Purposefully 

Yesterday the extent of my hair loss reached out from behind the mirror and smacked me in the face. “Could who I’m looking at possibly be me?” Yep, it was. The open empty, thinning spaces seemed like a good representation my life, empty space and barren in some places and holding on for dear life in others. But then today I was reminded of something miraculous. My boys and I read “The Purpose Driven Life” every morning and we are readung the chapter titled “God’s Power in Your Weakness”. I was so excited to start this chapter because I haven’t felt more weak in my life than I do right now. After we began to read the first chapter I was sure the words were meant for our family.

“Your weaknesses are no accident. God deliberately allows them in your life for the purpose of demonstrating his power through you.” It goes on to say, “That God uses imperfect people is encouraging news for all of us.” Then it hit home. “A weakness, or ‘thorn’ as Paul called it, is not a sin or vice or a character defect that you can change, such as overeating or impatience. A weakness is any limitation that you inherited or have no power to change.  It may be a physical limitation, like a handicap, a chronic illness, naturally low energy, or disability. It may be an emotional limitation, such as a trauma scar, a hurtful memory, a personality quirk, or heredity disposition. Or it may be a talent or intellectual limitation. We’re all not super bright or talented. When you think of the limitation in your life, you may be tempted to conclude, ‘God could never use me.’ But God is never limited by our limitations. In fact, he enjoys putting his great power into ordinary containers.” 
Yesterday I was looking into the mirror wondering what purpose I even serve. I wondered if my husband could ever find me attractive after all the changes I am going through. Yesterday I looked in the mirror and thought of all the reasons I am useless, worthless, and served no real purpose in the world. My life is thin and barren of so many things because I have made so many mistakes in my life and surely I deserve the pain. It’s easier to believe the awful things I tell myself and it isn’t that hard to find reasons why I feel like I deserve it.
About a year ago I was submitting a lot of stories to The Mighty. I liked the idea behind the site, finding hope through disability and the stories were mostly submitted. I had good luck and a few of my stories got picked up, one even made its way to Yahoo Health. It was a very personal story that included photos of my life with chronic illness. This piece was in opposition to my personality. I am not someone who likes to open myself up to public scrutiny and putting this post up on Yahoo Health did just that. I told myself not to read the comments but curiosity eventually got to me and I did. There were kind comments but the trolls came out as well. The comment that stung the most stated that I was a waste because I had a chronic illness. He validated all the horrible things I have believed about myself.  I am chronically ill so I am worthless, I serve no purpose, and my family is better off without me. You would think I would have been happy after my work was being recognized, but shortly after I sank into a dark depression. My health was slowly getting worse, my son was going to have neurosurgery soon for his out of control seizures, and the depression made me feel very alone. Medication changes, depression, and stress are a bad combination. At my most desperate, I asked my husband to leave me. I negotiated and gave him every reason why he deserved more than what I could offer. Thankfully he could still see me under it all and reminded me of how much he loved me. I thought everyone else saw me as I saw myself. I didn’t allow my husband to see me as he wanted to see me. It turns out, he still saw me as the woman he married. He still does. I don’t know how he can see past what I see in the mirror every morning but he does and so does our Creator. Love is funny like that.
Contrary to what others have said about me or what I have said about myself, I have a purpose. My broken vessel can still carry a something precious. I don’t need to have a full head of hair, the perfect job or perfect family to serve my intended purpose. In fact, perfection isn’t part of the message God wants to share. He wants to share a perfect message through imperfect people. Those are the best kinds of messages, aren’t they?
When our son was diagnosed years ago, I found a lot of support online. When I searched for a group, I didn’t search for a diabetes support group, he doesn’t have diabetes. I searched for groups pertaining to his disease because I needed to talk to those who have personal knowledge of it. Experience is a useful tool, it also makes for a pretty powerful message. I have made friendships with people who understand  when others may not. I have realized, the more God allows me to suffer, the more useful I am to his message and to the service of others. Assuming I have no purpose is questioning God’s own purpose in making me. I don’t need need a full head if hair to minister to others, just because I now have some physical limitations doesn’t mean I don’t have spiritual strength, and useless to the world never means useless to God. 
I have spent the last eight years since my son was diagnosed pushing others away. I already hurt so much, I didn’t want any more hurt. It was easier for me to be alone than it was to take a chance and get hurt by someone else.The truth is, I was the one doing the most damage. I was isolating myself with the one person who had the most hateful opinion of me….. me. God is constantly challenging me in unexpected ways. Sometimes it’s through a sermon, sometimes it’s through a book, and sometimes it’s through those who won’t let me push them away. I am thankful God still had a purpose for me when I made some big mistakes but then again, he knows me better than I know myself, he is my creator. It may be about time I started looking at myself through His eyes, I may start to like what He created.

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Much Needed Grace

While thinking about this piece I wanted to write on grace I wanted to familiarize myself with how to define the word grace. I have decided for this piece to paraphrase it simply as “eloquence or beauty of form or manner”. I think of grace further defined as “eloquence in action as well as in form”. When I think of a life that embodies grace, I visualize it lived as a beautifully choreographed dance. It isn’t a dance executed to perfection, but one that flows beautifully, stepping round and turning through those unexpected obstructions of life. 

But life isn’t experienced alone and how we extend our grace to others in our lives speaks volumes about who we are compared to who we want to be.
Finding a person who truly embodies grace is difficult these days. We live in a world where jealousy and judgment run rampant and no one bats an eye when sharing or hearing gossip. Revenge is encouraged and acceptable as not to allow offenders to get away with their deeds. And as long as exclusion can be rationalized, what’s the harm, right? But what happened to grace? What happened to extending grace to others who dance in and out of our lives, not just to those we feel deserve it? In light of current events, it isn’t too far fetched to say that grace is a huge piece missing from the world today. Instead of grace, we see slandering, name calling, and judgment. Our children are learning that those holding high position(s) of power get where they are by ruthless tactics and not by grace. Shouldn’t those who claim to lead by example have some small bit of grace as part of their character?

In theological terms, grace is defined as “freely given and undeserving favor of God, the influence of the spirit of God that gives strength to a believer, or a virtue of divine origin”. I think the most important word defining grace in theological terms is “undeserving”. The word undeserving is also becoming an offensive word in the world today. Some people don’t want to work as hard as their ancestors at what they desire but feel like they have just cause to have whatever it is they want right away. They are entitled. Sadly, I have been very guilty of an entitled nature myself. I get frustrated and want things to change right away. I get so frustrated with the difficulty of our circumstances that I ask God,  “Just give me something to ease my load.” I think I deserve it, but I don’t. I am not deserving of the grace I think I’m entitled to but that doesn’t mean I haven’t been given it. Grace has been an eloquent pardon of my offenses and undeserving gifts, either by another human or by the divine.

My husband reminds me of the true nature of grace daily. I am not the woman he married eleven years ago. I have advanced rheumatoid arthritis and in the two years since my diagnosis, the disease has progressed enough to damage the joints and bones throughout most of my body. Whereas I feel like I have to prove my daily pain and physical limitations to other people, he never asks me to explain why I cannot finish even the most remedial tasks. Often he comes home and supper isn’t started and I’m laying in bed consumed with pain, but he doesn’t question me about the kids, the house, or what I could have done, he gives me grace. He makes supper, cleans up, and helps get the kids to bed. He extends me grace I know I need but I don’t often feel like I deserve. Without that grace, our marriage would never survive. We also have a disabled child with complex medical issues and if we didn’t allow one another certain graces, we would have never found a way stay together with all the challenges we face. My husband doesn’t come home and ask, “What about me?” He asks, “What can I do to help?” His grace makes me want to keep trying because I know how hard he tries for me. My husband could tell me he understands, but without his actions, the words would be empty. It would send a conflicting message. His grace could quite possibly be what has saved our marriage and what has kept my dwindling hope alive. He never let’s his “but” get in the way. “I would help but I’m tired too.” “I could be there but I’m too busy.” “I could accept the apology but I’m still too hurt.”

I may not have said that last statement out loud, but I have thought it. Forgiveness is a hard part of having a graceful nature. I know it’s very hard for me to forgive and extend grace to people who have caused me hurt, especially those who have been the cause of hurt more than once. Deep down I have wanted to withhold my grace and turn my back, cutting ties with those who have hurt me repeatedly. Sometimes cutting ties is necessary, but the people who are hurting others repeatedly are often hurting themselves. We may not be in the position to help that person or heal their hurt, but extending our grace, no matter how hard, is a good place to start.

Everyone needs grace, whether we think they deserve it or not. I am thankful for the many times others have given me grace and especially thankful of God’s graces. Fourteen years ago I was seeking forgiveness over my failed marriage.  I asked forgiveness, but I also received God’s grace. His grace put my husband into my life at a time when I feel like I didn’t deserve it. His grace gave me a friend when I really needed it. Grace gave me the husband that would love me in our years of health and now my sickness. God gave me love I was never good enough to deserve. It’s a good thing God doesn’t listen to me when it comes to what I deserve. He knows those circumstances in my life that others didn’t know or understand and gave me His abundant grace. I am so glad he did, because I know nothing I have done deserves anything God has to offer. 

Grace has saved me. I have hope because I have been given me grace. I can be something contrary to this world when I follow the examples of those who extend it to me. Thank God for grace!

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There Goes My Memory

​I’m a few months shy of turning 36. I ponder on the fact that I am going to be closer to 40 than 30 and I wonder when it was I left my twenties. I wonder when will I ever feel like I am grown up.

I wonder if suddenly finding amusement in every single aspect of aging is considered a mid-life crisis, because if it is, I am knee deep in one. Last night I woke up abruptly from a disturbing dream. I was dreaming that I was at the grocery and I forgot my list. I say the dream was disturbing because it I woke up just as I would for an actual nightmare, heart racing and with the desire to jump out of bed. Apparently what I’m afraid of now includes shopping without my grocery list. That’s seems to be my life right now, forgetfulness. I can’t keep anything straight unless I write it down. I double book my schedule often because I can’t remember what is scribbled on my “reminder pad”, I use that term loosely because it can turn into the kid’s doodle pad at any given moment. A calendar seems like a great idea! I have a dry erase calendar on my fridge and another calendar that’s keeping track of my bills but it’s keeping track of nothing else of importance, like let’s say, ummmmm appointments, birthdays, or anniversaries! So forget getting a card of any sort from me until I remember the month is almost over and I forgot to check my, no, not calendar, card holder. Oh dear……

The more I try to become more organized the worse it becomes. I will seriously “organize” my house only to forget what genius place I put my things. The only thing I can seem to find is my dry erase calendar with nothing on it. I think it’s because I have to make room in my head for where everyone else’s stuff is located. For example, the other day my daughter was going nuts because she wanted to sleep with her Rapunzel doll. Yes, I knew where where that doll was but I can’t make it to my son’s field trip because I just scheduled my daughter’s dentist appointment on the same day. 
Yes, appointments can be rescheduled but thinking twice about anything these days scares me since I have no idea what I am doing in the first place. I blame my rheumatoid arthritis and fibrommyalgia. Explaining to people I have “fibro fog” seems to spark some recognition in them because it was most likely a part of a drug commercial promising a miracle cure for fibrommyalgia pain. Those commercials are a joke and quite annoying to someone like me. A woman living in a world of gray is suddenly able to fly a kite and laugh with her family after taking a magic pill. I think they’d be better off if they’d just sell me directions to the junk I just organized, that would make me happy. 

Happiness takes on a whole new meaning as I get older. I’m happy if I really do get to the grocery with all my coupons and a list in my hand on a day I didn’t forget to do something else, but that’s just a dream, we all know that list is sitting on my kitchen counter. 
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Open Doors and Benadryl

I learned that the young man I stumbled across in the bathroom passed away today. My heart breaks for his family…

CrossRoadTrippers

There are days I think I have this all figured out and I know what I’m supposed to do, what I’m supposed to be when I grow up. Then there are days like today, and days like last Friday that tell me I’m completely wrong about having a clue.
The new year is a fresh start for a lot of people. Not me. I spend all year scrutinizing my choices, making resolutions I never keep, feeling like I need to make my life better. The new year is just more of the same. There is no discernible difference in my anxiety levels, my drive or lack thereof, in say, June compared to December and the beginning of January. It’s all the same. One chaotic “What the hell am I gonna do?”
Very recently, I considered taking my cleaning job and making it my “real” job. What I mean by that…

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Thought for Today

​Thought for today: No one is perfect and no one will ever be perfect. Remember that when you are doing the best you can and compare your life to someone else’s that may look perfect. I assure you, it isn’t. All this may sound like very basic advice but we don’t always follow it. We turn on the television, scroll through social media, or observe someone like a coworker or friend who always seems to be planning something exciting and think of how our lives pale in comparison. It’s hard. We are all trying our best but there is always something out there to make us think we may not be doing quite enough. I want to tell you today; your best is enough. I have had to accept that just getting through the day at my worst is good enough as well. This world is full of imperfect people who yield imperfections. Yep, there is always room for error because we don’t have the capability to be perfect people. We all mess up, forget something, run late, say the wrong thing, and more. And we are all struggling. So while you remind yourself to give the next person compassion, don’t forget to extend compassion to another very important person, yourself.

Of Shoes and Cups

​I have been disappointed with myself over my lack of enthusiasm over my son’s post op progress from his neurosurgery. For the first time in a very long time, he is seizure free and yet I have been feeling rather numb about it. I feel especially shameful of myself when I talk to others about it in person. We convey how happy we are but I know the enthusiasm behind the statement is rather flat. The only deviation from this was our praise on one Sunday morning after we returned from Texas. We did want to give God the glory for the progress but yet there is still something inside me that felt empty…..
I know this all sounds rather sad to say considering the outcome of his surgery. My husband and I should be singing from the rooftops, and we want to, but we have gotten used to waiting for the other shoe to drop and have rarely been disappointed. 
My husband used to give me a hard time about my pessimistic attitude. I’d tell him that I couldn’t fully enjoy our early relationship because I was waiting for that other pesky shoe. I honestly never felt like I deserved my husband, but rahter I deserved unhappiness. I was divorced, opinionated, and I knew what I wanted out of life after I felt like I had been given a second chance, but I never felt like I deserved it. I never felt like I was worthy of someone as humble and kind as my husband who waited for the right relationship. I could not convince myself that he wanted to be with me. I still try to remind him that he will eventually figure out that I’m not worthy of him. He still tells me I’m too pessimistic. We have always been at the opposite ends of the glass half full/empty debate. Actually, our glass debate plays out more like this; his is full of shiny, sparkling water poured fresh from the mountain stream and mine is dirty from the mountain debris.
If you were to ask either of us the same question, you would likely get the “sparkly” story from him and the “grimy” story from me. I tell him I am being honest and I feel like he doesn’t want bother anyone with our problems, so everything is usually great when he tells the same story. Maybe we are both in denial, I’m in denial that things can get better and he’s in denial that they will keep getting worse. In recent years, his glass has got a little dirty and it is been harder for him to hide it’s true contents.
He and I were presented with the option of brain surgery for our little buddy twice before but always opted for other methods. Those other methods would work, sometimes for an extended period of time, just to fail in the end. In the eight years of his little life he has made so much progress and regression of the same skills, we have wondered why we continue to work on those skills at all. Then almost two years ago, I was diagnosed with rheumatoid arthritis. It isn’t my imagination, the other shoe keeps dropping, the rug keeps getting pulled out, the last straw always breaks the camels back…… How can I see my glass as anything but full of crap? Yes, I try to see the silver lining, focus on the positive, appreciate what I have, stay strong………… but I certainly think I have every right to fear the worst because it keeps happening. 
So as much as I want to celebrate this success, I am cautious of it. He was seizure free for almost a year before they came back and worse than ever before. I’m not sure there will ever be a time I’ll breathe a sigh of relief and it makes me so sad. I want victory for him but his disease is as complex as the name suggests. More tubers can grow, the ones he has can get bigger, and they can complicate other organs of the body. Tuberous Sclerosis Complex is a terrible and nasty disease that steals my joy over his victories. I know, there are some very well meaning people who are reading this who want to lift me up with the right words, but this time, just hug me or him the next time you see us or call us and ask us how we are really doing, it’s been quiet since we have returned from surgery. My rheumatoid arthritis has been getting worse and I’m barely able to be up for more than a brief few minutes at a time. I miss my life and I miss my joy. For now, it’s drowning at the bottom of my crusty old glass. This doesn’t mean that I’m a terrible person, just an honest one. I’m struggling in a time where I should be experiencing joy, but that isn’t something that surprises me. I just don’t know when I can let go with confidence that it will be alright. For now, I’m joyful and confident about those things this disease had never been able to steal, like his smile. 
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Learn to Love Thy Self

​So yes, I love snapchat, I can manage to make myself look better than real life, which can be quite a feat some days. It has been hard to find an ounce of confidence these days and on Monday I went in and had my hair cut off. Our recent family photo shoot was a race against time for me, or a race against my hair. The medication I take for my rheumatoid arthritis and stress has been making my hair fall out by the handfuls every time I shower. It has been harder to hide my bald spots and even harder to make myself look partially decent with thinning hair. I expected to deal with some of this at some point in my life, just not in my thirties. 
Being chronically ill sucks. It has changed every ounce of who I am and I am struggling to accept any of these physical or emotional changes. I never thought the physical changes would bother me so much but since my hair started falling out, I feel like there is no way to make myself look like “me” again. I look in the mirror and wonder who the woman is staring back at me. My weight fluctuates quickly, my hair is thin and brittle, my face looks like I’m in my teenage years, and it’s hard to smile through it all. Who am I and what am I supposed to look like? Next week will I have any hair left? Will my medications make the dark circles return under my eyes? Maybe I’ll look twice my age before long and I often wonder how the disease has advanced the age of my body. How many years will I have left? Should I anticipate an early death? It’s funny how many other things a handful of hair makes you think about. It’s hard enough being a woman and approaching forty, but approaching forty having a disease most people relate to those more than double my age is depressing. Really.. I hear, “You are too young for that.” Unfortunately I don’t understand the point in telling me that because disease doesn’t care how old you should be when you get sick, it’s destructive just the same. 
So I’m sliding closer to forty and further away from thirty and I have a lot to think about, mostly, can I look and feel better and maybe finally accept all that is happening to me.  I doubt I will anytime soon because it still p’s me off. I know I have to figure out who I am and try to like myself, with my disease but it’s a particularly hard task for me. I, like my grandma, struggle with letting the opinion of others define me, especially those who don’t like me. Am I alone? I bet not.
I bet there are many other women like me who are in their thirties who feel like we just graduated from high school and wonder what happened to the last twenty years. I remember very clearly when my dad turned 40, it seems like yesterday, yet here it is quickly approaching. Sadly, I feel like I’m still in high school when it comes to how I view myself and how others view me. I feel like there is always a few haters that are watching me and waiting to tear me up and I know I have a few haters, including me. I hope I can figure out a way to accept my haters and exclude myself from the group. I have to learn to love myself, I’m just sad that it may take me until I’m forty to accomplish it. 
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