Lessons Learned from 20 Years of Chronic Pain

By Mia Maysack, PNN Columnist

This year, I'm honoring the 20th anniversary of how long my head has been hurting.

I was fortunate to learn at a young age that we're not invincible. Slipping into a coma, two brain surgeries, and years of rehab resulting from a near death experience with bacterial meningitis has a way of humbling a person.  

Healing isn't linear and has thus far proved to be a lifelong process for me. I've got no reason to believe I've reached an apex of wellness.   

Simply put, the journey has had many ups and downs. Relationships with others were shattered because my own life was in pieces. I didn't know how to effectively communicate with others about my health, because I wasn't fully aware about my own limits. This ultimately overtook my career goals and almost claimed my sanity.

Maybe I lost my mind long ago. If you see it, let me know!

Of course, it hurts to bid adieu to people I still care about, but I've had to evolve to put my own self-care first. Drama isn't a thing I'm physically well enough to take on, as it greatly depletes me. I've had to cultivate avoidance of it by all means necessary.  

I've grown to no longer feel a desire to excuse or justify the accommodations I need. And I know that anyone who doesn't honor what my personal needs are couldn't be what's best for me. So though distance can hurt, it isn't always a loss. 

Anything that's forced -- be it with another person or within our own selves – is a signal to me. An instant message from somewhere deep. It’s an inner wisdom we all carry, always there to be heard and listened to. 

We may not know what exactly is happening in regards to our pain or illness, nor comprehend why it exists, where it came from or what we can do about it. But when we slow down to the point of fully acknowledging ourselves lovingly, there's power, freedom and a sense of peace in that.  

Of course, it's not just about us. How we conduct ourselves has an impact on every one and thing around us. If nothing else, this pandemic has undeniably demonstrated that much. Nothing about life, especially living under strenuous circumstances, is easy. It requires us to keep our heads up and continue growing.  

This requires many things -- diet, sleep, exercise and lifestyle balance, to name a few. One of the more recent revolutions of mine has been that I do not need to follow suit on what anybody else -- providers included -- thinks is best for me. It's a team effort and any form of support is vital and definitely a blessing. But any person or thing outside of ourselves can only take us so far. Our loved ones, friends and our healthcare teams need open communication about that.  

Not everyone has a cure or fix, but our circumstances can improve with a more helpful attitude. We can tune in and reflect on what aligns with where we're at on the path of figuring all this out – and then proceed according to that. We're still just as valuable as we've always been, just in different ways. 

A Greater Purpose

Until I chose to no longer allow this to just happen to me but affirmed myself in active boss mode over what repeatedly tests my will to live, there's a co-existence that's possible -- an intimacy with yourself, a language spoken within, that's solely between you and your vessel. 

It's not glamorous. It’s isolating and lonely. But the truth is that we're not alone, and your reading of this column thus far is a demonstration of that.

What I needed in life didn't exist, so I dedicated myself to creating ways to keep the parts of myself alive that matter most. I'm devoted to never giving up because there's a greater purpose to be found in our challenges. 

There are always new breakthroughs. We cannot know if something could help if we don't keep our minds and hearts open to it by coming to terms with our losses. Without a doubt, that’s the hardest thing I've ever done in my life, other than survive every day.

Addressing tough moments doesn't mean that's the end of them. But letting these conditions dictate the overall quality of my days became intolerable and unacceptable. Pain is a part of us – but not who we are. I’ve evolved to accept the past for what it was, the present as it is, and the future for whatever it'll be.  

Partake in self-pity moments when you must, but don't unpack and live there. It is okay, normal and natural to breakdown or even completely fall apart. Start over. Life is always evolving and it requires the same from us.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.