Long-Term Illnesses

I am slowly becoming more active in the world of blogging, and have started following a number of blogs that are written by people I don't know.  Recently I came across a blog and the first entry I read was quite profound.  It dealt with one woman's account of how suicide had impacted her life, and how (5 years later) it continues to impact her life.  It immediately made me think about my mother.  My mum is still alive and well, she did not commit suicide, but for the last 8 years she has been battling a very rare illness which shut down her entire central nervous system, leaving her numb in 98% of her body, and unable to control her own motor skills.  That's how she was when the virus first took hold of her.  Today, if you met her you probably wouldn't even be able to tell there was anything wrong with her despite the fact that she hasn't yet reached a full recovery.

My mum is hands down the strongest woman I know.  After 9 grueling months of hospitalizations, painful tests and physical, spiritual and emotional turmoil, the doctors finally presented her with the closest thing they could get to a diagnosis of her condition (it's a super long medical term that I would never get right so I won't even bother).  It's literally a one-in-a-million case, and the best they can tell is it's a virus that attacks the nervous system, and they have no idea where it came from, why she got it, or if it will ever go away entirely, or even come back if it does.  My mother didn't bat an eye, she simply asked "how do I get better?"  The last 8 years have been hell for her.  She had to relearn everything, from walking to driving to tying her shoes.  Her brain was not effected by the virus, so intellectually she knew how to do everything, she just couldn't get her body to do what it was supposed to do, which at it's best was frustrating and at it's worse infuriating and overwhelmingly upsetting.  Simple tasks like getting out of bed in the morning and walking to the bathroom were impossible without help.  It was years before she could even manage to put on her own earrings.

I was still doing my undergrad when this all happened, and so I was away for the very worst of it.  Daily doctor and therapy appointments, weekly tests and evaluations, constant driving back and forth, constant fighting with insurance claims and constant worrying... will she get better? will it be like this for the rest of our lives?  how will we ever afford all of these medical bills?  I would come home when I could, on weekends, and do what I felt I could, which wasn't much.  Usually cleaning the house, buying massive quantities of food and cooking until every dish in the house was dirty.  I would portion out meals and freeze them so that at least when my parents and brother finally got home from long days and late nights they could eat a decent meal.  I was very detached from the situation for a long time, even though I had the conversations and I saw her every few weeks, I will never understand quite the level of sacrifice my dad and brother had to make for her during that first year and a half.

When I moved back home after graduation, the reality of mum's condition began to set in for me.  Her energy was almost nonexistent.  She was constantly exhausted from PT, OT, what little work she was up to, and just keeping up with her insane schedule of doctors appointments.  Her medicine cabinet was overflowing with pills and supplements she was taking, and every meal was a lesson in patience as we counted out the pills she needed to take, and helped cut up her food because she couldn't manage the silverware quite right yet.  She *could* drive again (she couldn't for over a year) but often still didn't because she was so tired, so we were all driving a LOT to get her where she needed to go.  During all of this, I can only remember about 3 times when I saw her break down and give in to the despair that came with the frustration and uncertainty of what was happening to her.  3 times in 8 years... that's simply unreal.


I kept thinking about how I would have handled something like this happening to me... I can't imagine waking up one morning and not being able to feel my hands, or not being able to get my feet to support my weight.  I can't imagine enduring what my mother had to endure day after day after day.  It was a few years before she could even walk through the grocery story without help... years of wheelchairs, walkers, canes and motorised carts... errands took 5 times longer because we had to keep pace with her, and she had to take frequent breaks.  And yet she almost never complained.  In fact, she spent a whole lot of time apologising to us for being such a burden.  I used to get so angry when she would do that because after all, she's my mother.  She could never be a burden.  She spent 20 years taking care of me, how could I not help take care of her when she needed us?

My mother's experience changed my life in so many ways, but I think one of the most important things it did for me was open my eyes to the lives of those who suffer from long term illnesses.  So often we hear of someone who is suffering from some disease or another, sometimes relatively short ones, sometimes life long ones.  When the news first arrives we shower them with love, cards, flowers, affection, fruit baskets, offers of help, etc.  It takes about a month.  Sometimes 2 or 3, for that to stop.  People start to forget that you're sick.  Or they don't know how else to help.  Or they are afraid to try and understand what you're going through.  Or whatever other excuses are out there.  The ones who carry the heaviest loads are the family and closest friends, the next door neighbour who is willing to check in every hour to see if you need help getting to the bathroom because your son is at school and your husband had to go into the office at least one day this week so he wouldn't lose his job.  The friend who calls you up to see if you feel up to going shopping just even for 15 minutes because she knows you've been cooped up in the house for 3 weeks with no real escape.  The husband who nearly kills himself with neglect because he is so focused on meeting your every need that he is willing to give up everything to make you better.  The boss who continues to find ways of getting you medical leave extensions, or sends home small tasks you can handle at home so that you don't lose your pay or insurance.  The nurse who keeps meticulous notes of each visit so that even the slightest change in symptoms can be tracked and analyzed to find the best treatments.  The therapists who begin keeping a pad and pen on their nightstand so when they wake up at night or in the morning with new ideas for treating you they can write them down immediately.  The doctor who sits at the edge of your hospital bed, takes your hand and promises that God will help us all figure this out and beat it.


I have learned so much from my mother over these last 8 years.  I have grown so close to her, and shared so much with her, and I am so proud of how hard she has fought.  I got married last fall and not only was she able to walk down the aisle with my brother, she did it wearing heels... something she thought she would never be able to wear again.  Our family has grown much stronger and closer as a result of her illness, but we have also learned to be a million times more patient with people, and with life.  I have learned that when someone is going through a long-term illness, that sending a card when you first hear the news isn't enough.  You have to keep sending the cards, keep making the phone calls, keep offering the rides or the groceries or the laundry or whatever you have that you can give... because sometimes those first 3 months are actually the easiest... it's the next 7.5 years that are so brutal.


Everyone is different, that is for sure, but I've found that many people suffering from long-term illnesses are desperate to make sense of it, and sometimes that sense comes in helping others understand it, or in trying to be an example and inspiration to others.  My mum often shares with others about her experiences and how they have effected her, in hopes that it will open their eyes to people in new ways, or if they are also suffering that it may act as support and encouragement for them.


We don't know if my mum will ever be 100% recovered, but I do know that this illness will never ever defeat her... and for that I not only thank God, but I pray that her story can bring light and hope to others out there who are facing a lifetime of uncertainty like she has.

A trait you deplore in others.

Hypocrisy and blatant discrimination.  Hands down.  I have no tolerance for it.  I work very hard to not practice it myself and hate if I get called out for doing so without realising it.  I could go into far more detail, but I'm in too good a mood today to start a rant that will lead to frustration :o)

Celebrity crush.

Talk about revealing lol... here we go...

My first celebrity crush that I can remember was Dante Basco... better known as Rufio from the movie Hook.  My friends and I used to watch the movie over and over and chant "Rufi oooooooooo" along with the lost boys.  We'd bawl when he dies. (oops, spoiler alert lol).  When I looked him up on IMDB for a current photo, he's still damn hot.  I may have to renew this celebrity crush...

 

 My Next big crushes were pretty simultaneous as I hit teenagerdom... Howie Dorough from the Backstreet Boys, and Peter Andre.  Yes, I had a serious, SERIOUS boy band phase.

(Howie when the crush started)

(Howie now)

(Peter when crush started)

(Peter more currently)

My BIGGEST celebrity crush is Bon Jovi... hands down.  I love his music and he is soooooooooo hot.  Hot hot hot.  Also I love his music.  Also he's hot.

I also have some mad girl celeb crushes... mostly from the wonderful world of Joss Whedon :o)
Check out these hotties... Eliza Dushku & Alyson Hannigan

(Eliza as Faith on Buffy the Vampire Slayer and Angel)

(Aly as Willow, also on Buffy and Angel)

Of course my most current (and most soul devouring) celeb crush is my husband... Austin Scott ;o)  When I first met him, I had no idea about anything at all country.  We actually had to have a conversation a few months after we started dating where he said "hon, if you hear a song I sing on the radio... it's not mine... it's the original that I cover" because he got tired of me getting all excited about "some other band playing your song!" lol... he is my everything and I love him.  And he's got the talent to be something huge someday... just you watch!  And listen.  Please.  He's on iTunes :o)

What you dislike most about your appearance.

I have a fake tooth.  When I was younger, one of my front teeth was smaller than the others, and a little misshapen, and the orthodontist we had in the Netherlands convinced my folks that we needed to pull it and use my braces to shift my teeth over to fill in the gap.  When we moved to the US our new ortho said that was a terrible idea and shifted my teeth back to recreate the gap.  We couldn't afford a permanent fix (and I'm really scared of getting an implant even if I could afford it) so I have a fake tooth that I wear on a retainer.  Most people have no idea it's fake, no one ever asks what's up with my tooth, but to me it's noticeable and I'm really self conscious of it.  There was a time my retainer got destroyed and I had to get a new one.  It took three days and I would not go into work without it, so I had to work from home (thankfully I had an understanding boss at the time).  I have been late to appointments and meetings because I ran out the door with so much on my mind that I forgot to put my retainer in, and upon realising it had to turn around and go home to get it.  It took me a long time before my husband ever saw me without my retainer, and even then I was really embarrassed for a long time if he happened to see me without it in.

Someday I hope to conquer my lack of funding and my fear and get an implant as a permanent fix, but in the meantime, I continue to pray nothing happens to this retainer (at least until I get insurance again!) and that no one makes fun of my silly tooth... or lack thereof should they ever somehow see me without my retainer in!

Something that really bugs you.

I read and write a lot.  My academic background involved probably more of each of these tasks than most people (barring maybe lit majors), and I'll admit I'm a bit of a snob about it.  That being said, few things grate on my nerves more than really poor writing.  I can be tolerant of the whole text/web writing phenomenon like "where u @?" or "nm l8r" I even use some of that language myself occasionally to an extent.  What I'm referring to is more along the lines of blatant typos.  Come on, web browsers even underline misspelled words now, so there's really no excuse.  Also, using the wrong version of a word.  This is *especially* true when I see it in professional writing.  For example, I just read a facebook posting from Amnesty International that was questioning the "roll of the United States in Pakistan".  The more common offenses are "your vs you're" and "their, they're, there".

It may be superficial of me, but honestly I feel like poor spelling and grammar make for an unprofessional image.  In some cases it can also just make you look dumb (I finally had to message a friend of mine that "texting" language did NOT mean you could just leave every single vowel out of your message because it got to the point where I literally couldn't figure out what the crap he was trying to say).  So basically when I find these glaring errors in other people's writing it bugs me.  I know I'm not perfect, I've found the occasional typo or spelling error myself in my own stuff (even this blog) but in general, just stop it already.  Seriously.