Wednesday, December 22, 2010

silent heroes; unsung heroes

People that overcome serious hardship or disability or even pain with a smile are amazing to me.
My boss was telling me about his mother-in-law. She was diagnosed a couple years ago with ALS (Lou Gehrig disease).  That is a really terrible disease. I've known of about 2-3 people with it, family of friends, or friends of friends, etc. Basically most people that get it end up not being able to control any of their muscles and end up totally helpless and dependent on others.  Their minds are fine, but trapped in a useless body. My boss was saying his MIL, we will call her millie to make it easier, was now at the point where she has lost use of both arms, legs, etc. Last thanksgiving Millie was there, and still able to walk and talk and get around.  You could tell something was wrong, but not a major issue yet.  A year later, she is in a chair, the daughter has put an elevator in the house so she can ride up and down, she can't control her power chair anymore so someone else has to do it for her. They put her in the elevator and send it up and then climb the stairs to meet her. He was telling what a good sense of humor she has.  How something happened and the sister put her mother in the elevator but something happened on the way up and Millie was forgotten in the elevator.  She could hear everyone laughing and talking but couldn't make a sound to call attention to herself.  They figured she was there about 15 min before another sister thought of her, and asked where "mom" was. How frightening would that be for most people? or how pissed off to be left? Apparently she saw the humor in it.  I asked how she communicates since she can no longer speak and can only grunt.  He said she has something called eye gazer? Like a screen with either letters or words, and you look at it and blink and it is smart enough to identify what it is you are looking at and uses that to write words.  He said she has I guess the equivalent to a blog on a caring and sharing website.  She writes long journal entries much like the story of being left in the elevator regarding different things that happen day to day.  The entries are full of humor. He said she is an amazing woman.  I agree. How easy would it be to just give up. Become angry or bitter? But to face life with humor, that is amazing.
Another hero I'll mention was my dad.  He lost the use of his left arm when he was in his 20's. After returning from WWII. He was in college to become a surgeon. He'd been a med-tech during the war. He had a motorcycle accident. Hit and run. They didn't expect him to make it.  He was in the hospital for several months and they didn't think he would make it. The family was called. He went in a healthy young man that probably weighed 140? he dropped below 90 during his stay.  After he got out, went through rehab. He met my mom. He changed his career path and instead of becoming a surgeon, he continued to college and ended up getting his phd and became a professor teaching pre-med students.  He could do anything.  I remember growing up thinking he could do anything. He was able to do anything anyone else could with the exception sometimes of needing someone to "lend a hand" and hold something.  He could tie his own shoes. I'm not sure I could do that one-handed. He coached my brother's little league and hit balls to the various positions and could play catch, anything anyone else could do, my dad could do it too.  I never thought much about it. My brother has said since that he most likely had to deal with some extreme pain. phantom pain, etc.  He never considered himself handicapped in any way.
That was part one.  Part two, in 2003 he had a flu shot in the fall. As a result he ended up contracting Gilliam Barre. He was medivac'd to a hospital, and they ended up giving him plasma to stop the progression.  His hand (only one remember) and feet and legs were paralyzed. GBS starts by paralyzing the extremities. Then it progresses in to the trunk.  Then eventually to the heart which is of course a big muscle. He fought back. He went to a rehab hospital where they normally treat stroke victims located about 1 hr from where my folks lived.  He stayed there a couple months.  He learned to walk again.  To feed himself again. He made it back.  Not as good but he fought and came home. Unfortunately kidney infections and urinary tract infections plagued him.  Some of that was due to needing a catheter (another side-effect of GBS). His immune system was weak, and couldn't fight the infections, which usually ended up meaning another stay in the local hospital.  Each set back was harder to overcome, he would lose ground.  Suddenly my dad looked old.  Looked feeble.  Looked like he might not be superman after all.  But his pride.  He had so much pride.  He ended up with a wheelchair at the house, he walk short distances but it tired him so.  He could transfer himself from the chair to the toilet, to the bed, to his recliner etc.  My mom would have been too weak to do that for him.  He ended up with a bed sore on his bottom that required operation due to an infection.  Unfortunately they had to remove so much that he had to stay in the hospital, then ended up moving into long term care.  He so wanted to keep working on rebuilding his strength.  Insurance would no longer pay for PT or OT. He tried to get the aid's to help him (they did the best they could) to do some of the exercises. But it wasn't the same. And for whatever the reason, he kept losing ground.  I say GBS (and the flu shot that started it) was the cause of death. The official reason was myocardial infarction.  Fancy way of saying his heart stopped.
My third example of an unsung hero is my mom.  The entire time my dad was struggling, she was there beside him.  When he was in the rehab an hour away she was driving back and forth to be with him. When he came home and couldn't sleep in the bed because he didn't find it comfortable, she too slept in the family room in her recliner so she could be close by to hear him in case he needed her. When he went back in the hospital she continued to put her life on hold and spent each day with him. When he would suffer with hallucinations from the antibiotics, she looked past it. He was never a cruel man. He was always full laughter, and smart, and kind.  The antibiotics made him a little crazy.  He was sure there was a conspiracy that someone was out to kill him.  He was in a fantasy world mixing the past and the present and some fantasy tale of who was involved and what was going on.  Several occasions he would beg mom to take him home, that they were after him.  At the worst, he decided she was in on it.  Was mean and spiteful.  Spoke to her nasty in front nurses. Embarrassed her (for him) completely.  He even called 911 and then called a couple former students in the middle of the night to ask them for help.  He would call mom at night wake her from what little sleep she got to beg her to come get him.  She ended up having to take the phone away from him so that he couldn't use it at night. She took to sleeping at the hospital in his room.  He had a roommate, so there was no spare bed, the one chair for visitors was uncomfortable to sit in much less to sleep.  But she was there. Day after day. Night after night. She neglected her health because she claimed she didn't time to go to dr's or do those things. He needed her.  She's been lost since he died.  They were married for almost 55 years when he died.  Now her health isn't the best, and I wonder how much longer she will be here.


Diane J Standiford said...

I agree--those are some true heroes. Since my MS, I have come to know the disabled community--it is much larger than anyone imagines. My 100 Chronic Illness Blogs--heart wrenchig to read. So muh suffering in the world. You have have more than your share. Skip or not, you have your parent's genes and are a hero to me.

MS Day Dreamer said...

Thanks Diane, I agree there is way too much suffering in this world. I don't know that I have more than my share. It is what it is.
I do have my parent's genes. The family joke is that we (me & my brother) got a double dose of stubborn streak - from each of them. I like to think it is more determination or persistence. But yes, sometimes it is just plain stubbornness. My mother likes to repeat what a good friend of hers called it - she has a wonderful independence. lol. I'll tell another story on my mom, but I think I'll put it in a post instead of a comment. After all, I seem to be on a roll regarding posting lately.