micaela-macdougall
Forum Replies Created
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I really feel this. I’m currently reading My Body Is Not a Prayer Request by Amy Kenny, and this kind of misrepresentation is a major theme of the book (highly recommended for any Christians out there). I definitely get sick of disability being portrayed as inherently bad, and you are totally right that this portrayal leads to people having such a hard time coming to terms with their disabilities.
That said, I don’t know how change the narrative of these ads. In this particular context, we’d have to find a way to articulate why smoking, diabetes, etc. is bad, without relapsing to a “disability is bad” narrative. I think that is possible (I might go in the direction of differentiating disability and disease), but it would take a fairly philosophical and nuanced conversation – and short ads that are going for quick visceral impact don’t have room for nuance. It’s a bit of a chicken and egg problem. We need to have nuanced conversations on a societal level in order to change the emotional impact of our media narratives, but changing our narratives is often what motivates people to start having those conversations.
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For what it’s worth, I saw my neurologist and pulmonologist at Johns Hopkins last month, and talked to them about COVID. They both said that there aren’t data from scientific studies, but anecdotally their patients with SMA and similar neuromuscular conditions who have caught COVID have had less severe outcomes than expected, as long as they are up to date on vaccinations. That said, they still advised me to take precautions to avoid COVID – less severe doesn’t mean no risk.
Also, I could be wrong, but my understanding is that it could still be beneficial for your daughter to isolate, or at least wear a mask around you. Your risk of catching it from her increases the more virus you’ve been exposed to. So even if you’ve already been exposed, adding in more exposures increases your likelihood of getting sick yourself.
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So glad I upgraded to the 13 mini last year, when it was still the shiniest new model. I definitely wouldn’t like anything bigger. Now I’m set for another 3-4 years, by which time Apple will probably have switched things up again.
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Thanks for sharing, everyone. Even if none of us have an easy solution, it’s comforting to know this is a normal problem with SMA!
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Boy do I get the fear of making changes when your body has gotten used to something.
If you don’t mind me asking, what bathroom renovations are you doing? I’m actually renovating my bathroom right now too. I’ve just moved, so I’m turning the bathroom into a wetroom. I’m a big fan of the Schluter system that lets you create totally curbless showers. And I have the benefit of a dad who’s a contractor. (If you have any specific renovating questions, I’m happy to ask his advice.)
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I had never been to the annual conference until they held it virtually. I understand the benefits of being in person, but it would have been nice if they had included a virtual option for those of us who couldn’t make it.
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So sorry about this, especially so soon after your recent difficulties! It feels like everyone I know has COVID right now. I’m just grateful I haven’t been exposed yet…
Not a full-fledged plan, but a few thoughts:
- I know rapid tests have not been doing a great job of catching omicron, so I would plan to rely on PCR tests.
- I would get a PCR test as soon as possible upon having symptoms. I’m hoping that I’d be able to get my hands on paxlovid or one of the other antivirals, but I know that you have a narrow window for getting a prescription after getting symptoms/testing positive, so I wouldn’t delay on that timeline.
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Thanks for the suggestions, I’ll look into those!
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My pulmonologist (who has a lot of experience with SMA) has strongly recommended that my parents and I get a second booster, now that we are more than 4 months out from the first one. So we are scheduling our shots for next week.
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What kind of books do you enjoy? Nonfiction? Memoirs? Novels? Classic literature? Mystery? Fantasy? Sci fi? (Just to name a few genres…)
Right now, I’m reading two books that I highly recommend, but that are fairly niche interest. Jesus and John Wayne is fascinatingly disturbing for anyone familiar with white American evangelicalism. And Robert Alter’s Hebrew Bible (a translation with commentary) is one I keep coming back to – Alter has an unmatched understanding of the poetics and the nuanced complexity of the biblical writers.
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I’ve had an ABLE account in Maryland for almost 4 years, and I’ve never reported anything from it for tax purposes. Based on this (https://www.marylandable.org/faqs/do-i-have-to-pay-taxes-on-my-account), the only thing you’d ever have to report is if you withdrew money for something that wasn’t a qualified expense.
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For minor, everyday issues, I enjoy working with my GP, who doesn’t have much experience with SMA, but is eager to learn and try new things. For anything serious, especially inpatient care, I make sure that I am connected to my team of experts at Johns Hopkins, who know my body better than I do.
Interestingly, Deann, I’ve had the opposite experience as you. I recently had to change gynecologists because my previous (non-expert) doctor didn’t have a hoyer lift and wasn’t interested to searching for a better solution than the nurse manually lifting me. My new doctor isn’t an expert in SMA, but she has a lot of patients with disabilities, and that showed in how much she treated me like an individual, making sure I felt like I was in charge of my care. Every single “expert” I’ve worked with at Hopkins, from doctor to therapist, has made me feel more seen as an individual, because their expertise gives them a high level of insight into my life.
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Similar question as Alyssa – what do you use for your ceiling fan? I’ve had trouble finding something that could control the light and the fan separately?
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Gift cards (Apple, Amazon, Etsy, even Visa) can be emailed and I think you can often schedule when you want the email to be sent – you could also make a card if you want them to have something tangible to open. That would be similar to cash, but not require a trip to the bank.
I also like giving “gift certificates” for experiences. This year, I’m giving my mom an hour of tech support (when she can’t figure out how to use her phone or computer). The options are more limited with COVID preventing a lot of outings, but you could do a home movie viewing (either together or as an Amazon watch party), or a takeout meal together from a restaurant of their choice.
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“On the other I see so many people living carefree lives not giving Covid a second thought. With my medical history I can’t do that.”
This is exactly how certain people in my community make me feel. I have been so careful for so long, I am tired of the people who aren’t being anywhere near as careful as me and who are (however unintentionally) extending the pandemic. I want the burden to be more evenly distributed, and to feel like I’m not the only one responsible for my safety.
That said, I am very thankful that the people closest to me do not fall into that carefree category. My family and close friends are all vaccinated and often take even more precautions than I ask them to. I will even be able to celebrate Thanksgiving with my parents, uncle, and two cousins, and share dessert later with several neighbors, all of whom are vaccinated.
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That’s another really good example. In my mind, the important task (for us and non-disabled allies) is to come up with a new strong narrative about why things like addiction are bad, so that people will find a motivation to change without being afraid of becoming disabled.
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I love this layout! Do you know if there is a way to customize the iPhone keyboard layout too?
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That worked, thanks!
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That sounds so cool! The link isn’t showing up for me, can you repost it?
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That is exactly how I’ve been feeling for the last couple weeks! Thanks for expressing it so well – it’s nice to know I’m not the only one.
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Yes, I got it last Friday! It knocked me out pretty hard, so today is the first day I’m feeling back to normal.
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It was definitely a difficult process! In the end, I was able to contact my neurologist who specializes in SMA, and she referred me to a gynecologist in the same hospital network. Honestly, I feel so lucky to live within an hour of Johns Hopkins – besides their team of SMA experts, the entire staff has so much experience with patients who have unique needs. In a way, it’s a shame that I have to go to a world-renowned hospital network to find a gynecologist that has a hoyer lift, but I’m grateful that that option is open to me.
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Because I know myself – the kind of person I am and the kind of life I lead. I firmly believe that without SMA I would be overly focused on productivity and success, and neglectful of beauty and community. I’m not trying to speak for anyone else, just explain how Halsey’s ideas resonated with me, how I can see that my suffering has changed my life, both for the worse and for the better.
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I don’t think that’s exactly what Halsey was saying. The context of that quote is,
“My heart leaps with joy at the sight of children with SMA who are reaching milestones that were unfathomable to my friends and me when we were kids. These kids might not have to undergo as many surgeries or spend as much time hospitalized as we did. They might not need to rely on medical equipment to breathe, eat, talk, and walk for them. And that’s incredible.
But while those experiences sometimes resulted in hardship and heartbreak for us, they gave us some valuable things, too. Living with SMA helped teach and enforce empathy, resilience, gratitude, community, creativity, humility, spirituality, patience, and maturity, and these qualities are key components of the adults we became. I don’t want future generations to endure the challenges we’ve faced, but I wonder what will foster these traits in them if not SMA?”
Halsey fully acknowledges the tremendous gains of eradicating SMA. At the same time, she is asking whether something could be lost in the process, even at the same time as much more is gained. Even when the gains clearly outweigh the losses, it is still honest to acknowledge that the losses exist.
For my part, this idea resonates with me. As difficult as life with SMA is, I know that I would be an entirely different person without it. Without SMA, I would not have learned how to sit entirely still and look at a single painting in a gallery for half an hour. I would not understand how interdependent humans are and how much value dependence and community bring to my life. I would not have the empathy that I do for other marginalized groups – for people of color (who are also treated differently because of how their bodies look), for LGBTQ+ people (who know what it’s like to have to break free of other people’s expectations of your sexuality), for those living in poverty (who are intimately familiar with exhaustion and fatigue from living hand to mouth).
Insofar as SMA is a disease, I rejoice with those who no longer have to suffer its symptoms. Insofar as SMA is a disability, I rejoice in the person I am because of it and in the communities it has connected me to. I believe it is possible to live in that tension.
