You know those moments where it’s one thing after another, & it’s often the stupidest, most easily avoidable things? That’s me lately. In fact, I keep visualizing that fairground stall with the things that pop up out the hole & you must try to shoot them before they sink back into the hole again. Except, this is real life. “Shooting it” is messy, the prize isn’t an adult size stuffy teddy bear, & most likely you find yourself saying: “I think I’m done, get me off this ride now.”
On Tuesday I did the stupidest thing. I put my glasses down, which slipped without me realizing from where I had put them &… I sat on them. My dad asked me if they broke because of the size of my bum, I told him no, it was because I have buns of steel. I wish my butt was made from steel, but let’s not go there.
You see, I didn’t just break my glasses. I broke my life line. I rarely talk about my hearing, but Tuesday I was confronted with quite a serious issue. I can’t hear, & now I can’t see. My sight isn’t the best, the shocked faces of those who try my glasses on tell me that. You know, just in case eyeballing my laptop keyboard didn’t give me that message. But even still, because of my hearing loss my sight has become my dominant sense. Go figure, our bodies are crazy cool. My level of dependency on my sight is insane… & without it, I don’t just struggle to see, I can’t hear.
I read an amazing quote recently from a lipreading person & I thought it was so perfect:
“There is a misconception that lipreading is just like reading a book. You look at the mouth & read. But no, it’s far, far more complicated than that. I have to queue up words in my mind, invent possibilities that fit the facial expression, body language, approximate number of syllables etc etc. Sometimes there are a couple of possibilities, & I hold both in my mind simultaneously, waiting for it to become clear. While I’m doing this, collecting possibilities & sifting through them all, I need to keep the conversation going. So I smile, nod, & say “mmm” & “yep…” as appropriate. If I don’t do that, the speaker stops, & we haven’t gotten anywhere. Sometimes though I get right to the end, & I realize that none of the possibilities work. The whole thing just doesn’t make sense. & then I have to say, “Sorry, can you go right back to the start?” & you might wonder, well why were you nodding & smiling & saying yes all along when I didn’t understand. But that’s because it’s how lipreading works. It’s not a lie. It’s the only practical way to do it. It can take a whole minute or two after the speaker finished, that it suddenly comes to me what was said. As you can imagine, this is incredibly hard work. I have an hour of lipreading in me a day, tops. After that, fatigue sets in. And if I go too far, pushing myself for maybe 3 hours, I am WIPED afterwards, & my head pounds. It can literally take me days to recover. This is way I prefer other methods of conversation….”
I WISH I wrote this. This quote is 1000000% accurate. My mum can tell you horror stories of how frustrated I would be after school each day. As an adult, the many “side effects” still exist; like how more days than not I struggle with headaches & feel overly stimulated. But every single day I fight my hearing loss & refuse to bow down to this disability. My ability to cope is a rock. But it’s a rock that’s balancing on a very fragile system of “everything must go correctly in the universe.” Take away my glasses, my rock suddenly free falls.
Ironically yesterday God talked to me a lot about His Provision. How He is strong like denim & tenderly compassionate like lace; & how He goes ahead of us to make a path possible or to soften a heart. So, when the butt snapping glasses incident happened I had a deep sense of peace. It didn’t take away the freak out & the tears but the first thing I did was point out to God who He just said He was, & that I really needed Him to show up because I was massively screwed.
What followed next was: (1) I found an old pair of glasses that are old, awful on the prescription & give me a monster headache but it’s better than nothing; (2) I went to life group later that evening & they immediately spoke encouragement over me when I told them what happened; (3) their offer to help practically was also immediate; (4) a friend from the life group arranged for me to see an optician yesterday; (5) the optician ever so graciously gave me a discounted rate for the test eye & offered to get me free trial contacts to tie me over until I get back to the UK; (6)…
You see 1-5 can be examples of the Almighty Strong Denim God. God the go getter, fighting for us, lining everything up: friends, support, practical help… But point 6 was my highlight.
My friend who organized the appointment with the optician wanted to pay the bill. He’s the kind of guy who is so quick to extravagantly bless people where finances are involved, & normally he won’t take no for an answer. This time around however, when I said no to his offer, he accepted it. It was only later as I reflected that I realized something. I don’t know why he accepted it. Was he strapped for cash? Or did he have discernment & understand the importance of letting me pay? Either way, his actions of lining up an appointment for me & allowing me to pay for myself gave me an incredible sense control in a horrible situation. Not control like pride, but control in the way of a real sense of dignity & empowerment.
You see, as humans we are all trying to reach for the same key things right? Ability being central. Ability to work, be in community, live life to the fullest… Being “disabled” is “simply” a matter of trying to reach for the same things as an able person but having to make significant adaptations to get there. We are a strong group of people; & now that I think about it, that makes us quite powerful I guess. We fight for our quality of life every single second of every single day. Most of us do it “behind the scenes”, taking ownership of our disability & the fight for quality privately on our own shoulders. We so often “just get on with it.”. We fight simply, & for no other reason than because we have a deep desire inbuilt into our human DNA, just like an able person, for connection & intimacy.
Every day we face separation, isolation & exclusion in every area of our lives. And maybe that’s why it’s so powerful when someone comes along side us individually & communicates: I see you. Remember what I once quoted? “Intimacy: Into Me You See.” So yes, whilst we can fight & do what we need to do, we also understand how precious being connected is. I don’t know if I can describe what it does to our souls. There is LIFE. You bring someone life, real tangible life when you communicate they are seen & not alone. It’s easy to do the obvious surface level seeing but the deeper seeing is a whole different ball game. It can be a friend reminding another friend to not cover their mouth with their hand when they speak to me, or it can be the honor of a wish to let me pay the bill.
This is the tender compassion of God. Lace. I, the LORD your GOD will provide for ALL your needs. Both Denim & Lace. He meets us in the practical, & He meets us in the heart stuff. He doesn’t just care, He sees. Me, Akila Knight, a speck on planet earth, who is currently trying to ass crunch her way through life is Seen.
Tuesday night I was with my church small group for our weekly “doing life together”, and we were talking about guilt and shame. I have to admit I felt pretty detached throughout the whole evening but towards the end I started praying & a revelation literally hit me so intensely that I lost it crying.
Exactly 5 weeks ago today I went to visit the hospital; and I was diagnosed with PCOS. My revelation on Tuesday night was that since that hospital trip I’ve been walking around with so much fear, and so much shame. My head knows truth, my heart is struggling to stay on the same track.
PCOS is short for polycystic ovarian syndrome. Apparently it effects 10-20% of women, according to the internet, though I’m not sure how much I trust the internet. I don’t know about you, but sometimes when I feel a little sick I try to diagnose myself by googling my symptoms. And every time I do so Google tells me I need to seek urgent medical help because I’m basically dying of some random disease that I’ve never heard of.
I’m going to save you the biological lesson, you can Google “PCOS” and research it yourself, but basically I’m not producing the hormones needed to release eggs and that has a knock on effect in other ways. For example it also messes with insulin and causes one to be resistant to insulin. If you don’t get that under control then it can lead to diabetes and heart disease.
The great news is I don’t have diabetes and there’s a lot I can do to keep things going in a good direction – eat a low GI diet, exercise, be healthy… basically do all the things I should be doing anyways. But there is one key thing that it also effects, fertility.
I have talked to people since finding all this out but I don’t tell them the fertility part. Just the insulin part. I call the PCOS, “a medical condition”. It’s not that I don’t want people to know, it’s I just don’t know what to say. What do you say? Actually… there is a lot to be said. Which brings me to my blog.
PCOS causes certain things to happen, for example a bit of extra hair in places. Thankfully that isn’t such a big deal except I do have slightly hairy feet. Once a boy called me monkey feet and since then I wax them all the time. I hate my feet. Even if they are hair free which they usually are… I still hate my feet. And I still think that boy is a loser. Because he spoke something out over me that I still today, 15 years later, cannot shake off.
It also causes weight gain because of the whole insulin factor. The weight thing is a battle. Girls as a general statement have a real issue with self-image. My testimony for those who know it has been my battle with proving my self-worth. In every way not just self-image. I put on weight and the king of lies has a field day with my head.
But then losing weight, well that’s ironic in itself because now I find I’m fighting the battle not to take things in extreme ways. Right now I feel like there is so much riding on losing weight. The words in my head, “if you lose weight everything will be ok” and “you’re not good enough, you’re not good enough, you’re not good enough…” over and over again. Do I believe that, my head tells me no and I truly believe no. My heart, well Jesus is working on its conviction.
But the fertility thing. I never really imagined having kids. I guess I just hadn’t met the guy I wanted to have a family with. But I know I love family, love doing life with others, and I don’t want to be alone. I really do hope God has someone for me… But that hope is being challenged. Fertility is a big deal. And for many guys a deal breaker.
I genuinely believe all life is from God and if it’s His plan on my life it WILL happen. I feel really quite chill about that! But I just don’t see a guy being ok with it. I can’t envision a guy having that kind of faith. Am I belittling people’s faith – no, not at all. What I’m saying is I don’t think a guy will have faith in me. I can’t imagine being good enough just as I am for someone else. I can’t imagine a guy would pick me: Akila, with PCOS, and her monkey feet.
But I really really DO hope that God will include someone else in my story one day. And yes, yes, yes I KNOW if a guy picks me it will be because for the great qualities haha. But remember there’s a tension between head and heart right now.
But there’s something else I realise in all this. What I’m actually journeying with is not PCOS itself, but lies that I have allowed to be spoken over me which cause shame. I’ve even realised I thought I wasn’t sharing my news with others to be appropriate but actually I was just hiding out of fear and shame. “Akila you are not good enough and you really shouldn’t show others that awful side of you.”
Well Satan get on your bike and do one.
For a long time God used Mike’s death to show Himself to me, and show me my identity in Him. Now, like a multifaceted diamond, I have a whole new adventure to go on that will reveal even more to me.
I’m really honoured you are reading this; and please have total freedom to talk to me about anything. I really hope as I journey through this, and write, that it brings you hope too. But please do remember this blog is my space and I will be real. For some that might result in a decision to not read this blog. And that’s ok. I’m choosing to speak openly and honestly like this for the very simple reason…
… When a light shines on a lie it becomes powerless. When things are declared publicly, something happens in a spiritual realm. Given the situation I am supposedly in, and given that my bible tells me all I need is faith the size of a mustard seed, I’m not even going to debate this in my heart I’m just going to chose to take that leap.
“For God has unveiled them and revealed them to us through the Holy Spirit; for the Spirit searches all things diligently; even sounding and measuring the profound depths of God, the divine counsels and things far beyond human understanding. For what person knows the thoughts and motives of a man except the man’s spirit within him? So also no one knows the thoughts of God except the Spirit of God. Now we have received, not the spirit of the world, but the Holy Spirit who is from God, so that we may know and understand the wonderful things freely given to us by God.”
1 Corinthians 2:10-12