Dear Parkinson's Activist: Secure Your Mask

Updated: Jul 12, 2019

We hear it all the time on the plane:"In case there is a loss in cabin pressure, oxygen masks will deploy from the ceiling compartment located above you. Please secure your own mask before assisting others around you." For the past several weeks, I have tried to ignore this simple directive and its implications on my role as an active participant in the Parkinson's community; but like a pesky little fly, the thought keeps coming back and dancing around my head.

Long before I got diagnosed, I resolved within myself that I would never let my idiopathic neurological condition (I didn’t know what else to call it) get the best of me. Perhaps that explains why I experienced little anger or sadness when, at 35, I eventually got diagnosed with Parkinson's disease. That resolve would push me to create this blog and the #WhatsYourParkinStand movement; it would ultimately become responsible for many of the positive things I have been fortunate enough to accomplish and take part in since my diagnosis. That same resolve, ironically, would also start to negatively impact my life in a subtle, but serious, way.

At first, I channeled my energy into learning everything I could about Parkinson's disease. It did not take long for me to become fully acquainted with the merciless trajectory of this illness. It was a rude awakening for my newly-diagnosed-anxiety-prone brain. I was afraid; and that fear, left unchecked, had the power to awaken a dormant side of me that no one, perhaps except my husband, has ever witnessed - a shell of a human body housing a terribly dispirited, highly anxious, and immensely depressed soul. I had absolutely no interest in rousing this giant so I decided I had to find something engaging and productive to do. Volunteering seemed like the perfect fit, so that's what I did.

Doing work that positively impacts the lives of others and raises awareness of a condition I suffer from is one of the most rewarding experiences I have ever had. It started out with one volunteer position, then it became two, then four. The more I volunteered, the more I was asked to volunteer. My workload kept steadily increasing until it became too much for me to bear. It's not that I could not complete all my volunteering tasks; I could. The issue was that I could not do that AND still find time to exercise, or walk the dog, or update my blog, or take my daughter to gymnastics, or attend my son's rugby game, or call a friend, or sleep before 1AM, or just plain relax. What was I doing?

When I look back at the 30 months since my diagnosis, I am grateful for many of the incredible experiences and individuals I have encountered on this journey - none of this would happened without that first, second, third... volunteer position. However, somewhere along the way, I lost sight of the fact that in order to give my best, I had to be at my best. I failed to see that advocating for others to take care of themselves while neglecting myself was hypocrisy. I was getting lost and losing myself, all in the name of promoting a cause - something was not right with that picture.

I have since evaluated and prioritised the different activities I am involved in; some things I have put on hold until my schedule frees up, others I have had to completely bow out of. Of the ones I am actively engaged in, I have set boundaries to reduce the chances of them eating up too much of my time. My question to you is this: are you exercising, eating right, resting, enjoying time out with friends/family? Is your physical/mental wellbeing a priority for you? Are you taking good care of yourself, or are you too busy seeing that the needs of others are met?

"In case there is a loss in cabin pressure, oxygen masks will deploy from the ceiling compartment located above you. Please secure your own mask before assisting others around you."

Dear Parkinson's activist/advocate/fighter/warrior,

Please secure your own mask first. The cabin lost pressure the day you got diagnosed.

Yours truly,

Omotola Thomas

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