Coronavirus Disease 2019 (COVID-19)

This is like a detective story, where the author follows the bread crumbs, leading up to the ultimate discovery of a brain tumour. I too follow such clues in my own life as I try to make sense of myself and the sometimes puzzling world around me.

The symptoms included a rumbling sound in his ears, which anger or irritability seemed to trigger and he interpreted as being a train in the local vicinity; more likely though it seems it could be caused by blood pressure, which I sometimes get, with ear canals blocked with wax. In other words this is not so much an hallucination as he believes but internal, bodily phenomena. The problem is interpretation over identification (what something reminds you of as opposed to discovering what it actually is - memory and imagination as opposed to present perception).

One of the interesting things this book discloses is the apparent distance and direction a sound is coming from. What we may mistake as being loud and far away, could in fact be much closer than we imagine, internal even. The book is therefore asking, can we mistake inside sensations on all sensory levels, for external ones and if so, what are these clues trying to tell me?

Other symptoms included giddiness, connected to fainting fits, nausea followed by vomiting, leaning to one side and as the illness progressed, eyesight and handwriting deterioration. He also suffered from headaches, which eventually became focused on the back of his head. One subtle symptom that seemed to creep up on him was a gradual loss of taste, like Covid patients nowadays but with no loss of smell. After the operation, he regained this lost sensation.

Apart from all this, he starts getting unconscious clues to the fact that something serious is going on in his life, through dream symbolism or even external events drawing his attention to the same thing (films on the subject, a dying patient in a mental ward etc). By monitoring his life, he starts to build up a picture of what is really going on, with his illness and that it is indeed an illness. Something out of the ordinary was happening internally, just as it could in the outside world, disturbing the peaceful routine of existence but the question was, what? Like paranoia from chronic insomnia, you know something is killing you but you don't realise what it is.

I for instance have two common dream themes, one which is needing a toilet but not being able to find one, which wakes me up as a symbolic prompt, to get out of bed and urinate (being a seventy year old male, this is par for the course). The other repeat pattern is finding myself at university or on the outskirts of one, which is because I am continually seeking knowledge and insight to the human condition or indeed anything. Like Einstein I have no special talents, I am just passionately curious. I did in fact live in Cambridge but never studied there or indeed at any university.

Another thing this book discloses is how previous knowledge is built upon and refined through experience, so that over time human awareness, human science progresses as more details about reality are discovered. In this way, the darkness of ignorance is pushed further away by the light of truth, highlighting the previous errors of thought, buried in history. He also mentions the tempo of impressions we all have for measuring time, citing HG Wells Time Machine: we live in the present but measure time as change, which Walter Pittman of Gettysburg College also points out 'What if all truth is just an experience of consciousness?'

In chapter thirteen, we hear how a young, enthusiastic surgeon wanted to ride to his rescue, trampling over him in his certainty. Instead through his own knowledge of surgical procedures and their outcomes, he was able to save himself from this well meaning interference. This lack of knowledge by the young man then could have killed him (see Dunning - Kruger effect and overconfidence): apparently the body collects poisons in cysts and by cutting into them, you release them back into the patient, killing them.

When the author is in a clownish, entertainer mode (dispersed mental state), he allows his terse observations to be dismissed by the opinions of others - in other words social popularity overrides personal awareness (experience) of the truth.

This is Eastern Europe, sounding like the eighteen seventies, not the nineteen thirties. The narrative is in some ways like the ramblings of a senile old man until you realise that this is the crumbling remains of the Austro-Hungarian empire, pre-world war two. It may remind you of a Pirandello play or Alice down the rabbit hole, in its confused interplay of ideas or the insane babblings of the Mad Hatter's tea party. More probably though the slightly sinister feel to the story, may remind you of some Kafkaesque nightmare as in The Trial, through its subtle paranoia sitting in the background but maybe that's the disease at work and not the society of the time.

This is our daughter Jessica's story and the narrative for many adults who require assistance with all daily living skills and have a severe intellectual disability.

Finding the Right Fit

It's bewildering how we lose the dedicated funding and energy invested in including individuals like Jess in public schools once they reach age 21. Typically, opportunities for Jess and her peers in adulthood confine them to self-contained classrooms, with most activities being exclusionary. Finding the right fit after an inclusive public school education is difficult.  

When our daughter, Jessica, was born in 1982, we didn't know she had a diagnosis. She was our teeny first baby. Jess came home from the hospital weighing less than five pounds, yet she was born near her due date. We called her Peanut at the time. We discovered, much later, that Jess had a rare chromosome deletion and was delayed in all her milestones. Our daughter, age 41, cannot care for herself, uses a wheelchair, is non-verbal, and has a severe intellectual disability. Jessica is also the brightest, most joyful star in the room. 

Early Education

 Jessica's early education encompassed numerous schools and classrooms. Federal Early Intervention for Infants and Toddlers was not enacted until 1986. It was still 1982, and we enrolled Jessica in a local infant stimulation program for babies with developmental delays. She transitioned to a special education classroom in a center for children with special needs at age three, and at age five, she went to a school district Board of Cooperative Education (BOCES) program. The program was over 30 minutes from our home, and Jess remained in that program, which moved from district to district until she was twelve.  

Meanwhile, I worked with our local education district, Committee on Special Education (CSE), to include Jessica in our neighborhood middle school. Like the line from the old TV show, "Cheers," we wanted everyone to know her name.   At Jessica's CSE meetings, we planned intensely for her return to the district and entry into middle school. The school prepared to welcome its first student in a wheelchair.

Success

One of the first times I knew this was a success was when I took Jessica to our local food market. Some of her peers were in the store, and instead of getting the "who is that in the wheelchair" glare, we received a warm greeting. The kids approached Jess, called her by name, and said she attends my school. This gesture brought tears to my eyes.  

High school was quickly approaching, and in our and the district's opinion, Jess needed another change as she prepared for graduation and adulthood. Full inclusion in high school would not have the same benefits as in the lower grades. We believed Jess would not get the same opportunities for friendship and socialization in a secondary school math or science classroom.   

Once again, Jess returned to BOCES, but this time, the setting was in our neighborhood school. Her teacher, Leslie (Les), set up a reverse inclusion program whereby interested high school students entered Jessica's classroom and assisted. Jess joined the chorus during high school and participated in other typical activities. She still hums the music scales learned in high school chorus over 20 years ago.

Prom Date!

Jessica's next transition was to an adult day program. At her adult program, we hoped that Jess would feel useful, have friends, laugh, hum familiar tunes, and continue to maintain the goals she achieved in high school and strive to reach new heights.   Adulting in Jessica's world is far different than in public schools. The regulations are less rigorous than in public schools, the staffing requirements are inconsistent, inclusion is non-existent, and the hope for daily experiences in the community has yet to come to fruition.  

WHAT WAS ALL THAT INCLUSION FOR  

Many of Jessica's peers, who have more life skills, are in supportive employment and other inclusive community adventures. Yet, individuals who require more daily assistance often get stuck in exclusionary settings.    Jessica's original adult day program started differently. They explored the community, took field trips, and left the building. We connected with many staff and developed relationships.

A lot changed after Covid, and Jess was out of the program for nearly three years. A few months ago, I visited Jessica in her current classroom, saw the lack of interaction and activity, and knew it was time for a change.

The system is broken. New staff often enthusiastically start their positions, hoping to make a difference in somebody's life. Yet, the red tape and restrictions usually knock them down. This profession requires a significant level of responsibility, yet the wages provided are not commensurate. 

Adult programs require a culture of creativity, respect, collaboration, and encouragement. Our daughter, Jessica, loves meeting new friends, cherishes music, and enjoys outings. A way to incorporate more community activities into a daily program should exist.  

Jess has been in the same day-habilitation program since graduation in 2003. After##@ 20 years, we have decided to transition to a new program.  

We HOPE for the future.#RareDisease #Parenting #Transition #SpecialEducators #SpecialNeeds #dayhab #dayprogram #Disability #IDD #Hope #FamilyAndFriends @amanda-buck @amanda-hvass @amanda-snyder @breecoffey @cherieehlert

Last month around my birthday I got a little excited/manic and reached out to a lot of friends. Had a plan for a birthday party, but it all fell through due to COVID and then taking time off from work for a partial hospitalization program.

Now I've got approx 30-40 messages/posts to reply to from friends and family.

They keep building up and at this point its overwhelming to reply to them all.

Does anyone else experience this? When feeling good I reach out to friends, then when something happens/falls through - I isolate and then don't reply, creating my own anxiety.

Anyone have any tips on how I could make a post to address this without revealing my mental health stuff?

I wish I could reply to each person, but it's too much.

So this post, something like "Thanks for all the messages, I've been out for health issues, etc, still want to chat". IDK how to phrase it well. #Bipolar1 #Mania #SocialAnxiety #Depression