  On my last visit to see Sandy I brought Jackson with me.  She was amazed at his progress and kept clapping every time he sat up by himself.  She sat there just watching him and smiling.  She died two weeks later. 

I’ve left a lot out of the story because if I wrote it all it would be 10 pages long.  There were a lot of things that ALS did to Sandy.  It robbed her of so much and then took her life.  Watching ALS kill Sandy those last 6 months is something I will never forget.  It was incredibly painful to watch.  I have no doubt watching someone you love die from any disease is painful.  The sad truth is that I never really had heard anything about ALS.  I didn’t even know it as ALS, I knew it as Lou Gehrig’s.  When I tell people about Sandy and how she died, typically if I say ALS I get a blank stare.  If I say Lou Gehrig’s Disease they have at least heard of that, but most don’t know anything about it.  That’s what this ice bucket thing is about, bringing awareness.  While it is estimated that approximately 30,000 people have this disease at any given time in our country, it is a low number compared to the 50,000 a year diagnosed with Parkinson’s or the 15 million with cancer.  That is why this campaign has been so amazing.  How many of you had heard about Lou Gehrig’s?  How many of you knew it was known as ALS also?  How many of you knew what ALS was?  Have any of these answers changed since the campaign?

Estimated funding for research for ALS is $40 million, Parkinson’s $139 million, cancer is in the trillions.  While I get that the more people with a disease the more funding comes with that, I just have to say, when you know someone who has died from ALS, you want the same funding as others, you want the same recognition of that disease, you want people to know about it and to be motivated to do something about it.  You want their story told. 

So while some may be critical of the campaign and the recognition, I am loving it.  ALS is out there, reaching millions, earning millions for research and support.  I have watched countless ice bucket videos these past couple of weeks and every one of them make me smile.  It makes me think of Sandy, I wish she was alive to see them.  Sandy, I have no doubt, would want everyone to know about ALS and what it does to those who have it.  I know I do.  I realize that to some the challenge may just be a fun thing to do.  Fine.  Let that be it.  But to many it has brought ALS into the forefront and has earned the recognition of many.  So keep those videos coming, they bring me a little joy every day.  But most importantly take a minute to learn about ALS and the people that have it.    

Wednesday, August 13, 2014

He's Jackson, Not Polymicrogyria

I’ve read a couple of articles lately that parents and doctors have written about seeing the child, not their disability.  It is sad to me that these articles even need to exist.  It does bring up the discussion though.  A discussion that I have been secretly having with myself for a while now.  I have it pretty much every week at Costco.  I call it the “Costco People Meter”.  Is the world in a good place?  Is the world a negative place?  I get my answer by the looks Jackson gets while shopping and eating at Costco.  If we get stares and strange looks, then I know the world is in a bad spot.  If we get smiles, people stop and say hi and/or mention how cute he is, then I know the world is good and people are kind.  Mostly I have found the world is good but there have been negative days for sure.  Then Monday Jackson and I went to Costco.  Just a typical day.  And we found that the world was in a spectacular place.  Our typical trip to Costco turned into so much more.

When we got there the eating area was relatively empty so I wheeled Jackson up to a table to save a spot for us and I got in line to order food.  He was close to me so I could watch him.  I noticed a family a few people ahead of me in line.  I noticed them because they seemed really loving toward each other.  It was a father with 3 sons and a daughter.  All the kids were in their late teens, early 20’s.  They were all hanging out with their arms around each other and you could tell they were very close.  Their Dad finally went up to order food and the boys headed over to the table next to Jackson.  Then one of the boys saw Jackson, got up and went and sat at our table.  He said “Hey little man, how you doing today?”  I just watched.  Then another one of the boys came over to our table.  He saw Jackson’s drooling messy face (new teeth coming in), got up and went to get napkins, then came back and wiped his slobbery chin.  I laughed and thought “Who does that?”, it was such a kind gesture.  I got Jackson’s hot dog and headed to our table thinking that once I got there they would probably leave.  Thankfully they didn’t.  The first boy who sat down was enthralled with Jackson.  He asked his name and the whole family chimed in to say hi to Jackson.  He asked all kinds of questions about him.  How does he communicate?  How old is he?  What is his favorite food?  The mom finally showed up with her cart of food, came right over to see Jackson, gushed about how cute he was and how he reminded her of Dayton.  I asked who Dayton was.  Dayton is the best friend of the boy who sat down first.  That was why he sat down next to Jackson.  He said he reminded him of Dayton, who has cerebral palsy.  They told me how Dayton has been doing triathlons and even Iron Man’s with the help of a partner.  We sat there and talked the whole time Jackson ate.  I found out they had just flown in from Alaska, the older brother was getting married the next day.  The whole family continued to fuss over Jackson and comment on how awesome and fun he was.  Then they asked if they could have their picture taken with Jackson.  They wanted to have pictures with the cool kid at Costco.  We finally had to reluctantly leave the wonderful Alaskan family.   

Meeting this kind family reminded me that there are exceptional people out there that don’t see a kid in a wheelchair, they see a real person with love and happiness to share.  They didn’t see Jackson as broken or different.  They just thought he was a cool, fun kid.  Which he is.  Jackson has a personality, his sounds are his way to show his happiness, his sadness, his anger.  His laugh and smile bring inexplicable joy.  If everyone looked past that wheelchair they would be graced with the opportunity to spend time with an amazing person.  His life is valuable, it isn’t a second rate existence.  He loves attention, so say hi to him, even if he doesn’t say it back.  Look into those beautiful blue eyes of his and see what a great soul he has.  The kid just rocks.  He is the best gift I have ever experienced.  He is Jackson, a 6 year old little boy who loves Costco hot dogs and being tickled.  Just like a lot of other 6 year olds. 

If everyone would just remember what Wayne W. Dyer said “Change the way you look at things and the things you look at change” then I imagine those with disabilities would forever be accepted into our society. 

*Here are links to videos about Dayton and his first triathlon and his Ironman.