I’m excited that Liz could join us here on Starbrite Warrior to share her story and how she’s living a life she loves.
Let’s do this!
A bit about Liz
Liz Casteel is a personal journey blogger over at Brain Brake.
She writes about her new normal with Multiple Sclerosis and the challenges of merging her illness into daily life as a wife, mom, and full time student.
At the inception of chronic illness there is a lot of fear and confusion. Can you describe the time you felt the most scared?
With my diagnosis, it was a little different from your average situation. I am a very proactive person and during the relapse that initially began the diagnosis process I felt the doctors were not working together for my best interests, so I took it upon myself to do some research.
By the time the doctors agreed on my diagnosis of Multiple Sclerosis, I was already aware that was a likely prognosis. The moment I felt any kind of fear was when I think of the unknown possibilities that come along with MS.
For example, not knowing the difference between a symptom of MS versus another health problem that is unrelated. Or being someone who cannot be 100% dependable to attend your child’s outdoor soccer game in the middle of summer. Those are the times I find myself unsteady in my chronic illness.
Survival depends on learning to build something new from a changed reality. You have talked openly on your blog, Brain Brake, that you understood pretty early on that you needed to learn and adapt. That “..any new journey you begin can be great, terrible or simply necessary. It is a blank page waiting for the words you choose to write.”
Can you share a little bit more about how you came to this place of acceptance and gratitude to live your best life with MS?
I cannot take full credit for my journey to that point. My best friend in high school introduced me to the world of disability as she was wheelchair bound and losing muscle strength constantly. I remember times where she would find the joy in her situation as well as the times of frustration.
I learned pretty early on that your perspective in every single situation will determine your inner peace and joy. When the diagnosis came in, I hit it head on with making a plan and educating myself.
My husband asked me one day on the way to treatment what would I do if I ended up having to use a wheelchair. I remember pausing for a moment and trying to think of all the things I would “miss” in that case and realised I needed to ponder all the new I would be introduced to instead.
I looked at him and said I wouldn’t have to worry about people dancing in my personal space anymore and could teach wheelchair yoga! It all comes down to the choice of how will you choose to deal with life’s challenges.
Your MS diagnosis brought a lot of doubt from others on what you could and couldn’t do. It’s fair to say these naysayers haven’t stopped you! I came across this beautiful passage from one of your blog posts (The Final Countdown):
“Even if you have something you are battling that others are not, that doesn’t mean your value is any lower. You are not damaged goods. Period. You are wonderful and beautiful and…you. There’s only one you and that makes you worth the work.”
How do you keep the good vibes rolling and pick yourself back up when others try to knock you down?
I have always been a bit rebellious and have learned to use that to my advantage over the years. My first reaction when someone says “you can’t” is 9/10 times “watch me!”
I have had to learn my new limits and work within or around them to succeed. I have learned that it doesn’t necessarily mean you work harder, but you work smarter.
For example, I was told school wasn’t an option due to the stress and my memory issues, but I have been able to tap into resources at my college and find pieces of technology that can aid with my physical/mental processing limitations.
I always thought how neat it would be to be someone who does something for the first time and individuals with disabilities/chronic illnesses have that opportunity more than anyone.
Sure, it won’t always be easy, but at the end you will look back and be on top of a mountain that you climbed before anyone else.
You write how “…we do not live in a world with proactive problem solving when it comes to chronic illness. We are placed into a community where we can relate and we are cast out of the ‘normal’ world because they do not know how to relate to us.” How do people react to this idea?
I get a streamlined agreement with that statement. The only issue I have run into, which is actually a good issue, is the “abled body” community not wanting to admit to this being the case, but it is out of love. It is because they do not want it to be the case which is great. Neither do we.
You are a “Writer, full-time student, steering wheel rockstar, mom of a wild boy, wife to a wise man, chronic perfectionist, fierce friend and MS warrior.” How do you live life to the fullest and manage the risk of an MS relapse?
I would be lying if I said that was not my main concern on a daily basis. I have had to do a lot of work on myself because I naturally work well with a plan. I like scheduling, planning every outcome, and having security in what is going to happen.
Multiple Sclerosis throws all of that up in the air at any moment. So I have had to learn to do what I can, when I can, and just plan for everything being put on hold. I have been pushed to really prioritise with this disease. That is a great skill that I have obtained because of MS.
You created Brain Brake as a safe space to write about the challenges of living with chronic illness and to talk/raise awareness about individuals with disabilities and invisible illnesses. Can you describe how connecting with people through your website has helped you with your own healing journey?
Every person I have connected with has made my chain even stronger. They have a willingness to be transparent and real with their illnesses or even loved ones with illnesses and it inspires me to keep doing what I am doing.
You never know who is standing witness to your journey and how your actions can impact them.
If you could offer one piece of advice to someone who has recently had their world rocked by a chronic illness diagnosis, what would you say?
Take a minute to adjust to your new normal. It isn’t good or bad, it is just you.
Keep your head up and always stop to think, “How can I do this better for me?”
And the one thing anyone should do is to connect with others in your situation, to form a kind of support system with individuals who “get it”.
Where can we connect with you further?
Website: Brain Brake
And that’s a wrap! Thanks Liz!
If you would like to participate (be interviewed!) please drop me an email at bree[at]starbritewarrior.com and we’ll have a chat!
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Photo Credit (Featured Image): Pixabay
Photo Credit (Bio Photo): Liz Casteel