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.