I keep putting off writing here until someone demands that I do. The person who now demands my attention is a beautiful young lady I met at the clinic. She is 14 years old and suffering from a form of autoimmune disease that could be life-threatening.. We got talking while we waited for our infusions. She has apparently been reading my blog since we met and I told her I am a writer. She is going to be a Social Justice Activist she told me. And I am going to be brave, I thought.
Ms. Social Justice asked me why I am really not writing here anymore. She is convinced that I may have encouraged someone to keep fighting by sharing my emotional spirals as I coped with Systemic Lupus. She believes, and I know, that the scariest thing about being chronic sufferer is the fear that you are the only one who feels or suffers the way you do. Knowing that someone else out there has gone through what you are going through and is prevailing can be very comforting. So why do I refuse to let someone know they are not alone?
I don’t refuse. I just haven’t been able to. I am emerging from an incredibly long period of not being able to think straight. I walked into a loop of unrealistic expectations, surprising disappointments, anxiety and the very real fear of letting down my family that I missed seeing the big picture. It wasn’t until my doctor told me I had to evaluate my life and let go of things that are likely weighing me down in order to have a fighting chance at survival that I started to see a way out.
See that’s the thing about any chronic sufferer, whether it be that you are dealing with Lupus, MS, Sickle-cell or whatever it is. You have to be able and willing to evaluate where you are every so often and assess whether what you are doing is right for you and is going to make it easier for you to live a longer, better life. I didn’t actually get that until I was lying in a hospital bed listening to doctors talking about my prognosis.
The way it had been before is that I almost acted as if I was completely fine. I’d spend days unable to see or talk, then as soon as the fevers broke, and I could get into my clothes, I’d try to get to the office and see what was going on. I have walked out of hospital with the IV line holes still stinging and gone into the office because I was scared if I didn’t I’d be the girl who started a company and then couldn’t run it. I tried to fit in as much as I could into the time I had, never mind that what I could fit in barely made the cut of excellence. This incredible fear of being a useless member of society completely blinded me to the very real threat of running myself to the grave.
My therapy had to change drastically when the doctors found pituitary adenomas that had obviously been growing awhile. I had taken to popping painkillers for constant migraines and moving on, only seeing my doctor when the pain and fevers were so bad I could barely breath. I insisted that the pain was only because I was under quite the strain of setting up a new company.
Even after I was diagnosed, I still wanted to act like there was nothing wrong. I had bloody tumours in my brain and I was fine?! I took my meds, and then I tried to be alright. But I wasn’t, was I?
My friend, probably my best human friend, may or may not have talked to my mum behind my back. It took her a whole weekend to convince me that nothing mattered if I did not survive long enough to make it matter. Long conversations, with my mother, with daddy, and with myself followed.
But the thing that caught me right in the solar plexus was when the doctor told me that the tumours were causing a stress response in my system, and that added actual stress was compounding the problem. The result was that my pre-existing autoimmune disease was now aggravated and the tumours were growing not reducing in size. I was basically not responding to any of the medication I was on. She didn’t say it. She didn’t say I was going to die. But when she said I had to change the way I thought of my life and the way I was living it, I heard the ‘…or you will die.”
It hasn’t been long enough, I know. I still wake up to incredible pain in my head in the middle of the night. I had a serious case of septicemia two weeks ago. My right hand has been numb for a while. So yes, I know I am still struggling to get to a better level.
I just hope that I can finally find that balance and keep it.
Ms. Social Justice says something each time when we are parting ways to go into our infusion sessions.
“Butterfly, fly, fly away…” and then she giggles.
At first I thought she was referring to the Lupus butterfly, but Ms. Social Justice is not a Lupie, so I wasn’t so sure. I asked her what she meant and she reminded me about the process butterflies go through to become butterflies. She told me she thinks of being sick as a transformation process, a process of becoming stronger and better for whatever amount of time she has. By the time a butterfly’s life comes to an end, it has shown amazing resilience, adaptation and survival, but above all else it has spread beauty and brought on a new cycle of life.
Butterflies live relatively short lives, but in that time they change, adapt, spread beauty and carry on life for the next generation.
The lesson of the butterfly is letting go of old negative behavior and expounding into the next phase of life, transforming through multiple stages and various challenges that come up in our life.
Something for me to think about.
Fly, fly away, butterfly.