Spoons

Spoons

It should be no surprise that summer is my least favorite season. Despite the years I’ve spent in Tennessee I am still an Alaskan boy at heart with climate preferences like those of a golden retriever – I’m happiest when it’s no warmer than forty degrees and my feet are wet. I’m also one of a very small group of people whose autoimmune disease symptoms became more painful when the weather gets warmer….which means that as summer heats up I feel progressively worse – when July rolls around my days involve a lot of just laying around reading and trying to mentally “will” autumn to appear in August.

Despite my penchant for speculative subject matter in my art my taste in reading material is fairly mundane. Currently on my Kindle you’ll find the following books:

  • Confederates in the Attic
  • The Year 1000
  • The Mound Builder Myth
  • The Color of Law
  • Empires of the Sky
  • Drums Along the Khyber

Most of these books are historical works, but sprinkled among the titles from times past you will find books about spoons, specifically spoon theory –  an idea that has very little to do with silverware and everything to do with communicating the challenges and discomfort brought about by the  daily battle with  autoimmune diseases. It’s a wonderful concept brought about by Christine Miserando and you can read about it at length at http://www.butyoudontlooksick.com.

Spoons are markers used in allocating/assessing how much you can get done in a day despite the dramatically reduced energy level and equally elevated pain levels that come with autoimmune problems like rheumatoid arthritis, lupus or in my case anklysosing spondylitis. You start out the day with a dozen spoons, and every action – and I mean EVERY action will cost you one or more spoons. The allocation of twelve is purely arbitrary but I found I was able to calibrate my spoon expenditures rather quickly. Getting out of bed costs one spoon, getting dressed is another one, climbing stairs takes two spoons and going to church takes three…so it’s not hard to see how you can run out of spoons rather quickly.

I’m barely scratching the surface of this marvelous communications tool and I highly recommend you check out Ms. Miserando’s website and read her ideas first hand.

 

 

 

“…let’s give him a big hand!”

Living with an autoimmune disease like ankylosing spondylitis has meant living with chronic pain and impaired mobility, but I was surprised, yea alarmed when the muscles in my hand and forearm started to uncontrollably spasm and twist into a claw-like flex. Dark thoughts of tetanus came to mind and at one less-than-lucid moment I wondered if I’d become mind-controlled by the Skeksis from Dark Crystal but good sense returned and I began to research for a solution to my manual woes. It turns out that the flexing and arching and “owwing” is a real thing – it’s known as a carpal spasm and can be brought on by overwork and/or the lack of sufficient calcium or magnesium in my diet. By limiting my time at the drawing board and knocking back an extra yogurt each day I’ve been able to curtail the attacks to a large extent.

…which is just as well.

Since my childhood there has been a dramatic increase in the use of hand gestures as part of human communication far beyond the sign language between cowboy and Commanche that I witnessed each week on television. Simple movements such as an index finger drawn sharply across a larynx (“killed”) or a hand cupped to an ear (“listening”) have been joined by American Sign Language for use by the deaf, gang signs adopted into general street use, and other communicative gestures borrowed from sports and military. The use of nonverbal communication has increased to the point that it is no longer safe to just idly wave your hands. For example while coming to grips with these carpal spasms I have:

  • Been slapped by a deaf lady for signing an indecent proposal
  • Accidentally called out  a gang member
  • …and I may have inadvertently flipped off ET

The one time I did try to respond to communicating via hand signals it turned out that the lady in question was just trying to dry her nail polish…which is why despite years of conditioning via the military I now walk about with my hands in my pockets.

Thanks-that-I-am-giving

I never was a little kid – at least internally. From the time I was able to form coherent thought I was a fifty-year old man in a kid’s body and much more inclined towards pragmatism than my friends. Because of that nature as I approached the precipice of adulthood at eighteen I spent a lot of time trying to develop a good set of mental tools to get me through life, and came up with these half-dozen personal rules:

  1. Taking inventory of my interests and carefully choosing how I’d spend my time
  2. Avoiding trouble and in doing so learn from other people’s mistakes
  3. Thinking through problems the way water always flows to the lowest level
  4. Making everything negotiable when it came to changing myself.
  5. Re-casting challenges as a matter of endurance, then hanging on like a bulldog.
  6. Having faith in the future, that “maybe tomorrow will be a better day”

I figured that by following these guidelines I’d get through life with a minimum of fuss, solving problems efficiently and avoiding the setbacks that my friends encountered, but as Napoleon said “no battle plan survives contact with the enemy”. That inner fifty-year old made it difficult at times to adapt to social trends and mean old Mister Genetics blessed me with autoimmune issues that have had a game-changing effect on every aspect of my life, but I was still able to hang on to #6, that “maybe tomorrow would be a better day”

…but it’s getting more and more difficult to keep telling myself that and I often fear that there are no more “do-overs” in my life, especially with physical issues. I thought ankylosing spondylitis was the major game-changer in my life, but then I fractured my ankle and that became the major game changer…right up until I took a tumble down our stairs and damaged my knee.

Now my game, my life has truly changed and while I may not totally housebound I am pretty close to it and my best efforts have not been equal to the challenge. There are a lot of things I cannot due (not for the lack of trying) and I struggle with wondering if I don’t have that many more “better days” left to me. It’s a bitter pill  to swallow and while it takes effort to combat that bitterness there are two excellent ways to do so:

  • Service – doing something for someone else
  • Gratitude – expressing thanks for what I do have

That second remedy is why I cherish Thanksgiving – and by “Thanksgiving” I don’t mean the traditional holiday with the Pilgrims, Squanto showing them how to fertilize crops with dead fish and all the emotional baggage the holiday has acquired recently. I’m talking about my own personal “thanks-that-I-am-giving”

  • I’m stuck in my house a lot?
    • Isn’t it great that I’ve got a nice place with comfy places to sit and plenty of DVDs to watch
  • We’re far away from family and old friends?
    • What a blessing to have Facetime and Skype to keep in touch with my whole family.
  • An A/S flare keeps me from walking or doing simple tasks?
    • My Beautiful Saxon Princess loves me and selflessly aids me in everything. 

…and (despite what I said before) tomorrow very well may be a better day.

Sunday Will Never Be The Same

Spanky and Our Gang was just an inch-and-a=half too successful to be considered a one-hit-wonder but their presence in American culture was cut all too short when lead guitarist Malcom Hale died unexpectedly in the fall of 1968. With tunes like “Lazy Day” and “I’d Like to Get To Know You” the “sunshine pop” band’s positive message provided a welcome respite during those times when social upheaval dominated the news media, but  I will always remember them best for what was arguably their signature tune “Sunday Will Never Be The Same”.

…which is probably why I’ve been playing it a lot lately.

Sundays are definitely not the same for me at this stage of my life, when making sure that my I-Phone is plugged in and charging has a higher priority than making sure my shoes are shined and trousers ironed for work tomorrow morning – or simply being able to make it from my bed to my papa chair prompts the same sense of accomplishment that completing a 5K did when I was younger. That same physical limitation has also transformed church attendance from being almost a habit into to an eagerly anticipated/much appreciated opportunity for spiritual transfusion on those rare days when we can get there.

…but then again some things are not so different. It’s distressing to see heated demonstrations devolve into street violence, but at least the anti-fa and alt-right aren’t bombing each other like the Weather Underground was in the habit of doing fifty years ago.

Life has stayed the same inside the walls of our home as well. Even though my Beautiful Saxon Princess and I are battling our respective autoimmune issues our feelings toward each other are just as warm – no, even warmer as they have always been and we have children and grandchildren around us that share those same feelings, all of which make our home a haven from the craziness

Sunday may not be the same – it’s harder in some ways but in it’s better in the ways that matter.

 

Keeping an Eye on Things

One of the scariest aspects of ankylosing spondylitis is the effect it can have on vision. It’s all tied in with way A/S can mess with your immune system but to be frank the technical details don’t interest me as much as the physical symptoms. No one likes to have their vision impaired but for a visual artist blindness = death. As best as I can tell Iritis is the worst case scenario and so far I’ve dodged that bullet, but general photophobia is also common, and anyone who has known me for long is familiar with my ever-present squint, as documented by every photo taken of me from infancy on.

Sunglasses have been a godsend to me and at 66 I am close to blind in the noon-day sun without them. Sadly enough vision problems impact on my production as well – while LCD screens don’t take the same toll on my eyes that cathode ray tube displays did,  I still have difficulty staring into a screen or working under a desk lamp for any length of time and sometimes that difficulty translates into a gap in posts for this blog.

…and yes, the title is a terrible, terrible pun.

2019: Becoming Pak

protector

Because it is usually displayed as a fairly small image most people don’t recognize my avatar as anything but some sort of alien, when in fact he is a Pak Protector. Pak Protectors are an invention of noted SF author Larry Niven and figure prominently in his Known Space cycle of stories. They are an old race from a world near the core of our galaxy, a world with high radiation levels and crowded conditions that brought on rapid and extensive evolution.

The Pak go through three stages in life with the first two analogous to human child and adult states,  but instead of expiring at our own  “three-score-and-ten” limit they go into a third phase of existence known as  the Protector stage, which is brought on after a breeder ingests a tuber called Tree-of-Life which a contains a virus that acts as an evolutionary trigger. Humanity is descended from a colony of Pak breeders stranded on Earth millennia ago when the Protectors that established the colony died when their Tree-of-Life crops failed. The original Pak Breeder population evolved into modern humans and all primates of our world would transform into the Protector stage if exposed to Tree-of-Life root.

The transformation produces  positive characteristic “improvements” that mirror the negative aspects of aging:

  • Skin thickens into a leathery armor-like covering
  • Teeth fail out and are replaced by a beak
  • Fingernails transform into retractable claws
  • Joints deform in a way that increases leverage available to muscles developing

All these changes make Protectors extremely efficient fighting machines, which is just as well as protection and survival of their family becomes their sole reason for living and their lives become one constant battle with other Protectors living on a crowded world with limited resources.

The most significant change is increased cranium size and brain mass which results in phenomenal increase in intelligence, which is why one of the first remarks a newly transformed Protectors is “I’ve been so stupid”…a sentiment I find myself expressing many times since passing age sixty. The experience surviving to your seventh decade alone imparts a lot of wisdom and if you’ve endeavored to learn from your mistakes you end with knowledge and judgement that would rival Mr. Niven’s creations.

There is a dilemma that comes with that knowledge: what do you do with it? In times past elders/seniors/geezers were accorded a measure of respect and their counsel was considered valuable. It sure doesn’t seem that way now though – most of the time people look at me and just see a member of the “fifty-five-to-dead” demographic with the more extreme voices advocating euthanasia or other marginally less drastic measures to reduce the cost of elder care on society as a whole.

I try not to think about the situation, in fact when my when my autoimmune issues started ramping up in the late 1990s and I was first diagnosed with ankylosing spondylitis. I took a page from the handbook of an eleven-year-old coping with the idea of Santa Claus: I embraced the idea of “well, what if Tree-of-Life really did exist” and instead of chronic pain and limited movement looked forward to life as a totally bad-a** senior citizen,

…a feeling that lasted for maybe three minutes at most and I embraced those small Pak traits I did end up with, namely a fiercely protective and supportive love of for my children, grandchildren and eventually great-grandchildren… and a desire to use whatever insights gained from my “I’ve been so stupid” epiphany to help them find an easier road in Life than I walked.

 

 

 

Laptops, Hacky-sacks and Soda Straws

Keeping this page going is like kicking a Hacky-Sack. As long as I keep busy and frequently add words and images I attract views and followers. Unfortunately there are times in my life now where writing is not quite – but almost as impossible as keeping a little leather packet full of rice in the air. I’ve made no secret of the fact that I deal with severe autoimmune problems, that between ankylosing spondylitis and rheumatoid arthritis the simple act of walking can sometimes defeat me.  What I haven’t been as open about  is the running gun battle I have with upper respiratory infections. It’s not unusual for me to have up to six cases of bronchitis a year; I’ll spend three weeks fighting the sickness only to get sick again only three weeks after I get better.  To put it bluntly I spend most of my time feeling like I am trying to breathe through a soda straw.

 Both the inflammatory diseases and respiratory problems stem from questionable medical practices of the mid-20th century.  I’m a thymus baby – as an infant I had an enlarged thymus which was thought to cause SIDS ( Sudden Infant Death Syndrome) The condition was called status thymicolymphaticus and while that is now an obsolete term it didn’t keep the doctors from removing that pesky gland with a series of hard x-ray treatments in 1953. The practice was discontinued not long after my treatment – a small comfort now that I’ve lived 64 years with a compromised immune system.

 It’s frustrating because I did everything right in terms of healthy living and I still ended up in the cross-hairs of a disease I didn’t even know about until I was almost fifty. It’s frustrating because I have a healthy dose of transpersonal commitment, a genuine desire to help those around me and other than call friends there’s not much I can do.

…so I write. I hope that I will some up with something that will bring insight, comfort or just a laugh to others. Unfortunately there are times when I can’t even do that (write) and I just have to hope that you’ll all hang around until I can get back to the keyboard.