Syringomyelia + Sisu

Syringomyelia is not supposed to be a genetic disorder according to many experts. A picture of my great grandfather’s hands makes me question whether that’s a fact. 

His right hand was bandaged here.

My hands today, are curling shut from spinal cord damage in my neck.

I had a spinal fracture in April of 1964. My spine was fused with bone taken from my hip in October of 1964. Syringomyelia started in my spinal cord around 1970 but was not discovered until 1985. It continued to progress until my whole left side, from my waistline to the top of my head became numb. 

Syringomyelia – Wikipedia A drain shunt was put into my spinal cord to drain off pressure in 1985. That helped stop some of the neurological damage. In November of 1985, my left shoulder became a Charcot joint.


The joint is gone, dissolved in one month.

Neuropathic Arthropathy of the Shoulder (Charcot Shoulder) ( 

In 2000, I had surgery on my cervical spine for stenosis, a plate with six screws was put on the front of my neck at that time. In 2018 another shunt was put in at T-4 to drain fluid from my cervical spine area. 

I hope my hands never get like this.

The total length of my spinal cord is now hollowed out with a large cavity, thankfully the pressure is not high.



Sisu is a Finnish concept described as stoic determination, tenacity of purpose, grit, bravery, resilience, and hardiness and is held by Finns themselves to express their national character. It is generally considered not to have a literal equivalent in English.

I contacted this organization NORD in 1985 when it was considered a rare disorder. Barbara White and her husband started a support group in Texas a year later.

11 thoughts on “Syringomyelia + Sisu

  1. Oh Leland, I just can’t hit “like” on this one. So glad that last picture is not a photo of your hand.Scared me for a minute. Is your middle finger on your right hand bent permanently like that or do you just have it bent to hit a key?


    • Thank you for the reply. I have been thinking about you and Morrie down there in the warm climate. Hope all is well with you; it’s been a long time since I was in touch. I’m trying to stay out of the assisted living facilities. I’m still in my little apartment and have a nurse come in twice a week to help with my bath and one day a week for housekeeping. -Life is good despite all these different things we must go through. I sure hope this finds you well, take care and God bless.


      • I want to do exactly the same, Leland. Luckily it is affordable to have in-house help here. Were you aware that there is a Murdo and Jones County Facebook page? You may not have an interest in it since I’m sure you lived in so many different places when you were working on Highway 16, but just in case….


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