ALS Reflection Photo: Chrysalis (S) 8.29.2017

On March 21st, 2017, six days after his 69th birthday, my dad was diagnosed with ALS. He had been having difficulties with his knee giving out for several months, starting in the fall of 2016. We had never anticipated the nightmare that this was not a simple physical problem, but a neurological degenerative disease: until my mom and dad had met with neurologist Verica Neskovic in Wausau WI, who immediately suspected ALS.

After a slew of tests, including a false positive for Lymes Disease and final EMG testing, Dr. Neskovic diagnosed him with our greatest fear. At the time of that appointment my dad was still able to walk with the use of a walker and had decent general use of his limbs, hands, and voice: Dr. Neskovic gave him 3-5 years based on what she saw at the time of the appointment. Since then my dad has taken a sharp decline, and as of the writing of this reflection (August 31, 2017) he has lost all movement other than a couple inches with his left foot, the ability to turn his head slightly, and a rapidly diminishing voice. My dad now lives in an assisted living facility in my hometown in Wisconsin, and is on hospice care. I’m currently writing his funeral and am creating a drawing for the cover of his funeral program, so that he can hear the funeral and see the drawing before he passes away.

Over the past year or so, my wife – courtesy of the help and instruction of a good friend and neighbor – has been raising and then releasing monarch butteflies. The monarchs are truly amazing to watch as they transition from caterpillar to butterfly – and seeing the chrysalides up close is really amazing as they look like beautiful works of art: especially when the butterflies get close to coming out and you can see their wings through their chrysalides.

Hospice work is often full of analogies as we process with patients and their families about our patient’s situations: more so for me personally at this time due to my own dad being on hospice as well. A few nights ago as I was looking at our future butterfly Sully’s chrysalis – which is so thin now that you can see his wings - I was struck by a butterfly analogy for my dad. Looking at the chrysalis, the soon to emerge butterfly looks trapped after its life as a caterpillar which was free to move around. In the same way, after nearly 70 years of being able to move freely, my dad is now locked in and is unable to move. I’m not in any way looking forward to my dad’s passing, but I do believe that when he does he will be given his new body in the new heaven and the new earth just like a butterfly has a ‘new body’ after emerging from its chrysalis. “For while we are still in this tent, we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life.” II Corinthians 5:4 (ESV) 

I took the above photo as a reminder that my dad still has tremendous beauty within him and around him despite his being trapped in his own body by ALS: a truth that I believe applies to all of our hospice patients, no matter what disease is affecting their bodies.

Life #3 - Explanation of Work

STATEMENT
For what became a very complex project which was well over a solid year in the making, the statement of the drawing is very simple:

There is a royalty to Life: yet the path of Life to redemption contains an intricate web of pain, suffering, and experience. 

The color blue in the drawing is meant to represent Royalty, Beauty, and Goodness and serves very much in the 'silver lining' sense as there's not much of it in the drawing. Other than surrounding the large letters of "Life" that make up the center of the drawing the only other blue is the blue writing that surrounds the very last sentence of the drawing - a passage from Revelation 22: "And they shall see his Face..."  To read across the drawing in blue the message is simply: "Life - and they shall see his Face." In this sense the red and all other details in the drawing are meant to fade into the background of this over-arching yet very simple message.

The red symbolizes the ever-present oppositions in our lives that sprinkle pain and hurt on us every day: even the very best of days. As much as we may not like it, a large part of lived experience is negative - hardships, fears, anxieties, depressions, angst, hatred, etc. Life must engage all of these things directly, but it cannot become so ensnared in them that Life itself is lost: our lives must rise above and work through those hurts and pains by the power of Jesus Christ working through the Holy Spirit to bring us into communion with the Father.

The black in the drawing is the neutral color: some positive things are written in black and some negative.  The white is generally neutral as well, partaking in both positive and negative themes of the drawing


SCRIPTURE
There are six sections of scripture in the drawing: two from the Hebrew Bible (aka Old Testament, Tanakh) and four from the New Testament.  I will list the scripture reference, followed by the location in the drawing in parentheses, and then the verse(s) themselves (all in English) below the reference (these will be listed in the order that I put them in the drawing). 

Numbers 6:24-26 (Hebrew text at the top left of Drawing #2):
"The LORD bless you and keep you;
the LORD make his face to shine upon you and be gracious to you;
the LORD lift up his countenance upon you and give you peace."

Matthew 6:25-34 (English text in black surrounding the cube on the far left lower part of the drawing)
“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? Therefore do not be anxious, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”

Ezekiel 37:5 (Large Hebrew Text beginning in the far upper right part of drawing #3)
"Thus says the Lord GOD to these bones: Behold, I will cause breath to enter you, and you shall live."

John 11:25 (English text in black surrounding the cube on the far right lower part of the drawing)
"Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live…" (the same verse is repeated several times to even out this cube with the cube on the left side of the drawing)

Revelation 22:1-3 (Greek text next to the large tree on the left of drawing #3)
"Then the angel showed me the river of the water of life, bright as crystal, flowing from the throne of God and of the Lamb through the middle of the street of the city; also, on either side of the river, the tree of life with its twelve kinds of fruit, yielding its fruit each month. The leaves of the tree were for the healing of the nations. No longer will there be anything accursed, but the throne of God and of the Lamb will be in it, and his servants will worship him."

Revelation 22:4a (English text at the very bottom right of drawing #3, surrounded in blue text)
"And they shall see his Face…"


SYMBOLISM/DRAWINGS WITHIN THE DRAWING/OTHER TEXT
At the foreground of the drawing is the large word "Life" but the real intricacy of the drawing is in the surrounding details.  I will list here some of the detail elements of the drawing as well as specific locations that are drawn.  It would be impossible to cover everything, but I will give a good sampling.

The largest single element in the drawing other than the word Life is the corridor that compositionally makes up most of the middle drawing.  The tunnel that this is drawn after is a tunnel that links what used to be the Bear Stearn's building on Madison Ave in Manhattan to Grand Central Terminal (often incorrectly called Grand Central Station).  I found the tunnel itself to be visually interesting, but the reason that the location was important to me is because when my wife and I first got together she was working at Bear and I was working at Li-Lac Chocolates which has a location at Grand Central.  In this sense the tunnel serves more as a bit of nostalgia for me for when we first got together and when I first moved to New York - a period in my life that be a defining time for me for the rest of my life. 

At the center (or really end) of the corridor is the Hebrew word YHWH which is the personal name for God in the Hebrew Bible.  My statement here makes every attempt to be as clear as possible - being with God is the center, focus, and goal of the drawing.  YHWH is also repeated within the cubes on either side of the drawing: I meant for this to be a unifying element of the three drawings as well as giving nod to the Trinity of Father, Son, and Holy Spirit.  The cube in drawing #1 (on the left) was drawn to represent my cubicle at work and how ever there I want to try and serve God in every way possible (which I often fail at).  The cube on drawing number #3 (on the right) is there simply as a unifying element for the drawing.   

The Alpha and the Omega on the far right of drawing #3 references Revelation 1:8 and 22:13 where Jesus refers to himself as the Alpha and the Omega, the beginning and the end.  Also on the far right side just under the alpha and omega is the Hebrew word 'elohim which is the general word for 'God' or 'Divine Being' in Hebrew and then right below that is just a single yod - referring to Matthew 18 when Jesus says that not one yod ('jot' AV) will disappear from the Law until all is accomplished.

There are also many "drawings within the drawings" that don't serve so much as symbols as they are simply locational drawings or drawings of important items.  Many of these drawings within the drawing center on buildings and structures that are a part of lower Manhattan, specifically the World Trade Center and World Financial Center areas as this was the area that I worked in during the time that I was working on the drawing.  There were so many different things going on in the areas - specifically the rebuilding of the World Trade Center - that when I'd get home I'd often want to draw what I'd seen during the day: both from views out of the World Financial Center and things that I'd see on my walk to and from work. 

Drawings (and partial drawings) within the drawing include: a scene from besides the Thames River in London (bottom of Drawing #1), a view from our brownstone at the time of the drawing in Brooklyn (top of Drawing #3), the Barclay-Vesey Building, the brownstone we lived in at the time of the drawing, the Brooklyn Bridge, the Empire State building (twice), the new Goldman-Sachs building, and St. Paul's Chapel.

The hand in the bottom middle of Drawing #2 is supposed to be a gesture of desperation or of someone grappling with something, but nothing specific is in mind.  The phrase 'Everything Burns' is partially obscured by the hand.  The words written along the left side of Drawing #2 in large text are Fear, Passion, and Sorrow.

The smallest text (of which there is more than anything else in this drawing) I simply call 'filler text' - the tiny, mostly illegible writing that 'fills in' much of the drawing.  I love text-based drawing and don't mean to say 'filler text' in a negative sense: in most cases it's my favorite part of the drawing.  The filler texts are made up of personal thoughts, personal fears, personal struggles, repetitive sequences of words, song lyrics (often from whatever I was listening to as I worked on the drawing), personal desires, personal dreams, and rants.  None of these texts are really meant to be read - in fact reading it all would be impossible because I put letters where 'filler' is needed, not in sequences of sentences and/or words.  Very little of the drawing is meant to be read: the very first part of the first drawing was what I wrote in the far upper left corner: "It's not meant to be read..."  In this way the filler text composes the real fabric of life experience: the consistent background that's often ignored in the big picture of life.