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Yeah, It Feels Like This — Long Haul Paul

Long Haul PaulThe world as we know it has gone viral. Just about every country is in some form of shut down, restricting movements and affecting every aspect of normal daily life. Coronavirus was not on anyone’s calendar and it’s devastating collateral damage is still unfolding. Who, what, where, when and how long are questions even the world’s top experts cannot answer. It’s a cluster flub of epic proportions.

COVID-19 was a nuclear blast dropped out of the blue with shrapnel striking every nook and cranny of our globe. No system or population was left unaffected and no one saw this coming. Are grocery stores in the United States really rationing toilet paper and pork chops?

The virus has infected us all. We have been hit financially, the rich losing globs of wealth, the middle class losing small businesses and retirement nest eggs, and the poor losing their jobs, housing and ability to feed their children. Our students and educators have been hit with learning in isolation. Attending entertainment and sport venues will forever be altered. Public transportation, both for leisure or business by plane, train, bus or even Uber will have new rules and precautions. We may never experience taking a cruise vacation ever again. Our food supply, manufacturing and importing of goods are all being disrupted. Our healthcare system flaws have been exposed and the new Space Force has been assigned the mission of finding the national debt total. Some of us have actually contracted the virus or lost friends and family to it’s damaging symptoms. We don’t trust the information from our leaders and we are living in fear and uncertainty.

In the blink of an eye, our world and the cushy life as we knew it, changed.

Welcome to Life Disabled

I don’t consider myself as having a disability; my particular course of Multiple Sclerosis has been mild and my symptoms have not stopped me from being able to continue living my life. I do understand however, at any moment, this disease can take away my quality of life. Over the past 8 years, as I have travelled as a patient advocate, I have met many people living with MS and other chronic illnesses who are indeed suffering every day with physical, mental and emotional symptoms that have interrupted every aspect of their lives.Long Haul Paul

Our COVID-19 disruptions have caused each of us some form of disability.

Our ability to dine at restaurants, our ability to shop for the latest fashions, our ability to buy our favorite cuts of meat, our ability to visit our seniors or grandkids, our ability to have a birthday party, attend a graduation or a funeral of a loved one are all affected by something outside of our control.

Many of us are experiencing for the very first time the challenges and roadblocks living every day with a disability actually feels like.

There are the NO’s.
Want to go to the mall? No, you can’t today.
Want to go to the movies? No, you can’t today.
Want to get a haircut? No, you can’t today.
Want to go for a bike ride? No, you can’t today.
Want to earn a living? No, you can’t today.
Want to sit down inside a restaurant? No, you can’t today.
Want to get on an airplane? No, You can’t today.
Want to go to the beach? No, you can’t today.

There are also the unknowns, the misinformation, the unpredictability, the loneliness, the shame, the blame and always, disability brings the fear.

Ringing any bells?

If you are having a tough time adjusting or dealing with the uncertainty of a post COVID-19 future, you might want to seek out advice from someone who deals with the fear of the unknown and challenges on a daily basis. Ask a true personal pandemic expert; a person living with a disability.

As unsettling as the current situation makes us feel, we need to remember the negative effects and restrictions of the pandemic are only temporary. We are all being affected in some way at the same time and are all working together. We are seeing the best of people, neighbors helping neighbors, people interacting in ways we never imagined. We will create a vaccine, our healthcare system will be revamped and we will recover financially. We will find ways to bounce back by helping each other. We will make it through this and we will recover because we are all in this together as one big disabled herd.

When we are all back on the road, working, eating out and enjoying life, I hope we never forget the struggles, heartaches and challenges of living through this pandemic. I pray we never forget how getting through a few months of Life Disabled made us feel because some among us will continue struggling with disruption in every aspect of their lives forever.

Let’s not leave our people living with disabilities behind

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