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Saturday, August 25, 2012

A Proud Mom

I'm letting my son, Matt, make this post.  He is in the process of writing his college application essay, and this is what he has written so far.  It really touched me, and I asked him if he minded if I shared it, so here it is!

People can have a profound effect on each other, and can influence each other's lives in ways they don't expect.  People have affected my life greatly, above all, my parents.  They have been there for me since the day of my birth, and now that I am applying for college, they are doing everything they can to help me with applications.  Not only have they influenced my childhood, they have influenced what I want to do with my life.

My parents are both afflicted with neurological disorders.  My mother has fibromyalgia, a horrible disorder which causes crippling pain.  My father suffers from spinocerebellar ataxia, a hereditary disorder which causes the cerebellum of the brain to atrophy.  With it, it takes away fine motor skills and balance, and due to this disease, my father is now in a wheelchair.  I have made it my life's goal to become a neurologist, and hopefully discover cures to these diseases.

Because of my parents' diseases, a great deal of responsibility has been laid on my shoulders.  I take care of them, doing the things they can no longer do.  I cook, clean, drive, and do many other things that they are incapable of.  I attempt to bear the responsibility in stride, but I am human, and it is often hard.  I get angry, though I know it isn't any fault of theirs.  I love them, and the anger passes.  My parents' conditions have rendered them incapable of working.  We live on Social Security Disability, a difficult life.  My brothers and I often go without the things other people our ages have; cell phones, computers, video games.  My parents do the best the can, however, and for that I appreciate them.

I have no idea how my life would be different if my parents were not the people they are, but I do know that I would not be the same person.  I have been shaped by the trials and tribulations of my parents, and am stronger because of the things we all have faced.  For that, I am grateful that my parents are who they are.



I have to tell you that this essay brought tears to my eyes.  Matt may feel that he has been shaped into the wonderful person he is by having us as parents, but we have been blessed a hundred times over by having him as our son.

Thursday, August 23, 2012

Courage

Since my knee surgery, I have had such a rough time of it.  I'm not recovering the way I thought I would, for starters.  I really thought that I was doing so well, and then I went to the doctor and he knocked the wind out of my sails by telling me how wrong I was in that regard!  He put me on bed rest, and here I sit, enduring what I've come to think of as forced captivity!  On top of having my wings clipped, my pain levels have gone through the roof!  My back hurts worse than it has in a very long time, and I keep cycling from one fibro flare up to the next.  It's not a lot of fun, I promise you!

I'm not going to lie to you and tell you that I'm handling this well.  I've been whiny and weepy, and I've had a daily pity party.  I'm tired of feeling this bad, and I can't imagine having to live this way for 30 more years.  That being said, I am here for the long haul!  I will keep fighting the decline of my body with everything I have, because, as the saying goes, I'm not gonna let the bastards win!

Recently, I have heard a lot of people talking about committing suicide.  The common thread that runs through the talk is something along the lines of, "If I was brave enough, I would kill myself."  Brave enough?  If you had the courage?  These are the most cowardly words I think I've ever heard in my life!  Trust me, it doesn't take courage to check out.  It takes courage to keep living this life with the chronic pain and everything that goes with it!

I know what I'm talking about because a few years ago, I tried to commit suicide, and I was a complete failure at it, and I thank God everyday for it!  It didn't take courage for me to decide to check out.  It took cowardice, fear, and extreme selfishness.  Sure, I wouldn't be here to deal with the physical and emotional pain that I live with everyday, but wow!  What a mess I would be creating for my loved ones to live with!  How very selfish of me!

It takes courage to live every day with the misery of chronic pain. It takes courage to face the people who don't believe the things that we go through day in and day out.  It takes courage to fight through the exhaustion that this condition forces on us.  It takes courage to reach up through the darkness of depression that descends on each and every one of us.  It takes far more courage to live.

My suicide attempt was almost five years ago, and my children are just now starting to trust me again.  Not long ago, I was having a day when I was wallowing in self-pity.  I wasn't going to commit suicide, in fact it was the furthest thing from my mind.  But when I finally unlocked the bedroom door and came out, I discovered that one of my children had hidden my pain medication, just in case.  How could I have done this to my precious babies?

I spent two weeks in a mental institution following my suicide attempt, and it was the best thing that ever happened to me.  And, if I ever have those feelings again, I will immediately check myself back in.  There is no shame in seeking help for the black hole of depression, but there is shame in making sure that you force those who love you straight down in that same hole.

I was convinced that no one loved me.  I was convinced that they would be better off without me.  I was convinced that they wouldn't miss me.  I was convinced that their lives would be so much better off, that they wouldn't even mourn my passing.  I couldn't have been more wrong about each and every one of these thoughts.

If you truly want to be brave, then you have to keep fighting against the demons in your life.  You have to realize that you are important to the people in your life.  You have to understand the damage you will do to those who truly love you, and believe me, they do truly love you.  Be proud of the fight you are fighting.  Regardless of the doubters and haters around you, you are stronger than they will ever be.  And your life matters, more than you will ever know.

Monday, August 20, 2012

Be Careful What You Wish For

Because of complications from my knee surgery, I have basically been on bed rest for the last few weeks, or, as I call it, forced captivity.  I am supposed to do as little as possible, in order to make sure that I don't spend that much time on my legs.  At first, I thought this sounded wonderful.  I have told you that because of my husband's condition, almost all of the errand running and things of this nature falls on my shoulders.  There were days when I thought that I couldn't move another inch after a busy day, and I resented the fact that everything fell on me.  I wished that for even a few days, I could have a true break from all the things I have to do.

As the title says very plainly, be careful what you wish for!  I am absolutely going crazy right now.  I'm sick of looking at my house.  I'm sick of the constant mess and clutter.  I'm tired of expecting three people of the male persuasion to do things the way I want them done.  Honestly, I never think that I do enough.  I feel guilty that I can't do more for my boys.  I feel guilty that my house is never as clean as I would like for it to be.  I feel guilty about being in pain all the time.  I'm starting to realize that I do more than I have given myself credit for.

Right now, I would give anything to be able to walk down my back steps, get in the car, and just go drive around by myself.  I am one of those people who needs some time to herself almost everyday.  Since I had my surgery, I am never alone!  For some reason, I can't sleep in my bed anymore.  The only place that I am comfortable is sitting and sleeping in my recliner.  I have people around me 24 hours a day!  I love my family, but I wouldn't complain if they all vanished for about seven or eight hours.

I am also noticing that my back, and other muscles, are hurting more than usual.  I am attributing this to the fact that I am not moving around nearly as much as I used to.  I won't be running a marathon.....EVER!  But I do know that once I'm released from this forced captivity, I am going to try and be a little more active.  I think this will help me in more ways than one.  I am so tired of sitting around, doing basically nothing.  It is what I wished for, but apparently, it wasn't what I wanted!

Wednesday, August 15, 2012

Fear

I have a confession to make.  I am living my life in fear.  Now, you wouldn't know it to look at me, and you probably wouldn't even guess it if you sat down and had a long heart to heart talk with me.  But there it is...out in the open.  I am living my life with a hearty helping of fear.  Now, this is a closely guarded secret, but I am realizing that it is our secrets that can make us sick, emotionally.  I'm trying to let go of some of those secrets.


As I have mentioned before, I am going to be 50 very soon.  When I was growing up, and I saw people who were my current age, I assumed that they had it all together, and they couldn't possibly be afraid of anything.  They seemed to be so much wiser than me, and they seemed to have all of the answers.  Now, I'm thinking that maybe they didn't have it quite as together as I thought they did.

There are so many things that I'm afraid of right now, and I really don't have any of the answers.  The purpose of this isn't to give you answers on handling the fear.  I think the purpose is sort of like sending a probe into outer space, trying to find out if I'm all alone in feeling this way.  So.  What are some of the things that I am afraid of?

I'm scared of my own bad health.  I'm afraid of the thought of living in this kind of pain for the rest of my life.  I'm afraid of living the rest of my life in the limited way that I'm living it right now.  I'm afraid of getting worse than I am right now.  I'm afraid of not having anyone to help me when things get worse.  This is just a sampling of the things I am afraid of regarding my own health.

I'm afraid of my husband's bad health.  The condition that he has is hereditary and progressive.  He is already confined to a wheelchair, he can't drive, he can't get in and out of our house without help.  What is going to happen 5, 10, 20 years down the road when he needs more help than I can provide?  How do you tell your husband, who you love, that you can longer care for him and you are going to have to put him in a nursing home for his own good?  The thought of this scares me to death.

I mentioned that my husband's disease is hereditary.  There is a 50/50 chance that our sons will develop the condition in time.  We have three beautiful, healthy, active boys.  This condition usually strikes in the prime of life, between the ages of 35-45.  I'm terrified of the effect that it will have on them, their wives and their children.  I know how hard it's been for my husband, and for me, to deal with.

These are just a few of the things that I'm afraid of.  I don't have any answers, and I don't know how to get rid of these fears.  There are times when I wake up in the middle of the night with that breathless feeling you get on a roller coaster.  Sometimes, I think that the answers to these questions just aren't out there.  But, despite the fears that I have, I refuse to let them rule my life.  We have learned to coexist with one another.  I have learned that I have to keep going, whether the fear is there or not.

So, now I have released that probe and I want to know what you are afraid of.  Are you afraid of health problems?  Are you afraid for what the future holds for your children?  Are you afraid of how you will take care of your aging parents?  What are you afraid of? Share with me!  There is strength in numbers, and maybe someone has the answer to help you with one of your fears, and maybe you have the answer to help me with one of mine.

Saturday, August 11, 2012

Your Disability Doesn't Define You

I am disabled, but that isn't who I am.  I have fibromyalgia and suffer from chronic pain due to spine defects.  I also have osteoarthritis in most of my joints, with my knees, back and hip being the worst.  I have days when walking to the bathroom is the most that I can do in a day.  I have days when I sit in my recliner, crying because the pain is so intense that my medication seems like a placebo.  And, I have days when I feel like bargaining with God to just take it all away.

Not a very pretty picture, is it?  And while I live with all these issues, I refuse to allow these things to define who and what I am.  I'll be honest with you.  I've always believed that everything we go through has a purpose.  But I am hard pressed to figure out what the purpose of this suffering is.  That being said, I love my life and I wouldn't trade it.  I am disabled, but I don't let it define me.

I am a woman, a daughter, a sister, a wife, a mother.  I am a friend, and I try to be a comfort to those who need comfort.  I love my family with all my heart, and they love me in return.  I love a good laugh, and I even love a good cry sometimes.  I am still learning, despite the pain that I deal with.  I refuse to allow this thing called a disability to become the only thing I live with.

Have I had to change my life because I have a disability?  The short answer to that question is yes, absolutely.  But the real answer is longer and more complex.  The changes I have made have been more superficial than it may appear at first glance.  One of the first changes that I made was swallowing a little pride.  I used to go the grocery store, or Walmart, and walk the store.  I would be in excruciating pain when I was finished, and the rest of my day would be shot.  So, now, I get one of the riding scooters that the stores provide.  I have learned to ignore the stares of other shoppers.  Because I have adapted to a new way of doing things, I am still able to go to the store instead of always having to depend on someone else to do it for me.

Because of my disability, it is difficult for me to make plans to do things with my friends.  And even though the person I am inside hasn't changed, my physical ability and stamina are no longer the same.  Some friends can't handle this change and drifted away.  Others left because they couldn't depend on me.  But I still have a wide circle of friends that I spend time with everyday.  Now, my socializing is done primarily online.  But through this, I have made life long friends.  We may have initially come together through our disabilities, but we stay friends because of who we are.

I am still the same mother I was when my boys were babies.  I still love them with the same intensity that I did the first time they were put in my arms.  I am still able to wipe away their tears, share a joke, and cheer them on as they grow into young men.  They don't see me as a disabled person, they simply see me as mom, and I wouldn't have it any other way.

Despite whatever disabilities we may have, we are still the same person we always were.  Who we are is much more internal than external, and it is important that we embrace that part of our selves.  In the long run, does it really matter if you can walk from the back of the parking lot to the front?  Not really.  Does it really matter if you can sit in an office for eight hours a day?  Not really.  The things we can or can't physically do don't define who we are.  That definition of self comes from the inside.  Love yourself and your family.  Show compassion to others.  Learn to forgive.  It won't make it easier to walk across the room, or do a load of laundry, but it will make you a happier person in the long run.

Wednesday, August 8, 2012

A New Definition of Friend

I've never been a person with a huge circle of friends.  Because I have dealt with social anxiety disorder most of my life, making friends has never been very easy for me.  On top of that, I have a mild form of agoraphobia and large crowds of people make me incredibly uncomfortable.  I'm great at small talk, but it's difficult for me to open up to people, and you can only talk about the weather for so long!

In addition to this, dealing with the limitations of chronic pain make friendships difficult.  At first, people are very understanding and they want to do what they can for you.  After a while, however, it gets very hard to be a friend to someone you can't always depend on.  After you cancel on a person so many times, eventually, they just stop calling.  And while it hurts to lose friends due to something you have no control over, I can understand why people drift apart.

After living with chronic pain for quite awhile, I had sort of accepted the fact that I was never going to have close friends any more.  I told myself that my husband and sons would be enough.  But the truth was that I really did miss that relationship of having a good girl friend.  I missed having someone I could talk to about life in general, and having someone to share a laugh or a cry with.  I missed having someone to just hang out with.

Thanks to my lovely sons, I eventually joined the 21st century and joined Facebook.  Wow!  What a fantastic gift my sons gave to me!  At first, I simply used it as a tool to catch up on old friends that I had lost contact with over the years.  It was so nice to learn how my old friends lives had turned out over the years.  Never in a million years did I think I would make new friends!

After being on Facebook for awhile, I was diagnosed with fibromyalgia.  I started out looking for groups which could provide me with information about the condition.  Well, I got information, but I also developed a whole new group of friends!  I met people from all over the world who were dealing with the same things that I was dealing with.  I met people who actually understood what I was feeling, both physically and emotionally.

I belong to a group for people who suffer with chronic pain, and I have made some of the best friends I will ever know.  Some, I have met in person, and others I will probably never meet in person.  But these people know me better than any other friends I have ever had.  They have opened their hearts and lives to me, and I have done the same for them.  Through these groups, I have discovered a new definition of friend.

I am able to be brutally honest with these new friends.  I don't feel the need to say I'm fine when asked, "How are you doing today?". What a blessing!  And because we are from all over the world, there is always someone around to talk to when things aren't going so well.  I have also been blessed with the ability to be there for others when they need a shoulder to cry on or a friend to share a laugh with.

I may never meet many of these people in the "real" world.  I don't think that I will ever be able to travel to Australia or Europe or India.  But I know that some of the most wonderful people on Earth live in these far flung places, and I know that they love me as much as I love them!  The world doesn't seem to be quite so large anymore, and I don't feel quite so alone anymore.

Thursday, August 2, 2012

The New Discriminatory "OK"

Discrimination of any kind is wrong.  However, there always seems to be a group of people who are discriminated against that we have a tendency to close our eyes to.  At one time, we closed our eyes to the discrimination against African Americans, and many still turn their heads to discrimination against those whose sexual preference is different from their own.  At the moment, it seems to be OK to discriminate against the handicapped.

Now, those who are visibly disabled are less likely to be openly discriminated against.  However, I know many people who have been confined to wheelchairs who haven't gotten jobs which they were more than qualified for.  We even have laws making it illegal to discriminate against the handicapped.  But that doesn't mean it doesn't happen every single day.

Not long ago, there was a group on Facebook, urging people to actively discriminate against people with handicapped parking permits.  They were even trying to get people to steal the parking permits out of people's cars, and to steal the handicapped parking signs out of parking lots!  I think everyone would probably agree that this is blatantly wrong.

But what about those who discriminate against the handicapped in more subtle ways?  The other day, a friend of mine was running to the grocery store to pick a couple of things up.  She has to use a cane to walk, and frequently has trouble even walking with the cane.  As she got out of her car, in a handicapped parking space, an older man proceeded to stare at her and direct rude comments at her.  She was shocked and hurt, and didn't respond to his obvious disrespect.

I have experienced things like this myself.  At one point, someone loudly said, "If you weren't so fat, you wouldn't need that handicapped spot."  The pain, and shock that I felt at this was overwhelming.  But I didn't respond.  I held my head up and went into the store, but on the inside, I was humiliated.  I have also had to park yards away from a store, because people who were perfectly fine had taken most of the handicapped parking spaces.

When did it become alright to treat people with disabilities in such a shocking manner?  When did we quit treating people with basic human decency?  When I was a little girl, my mother always told me that if I couldn't say anything nice, then don't say anything at all.  I've tried to live by this rule, and I've made sure that my children understand it.  I would never have tolerated rudeness like this when they were little children.  Why do we tolerate it from adults?

I have decided that from now on, I'm going to stand up for myself. If someone feels the need to make a rude comment about my invisible disability, I think I'm going to feel the need to educate them about fibromyalgia, spondylosis, sciatica, and a host of other problems.  If I see someone making comments directed towards others who are disabled, I'm going to stand up to the bully, because that is exactly what they are.  I know that not everyone will feel comfortable with this, but I think it's time that we bring our invisible disabilities out into the light of day.  It's time we let the world know that it is most definitely not OK.