Some Might Say: Judgments About Me #Blogtober20

Okay, I said I wasn’t going to take part in the #Blogtober20 prompts anymore, but this one did speak to me. Today’s prompt is “Some Might Say”. People can be incredibly judgmental. Today, I will write about some things people have said about me that indicate they are clueless or insensitive or both.

The first things people notice about me, are my blindness and the fact that I’m relatively well-spoken. This often leads people to assume that I either should be able to be independent or that I am obviously not because I’m blind.

My parents and other people who are relatively educated about blindness, often assume that I should be able to live independently and be employed. Even if they are fine with my “choice” of not pursuing a career, their idea of me is to live independently. Some people who don’t know me that well, ask whether my husband and I have or want kids. To me, it’s obvious that we don’t, but then again that may be internalized ableism. After all, I for one am not able to take care of kids, and besides I value my freedom. Others with my disabilities may definitely be able and willing to parent.

Another judgment I often get is that my marriage isn’t strong because we don’t live together. My last psychologist at the mental hospital even dared to say my marriage isn’t worth anything if I don’t intend on living with my husband. Well, when we got married in 2011, we had zero intention of living together. I was on the waiting list for a permanent workhome for autistic people. It is only because that didn’t work out, that my husband asked me whether I wanted to live with him. And just so you know, our reason for getting married is that we love each other and want to show each other that this is for life. And in my opinion, that’s the essence of marriage. Okay, I know that at least a third of marriages end in divorce, but I hope that if couples get married, they at least hope this is going to be for life.

Like I said, some people, particularly strangers who are clueless about disabilities, think that it’s perfectly understandable that as a blind person I live in a care facility. This misconception often feels as uncomfortable to me as the idea that I am or should be independent. I used to want to educate people that most people who are just blind, can live independently. I no longer do this though. Not only is it none of random strangers’ business that I’m not just blind, and isn’t it my obligation to educate, but I might also be adding to the stigma I fought so hard against as a teen.

By this I mean the National Federation of the Blind’s philosophy that blindness shouldn’t hold you back. It in fact used to say that the average blind person is just as capable as the average sighted person. That led to the idea that, unless you had severe or multiple other disabilities, you were to be pushed to achieve whether you could or wanted to or not. That just doesn’t work for me and it doesn’t work for many blind people.

#Blogtober20

The One I Love: My Husband #Blogtober20

Welcome to day two in #Blogtober20. I realize that when I wrote about myself yesterday, I never mentioned the fact that I’m married. Thankfully, the second prompt in the series is “The One I Love”, so now is my opportunity to talk all about my husband, Jeroen. I usually don’t refer to him by his name, but right now it’d be confusing to refer to him as my boyfriend, now husband or whatever constantly.

I met Jeroen on an Internet forum in 2007. Neither of us were looking for a relationship. I wrote on the forum that I was bored and lonely living on my own in student accommodation in the city of Nijmegen, Netherlands. He went to school in Nijmegen at the time. He was also looking to expand his social circle, so he PM’d me asking if we could drink a cup of coffee or tea in Nijmegen somewhere. We met at the bus stop near the university’s dentistry department, because that was the only bus stop near the uni that my bus would stop by. We went for a coffee or tea at the uni’s cafe. I was so nervous that I tumbled off a step and dropped my coffee.

Thankfully though, Jeroen didn’t mind. Though he had been nervous too and had mixed feelings about our first time meeting, he did want to meet again. I invited him to my student apartment, just because I had no clue where else to meet. That could’ve been really stupid, but thankfully it turned out well.

Six weeks after first meeting Jeroen, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have Jeroen’s phone number, so asked my staff to log onto the forum and send him a message. The staff didn’t include my phone number, because I hadn’t requested it.

Several weeks later, my father called to ask whether he could give my number to Jeroen. It turned out that Jeroen had found my father’s E-mail address by googling the whois info for his website. I am so grateful my father didn’t have privacy protection on, as I do with my websites.

It certainly wasn’t love at first sight (oh, that sounds stupid for a blind person) for me. On the contrary, when Jeroen told me he was in love with me, I let him wait four months before reciprocating it. Similarly, when he proposed to me in June of 2010, I replied: “So do you think that’d be cool then?” He did really want to marry me and we had our wedding date on September 19, 2011, exactly four years after we’d first met.

Jeroen and I don’t live together. Like I said, he fell in love with me while I was hospitalized. This hospitalization lasted 9 1/2 years, after which I was kicked out to live with Jeroen. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

Jeroen is 31-years-old (32 next month). He sometimes jokes about my having married a younger man, as I am 34. I am glad he isn’t significantly younger than me though, as, when I was hospitalized on the locked unit, I wasn’t to leave the ward unless with someone 18 or over. We loved going to the hospital cafeteria to have tea or hot cocoa. We also loved playing cards.

Jeroen and I have the same sense of humor. We love wordplay and have our own phrases and terms for communicating certain things. For example, when we get bored of each other, we say “banana spider”. He is also really inventive with new nicknames for me. I, not so much.

I really love Jeroen and want to be married for the rest of our life. Not living together has its ups and downs. Particularly in these times of corona, we’ve had to be separated more than we’d like to. Thankfully, our love has survived.

#Blogtober20

Pandemic Positives

Today, Fandango asks in his weekly provocative question wehther the need to quarantine as a result of COVID-19 has made you a better person.

Lockdown here started in the middle of March with restaurants acutely closing their doors, school closures and, a week later, a no-visitors policy in nursing homes and care facilities. I couldn’t see my husband for nearly three months. Then we could see each other, but we had to keep our distance as much as possible.

Life more or less returned to some sembleance of normal at the end of June. Still, people are scared. I, not so much, though I do take COVID-19 seriously. There are still certain restrictions, most of which don’t affect me too much.

The main thing affecting me was not being able to see my husband. This certainly made me appreciate our very special relationship even more than I appreciated it already. I mean, I chose to go into long-term care last year, of course not knowing that this would mean not seeing my husband for a few months. However, I doubt most marriages would survive even that decision, let alone the consequences. I attribute the success of our marriage mostly to my husband’s everlasting love, but I do deserve some credit for it too.

In general, too, the pandemic has made me more appreciative of what I do have. I am physically healthy and so are my loved ones. In April, a man at the home below me died of coronavirus. Though he was in his 70s, this shocked me a little. My father is in his 70s too, so I’m all the more grateful to still have him.

Other than gratitude, I think the pandemic taught me some level of creativity. Before the lockdown, I found it hard to connect to my husband when I didn’t see him. Now we call each other multiple times a week and text multiple times a day. Of course, I could’ve done that before too, but out of need grew the solution.

I also read somewhere that some people are particularly happier now than they were before the pandemic. I have to say so am I. The reasons may not be related to the pandemic at all, as I’ve also finally settled into the care facility and such.

In general though, I think the pandemic has had and continues to have negative effects on the world, of course. However, if it affected me personally at all, it’s positively. By this I don’t mean my economic, social or health status, of course. Though I’m still financially secure and healthy, no-one knows whether this will remain this way given the huge economic costs of the pandemic. I’ve just become a more positive (or should I say less negative?) person.

Decisions

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.

Choosing Love #SoCS

Choosing love is important. Choosing that one person you would want to be with. Or choosing more than one if that’s your thing. Many lovers value their partner above themself. I’m not sure I do and that often makes me feel bad about myself.

I mean, I always say that Jeroen is the most cherished, best, loveliest person in the world. Then he replies that it’s me. Sometimes we go on to joke that it’s our cat Barry.

Yet, whenever I say I love Jeroen more than myself, I think: “So why did I choose to go into the care facility?”

I was fully expecting my husband to say the same when he visited me for the first time in over two months, since visiting had been prohibited until now due to coronavirus lockdown. I fully expected him to come and tell me he didn’t want to be my husband anymore. And yet he didn’t! I’m so happy that, even though I chose my own happiness over his, he chose love!

Written for this week’s Stream of Consciousness or #SoCS, for which the prompt today is “ch”. Also writing this using the new block editor.

How COVID-19 Changed My Outlook on 2020

Yes, I’ve said it before, but can you believe it’s May already? Four months have passed since the beginning of 2020. Time flies when you’re having fun, they say. Well, time also flies (and drags at the same time) when in a pandemic. Today I’m joining in with Finish the Sentence Friday (which is open all week), for which the question this week is how the pandemic changed your word of the year.

In January, I chose the word Wellbeing as my word of the year for 2020. I was at the time already a bit angsty about it, as I was in a bit of a hypochondriac phase and thought that if I chose this word, I’d die this year or something. Some kind of reverse law of attraction.

Still, so far, my word is still pretty true. I am taking preventative measures to hopefully keep the coronavirus out of my body. Just yesterday, my staff started taking everyone’s temp twice daily with a no-contact thermometer. Since the virus hit the home below mine, I have been a little more scared. At the same time, I still often avoid thinking about the pandemic too much. Actually, I realize that, as the month of April continued, I included fewer and fewer references to the pandemic in my posts.

I had a few hopes for 2020 too. The first one was to keep my marriage strong. I felt I needed to learn to travel to my husband for this, as I thought ultimately living apart wouldn’t be very good for our marriage otherwise. While I still feel I need to learn to travel to him independently once the crisis is over, I have learned that our marriage can survive a time of not seeing each other. It’s hard, but it’s doable.

Honestly, I must say the pandemic has given me a clearer focus on what matters most. I try to appreciate my husband more. After all, he isn’t a given. One day one of us might catch the virus. Besides, we can’t see each other now and it isn’t altogether logical that a marriage survives this.

On my other goals, I did pretty well so far. I’m actually loving it. I don’t know whether the crisis is the reason I’m doing so well, but I’m pretty sure it’s one of the factors.

Dear Diary: 2021

A ton of ideas are floating through my mind for topics I want to write about. However, I’m tempted to just do another #WDIIA post. I also realize I signed up for the #AtoZChallenge and haven’t even started drafting my posts for it yet. Ugh, that’s me being a blogger. Instead of drafting a post in advance though, I’m participating in Mindlovemisery’s Menagerie’s Sunday Writing Prompt for yesterday, for which the theme is Dear Diary. And no, this isn’t going to be a boring description of today. I hope it will be a diary entry I can write someday in 2021, when like I predicted last year, everything will be okay. Here goes.

Dear diary,

I just took a look at some old blog posts from last year. Today is September 30, 2021. My sister and brother-in-law have their fifth wedding anniversary today. Hubby and I just had our tenth on the 19th. It was wonderful! We celebrated by going out at my not-so-newly favorite restaurant, where both of us ordered unlimited piri-piri chicken. It was delicious! My husband had the following week off, so I decided to stay with him for the week. Since traveling still was discouraged last year, but isn’t this year, we took some time to vacation at a nice resort. I spent most of the time in the swimming pool. Boy, have I missed swimming!

I’ve also missed going out to dinner. Oh and ordering pizza. Though during most of the COVID-19 crisis, Domino’s still delivered pizzas, there was no-one to eat them with, since my husband couldn’t visit.

Oh, I’m so happy my husband didn’t leave me over that whole COVID-19 thing. I mean, it took several months before the no-visitors rule was lifted at my care facility. I was worried all of this time that hubby would want to have a real wife who could be with him. Apparently not. He wants me.

I’m so glad the worry is a lot less than it was last year. I’ve been working on my self-worth in therapy and getting EMDR for my childhood trauma. Thankfully, mental health resumed regular face-to-face sessions in June last year. By now, I feel better than I’ve ever before.

In 2019, I wrote on my blog that, by 2021, everything would be okay. I could not have predicted a pandemic making life much harder first. Thankfully, my husband and I survived and it’s made us and our relationship stronger.

My Hopes for 2020

Hi everyone and a happy new year to you all! I’m wishing all my readers the best for 2020. May this year be filled with health and happiness.

Like last year, I don’t really do new year’s resolutions. That is, I’m calling them “hopes” as to have them give me less pressure. This may be a stupid mind trick, so that if I fail at all of them at the end of the year I can just say I wasn’t really meaning to stick to them. Well, anyway, here goes.

1. I hope to find a way to keep my marriage as strong as it’s now whilst I’m living in the care facility. This mainly means I need to find a way to keep seeing my husband despite the fact that I won’t have the ParaTransit to travel one way even once every other week. I really need to find a way to learn to travel by public transportation. The thought of which overwhelms me. Then again, the consequences of not making this work, are far, far worse. I have very conflicting feelings about this whole situation, which I won’t be sharing here.

2. I hope to settle in at the care facility, both the home and the day center, and find a routine that keeps me happy.

3. I hope to keep going for a healthier lifestyle. I first hope to be more mindful of my food choices. I mean, I did okay’ish over the holidays, eating far less than I would have had I not had it in mind that I ultimately need to lose all the pounds I put on. However, I still ate more than I should have.

I hope to stick to my habit of drinking two liters of fluid each day. I have occasionally lost track when at my husband’s, but did welll over the past month otherwise.

I really want to get into an exercise routine. I have a gym in mind that I may want to join in February (because everyone else joins the gym in January).

4. I hope to stick to a regular writing and blogging schedule. I won’t push myself to blog everyday or the like. I mean, I could be joining in with #JusJoJan again and I know the rules aren’t strict so this post counts too, but I think I’d rather jump in when a prompt speaks to me. I aim for a minimum of two posts a week, unless illness or technical problems get in the way.

Dreaming bigger, I hope to write another essay that could be published in an anthology in 2020. I mean, I’m still excited about the one piece I had published in 2015, but there must be more in store for me.

5. I hope to read more. The year is off to a good start, as I finished a book (okay, one I’d started reading in 2019) today. I really want toventure out into the book blogosphere, even though I have zero intention of becoming a real book blogger.

6. I hope I can get into a better self-care routine. This is really an excuse for me to explore more of mindfulness, essential oils, relaxation, etc. I often think that I need to be productive all day. Then recently I listened to a Podcast in which the presenters explained the importance of daydreaming. They linked a lack of it to dementia, which has me scared like crap, because whenever I’m not doing anything in particular, I tend to fall asleep. They didn’t say whether you can train yourself to daydream or whether this helps, but it can’t be bad.

What do you hope to achieve in 2020?

Dream #SoCS

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.

💞 Happy Eighth Wedding Anniversary to My Husband and Me 💞

Today is September 19. Eight years ago today, my husband and I said our wedding vows. Twelve years ago today we first met at the bus stop nearest to the university that I could get to without transferring. That first meeting was awkward. I didn’t have good mobility skills, but of course it wouldn’t have been appropriate for me to use this boy I barely knew online as a sighted guide. As a result, I fell off a few steps and dropped my coffee.

My now husband said later that, after this first meeting, he wasn’t sure whether to ask to meet me again, but intuition told him that if he did, a lot more would follow. And it did.

Today, my husband had to work a long day as a truck driver. He originally had this week off, but changed that so that he could help me move to the care facility on Monday and make the move to our new house. He told me in advance not to be mad if he’d not be home by seven. As it turned out, he was home a little before eight. He also got tomorrow off unexpectedly, so our not being able to celebrate our wedding anniversary today is more than made up for soon.

Someone said in a comment on my previous post that my husband is lucky to have me, because at least I consider choosing him above self-care. I must say, I don’t see it that way, but I definitely feel I am lucky to have my husband. I mean, how many people would walk out on their significant others the day they were in a mental crisis? That’s not a fluffy, socially acceptable thing to do, but it’s reality. My staff at the psychiatric hospital had never seen a patient getting married while on their ward before.

The fact that my husband supports me through my decision to go into long-term care, also proves that I”m lucky to have him.

These eight years married and these twelve years knowing each other, have been very different from the traditional couple’s first so many years, but they’ve definitely been worth it at least for me. Without my husband, I don’t know that I’d even still be alive today. Here’s hoping for a lot more years of a happy marriage.