With Purpose

Fatigue. One of the symptoms of Chronic Kidney Disease (CKD) I have definitely experienced since my kidney transplant rejected in 2021.

There have been plenty of days since my kidney function began declining where my brain thought I could do something, and my body responded with a resounding “The fu*k you are!”

To say this has been defeating at times is an understatement. Making plans to have dinner with friends, setting up tee times for a round of golf, or booking a flight for a weekend getaway all being cancelled are just a few examples of fatigue disrupting me living my life.

Yes, I know. I have to listen to my body. I need to be sure that I get enough rest. It is one of the main components of maintaining my kidney function while improving how I feel.

The other side is using this as an excuse. There have been a few occasions where I have used fatigue as an excuse not to do something. Meaning, I will tell myself things like, “Do I really want to do this? I know I should go, but I am feeling tired.” This leads to questioning myself and how tired I really am. It is not an easy position to be in.

I have, or at least have attempted to justify why I do not or cannot do certain things. Fatigue has been converted into laziness.

Did my brain cause physical exhaustion? Does that even make sense?

This changed for me in October 2023. What happened? For those who have been here since the beginning know…it was when I launched A Kidney Life!

What started as a place for me to put thoughts and ideas about my experiences and perspectives is slowly turning into much more.

Since October, I have entrenched myself in the kidney community with one goal, one purpose — helping others.

For those of you curious as to what I have been doing/am a part of, here it is:

• A Kidney Life newsletter

• Talk Kidney to Me podcast

• Ambassador for American Kidney Fund (AKF)

• Kidney Advocacy Committee (KAC) for National Kidney Foundation (NKF)

• Patient Advisory Board for Bayer Pharmaceuticals

• Peers Mentor for National Kidney Foundation (NKF)

• Public Policy Advisory Board for National Kidney Foundation (NKF)

• Volunteer for Louisiana Organ Procurement Agency (LOPA)

• Volunteer for National Kidney Foundation of Louisiana (NKFL)

Those that know me well also know that this is only the beginning. I have always been a person with big ideas, and being in the kidney care world is no different. I want to make a positive impact. I want to continue to help others in the best ways I know how. And I am loving every minute of it.

An article in Inside Hook by Tanner Garrity, published on March 18, 2024, titled “One Surefire Way to Boost Your Brain Health This Year - People with a clear sense of purpose score better on this “brain care” card, may have an insight as to why I am feeling this way.

Garrity writes “Researchers at the McCance Center for Brain Health at Massachusetts General Hospital recently developed a Brain Care Score (BCS) card, which tallies up a variety of one’s personal inputs — physical biomarkers, lifestyle habits, emotional health — then spits out a number from 0 to 21. The closer to 21, the better, researchers found.

The idea, as experts at Harvard Health pointed out, is to determine how ‘current habits might impact future brain health.’ Consider the BCS a veritable cheat sheet for assessing your long-term risk of a stroke or dementia. This sort of packaging helps elevate our understanding of brain health; it’s actually something we can train and sharpen”

“But if you cling to just one take on brain care, make it this: the importance of purpose. According to Dr. Andrew Budson, a neurology expert at Harvard Medical School, determining one’s “meaning of life” has the potential to supercharge each score on that BCS card…which in turn will improve your lifespan (and just as critically, your healthspan).”

I have written about finding my purpose in previous articles before and even spoke about the book Ikigai, which is also mentioned in this article. Not only has my focus shifted, it has hit a gear I did not think was possible before October 2023. As Mark Twain famously said “The two most important days of your life are the day you are born and the day you find out why.”

Now, I do not mean to imply that my health has dramatically improved as a result of finding my purpose. There are still days where I take it easy due to feeling fatigued. But I definitely feel better, regardless of what my lab results show. My energy levels have increased, and as a result, so has my output.

So yes, there is most assuredly something to this.

“According to Mayo Clinic, people who live with purpose ‘sleep better, have a more robust immune system, lower stress levels and better cognitive function.’ At the same time, lack of purpose increases one’s susceptibility to anxiety and depression. Those with a clear north star tend to take better care of themselves, over the long arc of a life, in service of their mission (whatever that mission may be). Their discipline doesn’t come at the expense of happiness — if anything, it creates more space for leisure and discovery. As the great marathoner Eliud Kipchoge says: ‘Only the disciplined ones are free in life.’”

For the record, and so I do not come across as a complete hypocrite (which was a brief topic of conversation on a call yesterday), it is abundantly clear I have a purpose, but I need help on the discipline side of things. Also, I am not immune to anxiety as I wrote about in last week’s newsletter.

But I am working on it. Anyone who knows me well is aware I fully admit to being a work in progress. There is so much I have to learn…that I want to learn.

There is so much I want to do. Not just for others, but also for myself. Striving to do what I can to help others gives me the energy to learn more and to do more. The best side effect of this process of purpose has been that I have been uplifted. Those who I speak to (fellow kidney warriors, certain medical professionals, and volunteers) uplift me and make me push harder and to keep fighting.

The only downside to this is that I found my purpose late in life. The “long arc” mentioned in this article does not apply to me due to the condition in which I find myself.

But at least I found my “why”. Who knows how or where I would be if I did not.

Please remember, I am not a medical professional, nor is any of this medical advice. I am just out here living A Kidney Life.