Showing posts with label ALS Grief Process Artwork. Show all posts
Showing posts with label ALS Grief Process Artwork. Show all posts

סהל של אהבה

The translation of the Hebrew title of this piece is "Prison of Love."  The wooden frame of the piece, made of cedar 4x4s, was built to give a few more inches of height to my dad's lift chair which he used while he was at home during his decline due to ALS (which he passed away from in Sept of 2017).  The frame and the bars are meant to invoke a prison window, and the wires are meant to represent the tension, intricacy, and complexity that is involved while loving someone through a difficult time/situation/etc.

Working as a hospice chaplain, I see family members and friends do this for their loved ones all the time: by making the choice to be a caregiver for someone on hospice often requires that people choose a "prison of love" in order to do so.  This prison that people choose is difficult, but it is also full of beauty as they love those they care deeply for through all the difficulties and challenges that care giving brings.  The 'prison' is true in every sense of the word as many times care giving necessitates that the caregiver either severely limit or completely give up their ability to be away from the care giving location.  This can also be applied to many other life situations, including being a parent to a small child who is still fully dependent.   

In the detail photos below, note that the wires were pulled hard enough that they've pressed into the wood: this was done on purpose as a symbolic representation of the wear and tear that gets put on caregivers bodies both physically and emotionally.  The piece was quite back-breaking to make, and I put such tension on my hands in pulling the wire that despite wearing gloves my hands hurt enough after doing the piece that even running water over them was painful. 

There are some parts of the black wires that are polished silver, and a single red wire running through the piece - these are meant to invoke the beauty of the struggle of love.

This piece was created as a part of the Advent Art Series at Awaken in St. Paul and so has theological meaning as well.  The seven bars and the seven bolts on top of the piece represent completeness and perfection as it does throughout the Hebrew Bible and New Testament, and the three bolts on the bottom (see detail below) are meant to symbolize the Trinity - Father, Son, and Holy Spirit.  These three bolts are on the base of the work as the Trinity in Christian theology is the basis for love and creation.  The central word on the piece is "'Immanuel," (which means "God with us") and the text around the piece is Isaiah 53, the Suffering Servant passages which Christian theologians believe point to Jesus as that servant, come to this world in love to give himself as a sacrifice for all.  

The piece is 30" x 30".















ALS Speech Lament - 3.4.2018

My dad was diagnosed with ALS in March of 2017 and passed away in September of 2017.  Being a full-time hospice worker, I see death every day from every kind of disease imaginable - and I believe that ALS is one of the most difficult diseases.  Not because of the fact that it takes away movement in the arms, lets, feet, and hands (which is tragic enough) but that it ultimately takes away your ability to speak and communicate, while retaining full mental function and awareness.

I've been thinking for a long time about how to communicate this kind of loss through an image, which has been a much longer process than I would have thought because of the multiplicity of things that I'm trying to communicate.  The photo below is the end result of that process.

I don't normally explain my self-portraits in detail, but this one needs that explanation.  The red thread around my mouth is meant to represent both the loss of speech, and to symbolize the motor neurons that die off when someone has ALS.  The blue makeup highlighting my eyes is meant to highlight the fact that ALS does not affect the mind, and that those inflicted with ALS are still 100% aware of what's going on in their own body and around them.  The white background contrasting into the black that I'm wearing is meant to show the body being swallowed up into an internal prison (represented by darkness in this photo), while the mind remains pristine (represented by the white background).     


September 28th, 2017 - 16x20






















The Greek text in the lower portion of the drawing is translated below (ESV).  


Revelation 21:1-4; 10-14, 22:1-5

Then I saw a new heaven and a new earth; for the first heaven and the first earth passed away, and there is no longer any sea. And I saw the holy city, new Jerusalem, coming down out of heaven from God, made ready as a bride adorned for her husband. And I heard a loud voice from the throne, saying, “Behold, the tabernacle of God is among men, and He will dwell among them, and they shall be His people, and God Himself will be among them, and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.”

And he carried me away in the Spirit to a great and high mountain, and showed me the holy city, Jerusalem, coming down out of heaven from God, having the glory of God. Her brilliance was like a very costly stone, as a stone of crystal-clear jasper. It had a great and high wall, with twelve gates, and at the gates twelve angels; and names were written on them, which are the names of the twelve tribes of the sons of IsraelThere were three gates on the east and three gates on the north and three gates on the south and three gates on the west. And the wall of the city had twelve foundation stones, and on them were the twelve names of the twelve apostles of the Lamb.

Then the angel showed me the river of the water of life, as clear as crystal, flowing from the throne of God and of the Lamb down the middle of the great street of the city. On each side of the river stood the tree of life, bearing twelve crops of fruit, yielding its fruit every month. And the leaves of the tree are for the healing of the nations. No longer will there be any curse. The throne of God and of the Lamb will be in the city, and his servants will serve him. They will see his face, and his name will be on their foreheads. There will be no more night. They will not need the light of a lamp or the light of the sun, for the Lord God will give them light. And they will reign for ever and ever.

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.

ΠΡΟΣ ΚΟΡΙΝΘΙΟΥΣ Α 2:9

But as it is written, Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him.   - I Corinthians 2:9