As I re-read yesterday’s post, it dawned on me that I had a perfect case study to illustrate the impact of rest on our bodies. As if my own experience of chronic exhaustion wasn’t enough evidence of this claim, I can point to an extraordinary discovery in Zach’s physiology over the last 12 months as proof of the connection.
Zach was diagnosed with Shwachman Diamond Syndrome (SDS), as was our Daughter Alexis (after we lost her in 1997.). This Autosomal recessive condition, initially identified as a collection of Gastro Intestinal and Hematological symptoms (thus, Drs. Shwachman & Diamond) we have learned a lot about the genetic condition since we were first introduced to the diagnosis a few decades ago.
On the hematology side, SDS can manifest in multiple chronic and acute blood disease symptoms. Alexis, exhibited Aplastic Anemia, which in short meant the bone marrow blood factories were no longer producing any of the required three blood components needed for survival. This meant no white blood cells (to fight infection), no red blood cells (to deliver oxygen to the body) and no platelets (to clot the blood and prevent internal bleeding.). Ultimately, Alexis was not a candidate for a bone marrow transplant (aka she wouldn’t have survived the process) and the development of Aplastic Anemia, secondary to SDS, took her life.
For Zach, the hematology was affected, but in a less severe way. As an infant he suffered from thrombocytopenia (low platelets) which has since resolved, and also chronically, he has had a lifetime of leukocytopenia (decreased white blood cells). Specifically, Zach’s counts for “new” WBCs being produced have always been sub normal. His cell shapes and volumes have also been irregular. His immune system is compromised and his ability to fight infection, threatened.
When COVID hit, we immediately canceled all external activities and supports for Zach. This included nursing care, respite care, school and other daily activities, socializing (the biggest loss for him) and anything that could expose him to the deadly virus. I have blogged about some of the challenges we faced, taking all of his care that was once divided up amongst a team of dozens of caregivers, and absorbing it between his Dad and me. Not an easy task and we were not alone in this quest to be hyper vigilant in protecting our vulnerable loved one during COVID.
But this next part is unique, for us anyway, and bringing us back to rest, and Oprah’s new definition of ”success.” Zach routinely gets blood testing to monitor his counts. In November, his CBC test was so absolutely normal, that I sincerely doubted it was his blood specimen. Cell shapes and sizes were perfect, as were even the number of new WBCs. I accepted this as some possible miracle, and also told myself it may not even be accurate so I didn’t celebrate. I just sent a “Thank You” prayer up, and went on my way.
We continued Zach’s isolation protocol. Which meant a lot of sleep for him.
Pre-COVID Zach’s school bus arrived at 6:10am. He was first fed at 5am, then sharply at 6am we performed a repeated stealth like mission of physically moving him from bed to toilet, where his clothes, morning clean up supplies (tooth brush, mouth swabs, wash cloth and dressing for his g-tube awaited.)
We cleaned/dressed him as quickly as possible with the hopes that by the time he was awake enough to object (which had a tendency to get violent) we would already have him buckled into his wheelchair, where we waited in the dark garage for the bus lights to shine down our street, so we could take him down the driveway. His bus ride was roughly 90 minutes to WDC, and he had a similarly long ride home at the end of the day.
Since COVID began, not only has Zach been sleeping later, but on a given day he extended his average nightly sleep from 10 ish hours, to 14 ish hours. Since he’s not yet back in the community, this pattern continues, and it is nearly predictable that he won’t awake before noon, and often sleeps even later than that. 14 hours of sleep? Who needs that? Well, apparently Zachary does.
When Zach’s blood work was repeated in April, I was shocked to see all normal results again! I joked with his Dad “Wow, his CBC looks better than mine!” Even though I was doubtful to see November’s normal findings, now that we had the same pattern in April I couldn’t help but accept his status of ideal and perfect hematological health. After 22 years of diseased blood work, his body seems in perfect harmony.
This long, circuitous trip down SDS memory lane brings us to the point of today’s post: The connection between rest and our body’s state of maximum function is undeniable. I have lived with chronic sleep deprivation long enough to recognize when I have had a taste of sleep: I am more clear headed, less reactive, more likely to make good choices (IE choosing food that my body can use, instead of “edible food like substances”). I am more creative, energized and comfortable.
And that is just from a taste of rest. I can confidently say I am in no way as rested as Zach seems to be, so I have high hopes that when I actually get to sleep until I am rested, and go to bed when I am tired, I will truly begin to enjoy the fruits of life promised by so called “success”. If I am unsure, I need only look at the two most recent lab reports of Zacharys to see this Case in Point.
Make the connection, and let’s all start striving for this type of success!