If you are reading this you have found yourself in the world of Cauda Equina Syndrome. I’m guessing that it has turned your world upside down. I know this form experience. Oh- introductions. I’m Just Jason. I am from Central Indiana, in that 35-45 age bracket. I have had CES for almost 9 years. I’ve had leg paralysis from it. I have neurogenic bladder and bowel. Like you my life is Doctors and Nurses, home care and physical therapy, and family and friends that don’t understand. I’ve logged hundreds of hours doing internet research and acquiring information. I have purchased books, printed out pages of information. What I am saying is that we all have our CES story. The pain. The learning to live with it. The hardest thing I have had to learn is that it isn’t who I am. I had to rediscover myself.
What did i find? What is there about me that isn’t tied to CES? I am a movie buff. I have loved movies my entire life. I still love getting to go to the movies. I’m blessed with a lady that loves me and helps me do that as well as a caregiver that can take me. I love music. I am classic so I still have my huge DVD and Blue Ray and CD collections. I enjoy TV shows, but I am weaning myself off of that. I’m rarely watching new shows and as mine go off the air that is one less show to have to manage on the DVR. I still enjoy reading and forcing myself to visit museums. I’m aware that I am fortunate and live where everything is centrally located and I do have many options regardless of the CES. I’m also a long way into my life with it, so I know the ropes and I’m stubborn. I have managed to see concerts again. There is a life before CES and there is one with it. It’s never as easy as it was. But the only easy day was yesterday. What else? I’m a fan of sports entertainment aka pro wrestling. I am an MMA/UFC fan going back to the start of UFC. I’m an NBA fan. I enjoy baseball. Thanks to my aquatic physical therapy I’ve learned that I can have some pool time and even enjoy it. I am a parent of two lovely daughters. If I don’t talk about them much it’s only out of an attempt to maintain their privacy as they finish growing up. I am a product of the 1980’s and 1990’s and very nostalgic about both.
My careers are varied. I was a retail store manager for a company long out of business called Service Merchandise. I logged time as a corrections officer, and as an over the road truck driver and local delivery driver. I managed a pawn shop. To make ends meet when my first daughter was born I did some time as a trash collector. I’ve also dabbled as one of those people at the airport that refueled planes and de-iced them. I went where I could find work and make the money that paid the bills and provided for my family. The job didn’t always matter and I wasn’t as career minded as I should have been. That is how you end up with life experience and an education of street smarts. I had some book smarts but I never got the college degree. I was too busy getting my degree from life the hard ways.
I think my current passion related to CES is the aspect of incontinence and incontinence care and also overcoming the stigma related to incontinence. I think that when I was bedbound exclusively and even from the very start that was the one thing that really hurt me. It attacked my dignity and pride. Diapers and pull ups and catheters and bowel maintenance and devices for bowel “control.” Pelvic Floor Physical Therapy didn’t happen until two years ago. My ego was thrashed. And If I did try to talk to anyone about it, it was taboo. Years later I am bolder and stronger and I advocate for myself as well as others. I’ve had long conversations with my caregivers/aides about incontinence and the care and the products and it has carried over into help for their other patients/clients and their families. For those with incontinence that is managed with diapers and pull ups- the products used and how they are used matter. For those that are active or force themselves to be active, how to keep them with you and where to change and disposal all are things that are important to learn and never should be something that stops you. It is a mental things as much as a physical thing. A rash can become a sore and that can become a wound. I’ve worked hard to gain my openness and defiance about this aspect of my life. I don’t flaunt anything. But I also don’t hide it anymore. Man or woman I can discuss this openly and confidentially always with a very deep understanding. Most of my medical care team is made up of women and it has been long discussions at hundreds of appointments with a Physiatrist and a Pelvic Floor Specialist and yes even a urogynecologist that was at one time my urologist. It was their candor and insight and lots of questions and answers that led to my understanding.
This is just a little bit about me. I’m new here and I’m very excited to be here. This is the start of something exciting for me and has already been the start of something exciting for Amanda. We share a passion that was born from our own needs for understanding and knowledge about what happened to us and our bodies. It was because of our mistreatments and the misunderstanding of pain management and a severe chronic pain condition. We are not looking to be just some other voices in the crowd. We are looking to seize control of the conversations and change them. We want to lead and not follow. We want to advocate. We want to educate. We want this to be seen for what it is at its face value. This doesn’t need extra exaggerations or embellishments. It’s CES. It can paralyze. It can and will change you. Its misunderstood and misrepresented. We want to change that. I’m here to help. I hope that I earn your respect and your trust. My intention is to stay a part of this and be a partner in the rise of this foundation and its long term successes and impact. I will be learning much as I go. I’m never going to believe that I’ve learned it all and know it all. I’m here to help others find a voice and an ally in their journeys’ I’m Just Jason. I’m uniquely me. I’m new here but not new to CES. I know that CES separates phony tough from crazy brave. Overcoming the stigmas from CES and incontinence is possible. I’m proof of that.