{"id":448,"date":"2023-10-17T00:32:19","date_gmt":"2023-10-17T00:32:19","guid":{"rendered":"https:\/\/wickedsister.evit.com.au\/index.php\/2023\/10\/17\/forgive-me-my-absence\/"},"modified":"2023-10-17T00:32:19","modified_gmt":"2023-10-17T00:32:19","slug":"forgive-me-my-absence","status":"publish","type":"post","link":"https:\/\/wickedsister.evit.com.au\/index.php\/2023\/10\/17\/forgive-me-my-absence\/","title":{"rendered":"Forgive Me My Absence"},"content":{"rendered":"\n
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Forgive Me My Absence<\/h1>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n
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\"\"<\/p>\n

I have no excuse.<\/p>\n

Here is something of an update. It\u2019s the least I can do.<\/p>\n

My health has deteriorated at about the same pace as it has been deteriorating for the past 22 years. The problem is, I don\u2019t have much runway left. But I have some.<\/p>\n

Above the neck, I\u2019m still okay. I can speak, chew, wiggle my ears, and tell white lies. Below the neck, I have only a tiny amount of movement left in my right hand. use it for frail attempts to operate joysticks to manipulate my Jaco robotic arm and my iBot.<\/p>\n

\"\"I\u2019ve gained too much weight, and my capacity to breathe has deteriorated. A bout of pneumonia put me in the hospital over Memorial weekend 2023. I emerged none the worse physically, but it was a scare.<\/p>\n

Lots of other systems are worsening, but I won\u2019t bore you with the details.\u00a0<\/p>\n

If you\u2019ve known me for a long, you know what\u2019s coming \u2026 here it is.<\/p>\n

Despite my physical deterioration I remain acutely aware of how fortunate I am, and what a full life I lead.<\/p>\n

No change there.<\/p>\n

On the technology front, I no longer drive my Invacare wheelchair with my hand on a joystick. I use a device called Munevo Drive<\/a><\/span>. Much more on that to come.<\/p>\n

On the recreational front, Kim and I have taken cruising frequency to a whole new level. It\u2019s part of our \u201cfront loading the fun\u201d campaign. More to come.<\/p>\n

Out of necessity, Kim has taken early retirement. She is my full-time caregiver now. The pay is awful, but you can\u2019t beat the commute.<\/p>\n

I\u2019m active on a couple of committees\/panels. Not a huge time commitment, but it keeps me engaged.<\/p>\n

\u00a0 \u00a0Buffalo Neuroimaging Analysis Center Patient Advisory Council<\/a><\/span><\/p>\n

\u00a0 \u00a0University of Pittsburgh Wireless RERC Consumer Advisory Group<\/a><\/span><\/p>\n

\"\"There\u2019s one project, however, that has filled my heart more than anything else, outside of family \u2014 3i Housing of Maine<\/a><\/span>. It may be the primary reason I have neglected blogging for the past year. I\u2019ve written about 3i Home here<\/a>,<\/span> and I will write much more, I hope.<\/p>\n

I intend to dust off this old blog and see if it\u2019s got some more life in it. No promises though. I am easily distracted by shiny objects.<\/p>\n

Photos by Levi Gershkowitz, Living in the Light<\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n

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get the latest blog posts emailed to you directly<\/h2>\n

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