Chiari Online Support Group

The Power of Gratitude


#1

Cheers everyone!

I was reflecting recently with a friend about who I was prior to my diagnosis fifteen years ago and who I am today.

Even though my symptoms have worsened and new ones have been added to the list from time to time, I truly am grateful for this journey.

I started this journey immersed in a doctoral program I didn't even want to do, but my ego and desire for status were my ambitions in life. I would never have said that honestly at that time, but that is still my truth.

I remember having headaches for many years and they became progressively worse. To make a long story short, I was admitted to the hospital for eight days because my kidneys were failing. I did not have kidney disease. Rather, I was taking too much ibuprofen for my constant pain. They did a contrast dye MRI and found the problem.

I remember spending 8 days in that hospital room and realizing that my life was not my own. I was doing what I thought people wanted me to do to have their approval.

I was not in any way aligned with my true calling. I quit the doctoral program and started a master's degree in counseling. Since then, I have become a grief counselor (family therapist) specializing in hospice and bereavement. We even created a project in East Central Africa to expand hospice services in Tanzania.

I believe this journey has taught me to live on purpose, to be compassionate with people who are struggling because you never know what it is like to be them each day, to forgive everyone because people are doing the best they can, and to receive from my family and friends. I can tell you that I have been blessed beyond words over the years with love, compassion, and support.

How has this journey changed you? What lessons of gratitude do you now carry because of this challenge?

Lastly, to people who are newly diagnosed, I don't want to "paint pink" over how hard this journey is. It is incredibly challenging. However, I believe this has made me a more loving, kind, and caring person. I used to judge others who were struggling in life, and this experience has taught me to hold compassion and kindness for every person on my path. I am incredibly grateful to be who I am today.

My husband and I have been together for twenty years (now legal in Colorado - Yahoo!!!!), and he has stood by me from the very beginning. I have learned what loyalty and love really mean. Because my neurologist has me on driving restrictions, he takes me everywhere. I cannot believe I have a partner in life that loves me this much.

Blessings to all my fellow Chiarians (sounds like a Star Trek term - Yes, I am a super nerd. Sorry...but not really),

Brian


#2

I am truly moved by your positivity. While I don't have Chiari, I have had Fibromyalgia since 1998. I can say that since the diagnosis, I have become so much more aware of the needs of others. I have been forced to slow down and appreciate the good things in life. It certainly isn't easy and there are plenty of difficult days / weeks / months but I know things will get better again. While I don't wish any chronic condition on anyone I will say that for better or worse, it has had a positive impact in my life. It has opened my eyes to things I never would have seen. Of course, I will always wish / hope for cures for Chiari, Fibro, and every other chronic condition. Thanks for sharing, it brought a smile to my face.


#3

I love your testimony! My 13 yr old was diagnosed last month and its been hard for him to mentally and physically grasp what’s going on with his diagnosis. I keep telling him he is destined for great things and will be a testimony to others who need to hear his story. Thanks for sharing yours!


#4

I have found this article to be beneficial to me personally. Check it out if you are interested. http://www.chiarisupport.org/group/mindfulness-and-relaxation/forum/topics/7-ways-to-change-your-attitude


#5

Hi Brian,

You are an inspiration to all of us, Chiarians or not! Your journey of personal growth is so up-lifting and encouraging. I'm sure that you have been a comfort to countless people who are grieving a loved one.

I sought out a PhD psychologist specializing in resilience, after personal injury, discovered genetic illness, and loss of a baby brother knocked me down. The skills that she taught me have done me nothing but good and allowed me to get to a place where I could not only handle it, but volunteer here on Ben's Friends to help others struggling with illness, injury and even loss. I don't profess to be a professional expert, but recommend them often. We all need help, all need support, and it's always good to know that we have professionals who have dedicated a huge part of their lives to help others get through the really rough spots.

I'm looking forward to getting to know you better. Congrats on having such a wonderful husband, you are most deserving.

Live long and prosper,

SK


#6

Thank you for all of your wonderful comments. Another reason to be grateful!

By the way, I must express my sadness at Leonard Nimoy’s passing.

Live long and prosper, Brian


#7

Hi Bri, I had no idea about the passing of LM when I quoted the LLAP. I too am deeply saddened by news that he is no longer in our world.


#8

Every day we hear of someone who can't understand what we go through...they may be healthy or may have another condition or disease. Humans, by their very nature, are conditioned to believe that anything that is wrong, be it medical or physical, is something that can either be corrected or endured. Not one single person understands what a chronic condition is...until they have experienced it. It's a sad state of affairs because as children, we are taught to accept others, no matter what. We are taught to be kind, to be considerate, to treat others with respect and to listen; yet, as adults, we sometimes lose those attributes.

When we experience a chronic condition, such as Chiari, we also lose the ability to be sympathetic to those persons, while not having Chiari, may have other conditions. I've done it myself...and I know better. We all do...you know it. By this, I mean..."oh, they don't get it..." and they may.

I always figure that "they" whoever that person might be...must be hurting in their own way...they just don't know it yet. They either are in denial or they chose to project their hurt on others. I try to either lend a helping hand, listen or commiserate with them...and hope that they will do the same.


We are all on the same journey...we just have different destinations & go by different steps...Be kind to each other...eventually, we hold each others hands.