Despite being many years into this “new normal” of being chronically ill, I’m still coming to terms with the fact that I may never truly get “used to” this new life. I may never become completely accustomed to and unfazed by endless pain, countless symptoms and spending more of my time in waiting rooms than I would care to compute. In some ways maybe it would be easier if I was “used to” all this, but when you think about it, why should anyone ever get used to this? That’s actually a disturbing thought.
However, there are some aspects of this spoonie life I have become accustomed to. I’m used to getting to doctor’s appointments on time, even though I know I’ll be losing a good hour waiting on that doctor anyway. I’m used to the unpredictability of symptoms. I’m used to piles of medical bills, reading explanations of benefits, fighting with insurance companies, etc. Yet there is one lesson I learned early on that was a bitter pill to swallow: Not everyone is equipped for spoonie life.
I can’t say I blame them. I know from experience that it can be overwhelming having a family member or friend with a chronic illness. You want to help; you wish you could “fix” them. But you can’t. And the sad truth is, odds are you never will be able to. So early on in my journey as a spoonie, I had to swallow the bitter pill that, on top of losing my health and possibly my career, dreams, ambitions and countless other things, odds are I was going to lose friends. Even family. Not necessarily because they don’t care, but just because they cannot cope with the illness. They’re overwhelmed. They don’t know what to do or say, so they say nothing — they do nothing — and sometimes, that means they walk out of your life. It may be one of the most difficult things we experience with this “new normal.”
But then, something amazing can happen. Something that makes up for all the loss. Something that can restore your faith in humanity, something that gives you hope and strength to keep fighting.
People step up — people you might have never expected suddenly become the ones who are now the major players in helping you survive this journey. People you did not even know come forward. People enter this life of yours, knowing full well what they’re about to take on, and you suddenly realize that anyone who walked out of your life when things got tough was probably not worth your tears and regret.
I’ve heard it asked many times in regards to servicemen and women, as well as civil servants such as police officers and firefighters: “How is it these brave men and women can run directly into the face of danger while the rest of the population is running from it?”
So this is my thank you to those who came rushing into my life, despite knowing they were about to encounter circumstances that others felt too overwhelmed by.
This is my thank you to those who have held my hand, both literally and figuratively, during times of excruciating pain, both physical and emotional. To those who have put aside their busy schedules to make time for me, whether in person, via text or online.
This is my thank-you letter to those who have sat up all night in the hospital with me, either in person or over the phone. This is my thank-you letter to those who have stuck it out with me during times when I was less than rational and helped me figure out serious issues. For those who helped me make difficult decisions concerning my health, and did so not based on what they would want, but what they knew was really best for me.
This is my thank you to those who had difficult conversations with me about topics most people probably would not want to discuss — and who did so with class, compassion and not a single complaint.
This is my thank you to those who came running in when so many others were running out.
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