Three words that may seem so insignificant but carry so much meaning. I used to be one of those people who spoke with honesty once asked. I understand the concept of social introductions but why ask if you do not want to hear the answer?

It was my own little rebellion against human indifference – I answered with truth and watched as the surprised faces of people who carelessly threw around with serious questions crumbled into an “Oh no. She’s actually telling me how she is”. I found that too many didn’t really care.

Until two months ago, that was a significant part of my philosophy – ask, answer, listen.

My rather “black-and-white”-point of view in this regard needed a splash of colour and the ability to readjust in accordance to the social scenes taking place in front of me. After “Anti MOG” became one of the “life orders” blinking there neatly on my chest, I constantly met people saying “how are you?”. Some with an undertone of actually wanting to know about all of me. Some with eagerness beaming through them finally getting to know all of the slippery details of that order there, not really caring about the rest of me.

I find that there are three different groups of people:

  1. The “How Are You?” – I actually want to know-people.
  2. The “How Are You?” – please give me the gossip I can share around my dinner-table-people
  3. The “How Are You?” – I just want to great you-people.

In Copenhagen airport, you can get a key-hanger that signifies that you have an “invisible illness”. It is quite neat with sunflowers on it signifying that one might need some patience, guidance or help.

Sometimes I wish we could carry something making it visible what kind of a “How are you”-group we belong to.

I don’t mind sharing about my condition and how things truly are. I actually do want to share to the people who wants to hear. As much as I do want to know and hear about your life-situation as well. My issue is when my situation becomes the center of entertainment to some dinner-party in which I do not have control of what is being shared and how.

I understand that we lean on each other for guidance and support in difficult situations. But, I find it difficult being a part of a conversation in which someone sharing the story of to build and surround oneself with mysterious interest and become the center of attention.

It is a razor-sharp edge to pass keeping to the social standards of society on one side while still breaking with the sense of indifference and gossip on the other.

I am going to keep asking anyway: How are you really? Do you want to tell me? It is okay if you don’t. But know, that I actually am curious.

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A feature is what I call the “I had no choice yet cannot ignore for ever health-conditions” I have.

“You are using the restroom quite a lot, huh?” A boy stated, running passed me with what he probably felt like the speed of lightning. I responded with a slight indifference. Because, how do you explain the aftermath of an illness terrorising my body and the symptoms still lingering to an 8 year old boy with a concentration of an ant?

Why can’t I walk?

Two months ago, I went to the doctor with what I thought was a simple concussion. My brother and I had been working on his terrace and I’d lost control of one of the boards. I did have a mild concussion but unfortunately, it was only the beginning.

At this point, I had noticed I was walking slowly and had some issue with my bladder but didn’t think much of it and forgot to mention it the first time around. So the next day, after a night of little sleep due to a bladder that wanted relief but couldn’t (resulting in visits to the lue every half/whole hour) it was time for another visit to the doctor. This time a slight suspicion of cystitis.

It wasn’t. Instead, the nurse with slight horror in her face stated that I had diabetes type 1 and a very high level of sugar in my urine. I calmly responded that I already knew about my diabetes (diagnosed in 2017), was and am in treatment – and by the way, the level she was talking about was actually lower than last time they measured my sugar-levels. I knew it wasn’t my diabetes – because I know my body. I know my Diabetes-badass-body. She was convinced that it was my diabetes and even consulted with a doctor. They sent me home with an allround treatment for cystitis just in case and sent my urine for further testing.

That afternoon, crashing at my mothers. My bladder still closed up like some stores on a Sunday. I just couldn’t be in my body and we went to A&E. They relieved me from 1,5 l urine and admitted me then and there.

Please be an infection. Please.

That’s when the testing started. At this point, I had no bladder-function (now hooked on a catheter – I called her Ulla) and my legs just did not want to do what I wanted and felt numb. Despite having no idea at this point, what was going on, testing me for a 100+ infections, they began an overall treatment to see if they could make a wild guess.

I remember my mom cheer for every infection I did not have and while I understood her point of view, I got more and more depressed, because I knew what that ment. As possible infections I could be treated for and walk out of the hospital, go back to my life and live as usual was running out, the closer we got to the auto-immune illness playground yet again. A place you do not leave, ever, but learn how to play the best way possible.

And once again since Diabetes anno 2017 yet another permanent playground was opened to me: Anti-MOG.

Anti-MOG – my new feature

Scleroses is when the inmune system by mistake attacks the nerve cells in the central nerve system, specifically the myelin acting as airbags protecting the nerves. This makes it highly problematic for the brain to send signals to the body – for instance, it needs to find a new ways to tell the legs to walk for instance. Anti-MOG is not really scleroses, but a cousin so to speak. It’s when the imune-systems by mistake attacks a protein in the myelin called Myelin Oligodendrocyt Glycoprotein (MOG).

And, this is how far I go in my Anti-MOG/Scleroses education. We’ll have to see what’s up for next semester. I think there’s a lot of training-schemes on the next semester-plan, but I’ll keep you up-to-date.

Once the diagnosis was established, the first round of treatment went smooth sailing. My body came back to normal and I had hoped for this attack to be the only one I would experience. I went back to work. I started working out. I bought a bike-helmet, because I had promised God to buy one, if I ever got out of the hospital. I was a little bit slow and tired but knew I had to get back to life. That’s how I function.

Ding. Second round

A week later, symptoms started to flare up again. I woke up one morning and simply couldn’t walk. My sister and her fiancé came and drove me to the hospital and as I tried to walk into the consultation-room, I lost balance and almost fell if it wasn’t for the doctor catching me.

This time around, the treatment I was given the first time around did not help as well as they wanted, and I was transferred to another hospital with the possibility to treat me with plasmapheresis. Now, if you do not know, you get some tubes operated into the blood vessel in order to drag out the white blood-cells and replace them with medicine.

I got to admit having fun finding names for this one. To the people I knew could take a joke, I called the tube my penis. Fittingly, as the “sock” they put on them made them look perfect for the part as Penis. My cousin laughingly said, that I was giving the world the finger. And so officially, I called them “Finn the Finger”. When I finally got them removed (they were actually kind of heavy, annoyingly in the way all the time and itchy) I was pretty glad I did not know how big they actually were. It might have looked like a penis growing on the surface, but it was a humongous whale underneath. Today, I have a slight mark on my neck. That’s it. And pictures – of course.

The Plasmapheresis was an interesting treatment. I had some issues during, but it helped me get some of my functions back – and also the memory and embarrassment of having to use a pelvis on multiple occasions during the treatments due to the gastrointestinal symptoms I had from the Anti-MOG attack they were treating me for combined with blood-sugars I could not control due to the medicine I was taking. It was just an unfortunate, irritating cocktail leading straight to my bladder (I call her Bellatrix le Strange (Harry Potter)). Bellatrix had a party on these days. I’m just saying.

I was given 5 treatments and had “rest-days” in between. After the 3rd treatment I was so well-functioning, that they sent me home to stay, having to come back on the last remaining “treatment-days”. And while that was a challenge for me in my new life and gave me another kind of worries, it was a blessing in disguise. I got to crash my mothers couch and get some normality.

Hospital-life – getting back to life

Hospital-life did not make my state of mind better and combined with some busy nurses that seemed to think I did not need any help, I felt more of an obstacle than someone considered ill enough to be there. I was in a psychological messy state and had difficulties finding my voice, speaking up, asking the million questions I had and just finding out what options I had. Not many of the nurses seemed to pick up on it and didn’t offer me the help I actually needed or just gave me a chance to actually function the best way possible. Simple things could have helped.

I had at this point been to several hospitals already and met a lot of health-care professionals helping me getting answers. It was honestly, only this last place I really experienced the challenges the hospital system are having in Denmark and the lack of personnel. It seemed as if the other places, despite being just as busy, had found a way through commitment, souls of fire for their fields and fellowship. Only a handful of people I met had that same fire at this last place.

Instead one nurse came in one morning and declared that she did not have time for me. Another one completely overheard me when I asked for help making it pretty evident that she had not taken the time to read up on my case and what I came from. To them, I was normally functioning. They had not seen me laying in bed with almost no moving body-function from the chest down. A handful of people working there was a complete different experience. They went out of their way to help me, gave me advice on how to make the treatments better and when I finally found my voice, answered all my questions.

This is not my body yet

When I came back from treatments, the doctors and nurses kept asking me “How do you feel?”, “Did it work?” – but how do you answer such questions when the body I return with does not feel like the body I once had? I wanted to be positive. I wanted to say – yeah, It’s really working. Now I can do this. See? The treatments did work but slow. The next day of a treatment I’d be overwhelmed with tiredness but have more energy in my legs and they wouldn’t be as heavy.

At this point I could walk, yet my feet were feeling swollen and as if they were sleeping. The “sleepy-ness” would move up my legs if I moved around too much. The first time this happen I became so scared and started crying impulsively sitting around the table. My legs sometimes felt heavy. It prickled in my hands. I’d get tired in my eyes if I pushed the limits of my doings too much.

Finally. Answers!

Alongside these treatments, I was transferred to Sclerose-klinikken in Glostrup. Here, I was finally offered some explanations I could understand, answers to the many questions I had and a treatment plan. And this is where I am today – waiting for my first round of Rituximab in about 9 days (who’s counting…) while running to the bathroom all the time because Bellatrix has decided to open the gates in an uncontrollable maner. But at least some things are starting to work right?

The End? To be continued…

This is the story of an auto-immune illness. I wish I could conclude with a “The End”. But a lot of emotions, feelings and life-questions came to the surface and if I had to cover that in this segment, you’d never be done. I don’t know if you can use my story. I know I needed to read other people’s stories – just knowing that they had a life after the diagnosis was something I could hold on to. And if this can be that story to you, I’m glad. But it is not why I mainly write this.

I want to keep something to remember what actually happened. Life-events tend to become blurry so to me, this is the more actual story. How I felt and how I delt with (and keep dealing with) the feelings, the emotions, the anxiety, the scare, the grief, peoples respons I want to cover in different ways.

So, I guess this is a “to be continued … and now I’ll let Bellatrix win the “gate-opening” contest this time around.

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My siblings have always ment the world to me. When life and the people in it was unfair, we always had each other. While I admit that being a part of different generations sometimes makes it difficult to connect and stay connected, they are important in my life.

In Denmark every third person considers themselves next of kin to someone with a mental health illness. 61% feels the psychological burden.

Bedre Psykiatri, 2018

8-9 years ago, a lavine began that became impossible to stop. What normally would have been considered young people having fun turned out to be self-medication. Self-medication became psychotic incidences. Psychotic incidences developed into memory loss after treatments, suicide attempts, visits to the psychiatric department, even one time where the police was called to ensure hospitalisation.

How many families is it normal to have a record over how many attempts there have been?

It is difficult being the sister nothing new, but still. It seems to me, with mental health illnesses that there’s never really a way out. It’s always there luring under the surface, threatening to come out and break the quiet moments with hurricanes. At one point we can talk as adults and the next I’ve done something wrong and fire comes down.

Standing on the sideline, watching the circles of denial they almost have to walk before realising where the help might actually be, eats me alive if I allow myself to become a part of the circle-walking. Bottom line is, no one can force help down any one’s throat before they want to be helped.

No one can force any one to stop their destructive behaviours before understanding the ruination of it all.

But where does that leave me? When we find ourselves in between a system that has all the professional help but doesn’t seem to listen and a sibling that seems to not see the issues where does that leave me as the sister?

Sometimes it seems that family is left doing the job society have educated professionals for. A job the family is not equipped for professionally or emotionally and it feels like being left behind figuring out what others are spending years to learn at universities.

The thing just is, when you are family, you are already involved. You are already deep in all the dirt that is a family. But when are you so involved that it is okay to step in and overwright the story being told by the people involved? When is it time to step out of the way, recognise that everyone are adults and should get a chance to go their on their own?

In the end, you don’t learn how to cook by being served the finished meal.

Some cheasy quote someone once made up, but quite fitting for the purpose
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Warning. This blog may have been written under angry frustration realising my bloodsugar was way too high after consuming a relatively normal-sized, non-sugary breakfast (because somehow most people will propably think I ate some sugary serial that I should’ve taken into consideration (can you feel me sighing and almost see me rolling my eyes?))

A friend and I were on our way home from an event and I was letting out steam about people who talk as if diabetics can’t eat anything and misunderstands being a type 1 and type 2. It comes down to being informed and you know what, that’s okay! I just find, that I cannot take peoples comments or statements serious when its about something they don’t know.

The thing is, that it’s sometimes not the sugary things that’s my pitfall – it can just as equally be the food that is considered healthy. Some mornings, my body responds in one way to a bowl of oatmeal and other days I arive at work way too low after eating something that yesterday needed to insulin-supplement. In some seasons I need more of one kind of insulin, in others I’m getting waaay too much. Sometimes stress can have an impact, and other times I can be presured beyond extremes and my blood sugar responds as it should. Sometimes I can run 6 km and do a half-an-hour hard physical workout as well other times I can only walk a couple of hundred meters before needing to adjust my sugar.

What most people think is that I can just pinpoint my bloodsugar levels down to what I eat – and yes, that has an influence. But it’s not an exact science. Sometimes it’s presure. Stress. Exercise.

So what can you do? Don’t assume you know. If you see me eat cake, don’t even let it cross your mind that I can’t have that. On a daily basis I’ve been nice, trying to explain.

But I’m tired of being met with the same misunderstandings and outdated scientific results. So, quite frankly; It is absolutely none of your business. How your family member chooses to handle his or her diabetes does not necessarily fit me.

And one last thing. In Denmark, the old term for a diabetic was that he or she is suffering from “Sugar-illness” (direct translation), can we please erase that term from existence? I am concerned about ALL CARBS not just SUGAR! So no, I do not suffer from “sukkersyge” – I am diabetic… Astronomic difference (Maybe not, but I’m pretty pissed at this point).

Oh. And allow me to apologize if I’m offending anyone. I know you mean it as a well-meaning advice. But if I shouldn’t advice others in areas I have no experience in, then let me just assume that goes the other way around as well. Please, consider, if you are offended by this. Maybe it’s because you think you are being a good friend.

Sometimes being a friend entails one listens, supports and asks questions. Nothing more.

Oh, maybe just a hug!

And no, I am not always good at staying within those lines myself but always try to.

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At a meeting, in a badly airconditioned conference room I realise what I thought was a pretty a-okay preparation should’ve had a different direction. The meeting was not what I initially thought it would be about but I still decide to go for the creative, new-thinking direction I prepared for.

Thoughts like, “I’m such an imposter, when will they call me out? Why should my word have such a big impact? When will they know?” are running through my mind

As I begin expanding my thoughts, research and results, slowly but steadily, I see minds changing. I notice how I’ve manage to point in a direction they never even thought of possible. After, as I was de-breathing (pon intented) at my desk, I just couldn’t stop smiling.

I get such a rush out of knowing and experiencing how the knowledge I dug up, can guide others in a completely different direction and maybe even end with a better outcome.

After 2 years of applying for jobs, freelancing and temporary solutions after University, with an aditional year being in a job-position that was okay, but never challenging, I finally got a chance getting my first Uni-applicable Job. I ended up somewhere creative, flexible and open for new opportunities.

Everyday, I find myself committing to “fake it till you make it” and every day, I somehow manage to leave work with a feeling of having contributed to something. Done something.

Slowly, from not believing that anyone could ever need my services and abilities, to the fact that I now more than ever trust that if not in this – maybe even more in the next.

This journey has been one amazing learning curve. I’ve learned so much about myself, the work-environment I thrive in the most, and what I can do. I’ve gained competencies, I just a year ago never dreamed I vould achieve (and btw preparing me for those applications I never had a shot at straight out of UNI).

But most of all, I’ve learned that dreams are rarely lived out from the moment I decide it to. It takes work getting there. Sometimes it’s the weirdest way one gets to be prepared for the one thing one wants to do.

I still want to go to the Middle East. That is still in my scope, and while I in the beginning couldn’t see how I would get the competencies I seemed to need, now I’m in a very different position where I might have a shot!

To me “faking it” meant realising I had no clue, speak out that I didn’t know but would love to learn and act on it.

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At the end of a day, my mouth would have its own mind and literally send signals to my brain on how bored it was. Why no candy? Why not that icecream from the freezer? OH OH OH, Look at that lemon-marengue pie? But a couple of days ago it basically said, Kat, you simply cannot watch more TV without one of those crusty rolls you bought for the weekend. It is simply not possible.

And you know, like training a dog as owners rewards the dog for the desired behaviours, I may have rewarded my mouths desires with all four of them.

It was a surprise to me how big an influence something so seemingly innocent as sugar can have and how dramatic my body can seem to be. After 2-3 days of headaches and 8 days of cake alternatives, I actually made it to the other side of all the drama-tantrums – sick of almonds, despite them being a regular in my household.

Now I have 20 days left and I can feel my body being a-okay (now I’m not talking diabetes wise, because that is another story for another day). I still miss my friday-night candy and I do want that Ben & Jerry’s in my freezer, but I’m not being that dramatic about it anymore. I’m simply okay going without.

Fasting from something is breaking with something that seems to have too much power over you.

I never actually thought I’d get to this point, where I would be okay with not entertaining my mouth with whatever cake was at my disposal. Learning, that it’s okay to be bored, and that it is literally unhealthy to give in to whatever need I have. But also breaking with a potential “comfort” before it got out of control and I had to fight other health-related issues.

I’d rather get a healthy, comfortable relation to the things that can create so much havoc in my life than to look back and wonder why I didn’t deal with this when I could.

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As I was laying in bed trying to wake up, I wondered how to get around this idea or commitment I made the night before. Actually, I’ve tried to find loopholes all morning. How can I at some point in the nearest future eat that Ben and Jerry’s ice cream I have in the freezer? How can I justify buying my loved candy? And then it just dawned on me: I have a problem. Sugar in all forms unhealthy has an unnatural grip on my life. It takes a focus it shouldn’t have and for that reason alone, this is important.

Now, I’m diabetic. Type 1. So sugar will always in some form be a natural remedy to my expected lows. Many believes that I am sick because of sugar, but that’s not how it is – and that is why it is important for me to underline that this journey I’m sharing right now has nothing to do with my blood sugar. Now I expect that this choice I make the next 40 days will have an important impact in this area, but I do not choose not to eat sugar because of it. I believe that with the medicine we have today, a diabetic can live a normal life – and besides it’s all carbs that is an issue, so you can’t really live safe being sugar free – popcorn can make your blood sugar rise just as much as candy can. Maybe not as dramatically, but it will happen.

No, I am making this choice, because I do not want to be that lady who cannot control my need for sugar to function. I want to be able to have Cake-fridays, and then choose healthier options throughout the week. I want a healthy body, because I believe that it can be a journey in a healthier God-life as well. I do not want anything binding me, letting me become someone I am not intended to be.

So this is it. Day 40. In my fasting from sugar. The rule is I can eat fruit, and food with sugar in it (such as honey) but not the good processed sugar, candy, and things with processed sugar such as icecream and cakes.

This is my manifestation. This blog is supposed to keep me responsible. And this is me trying train some strength into this area of my life, where I unfortunately has a wormy-backbone (we say “en rygrad som en regnorm” in Danish).

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Something dangerous about a woman;
Content with how things are;
In acceptance of the season she is in.

Loving what is today
Knowing that, accepting a season
does not make it permanent.

Change is happening
In all spheres of life;
some just quicker than others.

Taking away all distractions
Allowing her to focus on the reality
Seeing the possibilities for the future.

Possibilities not distracted
by norms of others.
by what she is ‘supposed’ to do.

But having true freedom
to feel, deep down;
“What is my God-spoken way of life?”

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During one of my “seasons of sorrow”, yearning for the circumstances I didn’t get to experience, I found myself reading Timothy Kellers book “The Meaning of Marriage”. I wanted to figure out what it that marriage-thing actually was and why I wanted it so badly. As I reached the end it dawned on me: As much as I did want that kind of marriage…

I just didn’t want that right now.

Suddenly, I found myself in a new situation. What do I do when that one thing I’ve been yearning for and in sorrow of not having for so long, is the one thing I want at some point in the future – I’m just not ready right now? In this season of life, everyone around me seems to settle down, can it be socially acceptable as a Christian to not want to get married and have a family life at this moment? Would that mean that my chances would pass and never come back?

And, so began my first season of acceptance. I remember it not being a walk in a park, but it set me free from a lot of expectations I had. It gave me space to actually feel and not try to feel what I thought everyone expected me to as a single believer at the end of my twenties.

Just because I accepted the state of things right at that moment, it didn’t mean I wanted it that way. It didn’t mean I was okay with being single. It just meant I found the ability to love life and accept it. I found the ability to accept the road I was on.

Loving single life doesn’t mean that it is set in stone that I will be single for the rest of my life… And thank God for that!

A year ago I found myself at my mom’s wedding. I chose to love the irony of attending my mother’s wedding and that she got to experience while I was still waiting for that first time around. Despite this, pretty much every member of our distant family gave me “much needed advice”. One told me not to grow too comfortable. Another, to get moving.

That did not make me go home feeling cared for and comfortable enough to jump at any chance of a date. It made me go home feeling uncomfortable, unloved and wrong.

The thing just is, that you can do everything right and still not hit jackpot. Finding someone is a miracle on it’s own. And yes, we do need to do what is natural in order for God to pull his overnatural, miracle way.

The thing just is, that I don’t want to settle for less. I want to be with that God-chosen one. And that takes time, work and a miracle.

At the end of the day, I’m the one who has to pull myself up every time yet another one has a band on that “leadership finger”. Yet another one turned out to have a girlfriend. Yet another one wasn’t interested in me like that. Yet another one found my boundaries too much. Not you.

And that is why I made a rule of acceptance in my single-chronicles:

Accepting life never makes any state of life permanent. It just makes it liveable. And a whole lot more fun to live!

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“We’re not gonna be able to be really with people if we are not able to be real about where we really are and say ‘we just really need you, Jesus'”
– Bob Goff.

Once upon a time, in a church in Denmark I was sitting in the choir. I had committed to singing that specific Sunday morning. I don’t remember why. But I had one of those moments where I just felt life sucked. I remember sitting almost up under the roof where the organ was, listening to the priest, having a moment with God just saying to myself “Ok. This sucks. So, I don’t believe in you anymore.” I don’t remember what the priest said. But I do remember having this clear feeling just moments after, that “huh, God. You just really love me. ” And my few moments as a non-believer passed.

It was almost as if God whispered to me, “but Kat, I just love you. ” And that was all I needed. In that moment.

I have never hidden to any of my friends – believers or not – that I don’t always agree with God. Actually, one time, at a wedding, I shared in a private moment with the bride, that God and I were fighting. We had a disagreement as to where I was supposed to be in life by now. She shared with me that she’d always wondered, why I kept holding on to my faith, when it seemed to be so hard sometimes and go against what I wanted. And I remember answering;

“because I know God’s the one being right in the end. I just need time to get there”.

The thing about faith is that people are watching you. Not just when things are going well.

It is so easy to point to God and tell your friends about all the things that are happening when things are going well. Just as easy as it is for people in a relationship to tell singles to “not waste time not enjoying singleness. Because once you get in a relationship…”

Now, don’t get me wrong. I do believe God can use every sphere his children are in, in his mission to bring people back to him.

But, I’ve learned that my faith tend to be the one thing people can’t stop noticing, when everything in my life just sucks, and I am still on my knees, praising God.

I may not remember a moment in life without God. I don’t have a crazy “coming to faith”-story or a story about how God’s healing during baptism.

God has been a constant companion throughout my life, as long as I can remember. What I believed and did back then may not necessarily be what I believe and do today. And, I’m not perfect. I am a sinner too. I may not have always been faithful to the road he is leading me towards, but I’ve always been loyal to it.

The thing just is, that there is just as much power in the story of a lifelong journey with God walking the road he’s leading me towards as any other faith-story. Because people notice.

A friend told me, that it was people like me, who kept holding on throughout their entire lives that led her to believe and trust, that, that “God-thing” might actually be true.

So. Don’t ever doubt that God isn’t using you. You may not notice. Sometimes it isn’t when you are pointing towards him, but when you are living your life trying to pass whatever bump your facing on the road of life. It may not always be the masks you let people see in public that makes people wonder. But it may be when you let the mask drop that they notice that you act what you preach.

In the end, we do not have to do anything but getting out of the way. God is in control. No matter what, walking with Jesus, people will notice. And I pray that, my actions will point them to him and be a light in their darkness, making them wonder.

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