CHAPTER 215 IMPRESSIONS OF MY LIFE: AUTOBIOGRAPHY OF A RECHERCHE POET. ALMOST A NORMAN YEAR 2018 - 2019

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 CHAPTER 215. ALMOST LIKE A NORMAN YEAR 2018-2019

 

It was 2018 and I was in the second half of my second year since my diagnosis and still not only alive, but still able to get up  and walk around.

Granted I had taken partial advice from those at the Jefferson Clinic and sometimes substituted a cane for the walking stick…sometimes. 

As the Holidays would down I was back at church on Sunday evenings giving my Bible Studies and my audience was steadily growing. We started a long study of Judges in 2018. 

We went out to a concert January 12. This was held at the Arden Gild Hall, which  is not more than a mile from where we live. In the past I would’ve  walked, but not anymore. We drove. Featured  was Leyla McCalla, a folk singer and celloist.  Her opening act was also a folk singer, Kipyn Martin. Both were very good.

That proved a banner year for the Philadelphia Eagles, despite a season injury to their franchise quarterback, Carson Wench. Injury seemed  what Carson did best. Out personal favorite was Nick Foles, the backup QB. Not only did he lead them into the playoffs. But

also to their first Super Bowl Win. It was marvelous as they 

beat Tom Bandy and the New England Patriots.

Due to my deteriorating fingers, my favorite cup slipped away from me and shattered on the kitchen floor. Lois had given me the cup many years prior and I kept it work. I felt very bad. 

I also felt bad because on March 14, 2018, Dr. Steven Hawking died. He was every sufferer of amyotrophic lateral sclerosis, the same nerve disease as I, except he got it at the age of 21 and suffered with it for 55 years. No one has figured out why he lived so long, although I have a theory.  Despite being on the rowing team at Oxford as a Coxman, athletics were not his main goal in life. He had purpose to his life, the study of physics. I think having this purpose is what kept him living. 

The day he passed was Valentine Day and Iron Faith had their  annual Valentine Dinner-Dance. (Left to right: Lois, Me, April and Henry Sachen, Pastor Christoper Mantai and his wife, and Kathy Young.

True, I couldn’t dance anymore, but I could still eat and talk. Some. ALS suffers lose the ability to eat, talk or swallow, and eventually breathe. I was fortunate in that it struck me in my limbs. I could still walk, if oddly, use my arms and swallow. 

Jefferson kept pushing me to get  a feeding tube
installed, but no thanks.   I’ll do without that invasive devise just as long as I can. 

My godson Jasper went into Little League that Spring. It was the instruction league and he had a lot to learn, such as which direction to  run if you got a hit. 

 

The ALS Association did one of their special outings for we who have this disease. It was free for patiences and up tofu other family members.  The outing they gave in may was to Longwood Gardens. This is a large area devoted to garden and exotic plants. They also have fountains and give what is called Dancing Water Ballets, in  which the fountains spout oft music was colorful sprays of water. In this case we ALS victim and families were served a large picnic lunch with a pavilion and then were free all day to explore the  grounds and buildings. 

Lois and Laurel joined me on this outing.  We met a lot of our fellow suffers at the luncheon, some of whom were wheelchair road and some who could not speak  

After eating

we took a leisurely tour of the place, which is very beautiful., even down a hallway of rest rooms. Another interesting aspect  was the collection of organs. 

I was on one of my still continuing walks at Bellvue Park when I was stopped on the exit drive by a large snapping  turtle. It squatted right on the yellow line.  I didn’t want anyone to hit so I sat next to it wondering what to do. I sure wasn’t going to attempt picking it up, but finally it slowly waddle off and down an embankment to a  stream.

In June. I volunteered to help Grandpa Bubbles puy on his show at the Kids Museum on the Wilmington Water Park.   

Grandpa Bubbles plows these giant  bubbles and lets the kids try their ability. 

There was a great crowd who attended the show, and I did all I could do, but with my ALS I quickly became tired.  I was exhausted.

Then I think my church held a BBQ at the church. A lot of good eats, but something else that  quickly wore me out.

Actually, everything any more  wears me out.  Good thing they had shady places to sit.

 

Let me introduce you to Norman. This is the Pot-Bellied Pig that spends the summer in a pen outside of Marini’s Produce not far from my home. The pig even has it’s own website. Marini’s has  some of the best fresh produce in North Wilmington. I missed going their this year and getting sweet corn, watermelons and grapes. 

Something else Lois and I began attending regularly in 2018 were the lunchtime concerns at the Art Center in  Bellevue. They have big concerns in the music shell evenings in the park, but we enjoyed the smaller affairs at tables behind th Art Center. It always feature local talent and was free. You would bring a lunch and get entertained while you ate. 

Rockwood always held a Shakespear Festival behind the

Mansion ever August. This was the stage they build for 1918’s production of “two Gentlemen from Verona.”

 

This was another of the concerts at the Art Center. The photo on the right is one of my Sunday Night Bible Studies. Boy, do I miss doing them. 

We took a Claymont Senior tour by bus to  The People’s Place in Lancaster County. I believe we took a could of these. 

We bought a good bit of freshly made  fudge as well. 

We also took a nice country tour through the farms via a horse drawn wagon.

I also discovered some very erotic clips from one of the early  Tarzen pictures starring Johnny Weissmuller. These were from “The Ape Man”, I believe and made before the Hayes Cody took affect. That is Maurean O’Sullivan wearing very little beyond her loincloth.

 

I developed a relationship with a. Small family of deer

lining in the back meadows of Bellevue. There was a Buck a Doe and three little deer.  The little  ones must be fully grown by now. I never get to see them anymore. 

I assume they are all doing fine.

Lois and I took anoher trip with he  Claymont senior center. This time it was to the beach in Ocean City Maryland.  It was a bright, nice day, except it was very, very hot. After a couple hours we were sweltering, especially Lois, who seemed on the edge f heat stroke. There was just no shade. After a while we sat on a

bench and I went looking for water for  her to drink. I finally found a stand selling bottled water and go us bottle. This may seem all well and good, except we couldn’t get the cap off. I can no longer open bottles with my ALS. I stood out in the middle of the boardwalk and stop this black couple and asked the guy to open our water. He kindly did. He was probably thinking “crazy white people. 

  We were beginning to run it close to catching our bus, and in fact, we were late getting back to it. But they waited  for us and we were embarrassed.

We made it home. Noelle went to the Chevy dealer and

purchased a new ar, a Chevy Spark. Her sister bough a new one earlier, except Laurel’s was black and Noelles was blue. They are nice little cars. 

I had reached a point where dressing myself too awhile.  Sox were bad. Could not reach over enough to grasp the  tops, even sting down.

Once I did, I had to work
them over my toes. Once I got the on my feet  I had to pull them up fully, but this left me with the challenge of getting py pants or short on.

Frankly I gave. Up on long pants as too challenging, but shorts were no easy task  either.  I would begin by laying he shorts spread out on the floor at my feet.  

I then would step into the openings  until both feet were inside

After getting my feet inside the leg openings, I wold stand

and pull them up my legs into place. We are  talking at least 15 minutes to accomplish these two everyday tasks. 

Shirts and tops were actually still east to do.

I also bought a Lift Chair, which made it Easter for me to stand up. I soon
was spending most of my time in this  chair.

I was back for more push-pull at the Neurological Clink at Thomas Jefferson Hospital.  On the right is Brittany, the Pulmanary Specialist. 

 

You know, the suck-suck, blow- blow cheerleader.

It was about this time I signed over my body for research to Jefferson after I died. I’ll have no use for it anymore, so why now. I am also a registered organ donor.  Only trouble with doing this is they take a blood sample every time I go to Clinic now and I hate needles.

Back in Bellevue for a walk I discovere

d myself there for a meet of  those at the Mary Campbell Center. This a home to a number of people with serious disease, like my friend April who lived there. She suffered from a birth defect and has been wheelchair bound her whole life. This also effects her speech, so it is difficult to understand her speech. She is a member at my church. We speak with  each other every Sunday. (right: A concert at the Mary Campbell Center.)

On this occasion April was competing in the wheelchair speed races. They have special racing  wheelchairs for the contestants. These are very sporty. They still need a pusher, but they go pretty fast. You can see by April’s face she thoroughly enjoyed it. (She is the racer inside toward the barn.) 

They race trough the paths of the park from the start gate and back  to as it doubles as the finish line. Here was the start
of the race

This picture was taken of us at the ALS Day at Longwood  Gardens.n  he man on the left has in a more progressive state than myself. That is his wife with him. To the right you have me, Lois and Laurel.

Jasper started Kindergarten that fall. They took his on the
first day.

I got a team of aids from Bayata  that fall. Here they are:

Katie Capenter, an Occupational Therapist. Her job is not to teach you an occupation, but to do the necessary things of everyday life. 

Cheryl was also an occupational therapist. She kind of ran the team.

 

Here is Lirsha 

Gibbons, very important to me because she came in every week to bathe me. I had reached a point I couldn’t do this  myself and so she would scrub me down.  She was very nice and you need someone nice for this level of familiarity since you are sitting there in your birthday suit and
very exposed. I had a shower chair at that time, which I would sit on so she could bathe me. 

I could get in and out of the tub on my own, but I couldn’t actually wash myself. I didn’t feel embarrassed undressing for this

young woman, I was way pass that sort of shyness, but I was overly aware of the weight I had gained on the Dietician’s died of high chorally cakes and candy.  I’d get over that as well since the doctor’s wanted me fat. 

Yes, Virginia, I also had a Speech Pathologist. Now with ALS talking and swallowing are a concern, but Anna Johnson was mostly concern with the  cogent abilities. I enjoyed working with the Speech Therapists.

Ryan Nuciforma was the Physical Therapist. He worked on strength and balance. He also took me  outside for walks, which I really looked forward to even if his exercises wore me out. He was the only male on the team.

Michell Ostafy was the Social Worker.  I don’t think I

would have ever gotten Medicaid without her help. I was ready to give up several times, but she pushed me to keep going.  It is shameful what the government puts is old geezers through. 

When this crew was finished with me I got a regular aide who came twice a week. Unfortunately I never got her picture. She was very good and I had her for more than a year. But she developed an Allergy to cats and since we had 7 cats at the time, she had to resign.

And soon it was 2020.