Pat’s Cracked Cup: Multiple Myeloma And Vulnerability
I recently watched a video talk by social work research professor Brené Brown about her study of “the power of vulnerability.” It turns out that people who are most fulfilled approach their lives with “wholeheartedness.” The courage to be imperfect and admit vulnerability leads to greater wellbeing.
Living with multiple myeloma is an excellent place to experience vulnerability, as being diagnosed with this disease puts a damper on any sort of idealized self-image — the idea of “perfect health.”
There is a poster of the skeletal system on my wall, a reminder of the bones within me and the network of bone lesions left behind by the myeloma cells that once nested there.
My annual skeletal survey is coming up. I always cringe at the thought of enduring so much radiation. Although the professionals claim it is nothing to be concerned about, I notice that they leave the room before turning on the machine.
This monitoring is extremely important to notice changes that may not show up in my blood work. I ponder the “what if?” What if one day the report tells me the lesions look different? What would I be willing to do?
I wholeheartedly do not know. Accepting all the variations of multiple myeloma is a process of uncertainty.
The philosopher of ancient China, Lao Tzu, wrote:
Men are born soft and supple;
Dead, they are stiff and hard.
Plants are born tender and pliant;
Dead, they are brittle and dry.
Thus, whoever is stiff and inflexible
Is a disciple of death.
Whoever is soft and yielding
Is a disciple of life.
The hard and stiff will be broken.
The soft and supple will prevail.
Remaining soft and pliable in life is a challenge.
A wabi-sabi point-of-view helps. This Japanese art of finding beauty in imperfection and nature is a celebration of cracks, crevices, spots, and frayed edges.
My ten-year-old vehicle is a small white car that has traveled many miles with me through a number of changes. She has a slight dent, small dings, and occasional odd sounds. My wabi-sabi car and I are a good pair.
Feeling emotionally well means yielding to it all — the flaws and the not knowing.
I do wonder, though. I wonder about people who walk away from their disease, stop seeing doctors, and never mention it again — those who keep their vulnerability to themselves. Some must live on, but those people would not be reading this article and we’ll likely never know about them.
Pat Pendleton is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Hi Pat, Thanks for another beautiful article! When you mentioned 'frayed edges', it reminded me that the the newsletter for my needlework guild is called 'The Frayed Edge'. I think that this means that even though are lives are busy, and that we quite often have a feeling of vulnerability, we can still take the time to produce something artistic, such as projects in the fibre arts. I have the same feeling about your writing!
I don't mind my skeletal X-ray annually, since I need to get the info from it, but really don't like going through those scanners at airports! Am always glad not to be 'randomly' selected for them! The last time I flew I got pulled out of the line for a scan, but told the younger lady working there I am a cancer patient, and she gave me a manual search instead.
Great column Pat. I notice too that those who try to "control" everything have a harder time of it. It was helpful for me to let it all go and alter my point of view. Not easy, but helpful. It didn't mean that I didn't continue to be proactive, but I noticed that if I did everything I was supposed to do and the door didn't open, it simply wasn't the door Dave and I were to travel through. I would then widen my peripheral view. It all seemed to work out.
Hi Pat,
Thank you and all who contribute to this site. My husband was just diagnosed,with MM, about a month ago.I am still going through all the stages of grief,with this news. All of his symptoms were over-looked, or missed, by another doctor, about a year ago.So. my first reaction was anger, then sorrow etc..What if, and on and on.
I am now trying, to find out, all I can. To be hopeful and positive.My nature, as a retired special ed teacher, includes being armed with knowledge!
THANK YOU, THANK YOU,for this site!MM no longer means candy to me and my family, BUT with your help it lessens the bleak future, I originally saw.
You are in my thoughts and prayers as I read about your journey.
Patricia,
We all know about those first few months.
I spent mine recovering from surgery replacing my C7 vertebrae, which had collapsed. This period of time gave me time to creep up on the real problem. Multiple myeloma. One thing that really helped me was a comment from my neural surgeon, "Don't blame yourself or your doctor that this diagnosis was missed for so long. MM is very often diagnosed with a broken bone."
God bless you both on your new journey. There is lots of help out there, both medically and personally.
Julia - Calumet, MI
Hi Pat, you are so right about myeloma putting a damper on one's self image of perfect health, only I would use the word shatter. Both of my parent's lived healthy and long lives into their eighties. At age 49, ostensibly robust and fit, with a wife, two young sons and at the height of my career, I was shocked last August to find out this was my fate. Myeloma was certainly not in my lexicon. I love your idea of finding beauty in imperfection and, as a hardcore gardener, I know those gnarly old heirloom tomatoes I grow taste so much better than the perfectly shaped but insipid supermarket tomatoes. Your columns are very special, thoughtful and much appreciated! Terry L.
Hi Pat.A great article.Before MM I was convinced of my invincinibilty.I thought I would live well into my ninties.Four months of chemo and a stem cell transplant convinced me otherwise.Today I live with various pains and fears. Every time I go for a diagnostic test I worry however ,I have have learned to accept it.What I find astounding now is my appreciation for the simplest often overlooked gifts of existence;atouch fom my spouse,a sunset ,and sometimes just breathing is enough.
Hi...Well this is the first time I have been truly able to say that yes I do have high risk MM just like my Mom...as her yougest daughter I was 24 when she past away and now at 52 and a mom of a 23 and 21 year old...I get a life changer...I am currently praying for desernment from God as to which path to take either Allogenic or Autogous BMT. Pat I will need to re read your article often so I thank you for the reminder that There is beauty in all things and that God wil be there!
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