RESEARCH AS WORSHIP?
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28th February is rare disease day. Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. It's a day where many of the diseases that are classed as 'rare* get some representation in the public eye. I confess, I knew nothing about it (and I'm guessing most of you don't either) until I was diagnosed with a 'rare disease' in January of last year. Now (with a recent second rare disease diagnosis), I'm obviously keen on promoting it! Or at least, I kind of am.
Part of me doesn't like when a disease becomes our chief focus, when all we do is fight for recognition of our own TINY story in the middle of a world of people with stories that should also be heard. I don't like claims of 'my disease' or the expectation that people should know all about me and my life, as if it's more important than the 12345678900000 diseases and hardships out there (I made that number up, but you get the idea).
BUT
I also realised that because we love, serve and walk with a God of redemption, even taking part in days like this can be done with a heart to worship and grow and focus on life and things beyond ourselves.
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I realised this because yesterday, I found myself sitting in the office of a wonderful Professor of Hematology who's kind of a big deal. This kind, gentle and exceptionally intelligent man was drawing me pictures of antibodies and red and white blood cells, and fats and clotting factors and anticoagulant proteins, and as we talked and I listened and asked more questions, I wasn't thinking about how horrible this condition is. I wasn't thinking about the risks and consequences. I wasn't thinking about the lifetime of injections and needles (that's already just become normal). I was thinking Wow, God is crazy smart! I was thinking about how great he is. How creative. What an incredible architect and artist and scientist and designer, because who on earth could come up with such an incredible design? All mankind's years of trying to discover the human body have left us now, in 2018, with more still to discover than we actually know and understand. Amazing. And what an amazing God to design and create it.
My hematology/immunology lesson had become a moment of silent worship and awe.
And with that, I want to encourage you to participate in rare disease day, and it's quite fitting that the theme this year is research, as you'll see. Participate:
As an act of service to a friend:
I'm sure you know someone with a rare disease. Why not find out about their condition and what it means for them and find out how you can better love and serve them with that in mind? If you're stuck for ideas, then visit this list of rare diseases.
As an act of worship:
Why not research their condition and marvel at the way we've been created, and at the mind and abilities of The One who was able to design and create?
As an act of giving:
If you're feeling generous or the Holy Spirit puts it on your heart, donate to one of the charities or buy something that will mean a contribution to a cause. SO much is given every year to well known diseases like cancer, diabetes etc and so little to some of these where people would love to see a cure too!
I'm thankful that God is teaching me in this season how to participate with the community of fellow patients in which I find myself, without my focus being on the negatives, and instead, is showing me how to let it all be an opportunity to grow and love and serve and worship.
May this Rare Disease Day also be one in which you get to marvel and wonder and ultimately worship the one who planned, designed and intricately knit us together.
*In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. ... In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people