Sometimes,
at night when it’s dark, I find that I’m afraid of my body since it seems to be
changing a lot, even in comparison the changes I’ve already seen. If it’s cold
out and I’m alone, it seems like the tremors that once began so simply have
multiplied and have now begun to cause my whole left arm to shake wildly from
my bicep muscles to my clawed up hand. If it’s a long day, and I’m overwhelmed from giving it all to the excellence of a teaching performance, I find that I'm more prone to just want to shake off the world in
absolute silence by myself, decompressing before I can do anything else, and if I can’t, I find that I’m more susceptible to being emotionally drained for the way home.
But this seasonal winter stuff and the number it can do on negative thoughts, even if the soundtrack from La La Land is playing in the background, yeah... that's not my favorite.
It’s
a good thing to have a positive soundtrack, and I’m working on adding the final
25 or so songs to my 500 song playlist. Maybe that's what I'll do this afternoon.
Most times,
this whole Parkinson’s ride is what it is. I have it, and I am forced to deal
with it and confront it, so I can be positive about it and my outlook. I can
share my strategies for overcoming, and I can radiate happiness to be a great
person for myself and those who watch me tough it out or suffer through it, but sometimes, I just feel a sense of the dark when I wonder what else is going to come when I think about my other symptoms
(constipation, frequent urination, facial lack of movement from not smiling as
often to not blinking, bradykinesia, rigid muscles, hearing issues, balance)
and how they could be leading to more aggressive ones (dyskinesia, dystonia,
slurring when I talk, falls, softer voice, nighttime sleeping issues). Sitting
around contemplating a future with regard to work, home, car, and movement as well as the
need for babysitters is heavy, and I know it’s not guaranteed. Godzilla could
rampage tomorrow, but most likely he won’t, so I need a realistic game plan for
the future when it hits the fan. For as much as I can deal with the realities
of Stage 2, I’m not ready for Stage 3 and beyond. I’m just getting used to
being someone with a disability, which is something more pressing as I go from
stage 1 to stage 2 of this whole Parkinson’s thing.
Like
so many people, I still have plans and dreams. I still want to get out there. I
never want to stop being, but there is going to come a time when living will be
even slower and more vicarious than it is now, so for that, I have to
reconfigure more of my wiring.
My number one realization
in all of my goals for the next season of this game is that this whole notion
of stopping the spread of Parkinson’s is only a slowing down. Azilect is not a
cure. It’s assistance to let me work for me, but it doesn’t take away the
tremor forever, and neither would the medical marijuana in the video that many
people share with me. In the end, this condition does what it does. We take a
medicine and build a wall or send our forces out to beat the tar out of
dopamine thieving enzymes, and all we do is force the condition to take a
couple more downs to score a touchdown on us. Not that I’m against bringing the
team in for a goal line defense set up, but sometimes, the whole thing just
feels so absurd, like Sisyphus pushing a rock up the hill only to start all
over again tomorrow. Parkinson’s will find the path of least resistance and
push through anyways, whether or not we put a drop of oil on our bodies or not.
The only thing that
resistance truly does is it provides more time to live, laugh, love, influence,
experience, and to take in someone else’s experiences, so for that reason, we
need to keep resisting, and we need to keep believing.
Everything else is
movement toward another stage of the disease. When I think about those
consequences, it just shakes me to the core. These are things that are coming,
and I choose not to look at them for too long since it feels like Scrooge
staring at his grave. It feels like watching Gleason again when you realize
that everything after halfway is just more extreme representations of his ALS
condition, which he couldn’t fix anyway. And it’s at this point where a person
with a neurological condition, whatever that condition may be, knows that he or
she is going to live out the rest of his or her life in a progressively
deteriorating physical and mental state. We may not be Steve Gleason or Lou
Gehrig, but we will be the actor in our own drama.
For that, I hope to
Epictetus that I can be brave and tough through it all. I hope I can be brave
and shout out like Eddie Vedder regarding the song we need to sing to our body, even if it's about a car (Go – “Don’t go on me now!”). But most importantly, all I can hope is that I
can be a better person with the time I have left before the next more intense
stage. Since it seemed to take 5.5 years to go from stage 1 to stage 2, I hope
that this stage with meds and treatments can last me into my solid 50s (I’m 45).
However, nothing is
guaranteed. For months, I have watched these simple movements, which I hid in
my left hand back in 2011, and I see them openly start to transfer to my right
hand. Now, I’m not hiding them from people who might question them. You want to
talk about them, then let’s do so. There’s no point in denying them or trying
to rationalize them as something else. They are what they are. I’ve waited for
them since the cold set in last autumn, and I’ve been on the lookout for them
to become an everyday deal. At first, I wasn’t sure what was effects from the cold
and what wasn’t, but now, I just want to see if things slip back a little less
drastically when the spring comes back, but really, I know that they are my
reality, even if my knuckles don’t ache in this same way come the days of April’s
flowers.
On
days when I’m waiting for a mid-winter snowstorm to appear from a 60° sunny
afternoon, the wonders of whether this spring will ever come fill my mind with
a paranoid wonder of what will come in the next year of my life. Will this be
the last summer that I can possibly scale waterfalls in State Gamelands 13 or
did that happen back in 2014? Will my leg tremors get worse in my left foot in
such a way that I’ll never again be able to walk 23 miles around all of Blue
Marsh like I did in 2014 or even 10 miles total of an in and out hike to some
spectacular destination like I did in 2015? Is the dream trip to the Holy Ghost
Panel this summer the last great hurrah of what my hiker’s physical body is
capable of or will something snatch the opportunity from me before I can make
it a reality?
All
these thoughts scare the beejesus out of me.
As
days ebb and flow with good, bad, and repetitious unmemorable events, I do my
best to take everything as it comes and not let who and what I am get me down,
but sometimes, it just does. It’s not like I feel like crying. What would the
point be? It’s not like I don’t want to go. There’s so much to live for that
this isn’t an issue, but sometimes, I just want to be home and laying on the
couch, holding my wife with the distracting sounds of something playing on television.
And
it’s on nights like this where the answer is to bring her flowers and a smile
accompanied with a big hug and kiss. Love, really, is the only answer.
You nailed it! I can SO relate to the physical and emotional realities that you share. Each day as I experience this transition in my own life, I am also caring for my husband who is in stage 5 and going on 27 years since his diagnosis. As I watch him progress slowly through the stages, I know that I am on that same journey; he is an inspiration to me, but at times I can't help feeling fearful that all of my remaining useful days will be spent giving care and love that will have taken the remaining days of relative comfort, mobility and creativity from me.... and then...I feel guilty and ashamed to have indulged in self pity. This is not the life that any of us would volunteer for, but it is the reality of the life we have, and as my husband says, "it is better to be seen than viewed". So we love and live and live and love the life we have and find joy in the beauty and goodness that surrounds us, each and every one. (Follow me on Facebook at Parkinson's Family Caregivers or view my Blog "Parkinson's Perspectives: A Couple's Story") Carol Ennis
ReplyDeleteThese words are awesome and powerful. I commend you for your love and compassion. I'll follow you right now. Feel free to follow or share my stories as well.
ReplyDelete