Whispers of Courage: Redefining Independence in the Face of Challenges
Published on:
April 1, 2024
What have you been diagnosed with?
Cauda Equina Syndrome, Spinal Cord Injury, Epilepsy, Anxiety, and Depression.
How did you first notice something was wrong with your health?
I had a slow-onset spinal cord injury. I had sciatic pain for 5 months before I couldn’t walk at all. Then I needed emergency surgery.
When did you first start experiencing symptoms?
January 31st, 2017.
How did you go about seeking a diagnosis?
I went to a walk-in clinic, my family doctor, and the emergency department. Who then sent me back to the family doctor who sent me back to the emergency room at the hospital.
How long did it take for you to receive a diagnosis?
6 months or 48 hours. I can’t say for sure if they could’ve known what was going on at first.
How did you feel when you received your diagnosis?
Terrified. I was alone at the hospital. They told me I’d never walk again, and never be independent again.
How did you communicate your diagnosis with your loved ones?
I called my mom, and she came to see me off before surgery. Then I texted a few close friends. I popped on Facebook and let people know publicly as well. And spoke to friends and family who had more questions.
What treatments have you undergone and how have they impacted you?
I did 50 days of inpatient physiotherapy. And then 2 years of outpatient. I then had a spinal cord stimulator implanted (for pain) and had revision surgery shortly after that. Physiotherapy was great, helping me get strong again. I relearned to walk and to be independent. The SCS was not as helpful. It causes me pain and I don’t use it anymore.
What is the most difficult part of your treatment, and how do you manage it?
Realizing that the pain will not get much better ever. I did have to work hard to get to this point now though! I’m glad I can walk.
What has been the most challenging aspect of living with your condition?
By far the chronic pain. Not being able to do what friends can do. Having to find different ways to experience most things.
"Life's changes may limit our options, but they never diminish our ability to adapt and grow."
How has your daily life and routine been affected by your condition?
I have lifting restrictions. So, I can’t do laundry. I can’t do some cleaning stuff alone. I also can’t walk or stand for long amounts of time. But I also can’t sit for too long either. I can’t work, that can be one of the most difficult things.
How has your condition affected your mental health and emotional well-being?
It has affected it very negatively. Hard days. Medical trauma. Just being in pain 24/7 is very difficult.
What strategies have you found helpful for managing your emotions and thoughts?
My wife and dogs keep me going for sure! I’ve done some talk therapy. Some yoga poses help to stretch my back and legs help the pain. And meditation and medication help sometimes as well.
How has your diagnosis impacted your relationships with your friends and family?
I must cancel a lot of plans. Or I will not reach out at all sometimes because I don’t want to run the risk of having to cancel. I have lost many friends. But I’ve also met and kept the important ones around. I do have a good support system.
What support systems have been helpful during your health journey?
My mom and brothers were there from day one. I have a few close friends I can reach in times of need as well. My wife and fur kids keep me sane as well.
What advice would you give to someone who has recently been diagnosed with your condition?
Try to stay positive. Focus on your small wins each day! If you get down on yourself, it can make it worse.
What advice would you give to your past self if you had the opportunity to go back in time?
Fight harder to the doctors for scans. You have to be your own advocate.
How can others be more supportive and understanding of people with your condition?
You have to love us in a different way now. We can’t do all the same things we used to.
Looking for support and resources as a fellow Cauda Equina Warrior? Click here.
Want to find out more about Anxiety and Depression? Click here.
Are you a chronic disease warrior, or know someone who is? We would love to hear your story! Contact us at marketing@jonda.io to find out more about how to get featured on Jonda’s Patient Voices. Let's inspire and educate others facing similar challenges by sharing our unique health journeys and raising awareness, together.
Disclaimer: Please be aware that the content of this patient story is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.
