Is This the End of Jaysgolf?!

I have been struggling to think of a way to talk about what has been going on in my life recently without the story coming off as pitiful.  Strong phrasing, I know.  You see, my ability to maneuver throughout day-to-day life has become increasingly difficult over the past couple years.  Specifically my ability to walk fluidly and with balance, such as it may be for me.  There is not any one thing to blame, there rarely is, but there are a few things that I can put atop the list.  We will get there, but first, let me go back to the time when You met me.  When “JaysGolf” was born.  I started Jaysgolf in 2011, almost ten years to the month as of the time I am writing this.  I was 32 years old, and now ten years later at 42, my abilities have decreased (and differed) substantially.  

When I was in my late teens, I swear I can remember saying to a friend of mine that I feared by age 40, my physical abilities would be much different.  Part of me now wonders if I was being pragmatic, or if the statement became a sort of self fulfilling prophecy… either way, no good will come from trying to figure that out at this point.  Right now my objective is to recover whatever it is that I lost in the last few years.  

I can tell you that my increased “disability” is a combination of both mental and physical components.  On the physical side, the brachial plexopathy was the major injury that sidelined me not only from golf, but my daily life.  Having my right arm cease to function for over 6 months adversely effected my ability to maintain my balance.  Hurt like a... well, that’s a given I suppose.  Everything my right arm did unconsciously to keep me upright was compromised.  Think of it like the long pole a tightrope walker uses, my right arm was doing things I was blissfully unaware of to maintain my balance.  In the time that passed, the better part of a year before regaining full use of my right arm, my modality changed drastically. Possibly permanently, given that my body mechanics were so thrown off.  During that time and afterward, I was never again as stable or comfortable on my feet.  Both in a literal and metaphorical sense. 

Before the injury, the peak of muscle atrophy, and 3 year after the injury.

That leads to the mental component I mentioned.  My “confidence” in my balance was ruined during that time.  I fell far more frequently than normal.  So, of course, my fear of falling and getting injured certainly increased.  In the first half of 2017 I was back in shape.  I had hit the gym and kitchen (diet) hard and regained 90% of my symmetry and strength and was on a pretty good track.  Then life happened again and I found myself with two parents in two different hospitals for the majority of 2017 and beginning of 2018.  I cannot properly convey in words how fragile and damaged my mind state was during that time.

Needless to say, I found myself in a rather dark mental place over the next two years.  I was absolutely not comfortable with myself or my surroundings.  No need to go into greater detail other than to say that in late 2019 I made up my mind to move out on my own by March 2020.

I succeeded in doing just that, signing a lease and moving in on Valentine’s Day weekend, 2020.  I started from scratch, no furniture aside from a computer desk and chair.  Three weeks later, the world shut down, for all of us!  

We all handle stress and anxiety differently.  Also, those two things manifest themselves differently for everyone.  For me, they increase my spasticity associated with my disability, Cerebral Palsy.  This is also sometimes referred to as “tone”.  Simply put, my entire body becomes tight and in a constant state of flection, especially my “effected” side, my right extremities.  I am absolutely unable to relax.  Thus, my mobility suffers and I “lock up” and can hardly move.  I cannot, for the life of me, convince my legs to follow the “left, right, left, right” protocol to which we all adhere.  

I find myself standing, unable to move, often in the middle of a thoroughfare.  This garners attention which will prompt well-meaning people to ask if I am “ok”.  This makes matters worse however as I get confirmation that I have gained the attention of others.  This then becomes a vicious battle between my mental and physical self as I attempt to relax and lower my tone.  But the more aware of my situation, the more tight and spastic I become.  By all rights, one could make the argument I am having what amounts to a panic attack.

So… in terms of independent mobility, at the age of 42, I find myself wondering if my best days are past.  Let alone my ability to play golf on a competitive level!  

Again, not trying to complain (much) or gain any pity, I struggle because I was/am a highly functional person with Cerebral Palsy.  To a point I paid little attention to my CP in the past at all.  Now it  feels as though the exact opposite is true.  All my attention is focused on what is “wrong”, and my overly logical man brain is seeking a “solution” or “fix”.  I can see the nail, give me a damn hammer!  

There is a saying, “if you do not move it, you’ll loose it”.  This applies double for anyone with a movement disorder.  I knew from an early age that I’d want to do as much traveling, cross country tripping, and “independent” fun activities as possible in my young adult years.  Which, to the best of my ability, I did.  I made sure I did things that would yield experiences and “stories to tell”.  As I write this now, I wonder, how close am I to being the subject of a Bruce Springsteen song?!

One day I may need some sort of “gear” to assist me in getting around, I feel like that day will come eventually.  For any one of us honestly.  But, I am not ready for that, nor do I feel like I have reached that point.  This is my ego talking, but I have this idea in my mind that if the time has indeed come that I need assistance I am a lesser version of myself.  That said, I am reluctant to be around others whether they be new acquaintances where I think, “if you only knew…”.  Or, worse, long time friends who might think, “what the hell happened to you?!”.

All that said, I’m headed back into physical therapy to get this sorted.  And I figure I’d bring you along with me, just like the good ‘ol days!