Keeping Hope Alive
/By Mia Maysack, PNN Columnist
In 2022, I was fortunate enough to receive the International Pain Foundation's “Hero of Hope”' award for patient advocacy. I felt and still feel remarkably honored for the recognition, although I am not motivated by any accolade or prestige. I fight for those who can't. I use my voice so others can be heard.
As a patient advocate, I’ve learned the absolute most important thing that I can do is rescue myself – repeatedly. If I don't make it and I'm no longer here, what good can I do or offer to anybody else?
Recently, I've struggled immensely. There have been moments that haven't felt survivable. I sought support, reached out for help, attended therapy, and tried endless lifestyle approaches with little to no progress in how I feel.
It is important for me to express this publicly because I want to drive the point home: An optimistic perspective alone is not enough for survival. You can seek out the bright side, acknowledge how things could always be worse, recognize all your blessings, and be grateful for them -- yet still suffer immensely.
I reached out to someone to vent some of this, in what I'd hoped would be a receptive and safe space. But I was quickly reminded of the extent to which people simply don't know how to navigate others' hardships or struggles.
“I'm having a rough time,” I said.
“Maybe you need to go to counseling,” they replied.
“I tried that again recently. But my medical trauma is extensive. It did not help and actually worsened things for me."
[insert awkward silence here]
"Ordinarily,” I continued, “I’d pour myself into other causes, things, and people. That usually helps, but I am struggling with energy and motivation.”
“Sounds like depression,” they said.
“Depression isn’t new to me,” I explained. “Coping with daily ailments isn’t something that everyone can bear. Depression in these instances occurs by default. It’s an underlying current underneath the symptoms, constantly demanding my attention and effort to accommodate and manage it.”
"I think you need to pour into yourself,” was their reply.
"I have, extensively. But it is as though I'm a cracked cup and it all leaks out,” I said.
[insert another awkward silence]
At this point, I can sense they are uncomfortable, so I rush to ease their pain as mine intensifies. And I’m reminded how there’s just about nowhere for us to turn where we can be adequately received or understood.
“But I will figure it out, I always do,” I declared, tears running down my cheeks.
"Now that's the spirit!” they proclaimed.
I’ve always possessed “spirit” but sometimes it’s not enough. This is why I have such a profound empathy for those who idealize or even follow through on ending life. I see and understand how and to what extent we reach out for help, yet I'm repeatedly reminded that we're ultimately left on our own -- by each other, by our systems, and by society as a whole.
No one wants you to end your existence, yet almost nothing and no one is there to contribute meaningfully to your quality of life.
In observation of this and because I strongly believe in cultivating solutions -- as opposed to fixating on problems – I’m supporting efforts by the American Foundation for Suicide Prevention to raise awareness and talk about how we can prevent suicide and increase access to mental healthcare.
The darkness in me honors yours. It's not only okay, but profoundly necessary to allow that part of ourselves to exist out loud. It’s the only way through to the light.
I imagine a future where we don't have to beg and plead for basic human needs, and we’re no longer alone in attempting to figure it all out. This vision keeps me going and keeps the fire of hope alive.
Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.
For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.” A comprehensive set of resources can also be found at this link.
