I’ve grieved for the loss of a loved one, felt pain because no matter how much I wanted them to be with me, they simply couldn’t be anymore. I’ve felt grief in shattering heartbreak, as I had to understand that the person and relationship I yearned for no longer existed.
But most recently I’ve experienced a new kind of grief, which is a mix of the very worst parts of death and heartbreak, because I grieved for the one person I knew better than anybody else — my old self.
I only have two modes of operation. 95 percent of the time I’m coping much better than I ever should be and the other 5 percent I’m breaking down harder than I’d ever willingly admit.
In that minority, I allow myself not to be okay. I’m heartbroken and grieving deeply for the loss of the girl I assumed I’d always be because she can’t ever be a part of my life again – she no longer exists.
All my life I’ve always had a problem with pride, in that I have too much of it. I’m too proud of a person. I never want anyone to see me when I’m vulnerable and hurting. A large part of me is ashamed of the prospect of failure or the thought of appearing “weak” to the outside world.
However, lupus taught me many lessons in the last few months. A big one is in relation to self-acceptance and patience – two areas where I am very much lacking.
I’m learning to be accepting of the fact that even though I’ve always been my own harshest critic, the rulebook is not only torn up but also thrown out the window. Therefore, it’s time to readjust how I judge my situation.
The truth is, if I was to have a conversation with the “old” Kristi, I know she would never be as hard on me as I am right now. She would show me nothing but compassion, love, and support – the three things I’m in dire need of showing myself.
In some ways I’m struggling to accept that some things just don’t work the way they used to and that I need to let them go along with the girl who was admitted to the emergency room in May. That’s probably one of the hardest things I’ll ever have to do.
The truth is, I’m not quite ready to completely let go of her. She’s helping me work hard to find balance in the game of tug-of-war I play between my unforgiving, determined mindset and my ever-tired, lupus-affected body.
Unfortunately, I’ve had to accept – especially at this moment – that I’m simply not physically capable of the same things I was a couple of months ago, though I’m not at all resigned to this fact.
If I am to judge myself solely on what she might have been capable of, then I will spend the rest of my life never truly knowing if I could have reached my full potential.
My potential is not any more or less because of my lupus, it is merely different.
I have the responsibility to myself not to stop climbing mountains, but to climb different ones.
Two years ago, as part of netball preseason, I ran up and down these nasty flights of stairs. We ran all the way to the top and back down, before running back up to the second set from the top and then back again. We repeated the process, knocking off one set each time, before arriving at the bottom. Then we did the whole thing in reverse.
This is my future goal, this is my mountain.
At this point in time I struggle to run one complete lap, so instead I walk up and down those stairs until I manage to find myself back on the sand.
There are twelve sets of stairs and 1,154 stairs in my final goal, of which I can only complete half at this point. But no matter how much my legs burn or my heart races I will finish climbing my Everest.
I do this in memory of the girl who lived free of limits. I think about her every now and then, and cry for her often. But as I make my way up and down those stairs, I feel her take my hand as she reminds me:
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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