It is not only my birthday on Saturday this week, but also my 2 year anniversary when I first became sick with, what is called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP); a chronic version of Guillain Barre Syndrome which is a rare paralyzing disorder affecting the peripheral nervous system. It’s not something you ‘catch’, it’s something that happens, usually triggered by something traumatic like having a very bad flu or undergoing surgery or receiving a flu vaccine. The traumatic situation spins your immune system into overdrive. Your immune system then doesn’t know how to stop and continues to attack your own nerves (attacking the myelin sheaths that cover the nerves or worse the nerve axons) causing tingling, numbness and paralysis. It is treatable but not curable and many patients are left with a varying degree of residual symptoms. For some those symptoms are outwardly obvious, but for many those symptoms are invisible such as numbness, pain and unbearable fatigue.
This disease has changed my life. I have learned to slow way down, initially because I had to, but now because I want to. I enjoy the very simple things in life and I’m not as stressed all the time. I love to walk outside and look at the trees and the wildlife. I love to read. I like to take that extra second and make an effort to be nice to someone. It’s not hard. Sure I have my bad days and get into a cranky mood (it happens and it’s not pretty), but generally speaking I try to be kind more often than not.
I also try to look at people in a different way now. Instead of viewing each person who comes across your path as a nuisance, or an asshole, or an obstacle inhibiting you from getting to your next destination by a millisecond, take one second to consider that this person might be sick, or have a sick child, or just lost their job, or just had an argument with their partner, or lost a beloved pet. Develop your empathy like a new habit you wish to develop.
I’ve completely changed my career as a result of this disease. Now I’m now getting involved in causes I believe in, brainstorming business ideas, and going back to school for creative writing and I am in the midst of writing my first novel (it’s very funny, just sayin’).
I’m lucky though, I am in a supportive relationship, and generally have the freedom to be able to do these things, otherwise I’d be faced with a whole other set of challenges that my fellow patients have to deal with.
I also have my “work days” as we call them in our house, those days that creep out of nowhere when my symptoms are so bad it feels like I am wearing a tingly cement suit, and I’m exhausted, forcing me to rest.
Look, something like this happening - if it can happen to me, it can happen to anyone.
So, ask yourself, if you could no longer walk, or use your hands, what would you do? How would you work? How would you support your family and your current lifestyle?
At the same time, ask yourself this, if you knew you had say 5 months or 5 years left on this earth, are there things that you would like to be doing? Are you doing them now? Why not?
Sure we have responsibilities and need to provide for yourselves, your loved ones, and your community, but could you live on half your income? A third of your income? Would you be happy? What makes you happy? I’m sure that 90% of you would recall happy memories of something that you did not something that you bought right?
For me I’m happy being undefeated in cribbage against my boyfriend.
I’m joking, just trying to lighten up this heavy stuff.
But seriously I do enjoy beating him at cribbage. All the time.
So my birthday wish is this. Today I’d like everyone to take a moment to develop your empathy. Try to be empathetic towards people and kind to them where possible in your everyday tasks. See what happens. See how you feel. See if you keep doing it tomorrow. Give someone a smile, or a helping hand, or give someone a compliment.
And finally in addition to your empathy development, consider your ‘what if’ questions but put a positive spin onto them. What other things would you like to be doing with your life, and what small steps can you take to incorporate some element of that into your life. I’m not saying go out and quit your job, but if you have always wanted to learn a language, start with an online class. If you love animals, go to your local shelter and donate play time. Watch what happens next.
If you try any of these exercises above you’ll be giving yourself a gift, I promise.
Thanks for reading. Be kind and run well, and be the person your pets think you are, Namaste, pdub
Endnote:
Recommended reading: “ The Art of Joyful Living” by Swami Rama. It’s simple and it’s awesome. If I was winning more at poker right now I’d buy a copy for any reader who wanted it, it’s that good.
www.gbs-cidp.org to learn more about GBS and CIDP; the rare diseases not getting enough attention to make them go away.
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