I have pain in my brain today
It settles over me like storm clouds
Thick with electricity and ominous rumblings.
Creating thick fog in my head that my thoughts fight through,
Each one alight with throbbing agony,
As they wing their way across my synapses,
Screaming the alarm of the incoming destruction.
I try to sleep through it,
Hoping that there will be relief for me soon,
But the pain is now an ocean of churning waves,
And I am but a boat being swallowed by the tempest.
All I can do is hold on and hope for the violence to end,
Knowing there will be no rest for me today.
I pop pills, realising as I do so that I am considered a statistic of an epidemic,
But accepting that I would rather be an addict,
Than live in the grip of this monster.
Even though the pills only take the edge off,
Enough for my body to rest, for my mind to shut down.
The pills don’t work because the glory of my grey matter is that,
In making my body function on good days,
On days like today it takes my pain and transports through my nerves,
To every part of my system.
My muscles weaken, my joints groan, my organs scream with my pain.
My very body rebels against me.
My doctors tell me I am too young to be living like this.
They say I shouldn’t need so many pills.
I have now know more than my specialist about my condition
Because, as much as they may know from text books,
And all the articles that, I too, have devoured and digested,
They will never know what it is to live in the reality of my body.
I am become pain.
My eyes are pulsating in my skull.
My very teeth hurt.
There is nothing left but to accept defeat for today,
And wait for this storm to subside.
I live with chronic migraines. This means for 3-7 days of every week for the last year and a half I have been in bed in excruciating pain.
I lie in bed on my support pillow, with my light blocking eye mask, my sound blocking ear plugs, hoping that this time my pain killers will work. It feels like a lightning storm has erupted inside my skull, starting in my left eye and working its way around. It can be like this for days. I can literally sleep for 48+ hours because the pain is so exhausting.
Other times I lie awake, wishing I could fall asleep, but the pain is keeping me awake and my body isn’t tired. I want to scream, but it hurts too much. I want to cry, but that will make it worse. Sometimes I can make it out of my room for food, other times my husband has to make sure I have enough supplies next to the bed to get me through. Sometimes I can eat, sometimes I vomit. My body can get sore from lying in bed too long, even though we paid for a orthopaedic bed. Sometimes I can make it to the bathroom by myself, sometimes my husband has to hold me as I shuffle my way along.
My life isn’t always like this though. On my good days I am like every body else. I take my dog for a run. I go out with friends. I go shopping. I go swimming. I go on dates with my husband. I watch movies. I am loud and bubbly and happy. On my good days you wouldn’t even know that I have an illness that makes me an invalid.
Though I have good days (which I am eternally grateful for), I am still chained to my bed. On my bad days the chain is short. I am locked onto my bed or in my house by the chain of pain that doesn’t allow me to go very far. But even on my good days that chain exists. It may be longer and allow me to go further, but at any time it may reel me back in.
Case and point, this morning I was going out to see a friend I hadn’t seen in a very long time. I drove out my drive and onto the road and WHAM! The pain hit with such intensity that I was retching in my car. Thankfully I hadn’t gone far and was able to turn around and make it back home, where I crawled into my bed to ride it out. The chain had loosened for a moment, only to pull me back in unexpectedly.
Long journeys are now out of the question for me. I cannot be far from a bed at any time. I cannot be without my mask and earplugs and pills. Where I once loved to go on long road trips with my husband, now we have to be content with short drives around our town. The chain doesn’t stretch far enough for us to leave town.
I am tired of the chain. I am tired of having to cancel on everyone repeatedly. I am tired of feeling like my life revolves around my bed. I hate feeling like a prisoner to my own mind. I am tired of feeling like my good days are a blessing rather than the norm.
I wish I could find a way to break this chain for good. Until then, it has a hold on my life.
I am a Christian and an outspoken one. I am proud of my faith and I am open about it with people I meet without shoving it down their throats. I don’t expect everyone to believe what I believe or follow my faith and I won’t make you listen to what I believe if you don’t want to. But my faith is part of who I am and I am not embarrassed or ashamed of it. I also love the church as the embodiment of what I believe. I think it is an amazing community of people worldwide who (most of the time) genuinely seek truth and love with all of their hearts.
However, I do have something that is really bugging me.
Today I was hanging out with three new friends who are all non-religious. They all grew up in religious households and they have all fallen away from faith. Why? Because they were hurt and rejected by people who call themselves Christian. Every single one of them had experienced hate and hurt because of ‘rules’ that were pushed on them. When they didn’t conform to those rules they were pushed out of the community of faith.
I wish this was an isolated incident. I wish I could say that they were the only three people I had ever met who were surprised that I was Christian because I was so “nice” and “non-judgemental”. But they aren’t, not by a long shot. Pretty much every single friend of mine who isn’t a Christian has a story of being hurt by people in the church. I have gay friends who have been told they aren’t welcome as they are. I know non-married mothers who have faced rejection. I know too many people who failed to live up to the standards of the church they grew up in/visited/their parents are involved in and still carry pain from how they were treated.
This is a story I have heard repeated so many times that I am weary of it. I am weary that there are so many people out there who have only experienced hurt, rejection, pain, hate and rules at the hands of people who preach love, peace and acceptance.
Don’t get me wrong, I am not a liberal Christian. I do believe that there are things that are wrong and that there is truth to be known. But, as a very wise man called Paul once said (though I paraphrase), I can know truth and I can know what is right and wrong, but if I do not have love then it means jack all.
Where are the stories of people who have been transformed by the love their local Christians showed them? Where are the people who say “oh, you are so loving, you must be a Christian”? Why do I feel like I have to do so much damage control when I meet non-Christians and they find out that I have faith?
This shouldn’t be the case. The church should be the first place people think of when they want help, want company, want to be included. It shouldn’t matter if they are a teenage mum, an addict, a homosexual. It shouldn’t matter that they don’t conform to a certain image - they should still know that the place to find love and acceptance as a human being is in a church.
We preach love. We preach that God has given grace to all people. We preach forgiveness. We preach about helping others. We preach about giving all we can. I so rarely actually see this happen. I hardly ever hear non-Christians talk about the help they have received from churches, the love they find in their Christian friends, or the grace they find in being accepted for where they are at.
What I see is Christians who have all Christian friends. I see them at Christian coffee groups and Christian outings. And while these are not bad (hey, I have Christian friends and do things with them!), and in fact I would say this is necessary to lifting each other up, this shouldn’t be our whole life. We should be taking all that stuff we know and love out to the people who don’t know the love and acceptance we do. If we go to church on Sunday and then spend the rest of the week with Christians, then when are we showing love to those who have been hurt? When are we helping heal the wounds others have created? When are we showing the love that we preach?
Otherwise what is the point of it all?
We are better than this. I know we are. I know so many amazing Christians who have so much love and compassion. I know people who would go miles out of their way to help someone. Are we simply not telling people that we are believers so they don’t know that the church loves them? Are we too ashamed of the pain that has been caused that we don’t even want to associate ourselves with helping heal that pain? Are we too afraid to face people and accept that the church has made mistakes that we don’t want to admit we are part of that same church?
I love the church. I love the people in it. I love that it is made up of broken people who have been made whole through our faith and in our communities. I love that we have such a history of believers that came before us. But we have to face up to the fact that that history is not always pretty, that we have done some terrible things in the name of God, and that we continue to do so. We can change this! We can be the people who start to mend hearts and change the story.
We can be love.
Note: I know many good people who do a lot for their communities and who are passionate about loving those outside of church communities. I am not saying all churches or Christians are like this. I am simply pointing out that, in my experience, there is a heck of a lot more hurt out there from churches than there is a knowledge that Christians are loving and graceful (and grace filled) people.
This post is dedicated to all my fellow unorphaned orphans. Some of you a friends. Some of you are strangers. You are all in my heart.
Unorphaned orphans. We are a small segment of society and one many people don’t realise exists. We are the children of parents who no longer have contact with us. We are the children who had to walk away from familial relationships. We are the children who were pushed out of our families. We all have different stories of how we got to where we are, but we all share some common characteristics. It is uncommonly hard to talk about being an unorphaned orphan, or the things that hurt us unintentionally by well meaning people, but I want to give it a go. On behalf of all my UO’s, this post is to help educate and enlighten others as to what it is like being us:
1. We don’t necessarily hate our parents
I put this one as number one for a reason. When I talk about how I don’t have contact with my parents anymore, people usually assume it is because I hate them and want nothing to do with them. This is so far from the truth that I have to make it clear here. Not being in a relationship with someone doesn’t mean you hate them. You can hate what they do, you can hate what they say, you can be angry and hurt, but you can still love them deeply and still wish you could have a ‘normal’ relationship with them. Sometimes relatioships just don’t work out. I didn’t choose to be made the way I am, they didn’t choose to have me as a child. It was luck of the draw and sometimes that means you get personalities that clash and problems that can’t just be solved by talking it out. I, and many others like me (though not all), still desperately want our parents in our lives, but we realise the impossibility of that.
If you meet someone who isn’t in a relationship with their parents, don’t assume they hate their family. Don’t immediately start bad mouthing parents and blaming them for everything. Don’t tell us how we just need to forgive and make up. Accept that maybe the situation is far more complicated than you can possibly realise and simply say “I’m sorry, that must suck.” Giving advice on a situation that you have no idea about is the worst things that you can do. We will often be very reluctant to talk about what we actually went through as it is hard to describe a tone of voice, a look, or other things that made our lives difficult. It is hard to explain the effect of the culmination of so many small and big events. We often can’t articulate it well and, when we fail to make others understand, it is awful to have them say “that doesn’t sound that bad” and negate everything we are feeling (and yes, I have had this said to me on multiple occasions). We are also aware that you may know or meet our parents at some point in the future and, as we don’t hate them, we don’t want to destroy their reputation. Our relationship with them wasn’t good, but that doesn’t mean we want everyone thinking they are horrible people. So if we do choose to tell you about our pain, don’t minimise it, belittle it, or try and fix it. Simply accept that this is our story and, whether it sounds like it to you or not, it was a big enough deal for us to walk away.
2. Holidays can be painful
Christmas, Mother’s/Father’s Day, Birthdays, Easter - all of these days are really painful to live through as an UO. Not only is the whole happy family thing shoved down your throat from every shop window, TV ad, and in every church, but we also miss the traditions we grew up with and the family unit we knew as children (dysfunctional though it may have been). It can be an acutely lonely experience, particularly if you do not have an adopted family to take you in and love you. I remember my first Christmas after I ‘broke’ with my parents. I cried because I missed them, I missed the traditions, because I knew they were probably hurting as well and it was my fault.
I have had people say to me before “but you choose to walk away, so why does it upset you so much?” Because walking away was the last option I would have chosen. Because when something is so broken that you have to leave it behind it doesn’t mean all the guilt and pain and love doesn’t go with you. Because I would much rather have a functioning family than spend these moments without them. But it is also because I miss the ‘idea’ of family (as opposed to the reality of what our family is). Society has built up family as and end in itself, and holidays are used to push this message home from every side. I miss the idea of a family that can be happy and loving with no issues, and the fact that it doesn’t exist will always hurt.
3. We are scared of love
I have found that across the board UO are scared of love. We don’t know how to accept love or how to give it. We are afraid of accepting love from someone as we are convinced that they will leave us. We are so convinced that we will get hurt, that we will subconsciously sabotage relationships in order to push away the person before they can hurt us or leave us. Even though doing that hurts us and leaves us lonely, the fear of abandonment means all rationality goes out the window. It took me three years of marriage before I realised he wasn’t going to get sick of me and leave. Not because he is an ass, but because my mind kept telling me that that was what people did to me.
We also don’t know how to give love well. We are either too distant or too clingy. We smother people or we leave them feeling like we don’t care. We have been hurt by the people who were meant to care and love us the most and this leaves a crap load of baggage that needs to be worked through. It can take a long time and only people with a lot of patience can handle it. When an UO meets another UO it is like we can suddenly talk the same language to someone - they understand and we don’t need to translate our own feelings. This means we value or friendships with people who understand and/or are patient enough to wait us out more than anything. Once we have found those people, they become life long friends.
4. We treasure our ‘adopted’ families and family members that stood by us
I started this list with how I don’t hate my own parents. I want to end it with a shout out to all the adopted parents, aunties, uncles, sisters, brothers, children that I have had in my life. Those people who opened their arms, hearts and homes to me. That held me when I cried and let me run away and then come back. Those people who never asked too much of me and understood that I couldn’t always give everything of myself. To the people who have defended me and laughed with me and screamed with me. You are as close to me as family and I am so grateful for you.
I am also so grateful for all the family members that stood by me. To my siblings and many others, who haven’t always understood my decisions but loved me anyway, thank you for accepting me for who I am and not trying to force me into decisions I am not willing to make. Your support is so important to me.
I know many other UO’s who have people like this in their lives. We treasure you more than we can possibly say. You fill such a major hole in our lives and remind us that we are worth loving. You help heal our hearts and minds and keep us sane. Without you are world’s would be so much smaller and lonelier.
So to you who is reading this - ADOPTED AN UNORPHANED ORPHAN TODAY!
My husband could kill himself.
When this thought first hit home I rebelled against it. I screamed at it, put my fingers in my ears and hummed to drown it out. I refused to accept it and flat out ignored it. And yet it persisted.
Opening my eyes to his reality was like a slap in the face. If I was to help him then I had to acknowledge how bad his illness was. Earlier this year, we had watched his mum pass away from terminal cancer. His depression is like a cancer of the mind, slowly eating away at his health and ability to function. And just like that cancer, it could kill him. I had to face that reality.
Surprisingly, when I did turn and face it I found freedom. I was able to acknowledge that it was not my responsibility to fix him. Just as I couldn’t fix the cancer through my love and care, so I couldn’t fix this depression. I couldn’t argue him into thinking happier thoughts. I couldn’t love him into happiness. I couldn’t take away his pain. And as much as that hurt, it also taught me about my limits as his wife.
I can’t heal my husband. But I can love him. I can advocate to doctors for him when he has lost his voice in the darkness. I can remind him of days when we were happy. I can hope for both of us for days when we will be happy again. I can hold him when he cries. I can pray for him, screaming at God for both of us. I can encourage him. I can cajole him to push just a little bit longer.
But I cannot fix him.
If he dies from this disease it is not my fault. It is not because I didn’t try hard enough or love him enough. It is an illness that saps all desire and strength to live. It is the place of doctors and psychologists to help him with the illness itself. I can let go of that responsibility and simply love him for where he is at. It is not my fault.
Accepting this means I am free from the burden of being the person who has to keep him alive. I can’t do that, not alone. It takes a community of medical professionals, friends and family. I am free of the responsibility and guilt if depression takes his life. Just as I am not guilty for cancer killing his mum, so I am not guilty of depression killing my husband.
Though I am free of this burden of responsibility, it doesn’t mean that this is easy. The thought of him dying terrifies me. I lie awake tonight, one of many nights, listening to him sleep and grinding his teeth, knowing that this is yet another expression of internal anguish, and it hurts me physically to know he is in pain and I cannot help him. I want to wrap him in my arms, tell him it will be ok and to fix his mind. I want to crawl into his brain and rewire it. I want to fix it.
But I cannot, and it is not my fault.
I have heard many stories of people who have lost loved ones to this illness and many experience guilt around not being able to help the person. I don’t know how I would feel if it actually happened to us, but I know that, for now, I am free of that guilt and that allows me the room to love him well. It means I can love him without fear, without blame, without him feeling guilty that he is not better for me. I can simply love him for where he is at and be at peace with that.
This is not his fault. Nor is it mine.
Loving someone who wants to die is rough. Your heart aches and bleeds for them and there is nothing you can say or do to make it better. If cuddles could squeeze out depression then Luke would be cured. If kisses could fix mental boo boos then he would be fine. If love alone could make him happy then I know he would be full of joy all the time!
Some days are better than others. Some days are merely ‘meh’, where he feels little but can still have a laugh. Other days I hold him in bed while he weeps and asks when he will feel better. Some days I can go out and not worry at all. Other days I have seriously wondered if I would find him dead in the house somewhere.
Living the reality that the person you love the most could take their life at anytime is one of the hardest things I have had to face. And seeing the amount of pain he is in, I wouldn’t blame him or be angry. I would understand that he was exhausted, that he couldn’t fight anymore. I see his exhaustion and I wish I could give him strength to keep going. I know in some ways I do, I know I give him the emotional support and strength he needs, but I can’t give him the physical strength that I want to.
I have watched the man I love in a battle for his life and I have been unable to fight with him. I have only been able to stand on the sidelines and cheer him on. We both understand mental health so we checked all the boxes on what you are suppose to do - we got him on medication, we made sure he ate regularly and (mostly) well, we tried to get him to exercise as much as we could. Thank God for our doctor who took us seriously and got him on the best medication straight away. We called helplines and reached out for psychiatric help, but the mental health system in NZ is so broken. It is now December and we are still waiting for the mental health team to contact us. We have had no professional help from psychologists as there is no help available in our town. We have yelled and screamed for someone to help us, but even as an urgent case there is still months of waiting . So we have battled without psychological help. Ads on TV tell young men to reach out for help with depression, but what if there is no one there at the other end when you do?
Depression doesn’t just affect the person who has it. It takes a toll on their family too. We are both running on empty, both exhausted mentally and emotionally and we don’t know how long it will be before the mental health system swoops in to help us.
Luke is one of the strongest people know. He has had to battle his head everyday just to survive and he is still here. I see his exhaustion and the pain he is in and I am so impressed that he keeps going where so many would’ve given up. My heart has been broken for him over and over and I know it is only God that gives us both the strength to face this.
we have amazing friends who care so much about Luke. Friends that drop everything and come to take him out. Friends that cook us meals. Friends that ask if I need a break. Friends that pray and fast for us. We could not have done this year without you.
I love Luke so much. To those just hearing about his struggle for the first time, please don’t inundate him with texts and calls. He can’t handle it. We have a rule in this house that there is no such thing as obligation. We will cancel plans if we need to, not talk to people we don’t want to, not go to things if we can’t face it. We are in survival mode and this may offend some people. Luke’s life is more important nt to me than whether or not we offend you. Please understand that.
In honour of ten years sober I am reposting my story that I wrote a few years ago. It may need some updating now but it is all still applicable.
A blog about life, love, theology and everything on my mind.
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