Bring the Music! #Lupus Diaries

I had a rough day today. But I was determined not to let it bring me crashing down. So I bit down on my jaw and dealt with cycle 2 of chemo. No radiotherapy for a few more days, thank God! I was doing pretty well until the lady in the chemo couch next to me decided to deal with a bible-thumping praying companion.

I don’t think my chemo neighbor is against prayers as such. From what I gathered of her completely unexpected outburst, she was only against prayers that ignored all facts, negated all efforts and wished upon dying stars to rain down miracles, ‘so you can go home and not have to deal with the fact that I have bloody-bad-word cancer!’ I suppose this was made all the more worse by the fact that the bible thumping prayer warrior was not an every day companion but someone who had come to visit about 4 months after diagnosis and was not entirely aware of the many battles, triumphs and defeats in-between.

There was silence. Then I came crashing down with hysterical laughter-sobbing-oh-my-lord-I-am-emotional-about-someone-else’s-family-fight!

It got awkward. Prayer warrior eventually walked out and left cancer warrior with her generals – an ever present husband and a daughter taking time from work to hold mama’s hand. Daughter crossed over and held my hand, gave me a wet wipe for the crazy tears and then we started telling tales of the awkwards, the ‘don’t say you have cancer’ or ‘lupus’, the many ‘if you accept it, you have given up’.

It is awkward. It is horribly awkward. You don’t understand it because you haven’t lived this war and come out wanting to be alive more than anything. You don’t see how a human with their mortality served up as breakfast every day can still love, laugh and live without giving up. Surely, where death lurks behind the door there shouldn’t be music, dance and laughter!

All you can see is the mortality. And it makes you feel awkward and helpless. So you are tempted to pretend that a miracle will happen and this will just go away. You wish. Because then you can stop feeling helpless, and awkward. So you pray, and wish upon stars, except maybe you don’t really do that for us. You pray and make those wishes so you can feel better. 
Of course, we value your prayers, and your thoughts. It means we are not entirely alone in this battle. 

But this war, this war has camped and dug its heels in our front yard. We can’t wish it away. We wake up every morning and count our ammo and our wilderness survival supplies. No choice about it. 

We think about the ambush the enemy may have planned, or maybe not, but just in case, we prepare. Sometimes, we are rousted from sleep, and routed into the battlefield before we are quite awake. So we have learnt to go to sleep with the weapons ready and the supplies at hand. Some of us even sleep with our boots on. So yeah, a sleepover might be awkward, awkward for you at my house, awkward for me at your house. Yeah, maybe it won’t happen.

When you discover that we have an inner circle of warriors, people who step into the closet with us and hold us as we wail with momentary despair, who join us in shooting blindly at the bogeyman through tough and dark nights, sometimes hitting the mark but most times not, who keep on marching with us when we dare march the battle in the daylight, who drive the demolition derby with us whether by sunlight or spotlight, never tiring, always on guard, always fighting…

Of course, it is awkward. Because it is not your war, and this one is not your battle. Unless you choose to make it yours, and join our army of warriors. And even then, some corners will be awkward, but at least then, you’ll have committed to the awkward, the waves of helplessness, most of the insanity and pretty much all of the GOOD TIMES!

Oh yeah, we have those too. Good, really great times. But chances are you’ll probably only witness them if you are in the inner circle. So don’t feel pity, or sadness, at least not for us.

We value your kind thoughts, and your prayers. But maybe don’t try to fix it. Don’t try to wish or pray it away. Pray, instead, that we have strength to fight one more day, that the medication and therapy choices work, that we see more of sunshine and laughter than darkness and pain.
If you really must step into the battleroom, bring the music and the dance and the laughter. Except maybe not so loud, but bring it!


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