There are many questions going through my head these days. There is also a lot of irritation. I wish there wasn’t. The questions seem fair, but the irritation seems like an unwanted scratching of fingernails across a chalk board. Yuck! Always makes me shudder.
It is no secret that I’ve been diagnosed with rheumatoid arthritis. I’ve not gone on to a mountain top to shout it out – so if you’ve not been told, don’t be offended. I perhaps haven’t got around to it. I thought I’d be given a pass on it – and despite it being on my mum’s mind, that I might inherit her disease. I don’t remember being ever unduly worried. I remember dismissing her fears though. I remember telling her that there is no point in worrying about it. It’s not that I had a grip on things and knew exactly what I would do if I ever got it. I’m not that organized! It was just that I never thought I’d get it. When the pains first started in my fingers and then my wrist, I attributed it to my own carelessness. I was very sure that I had somehow crushed my fingers or knocked my wrist on something, without realizing it. I was very sure! In fact, when my left knee first swelled up and throbbed like crazy on the morning of church camp, I was dead sure that I’d somehow hurt myself in my sleep! It never crossed my mind that this is what I had. So, when it was suggested to me that I see a doctor immediately because it may just be RA, I was quite happy to laugh it off. I delayed going and got nagged and so I finally went with an ‘I’ll just get it ruled out and that’ll get them off my case!’ I was so sure it was something superficial and that I’d be over and done with it in a tick. Well. Apparently, I can also be wrong!
There were things that happened as a result of the diagnosis. There was a bit of fear that crept in. I had seen what the disease had done to my mum. Let’s just say, it’s not exactly inviting! I also felt excessively tired. That was such a new feeling for me. I mean – I’ve known tiredness but nothing like this. This tiredness consumed my body and my mind. I wanted to check out of everything and sleep. I’d somewhat recovered some of the buzz in my life after losing mum and going on a journey of acknowledging that grief and its effects in my life. Things were looking good again. I was enjoying it all. Fear and tiredness are not a very good combo. I felt myself digging in – sometimes I felt like I was digging into my memory of my mum. Sometimes I felt like I was digging into my own strength, which didn’t feel very secure. At points, I felt like I was digging into God, which felt strange. I mean – it’s one thing to pray for something you want – but it felt like something else to pray not just for something you wanted but for something you really needed. I hadn’t quite got used to digging into God for this: not at the point of the diagnosis.
Yet – God is faithful. I say this un-waveringly. I have fewer memories of my mum without the RA than I do of her battling it. However, I never thought it would really happen to me, as a result of being convinced that God had really blessed me with a super-power that would show itself once I figured out how to unlock it. So, I found it difficult to really draw from memories of my mum. I confess that I felt a bit of a failure where she was concerned. I know my mum was a very strong woman and that her faith enabled her to push ahead despite the debilitating disease. Yet, my mind kept spinning to conversations that she and I had had countless times about the disappointment she faced because of the disease. She so often spoke of things that she would’ve loved to have done together with me but that she was forced to forgo. She spoke of dreams that couldn’t ever become a reality because of the RA. She cried genuine tears for the loss of prime years, for the stress that her illness put on her marriage to my dad and for how she couldn’t always display the vulnerability that she needed to family or friends. She spoke of embarrassment at not being able to do things and of how she disliked being photographed because she felt the deformities showed. She also rued not being in photographs for the same reason. These thoughts didn’t bring me comfort at the point when I was first trying to make sense of my illness.
It got a bit too much for me and I quit a job that I loved in a workplace where I had some amazing colleagues. I could feel myself going all strange, trying to figure this out. I didn’t like and I still don’t like it when people tell me to rest. Like really? You think I don’t know? I have mini explosions inside every time I hear this word: ‘rest’. I do at points wish to remind them that that I am not a sheep. Maybe rest would come easier if I were, with my mouth full of grass, stuck somewhere in a herd of cattle, not needing to move too much. You are preaching to the converted! The irritation has run high at such points!
I got my diagnosis in the middle of June 2017. It is now March 2020. Soon it will be three years. A lot has happened in these three years. Have I told you? God is faithful. Questions started popping into my mind. I started reading up more about the illness – and I wish there was as much information about it when it first struck my mum, as there is now. How she would’ve benefited. These few years, I’ve spent my time, making my home friendlier to a sufferer of rheumatoid arthritis. There are lessons that happen over the course of time. Learning experientially isn’t always as fun as they say it is – I could write a module arguing against it! Yet – experience is a wonderful teacher and my mum was indeed a wonderful example. The disappointments that she voiced were a real godsend. God used them to help me start making the necessary changes. God used some of the sadness she expressed to help me recognize issues that I’m facing right now. For instance, I love entertaining. I want to be able to have friends over and as much as I can’t do things in exactly the same way I used to, which initially made me very sad, I have started trying to figure out how to do what I love in a way that I like. It means making changes. It’s not always easy to make a change. Another example is when I went to a historical state with a couple of friends in January this year, I almost died. I’ve been to this state so many times and I’ve walked for hours on end, without batting an eyelid. This time, I wanted to collapse in a heap by the ruins that we visited. Yet – I found it extremely hard to say that I needed a break. Thankfully, the heat in Malaysia made it difficult for my friends to do as much and they said they wanted a rest. That was my saving grace! These friends of mine are lovely and they wouldn’t have minded it I had wanted to sit something out or if I had said that I couldn’t go on. Yet – I was embarrassed at my shortcomings. It was something I hadn’t figured out. The next time I plan an outing, I’ll think better about things and I’ve psyched myself up to be able to say what needs to be said. Another thing that mum used to talk about was the lack of understanding that there is – among loved ones and people who really ought to know better! I’m beginning to see what she meant more and more clearly.
There are people who have taken offence when I’m unable to shake hands with them. On days like that, I’m not necessarily in the frame of mind to explain that I’m in pain. I’m probably using up a lot of energy already to just be present. There are the friends who look at me on some mornings and exclaim how terrible I look! Thanks! I have a mirror at home – which isn’t cracked, contrary to popular belief. If I look terrible, it’s probably because I had to wake up at some ungodly hour – just to try and overcome the crazy levels of stiffness in my joints – just so that I wouldn’t be crazy late. I would’ve probably been drenched in sweat thanks to the pain and that may have covered up the fact that I really tried to look presentable. In my head, I’ve perfected Captain America’s throwing of his shield right into their mugs. ‘See how good you look after that’, is what I say triumphantly in my head! Usually outwardly, I manage a wry smile. The list is endless.
God willing, I’ve still got some time left on earth. I like earth! I need to work and socialize. I don’t desire copious amounts of rest, though I need a fair bit. I want to dance – but I don’t think my joints will have it anymore and there are things that I feel may not be what I will do again. I won’t be walking for 18 hours on end when I go on holiday. I won’t be planning a strenuous holiday. I’ll not be sleeping in a capsule ever again (like ever!). My days of wearing high heels are gone – and with that, ends my ability to create the illusion of my ideal height. I can’t wear my rings on most days, and I find anything that rests on my joints – like bracelets or necklaces, a right chore. I want shoes that are easy to wear and that are super comfortable. I don’t want clothes that have terribly fancy buttons or hooks – oh heavens! Keep those away! My days of wearing sarees are over – as much as I love them. I love baking – but I’m not going to be able to bake for weddings and large crowds. I think I won’t be doing any large-scale cooking either. I won’t be buying heavy books to read, no matter how beautiful the covers are. The list is endless and what sucks most for me is, it is likely to grow.
Anyhow, I can’t stop living! There’s too much life inside of me. I desire those conversations with friends, where you either laugh till your sides split or you spill a few tears. I desire connection with people – hopefully in different ways, since I can’t do too many ‘fun’ things these days. I don’t want pity. Save that for someone with a severe case of hypochondria. You’ll get further there! Yet – some understanding would be great! I don’t want to keep explaining that this is what I suffer from: if you can remember, I’d appreciate it. Otherwise – never mind! Just go play in a different park. I’d also like a safe space: to express the fears and disappointments that my mum was able to as it keeps things honest. I’d like to be honest with myself and with you. This means, if I tell you that I worry about how the RA is affecting my eyes, you don’t start thinking of me as weak. It means if I tell you something isn’t possible; know that I’m not giving up quickly. Recognize that it’s rational fear or consideration of anyone who’s independent and practical. This list is also endless! There is one more thing that I should add to it though.
Through this pain, I want to remember God. I want to remember that Jesus is good. I want to remember that He is merciful and compassionate. I want to remember that I am here to serve Him and that even if full healing is not what He desires for me right now, that I will never stop remembering that I am here to serve Him – not vice versa. I want this fire to never go out, even on the days that I don’t want to get out of bed. I want this reality to always sit with me, as it did with my mum. I once told her that I wished I could carry the burden of her illness for her. She rebuked me by saying that what God wanted for her in her walk with Him was not for me to interfere with. How right she was. I don’t want pity and I don’t want bucket loads of soppy sympathy. I am on a journey and God is my pillar. He is my strength and He has guaranteed me salvation. I’m learning so much about Him and it is wonderful. He is so real, when I am open about my pain. He promises me an eternal blessing: ‘So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.’ (2 Corinthians 4: 16 – 18).
For the things that are seen are transient, but the things that are unseen are eternal.
I do thank God for the amazing support that I have in Him and for some of my loved ones who are constantly there for me in a real sense.