"It Must Be Nice"

You have no idea, but I know what you mean

“It must be nice to not work.”

“It must be nice to have insurance pay for that.”

“It must be nice to be rich.”

“It must be nice to be retired.”

“It must be nice to have no kids in the house.”

“It must be nice to have a good husband.”

These are all things I’ve had said to me multiple times in my life. I don’t know why people feel the need to express their thoughts (envy? bitterness?) in this way. I wish they’d stop. But more than that, I wish they knew how wrong they are. I'm not often this confrontational in my writing, but I really think this is something that needs to be addressed.

“It must be nice to not work.” I don’t work because a disability and a broken system prevent me from working. I’ve had years of pain and lost mobility and surgeries in my future. You have no idea I have crawled across the floor because it hurt too much to walk.  I have been unable to pick up my newborn because my hands were too weak to hold her safely. I have used a shopping cart as a walker. I’ve been told I’m faking it. I’ve had a doctor tell me if I need a handicap placard that badly, then I should just get joint replacements instead of a piece of plastic for my car. You think I don’t want to work? Share my ideas? Be a part of a team? Be given accolades and promotions for my successes? You think it’s fun to have talents and have no outlet to use them? But yeah, I know what you mean.

“It must be nice to have insurance pay for that.” My insurance helps to pay for very expensive medicine that makes it possible for me to live a life that looks as “normal” as possible. You have no idea it allows me to not be in a wheelchair. It allows me to drive. It allows me to do mundane chores instead of hiring someone to help. And it costs us money every month to pay for that insurance. But yeah, I know what you mean.

“It must be nice to be rich.” I’m not sure what the definition of “rich” is, but apparently we’ve arrived. And I laugh at this the most because it’s not even close to the truth. We raised seven kids. We paid child support for years. We spent years counting pennies. Our kids didn’t get family vacations. They didn’t get a car when they turned 16. There were no college funds for them. You have no idea we instead spent five years figuring it out so my husband could finish his degrees. We moved a lot for job opportunities. We paid off debt. We said “no” to fun and “yes” to responsibly. We sold things to have money to pay for kids’ gifts and field trips and yearbooks. And now those kids are raised and we have an even tighter budget. But because we have some nice things, we’re rich? Few people saw the struggles. They only see today. It took sacrifice to get here. We aren’t rich. We’re trying to be smart. But yeah, I know what you mean.

“It must be nice to be retired.” My husband is ten years older than me. So I’m reaping the benefits of retirement life sooner than some of my peers. But it’s not without its own consequences. You have no idea that our income changed dramatically. We had to make decisions for twenty and thirty years from now and hope we’re choosing correctly. We had to find a new routine. We had to adjust to all of our time being together. It is nice to be retired. And it can be boring and lonely and annoying. But yeah, I know what you mean. 

“It must be nice to have no kids in the house.” Our kids. This is such a complex, loaded, emotional topic. When they’re little and you’re sleep deprived and they’re sick all the time and you don’t know if they’ll need therapy after all the mistakes you think you're making on a daily basis...you can’t wait for them to be grown. And teenagers are a test for sure. But what people don’t know is that there were years of having more kids than bedrooms. There were more birthdays than budget. There were more mouths than groceries. You have no idea we had years of distance as some of them needed space to work through their own experiences. We haven’t had all seven kids in the same place for almost fifteen years. So while I enjoy the relationships I have with my adult children - and it’s nice to have time alone just me and my husband - I long for the days when we were all under one roof. When we could drive each other crazy and still smile at sleeping heads before doing it all again the next day. I’d love a Thanksgiving with every one of my children around the table. But yeah, I know what you mean.

“It must be nice to have a good husband.” I’ll tell you, it’s not nice having a good husband. It’s AMAZING!!! But the people who say this to me don’t know the pain I went through to get him. The lies, the infidelity, the refusal to work, the rejection of my small children, the anger, the harassment. You want a good husband my way? You have no idea what I went through! You’ll need to leave with nothing and live in low income housing. You’ll need to get food stamps. You’ll need to have no car for months. You’ll have to have a very limited support group in a small town with few resources. You’ll need to go to court over and over and over to prove lies against you have no merit. And you’ll have to explain to your children why the man who created them wants nothing to do with them. It was NOT nice going through those years. But yeah, I know what you mean. 

What you mean is “It’s not fair that I see you having/doing/being whatever I feel is missing in my life.” 

What you mean is “I want to make you feel guilty for what you have and where you are.”

What you mean is “It never occurred to me that you have a story of pain and struggle that might make me think differently if I cared enough to ask and listen instead of put my fear of failure onto you.”

I don’t owe anyone an explanation of my life. And yet I feel obligated to explain when people make these flippant remarks about my life. I feel obligated because I have tried to use every bit of my life to not only encourage others, but to also show them that I can relate because I have been there. I do not gloat in my material possessions. I glory in my journey. The Lord walked with me through every one of my difficulties and used them to grow my faith in Him. And He grew my compassion. My perspective. My ability to look for the silver lining. Nothing I’ve gone through has been wasted.

But what strikes me the most is that many of these statements come from people who have not experienced going hungry or getting divorced or having estranged children or learning to live with a disability. How sad is it to make a comment that can cut so deep with no depth of awareness. 

“It must be nice to be employed.”

“It must be nice to be healthy.”

“It must be nice to have everything you need.”

“It must be nice to have the same job for forty years.”

“It must be nice to have your children nearby.”

“It must be nice to never have been divorced.”

These are things I’ve never said. Never once in all of my lack did I ever look at others and think that what they had was undeserved just because I didn’t have the same. The two are not connected. 

I’m sure some people say it and never give it another thought. There was no intended malice. But the damage is done nonetheless. So if you’re reading this and you’ve made a comment like this, stop it. It’s judgmental and trite and unnecessary. Instead, be excited for them. Ask them their story. Listen more and keep score less.

If you’re in a season (or two) of doing without, I want you to know you aren’t alone. There are things that can be growing you now if you’ll let them. Your compassion, your perseverance, your faith: things that cannot be measured by the world’s standard of riches. In those dark moments, do not forget to look for the silver lining.

 

“I have a place to sleep.”

“My kids are healthy.”

“I’m safe.”

“I have a friend.”

“I have Jesus.”

These are things I have had to tell myself.  I had many times I would remind myself of the good I had even in the midst of my circumstances. Even if it’s only one thing, I promise you have something good right now.

Don't be ashamed of where you are. In the struggle or on the other side, you own it. You keep working toward improving yourself and your situation. Do not let anyone guilt you for successes, big or small. We need more people like us who can overcome and see the world through a lens of gratitude instead of envy.

When Life Isn't...

...what you thought it would be...

I don't remember ever desiring to be something in particular when I grew up.  I'm sure I thought about being a teacher or a mom or a wife.  I know I was interested in writing because I wrote all the time.  Back then it was all private and deep in an angst-y teenager kind of way.  But I didn't have a real dream or goal of going on to do something great.  I just sort of had the expectation of getting to grow up and become whatever it was that I'd figure out along the way.

And then 1991.

I was 16 and I'd just returned from living overseas for two years with my family because my dad was in the Navy.  I'd had some strange symptoms and after a battery of tests, the news was that I had Juvenile Rheumatoid Arthritis.  It explained the pain and the joint symptoms, but at 16 I wasn't really prepared for what that would mean for my future.  I started oral medications and went about my high school life.  Several years into adulthood, I felt the medicines weren't making a difference so I quit taking them.  I had a baby a year later.  Symptomatically, I was doing pretty well.  I typed a little differently because my fingers had started to lose cartilage and I was more tired than I should have been after doing very little.  But I was okay.

And then 2001.

I was 26 and had just had my second child.  Literally, I was about a week after delivery.  And my body was not my own.  I could not pick up my newborn.  I had to scoop her into my arms like a forklift.  I could not hold her bottle, but rest it on my chin.  My legs and feet hurt so badly, I would crawl on my hands and knees from the bedroom to the kitchen to get my 3 year old her breakfast.  I got stuck in the shower because my legs could not hold the weight of my body long enough for me to lift one leg over the 3 inch lip over to the bathroom floor.  I was using my teeth as an appendage because it hurt to pull the blankets up over me.  And I sat rocking my baby with tears running down my face as I wondered how I was ever going to be able to care for two children, a house, a husband, and myself ever again. This is not what I had pictured my life being like.

I learned that pregnancy puts RA into remission.  There's something in the hormones that makes you feel almost totally normal.  But once pregnancy ends, the dormant RA can return with a vengeance.  And the second time it had.  I was unable to stand up straight.  I was using shopping carts as walkers.  I was starting my car left handed.  I was choosing clothes based on how easy they were to remove rather than fit or style - and avoid buttons at all costs.  I had to get a very short haircut because I could no longer keep it pulled back. I was certainly not going to be able to work.  I was only getting a few hours of restless sleep a night due to pain, and I was too limited to be beneficial to anyone outside the home. It was then that I realized I would be in a wheelchair by the time I was 30.  The progression was too fast.  I was loosing too much at a rate much faster than the last ten years combined.  It was looking hopeless.

And I had a husband (now my ex) who was continually angry with me for not being the woman he married.  I was accused of making up my pain "so he'd have to help out more."  If I hadn't been so miserable, his arguments would have been funny.  Who makes up these kinds of problems just to get a man to take out the trash?  The reality was worse:  I was quickly becoming more and more useless, and I had absolutely no support from the person who had promised "in sickness and in health."  I'd never felt more like a burden.

Despite having no real visions of my future as a teenager, I was suddenly overwhelmed with daily reminders of what my near future would look like:  losing the ability to drive, losing accessibility to easy freedoms, increasing difficulty in bathing/dressing/feeding myself, inability to play with my children, dependence upon others to get me where I needed to go.  It was not only depressing; it was angering.  My body was betraying me and I had no way to stop it.  I only focused on getting through the day - only doing what had to be done and not thinking about what couldn't be done.  I did my best to ignore my own voice of panic and tune out the hurtful and insulting remarks made by the other "adult" in the house.  I worked on training my babies to walk into my arms and not run.  To give gentle hugs and kisses.  To be satisfied with sitting in my lap and not being picked up when they craved my comfort.  I tried not to think about the many, many years ahead of me that would have me missing out on so much.  I tried not to think about how this was not what I had thought my life would be like - for the next 50+ years.

And then 2003.

Due to circumstances I won't share, I abruptly removed my children from the home and left my marriage.  I applied and was approved for Social Security Disability.  I was given Medicare coverage as a part of my total disability so I decided to seek out another Rheumatologist.  I thought even oral medications could be better than the world I was suffering in.  To my amazement, new medications had come to the market and I was encouraged to try something different.  I began an IV infusion medication that would be administered every 8 weeks.  After the first treatment, I cried.  I could already tell a difference.  I was already in less pain.  I had hope for the first time in two years.  

Appointments and treatments were adjusted.  Dosage increased, frequency decreased to every 6 weeks.  More quickly than I ever imagined, I began standing taller.  I began walking more normally.  I could carefully lift my toddler and carry her to bed.  I was able to use my right hand to start my car.  I didn't have to plan my outfits as much as I had been, (although buttons still give me trouble).  I laughed at the thought that my ex probably thought that I had in fact been "faking" my pain as he saw me functioning better once we separated than he had the last two years.  I didn't care.  Maybe I wouldn't have to be in a wheelchair after all.

But I still couldn't work.  Although the daily pain was now under control, the damage to my body was done.  I fought fatigue and exhaustion as my body continued to battle the disease.  I was unable to commit to a full time job.  And the red tape of Medicare made it risky to even consider part time work.  I was a partially educated woman with talents and the desire to contribute without the ability to do so.  I was so thankful for my miracle drug that gave me my life back, but I had no idea what my purpose was going to be now.  I still felt like a burden - now on society.

I focused on raising my daughters.  I met, fell in love with, and married an incredible man who loved me - all of me, disability and all.  He loved me so well that I began to feel like I not only mattered, but that I made a difference.  He made me feel beautiful and special and interesting.  He didn't see limitations.  He saw creativity.  He didn't see a burden.  He saw perseverance.  Soon I began to see myself through his eyes and that helped to heal my heart.  This was the husband I had deserved.

But it wasn't enough to make me forget what I couldn't do.  I couldn't work.  It made no sense to pay for school for a degree I could never use.  I couldn't be active and sporty like others my age.  I couldn't be valued for my knowledge, opinions, wisdom, humor - there were no raises or accolades for a job well done.  It was just laundry and cooking and kids and homework.  It was without pain, but it was also without satisfaction.

This isn't exactly what I thought my life would be like either.

Now anyone who has been reading this blog for a while knows that my life revolves around my relationship with Jesus.  I'd be remiss if I left Him out of this story.  He was ever-present in my walk through this.  He heard my cries and my prayers.  He heard me begging for healing.  He was aware of my doubts when the enemy tried to use scripture against me by saying, "I guess your faith isn't even as big as a mustard seed" (referencing Matthew 17:20).  Jesus spoke truth to me when He assured me that this wasn't a matter of a lack of faith or a punishment for some sin I'd committed.  He was my Strength when I was sure I couldn't go on.  He was my Comforter when I felt all alone in my misery.  He was my Great Physician when I finally got medication that worked.  He walked beside me and went before me every step of the way.  I didn't always understand what He was doing or what I was supposed to be learning, but I knew He was with me.

And then 2017.

I had made a conscious effort to work on my weight.  I'd gained some pounds and I knew it would be beneficial to my body to get rid of it.  For two years, I'd tried different things.  I joined a gym - and could only use certain pieces of equipment because of my limitations.  I joined an online group that was using a video series - and spent time being frustrated with myself because I'd have to jog in place while they did some move my body simply wasn't able to do.  Not because I was weak or lazy, but because my joints are fused and won't move that way.  It was discouraging to say the least.

I remember the day that changed everything.  I was sitting on our bed, telling my husband that I didn't know what to do.  I had the motivation, but not the right tools.  I said, "I need someone who understands me.  Who will listen to me.  Who can be compassionate enough to not think I'm being lazy.  Someone who can modify things to what I need, what I can do."  I didn't know it at the time, but my husband wasn't just hearing me.  He was listening.

A couple days later he said, "I found you someone."

He had researched trainers in our area.  He came upon one woman and contacted her.  He explained my situation.  He told her I was motivated, but losing heart.  They corresponded a bit and then my husband told me she was expecting to hear from me.  I was at a loss.  I was so in love with my man in that moment.  And so intimidated by what he'd just done.  This was it - did I mean everything I'd just told him days earlier? 

I've been working with my trainer since April.  I cannot tell you what I gift she is to me.  She listened to me.  She created a plan just for me.  She answers my questions - all of them, no matter how silly or redundant.  She cheers me on and she (tries to) get tough. She has become my friend.  And she's a Christian.

We talk a lot about how God brought us together.  In January, she was diagnosed with Fibromyalgia.  She is a natural athlete, and she's just beginning to learn the betrayal your body gives you that comes with this kind of illness.  We can talk and understand each other's struggles.  I've cried a few times on her floor when I fight to do what she's asking me to do.  And she builds me up, reminding me that I'm doing more than I thought I could.

And that's the reason for this post. 

I never would have imagined that I would be working out the way I am.  I see her two times a week, an hour each time.  I have homework assignments throughout the week on other days.  I'm losing pounds, inches, and body fat.  But that's not the most incredible thing.

I'm running.

Despite a body that needs IV infusions every 6 weeks in order to keep me out of a wheelchair, I am running.  Okay, jogging.  In reality, I call it "Lori running."  My pace isn't fast, but I'm doing it.  I actually own this --> shirt and it encourages me every time I wear it.  I'm building endurance and I've even mentioned to her that I might be ready to consider a walk/run 5K.  And you cannot imagine the emotions that brings up.

There was a time I had to crawl across my house to feed my child breakfast.  I had to use a shopping cart as a walker.  I had to use my teeth to pull up the blankets.  I was headed for a wheelchair.  And now I'm running.  I can't think about it without tearing up.  And I definitely can't think about it while I'm out doing my runs, or I lose my composure and I can't breathe.  And believe me, you need to be able to breathe while you're running.

This is not what I imagined my life would be like.  I didn't imagine being diagnosed with something that would change my life.  I didn't imagine not having a career.  I didn't imagine being divorced.  I didn't imagine going to the doctor so often.  I didn't imagine finding a medicine that would dramatically change my life - again.  I didn't imagine being married to the best husband God could have chosen for me.  I didn't imagine that man would be led to the best trainer God could have chosen for me - who would also change my life - again.  I didn't imagine crying as I run, amazed at the abilities of my body and the lack of a wheelchair.

I am learning to recognize the things that I can do and focus on those.   Too much time was/is wasted on thinking about what I can't do.  Things I can never change.  Time I can't get back.  But what I can do?  The things I have time for now?  Those are the important things. 

It's never bothered me to use the word "disabled."  More often, for myself, I use the word "limited" or "limitations."  And I think it's vital to realize that everyone has limits and limitations.  Not everyone can sing well or be the star athlete or become the youngest CEO.  We can't all be astronauts or presidents or models.  But we each have things we can do.  We each have purpose.

Maybe your life isn't how you imagined it.  Maybe you struggle with a physical limitation.  Maybe you struggle with school.  Or parenting.  Or finances.  Whatever your weakness is, don't let it define you.  Don't stay in the mindset that lies to you about your lack of value due to your limits.  If you really want help with it, seek it!  There are those who are gifted to work with you and help you through your struggles.  And then figure out what you are capable of.  What gift do you have that can help others?  What do you have to offer that will encourage someone else?  What you take for granted may be the very thing that someone else is crying out for in their life. 

I didn't imagine any of this.  Which means I'm not limited in what can happen next.