A letter to the judge regarding my husband’s upcoming disability hearing:
I am writing this letter in regards to my husband, Professor X, who has become quite disabled in the last 10+ years. I have been married to and lived with Professor X for over 16 years. We have two children together through adoption, because Professor X’s medical condition did not allow him to have biological children. We have no other family within 500 miles.
Professor X’s pain began 15 years ago when he first developed Cluster Headaches. These are more debilitating than migraines and comparable to the pain of childbirth. Fortunately, for the first few years these would come in clusters occurring every day for a week and then disappear for several months. He was mostly able to function normally, including going to work, taking classes, and socializing with others.
Approximately 11 years ago he started feeling testicular pain. This was uncomfortable, but bearable. He was not able to take long walks, but could still walk a few blocks without difficulty. He was able to work and attend school, even with this minor pain. He had several testicular and hernia surgeries to attempt to alleviate this pain.
By 2009, the minor testicular pain had become moderate to severe. He was using a cane for most walking activities. Although only one block away, he needed to drive to school. He went to a campout with the family and could barely walk to the bathrooms. He needed assistance for mobility whenever he left the home. He purchased a wheelchair (insurance would not pay for it) and used it to for anything more than a block in length.
By the fall of 2009, Professor X was unable to concentrate for more than 15-20 minutes. He dropped his classes and spent his days at home. He was no longer able to drive for more than 40 minutes and sometimes less. He could only be a passenger in a car for about one hour before the pain caused him to groan in agony.
Over the next 18 months, Professor X continued to get worse. His concentration levels decreased down to 5-10 minutes and his driving times to 30. He needed the wheelchair for virtually all out of the house activities, including taking the kids to school and running very quick errands. He was no longer able to do things such as grocery shop or attend the kids’ sports events.
In April 2011, he underwent a procedure to insert a peripheral nerve stimulator. He hoped that this would eliminate or decrease the pain levels he was experiencing every hour of every day by this point. Unfortunately, it seemed to do nothing to help his pain.
In May 2011, he attended his daughter’s preschool graduation still in a wheelchair and in the same pain as before his surgery. In August 2011, he was not able to attend our annual family camping trip because the pain was too great and accessibility too limited. He sat on the sidelines during the kids’ activities, if he was able to attend at all. In September 2011, he was only able to participate in his daughter’s birthday party for thirty minutes before he had to go back to bed.
Since the summer of 2011, Professor X has continued to decline. He involuntarily lost over 60 pounds in the last year, placing him at dangerously low weight levels. He spends over an hour per day in the bathroom because of intestinal issues from his medications.
Professor X can rarely concentrate for more than 3 minutes. He can read short, or light articles on the Internet; however, he is barely able to read the books that he once loved. He can no longer write any of the papers or thoughts that he once had written easily. After sitting for 45 minutes to an hour, he is barely able to sit, even when in his wheelchair or a couch, and must lie down.
He has become very socially isolated. He interacts with others outside of the home usually two or less times per week, and these are typically his doctors/therapists. Such interactions tend to be so exhausting that it can take him two days in bed to recover. He is deeply depressed because the pain is so relentless, with no hope of relief in sight.
Professor X is a devoted husband and father. He seems to spend the entire day resting so that he can spend one to two hours interacting with the family in the evening. Now however, he does not join the family for dinner on a regular basis because it is too hard for him to get out of bed. Recently, he was not able to attend any of his daughter’s birthday party in the other room.
Although he was a brilliant student, writer, scientist and thinker, Professor X is physically and mentally unable to do almost any of the tasks that he was once able to do. He is now an extremely slow processor who can neither read the texts he once adored, nor interact with most people, including his family at times. He does not attend events and does not travel well. He cannot perform the daily routines that he once could, such as washing dishes or cooking (too much standing), vacuuming, or doing laundry. He is fearful that he will lose his ability to drive safely and parent the children well.
I love my husband and it is heartbreaking to watch him go through this terrible pain and the changes in his life that have resulted. Thank you for reading this letter and taking all of these things into account as you make your decision during his hearing.