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Bob Wold

A Cluster what?

Picture yourself in a boat on a river

With tangerine trees and marmalade skies

You’re in the boat along with your family and all the dreams of your future. You’re in your mid-twenties and ready to take on the world and build a life. You think you’ve been through all the training you need and it’s your time.

A dark cloud suddenly and unexpectedly blots out the sun and the boat violently slams into an unknown obstacle tossing you out of the boat. Life’s swift currents carry the boat downstream as you simultaneously try to stay afloat and catch up as you see your life sail off into the distance. Life can sometimes be cruel and will not wait for you.
You find yourself in this dark environment and six or eight times a day, a serpent grabs you by the eye and pulls you under. You fight the battle every day for three months and every time you come up from the depths, the boat has pulled further away.

You drift along, exhausted, sleep deprived and looking for help. You call out for help at each medical tent you pass, begging for a life preserver to be thrown in your direction. You may not be able to pull me out, but you should be able to throw me something to help me survive. Each one you pass, you’re thrown fire extinguisher. “Thanks for the help but I’m not on fire, I’m drowning and the pain I’m trying to survive is a weight heavier than anyone should be asked to carry.”

After those three months, as the pain disappears as quickly as it had begun, you gather yourself and spend the next three months trying to swim back to the boat that contains your life and everything you love. Just as you’re about to pull yourself back to safety, the serpent you thought had left for good, again grabs your eye socket with its sharp talons and pulls you under again. I don’t know if I can do this again. I don’t have a choice.

This journey has lasted for almost 40 years. The first 20 resulted in trying over 70 different medications (fire extinguishers) that were developed to treat everything from migraines to epilepsy and blood pressure conditions. Following those initial 20 years, I joined the upstart patient community that was beginning to find each other on the internet. Cluster headaches, as we were all finding out, was a rare medical condition which just does not fit well in our medical development system. There are thousands of conditions that find themselves without significantly impressive numbers of sufferers to overcome the financial bar required for investment in finding reliable and safe treatments. Cluster headache sufferers find themselves in this situation where we, the people, had not been collectively valuable enough to demand the investments and resources needed.

This situation has improved greatly in recent years. The gains that have been made and advancements, including the investments needed to help the community through increased research, have been the result of community activism, advocacy and education. The discovery of not being alone and finding others changed the way many of us viewed our disorder. A common issue we found ourselves dealing with was trying to hide our condition from others. Hiding the pain from our families. Hiding our condition from our employers. Developing a condition that you can go years before finding even one other person that actually understands what you are going through forces most of us to avoid any discussions about it simply as a defense mechanism. Finding an entire community that understands is life changing.
The theme of You are Not Alone is vitally important to consider for two distinct reasons. On a personal level, the fact that you are not alone means that you have other people that completely understand your situation and can empathize without a hint of pity. When they see you drifting down the river, they know you aren’t swimming to cool off. They understand your plight. Knowing this, they also know what you need to be able to not only survive, but to thrive and build a beautiful life. Seeing how they are able to learn, live and love, allows you to look to the future because you too can achieve a good life.

The other important take away from remembering that you are not alone is that by joining with the others and building a community, your voice is amplified. You are not alone in asking for help. You are not alone in asking for increased research. You are not alone in searching for the little things that can give you and then everyone in the community that you share with, those wonderful moments that build a beautiful life. Your voice amplifies that of the entire community.

Cluster headaches certainly changed the direction of my life. One thing I have learned is that I will never know if the condition has made my life any better or worse than it would have been some 40 years later. I have no idea which dreams I had would have had come to fruition or which other things would have come into my life along the way. Had I not fallen out of the boat when I did, I may have been hit by a stray hunter’s bullet further down the river. My life is the culmination of all the opportunities and moments that have occurred, not the ones that may have. Each day we start over and maneuver through life with a brand-new set of circumstances.

After these 20 years of advocacy work, I found that everything you are able to do to improve your own situation, you can now share those improvements with, in my case, a worldwide community that includes some 7 million people. I know that we are not resigned to sit back and wait for a researcher at an unknown university or a doctor in a far-off clinic to unravel the cause of cluster headaches or find things to help us until they do. You are not alone, and you can join the collective of our community and together we can support each other, engage the medical community, develop new treatments, and eventually a cure. We are all empowered to be an active part of finding a cure for ourselves and future generations.

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