ALS Speech Lament - 3.4.2018

My dad was diagnosed with ALS in March of 2017 and passed away in September of 2018.  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).     

Self-Portrait Makeup Study 3.4.2018

This is a study for my ALS Grief Process Work.

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.