A Gratitude Letter to My Paternal Grandfather

Posted on by Astrid

Hi everyone. I really want to write more and also to cherish the positives in my life, both past and present. For this reason, I opened the Gratitude app on my iPhone and had the journal feature give me a prompt. It was to write a gratitude letter to one of my grandparents. I have shared quite a few times how my paternal grandmother positively impacted my life. I could write her a gratitude letter and I may do so later on, but for today, I’m choosing to write one to my paternal grandfather.

Dear Theo

It’s been over 23 years since you passed. If there’s an afterlife, I hope there’s a way for the divine to get this letter to you. If there isn’t, I know you’ll never read this, but it helps me personally to express my gratitude for you. I think you may not have noticed it, especially since your dementia was already advanced by the time it was diagnosed, but I felt deeply touched by you even during the last few years of your life.

Your eldest son, my father, may not appreciate this about you, but I realize I got my health-conscious mind from you. I mean, it didn’t always look good on you and my parents don’t like it in me either. You were worried about cognitive and physical decline for as long as I remember. My father thought you were an nagger. I see you had a zest for life that was maybe hidden beneath anxiety.

You also taught me to listen to my body. Not that I can do it well, but at least I’m not the one to decide I’d rather die than go see a doctor.

Of course, I didn’t know you when you were young. You were 61 when I was born. As such, I don’t know whether your zest-for-life-turned-to-anxiety was always there. My father doesn’t have it (yet), at least not the anxiety part. I do. Having seen my parents’ attitude towards you and now towards me, gives me the will to be conscious of what I want in life, including at the end of it. You never had that choice. Then again, I hope you didn’t experience decline when you were my age.

Lastly, I want to thank you for the apparently insignificant details of your visits. You know, the coins worth five guilders you gave me and my sister at the end of each visit. Once, you put them in a transparent container that was screwed tight and that we couldn’t open independently. I remember it frustrated me to no end, because I wanted my coin, for goodness’ sake. However, now that I’m an adult, this is one of my cherished memories of you.

With love, Astrid

Missing Mommy #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for Stream of Consciousness Saturday is “miss”. I immediately thought of the fact that I miss my mother. No, scratch that: I miss Mommy. I miss a mother I honestly never had.

When I was little, my mother did try to stand up for me to my father, who’d been adamant that if I didn’t meet his expectations for me, I wasn’t worth raising. Not even worthy of life. As regular readers of my blog know, my father asked the doctor when I was an infant in the NICU whether I should still be treated aggressively given my possible future quality of life. The doctor was adamant that they were keeping me alive no matter what.

As I get older, accept more care and show more and more that I’m unable (and unwilling!) to conform to my parents’ rigid ideas of a person with a life worth living, I find that my mother is the one most vocal about the fact that she’d rather die than than live like this. And by she, she means me.

Nonetheless, I can’t keep from texting my mother. I honestly wish I could full on go no contact, but that’d be extremely hard if not impossible. I’m working on making sure that at least she will never be appointed to be my medical power of attorney. I am thinking hard about the difficult choices should I actually deteriorate to the point of no longer being able to make my own decisions. The first step, after all, is making those wishes clear.

However, all this doesn’t keep me from missing Mommy. That is, missing a mother who unconditionally loves me whether I’m disabled, queer, neither or as in my case both.

Not Dead Yet

Posted on by Astrid

“Not dead yet.” That phrase has been on my mind almost constantly for the past few days. It’s the name and/or slogan for a disability rights organization most specifically focused on campaigning against the “death with dignity” lobby.

Though I am 100% in support of every individual’s right to die when and how they want, the key here is “individual”. This means no-one should be pressured into dying either by family members or relatives, doctors or the government. This is why the phrase resonates with me.

My best friend and I are now almost officially divorced. I say “almost” because we’ll still separately have to talk to a lawyer via a video call next week. I however already updated my Facebook status and told my parents. This may’ve been a mistake less than two weeks before my birthday, but I can’t undo it now.

My parents are saying they’re worried I’ll end up lonely in the institution. No amount of me telling them nothing’s changed about the relationship with my best friend, convinces them otherwise. They’ve actually invited me (and explicitly just me, without my best friend) for dinner at a local-to-me restaurant on my birthday. Too bad I’ll already be meeting my best friend.

That’s not the worst though. The worst are all the comments my mother made on the phone about how she’d rather die than live like this, how hard it is for her to see relatives in care facilities, how I’ve only deteriorated over the past 20 years, etc. She herself claims she’s already made plans of ending her life in the event my father passes before her. I respect that choice, because like I said I’m all for the right to die. But it has to be a right. The way my mother spoke, it made me feel pressured to end my own life.

As poor as my quality of life is at times, I’d still like to be the one making the decision whether it’s so unbearable without a prospect of improvement that I’d rather be dead. I don’t need my parents’ opinion on that. And at this point, I’m choosing to stay alive whether my parents like it or not.