I have learned a lot of things since I was first diagnosed 20 years ago. It has forced me to challenge everything I thought I knew. About how the world is supposed to work. My notion that if you worked hard, you follow a linear path to success.

Some things I have learned have been medical in nature, but most have been related to how to navigate a new life. To figure out how to live, not just to survive. How to find happiness in a world where you don’t recognize yourself. How to find meaning. How to love yourself when sometimes you really don’t like what you see in the mirror.

This Substack stream is going to be knowledge I wish I had when I was 30-years old. Newly diagnosed with a disease that was going to be life-altering. I had Google, which I discovered was really good at showcasing the worst case possible scenario. I had a bleak view of my future. I felt like all of my hard work up to that point had been a waste. Of time. Of energy.

I questioned if I wanted to be here.

I had no idea that there could be another way to live besides the pursuit of a high-paying job with an important title that allowed you to buy things. Things that were supposed to add meaning to your life.

Why do I have this? Why me? Why now? Why do I have to start my adult life with this horrible beast on my back?

This will not be a how to guide. I will share stories about things that have happened or are happening to me. It is not meant to be overly positive, because there have been plenty of faceplants (literally and figuratively), stubbed toes, embarrassing events, and failures. Moments when there wasn’t a rock big enough for me to crawl under. I will share some of these stories. Not to make you nervous. Just to let you know that you are not alone.

If or when crappy stuff happens to you, remember those words. You are not alone. Some of us know what you are feeling. Embarrassment. Anger. Despair. Hopelessness.

But there are little points of light that exist that you can string together to find your way in the darkness. They are there. Mostly hidden to start, but they are there.

I don’t know where you are in your journey. Maybe somebody has told you should read this. Maybe you stumbled upon it. Maybe you are looking for something. Anything.

Maybe you cannot relate to anything I share. If so, I am truly sorry for wasting your time. Hopefully you will laugh at least a couple of times. At the very least, you will see how another human has dealt with adversity.

My commitment to you is honesty.

There are some amazing things that have happened by me embracing change. But there are some mortally embarrassing moments that have occurred. My hope is that I can help at least one person not feel alone. To know you are not the first that something has happened to.

I hope it is useful. Your life may have changed. Parts of it are going to be tough, but if you let it, your life can be so much more meaningful than it ever has been. It takes work, and it takes a willingness to challenge everything you thought about what makes a great life.

You’re not the first person to face adversity. There are many people that have gone before us. Build on what we have learned. At the very least, know that there is a whole cast of supporters around you, willing to go to battle with you, whether you currently see them or not.

I am honored that you have taken the time to read this. This is my story. A stubborn, persistently positive mule that has spent the last two decades adapting to a new body and life circumstance to make it meaningful.

Please share this link with others who you think it would be useful.