Poem: The Book Called “Me”

Endless streaks of time (or so it seems)
lie ahead of me,
as I turn page after page
in this book called “Me”

Until one day (possibly still far from now)
I will have reached
the page I pray concludes
with a happily ever-after

In six days, I will turn 36. I am hopeful that I am still not halfway through my life yet, but then again I recently learned that the life expectancy for someone born in 1960 was 52. I just Googled the life expectancy for my birth year, 1986, which was 74.8 years. If this is true, I am just under eighteen months shy of midlife. I am not the healthiest either, so to be fully honest, I probably can’t expect to live that long.

I didn’t want this poem to be fully about doom and gloom either, because, as a Christian, I do believe in eternal life for those who are saved. This is why I ended this poem on a positive note.

I am writing this poem for this week’s Twiglet, which is “turning page”, as well as the Go Dog Go Cafe Tuesday Writing Challenge, which is to start a poem with the word “endless”.

#WeekendCoffeeShare (April 10, 2022)

Hi everyone! I’m joining #WeekendCoffeeShare today. I just had a soft drink and a glass of water, but if you’d like a cup of coffee or tea, I’m pretty sure my staff can make you one too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that a fellow client passed away on Wednesday. He had had COVID back in February, like most of us, but he didn’t fully recover. This client had been hospitalized several times during December and January because of seizures, but these finally seemed to be well under control. Unfortunately, COVID was the last straw. He had been on a feeding pump ever since he’d had COVID, but because he became increasingly uncomfortable and unresponsive, the doctor and staff decided to discontinue his feedings on Monday. I last saw him alive Monday evening. He actually lifted up his body, smiled and squealed with delight upon hearing my voice. I made the conscious decision, having already been informed that he’d be dying soon, to keep this memory as my last memory of him while alive.

If we were having coffee, I’d share that I finally managed to craft another butterfly with the silicone mold I’d gotten for Christmas last December. I badly wanted to create a butterfly to go with the fellow client’s coffin, but wasn’t sure whether I could use the mold. However, other tutorials seemed even more complicated, so I eventually decided to give it a try. I did the wings in Fimo Effect color blue ice quartz. The body is pacific blue and the antennae are black.

If we were having coffee, I would also tell you that I have finally given in to the polymer clay color mixing thing and bought a precision kitchen scale. That plus a collection of 60 Fimo soft color recipes. Of course, I haven’t tried Fimo professional yet, but if I have to believe my staff, the colors I’ve mixed so far turn out gorgeous despite not being done with the true primary colors.

If we were having coffee, I’d tell you about the nationwide cerebral palsy day I went to yesterday. Of course, because the ParaTransit taxi had arrived at 8AM and we didn’t have to pick up any other passengers along the way, I was in Apeldoorn, where the day would be held, by 9AM. Thankfully, I had called my mother-in-law when I entered the taxi and she’d made sure to be there on time too.

The day started with a live-streamed lecture by Erik Scherder, a neuroscientist from Amsterdam. The message was quite similar to the one he’d conveyed in 2018 when I’d attended the cerebral palsy day too: that exerting yourself physically is needed to stimulate your overall neurological wellbeing. In 2018, the lecture had mostly been geared towards (young) adults, while yesterday it was more focused on children and their parents.

I attended two workshops during the day. One was on aging with cerebral palsy, mostly geared towards those age 40+, so I was a little outside of the scope, but I could relate (sad as it may be) to some of the increasing discomfort that older adults with CP face. The other was a yoga class.

As regular readers of my blog might know, I am not 100% sure I even have cerebral palsy, in that my parents never told me and, by the time I was an adult, things got so overshadowed with other diagnoses it’s unclear. For this reason, I felt validated knowing that I appeared not to be the most mildly affected person, strange as this may seem. In fact, during the yoga class, we had to loosen up our muscles and my mother-in-law told me to loosen up. Someone else half-joked: “That’s about the hardest thing to tell a spastic.” That made me feel good.

How have you been?

Poem: The Monster

Sometimes
It screams
Loudly
Telling me
To give up once and for all

Other times
It whispers
Softly
Luring me
To take that final step

Sometimes
It seems silent
Just for a little while
But it always returns
The monster
Wanting me to die


This poem was written for Friday Writings #14, for which the optional prompt this week is to write about monsters. I am also joining dVerse’s Open Link. I’ve shared poetry about my depression and recurring suicidal ideation in both linkies before. I often refer to this state as “the monster”, so this theme came to mind when I read the Friday Writings prompt.

Final Goodbyes

Yesterday, the fellow client who passed away was temporarily moved from the morgue into her room in the care home. I went to have a quick look yesterday evening. This morning, since I had finished my polymer clay butterfly and flower, I went back into her room and set them at her remembrance table next to her coffin. My assigned home staff was with me and asked me whether I wanted to touch her coffin, the things she had with her and even her hand. I did. Her hand was cold, which was the final reminder I needed that she’s really dead.

This afternoon, we went back into her room to pick a rose from her remembrance bouquet. We then went outside and stood in a circle with all other clients and staff who were close to this client and the family. Everyone laid a rose on the coffin. The client’s brother and our support coordinator spoke a few words and then the coffin was put into the funeral car and driven away. My assigned staff cried a few tears. I did feel sad too, but I couldn’t cry.

This is the first time I’ve ever been this close to a deceased person. I mean literally, as in touching her hand. When my maternal grandfather had died in 1995, I did pay him a quick visit at the funeral center, but was only able to have a quick look and with how little vision I had back then, I probably could hardly make out what he looked like. With my other grandparents, I didn’t ever get to see them while in their coffins. I had originally thought I wouldn’t benefit from visiting this client in her room because I couldn’t see her, but I actually did benefit. I was able to say my final goodbyes. Now I know she’s really gone.

Written for E.M.’s Random Word Prompt #7: “Remembrance”.

A Few Really Intense Days

Last Thursday was a weird day. I had to have my mammogram at 11:45AM at the hospital in the nearest city, which is half an hour’s drive away. We arrived about fifteen minutes early, which was good, since I still needed to get an ID label. Normally, the hospital give you an ID card with your first visit, but the receptionist said I should already have one since my ID was in their system. It probably was from when I had my abdominal X-ray at the outpatient clinic here in town, where apparently they don’t do ID cards. Oh well, he printed off a label and sent me on my way.

The mammogram people were running a bit late, so I got a little stressed. As it turned out, the person doing my mammogram was also a guy, which made me feel slightly uncomfortable. I tried to reassure myself that it’s his job. The mammogram was painful but thankfully it was over with quickly and I knew that it being painful said nothing about possible results.

In the evening, a male I initially didn’t recognize was in the care home. As it turned out, he was our GP. I was already distresssed from my schedule going to pieces due to the mammogram. It was getting even worse, because it turned out a fellow client had to go to the hospital. She had Down Syndrome with severe heart complications and the doctor suspected her heart was acting up again.

Later, it turned out she had RSV, a type of pneumonia that normally only affects babies and small children. She was tested for COVID too but was negative. As she was moved from cardiac care to the lung unit, she seemed to improve over Friday and Saturday, but wouldn’t be discharged until Monday as there are no doctors to do that over the weekend.

Thursday night, I myself started experiencing nausea and bad stomach pain and could hardly sleep. I vomited a few times in the morning, then was exhausted and lay in bed most of the late morning and early afternoon Friday. Thankfully, by Saturday, most of my symptoms were gone.

Then on Sunday morning, I got the news that the fellow client who’d gone into hospital Thursday evening, had passed away after all. My first thought was: “This won’t affect staffing, will it?” I quickly silenced those thoughts, knowing they are selfish. When the manager came by to support the staff, she did pay a quick visit to my room though and I asked her whether the vacant room would be filled quickly now. She reassured me that the staff and clients will have time to process this loss first.

I have been busy all of yesterday evening and today thinking about how to make something for the client out of polymer clay to go with her to the funeral. Yesterday, I initially made a butterfly using a mold, but I did it all wrong and it turned out rather rubbish. Then I decided to create a multicolor flower. However, one of the staff who knows the family’s wishes about the funeral etc., told me a butterfly would be especially fitting. So I stressed all day about how to make a butterfly using my rather inflexible mold. I might’ve found a way. My nurse practitioner, with whom I had an appointment this morning, did reassure me that I am well-intentioned regardless and that’s what matters.

This afternoon, I got the results of the mammogram. Thankfully, there are no abnormalities! At least that’s something to be happy about.

How Will I Be Remembered?

Last week, my husband’s grandma died. The burial was on Thursday. It was okay. It however did get me thinking about how I will be rememberd and how I wish I would be remembered when I pass.

If my father’s still alive when I die, he may want to speak at my funeral. Not sure though, as he hardly speaks to me now. Then again, I guess speaking about someone is different from speaking to them. He may recall our positive experiences playing and learning together in my childhood. I will definitely remember those if I am to speak at his funeral.

He would probably have the decency not to go into my disappointing him with my adult life choices. I mean, I know I majorly disappoint him by being in long-term care, but he doesn’t voice it even now that I’m still alive. He isn’t one to talk negatively about the deceased though, I’d think. I can’t remember whether he spoke at my paternal grandpa’s funeral though and he didn’t at my grandma’s.

My mother would most likely be too self-conscious and too emotional to speak. I mean, she cried when I got married even without having to speak during the ceremony and she didn’t hold it together when speaking at my sister’s wedding. As for funerals, she spoke at my maternal grandfather’s funeral but then came running towards me for comfort. I was eight-years-old.

My sister may want to speak, if for no other reason then to fill a void. She did at my wedding (which was lovely, mind you). She spoke at my grandma’s funeral and it was amazing. I loved her sense of humor.

Ever since hearing the song, I’ve said I wanted I’m a Survivor by Reba McEntire playing at my funeral. I do. Even though it wasn’t written about an actual preemie and most of the facts about this hypothetical woman’s life don’t apply to me, the sentiment does. At least, that’s what I hope. I guess people could take its meaning two ways: either I’m the survivor who’s now an inspiration or the former preemie who wasn’t given a chance but somehow lived anyway. There’s a difference. I’m not sure how to convey it though. What I mean is, the focus can be on the negative of my not been given a chance or on the positive of my having given meaning to my life.

My husband wouldn’t want to dig up the past, I guess. He didn’t like this with his grandma’s funeral either, but then again neither did the deceased. She was a very upbeat type of person who didn’t like talking about negative aspects of the past. I guess I wouldn’t be as offended by people speaking a lot about the past when remembering me. Then again, I’d love it if my husband remembered the positives of what will hopefully still be a long life together.

Share Your World (April 22, 2019)

For the first time in a long while, I’m once again participating in Share Your World. Today’s questions are very interesting.

I tried to write this post on my Mac, as I cannot copy the questions on my iPhone. I finally however decided to continue on my phone, as the WordPress editor is hard to use on the computer.

1. Was the last thing you read digital or print?
Digital. I am blind, so cannot read standard print. I rarely read Braille either, although I recently received a Braille letter.
2. Are you more an extrovert or introvert?
Introvert for sure. I definitely am not energized by a lot of interaction. I also prefer a few deep friendships to having a lot of acquaintances. That being said, online I can be more of an extravert.
3. How is your life different from what you imagined as a younger person?
Very. I am not sure there’s any resemblance, in fact. As a teen, I imagined being some type of university professor when I’d grow up. I for sure didn’t imagine doing day activities at a center for people with intellectual disabilities. I also didn’t imagine having a husband. The only thing I did imagine at the time was being a writer. I didn’t know about blogs at the time, but did know about online diaries. My online diary gradually morphed into my first blog.
4. Do you think about dying? Does death scare you?  Why or why not?

Yes, of course I think about it sometimes. I saw a man shortly before his death last January at day activities (a fellow client) and this did make me acutely aware of the finiteness of life. Death doesn’t really scare me, although sometimes it does.

Additional Gratitude Bonus Question:  Who has been the kindest to you in your life?

My husband. He loves me despite the fact that I can be quite blunt and a pain in the arse to be around.

Loss #WotW

This was truly a mixed week. I wanted to write a gratitude list for it, and maybe I will do so tonight, but right now I don’t feel like it.

On Monday, I attended day activities as usual. A fellow client, an older man, attended too as usual, but he was very unwell. He had been ill for a long time and the staff had feared for his life on a few prior occasions. I attended day activities during the morning only and I worried in the afternoon that he’d die soon.

On Tuesday, the man wasn’t at day activities. I heard the staff talk about his group home staff having had a scare in the morning, but he was still alive. In the afternoon, I heard them talking about palliative care. By late afternoon, when us clients werre ready to leave, I heard that he’d passed. For those who don’t know, my day activities group is for people with severe intellectual disabilities, so i’m the only one who understands the conversations staff have among themselves basically.

On Wednesday, the other clients were told that this man had died. Most still don’t fully understand, but some have made beautiful drawings in his memory that will be given to his family on Monday. Near the center’s front door is a table with (electric) candles, a picture of the man and all the drawings. I decided to make a butterfly soap for it. I made it on Wednesday afternoon with my support coordinator. It turned out great, a beautiful lavender blue with lavender fragrance oil.

On Thursday, I was off from day activities and I spent the morning in bed. It didn’t really feel good, but I had nothing planned for the day except for horseback riding at 4:30PM. That was a great experience. I rode Aagje, a fjord horse with long hair (which is unusual for this breed).

Today, I showed my day activities staff the butterfly soap I’d made and placed it on the client’s remembrance table. We tried to do day activities as usual as much as possible. We walked to the marketplace in the morning. In the afternoon, when I went for a short walk with the day activities coordinator, I told her I wanted to ask a rude question. I wanted to ask whether, now that this other client had died, I could take his place at day activities on Thursdays. I still feel pretty awkward having asked this, but she understood that, if I waited a while, they might’ve gotten a new application. I E-mailed my support coordinator on this issue too.

Early this week, I got an E-mail from my support coordinator forwarding the termination letter from the Center for Consultation and Expertise. I didn’t understand this, as the consultant had offered to be my contact for the long-term care funding agency. Apparently, she still is somehow. I really hope I hear from that agency soon. My support coordinator did E-mail the local authority’s social consultant, who is in charge of my community care funding, to extend my funding for two months as we wait for long-term care to kick in.

Right now I feel… numb? I was a bit dissociated this afternoon, as my day activities staff were discusing clients’ severe challenging behaviors (not current fellow clients of mine). I remembered my time on the locked psychiatric unit, where I was often threatened with seclusion for problem behaviors and was in fact secluded or restrained a few times. It felt good disclosing this to my staff, but I did feel a bit awkward.

Now I’m waiting for my husband to get home from work. He’s going to bring French fries and snacks. I look forward to that.

I am linking up with Word of the Week. I choose “loss” as my word of the week in my fellow client’s memory.