Pain, Ableism, Neil Armstrong & New Adventures

To say last night sucked is a huge understatement. The passing storm was so bad, my entire body hurt, not just my back. I slept all day to recover. Now my computer is telling me there’s a winter storm warming in effect from tonight into tomorrow. I am NOT looking forward to another night like last night. That was awful.

My husband woke up at 6am asking, “Why are you still awake?” When I told him, he said, “Hand me the Voltaren”, then used it to rub my back for the next 15 minutes. I was out like a light 5 minutes later. He is the sweetest. I really don’t know what I’d do without him. Not just on nights like that, but in general.

Dealing with chronic illnesses and chronic pain is no picnic. But witnessing it in someone you love has got to be its own special kind of hell. He hates that there’s nothing he can do but say, “Have you spoken to your doctor about this?” or “Did you remember to take your meds?”. And I don’t blame him. Not having control over what happens is one of the hardest lessons we all must accept. Especially when you’re forced to watch the person you love – your partner in life, and best friend in the world – go through such horrible ordeals so regularly, and there’s nothing you, or anyone else can do. Even my pain management doctor says, “We just don’t have the medical technology to handle what you’re dealing with yet. All we can do is manage your symptoms.”

But my husband Scott? He is a fixer. He just wants to make whatever you’re dealing with go away. But with something like this, it isn’t that simple. It can’t just be ‘fixed’ with dietary supplements, exercises, or diet. Those ableist attitudes aren’t helpful, either – Some of us wouldn’t be alive without pharmaceuticals, so no, “big pharma” isn’t the boogeyman to us. It must be nice to go through life blissfully unaware of how harmful it is to say things to a disabled person, like, “Have you tried green juices? Have you tried yoga/ mindfulness?” Then you have those anecdotal comments like, “My friend cut out all xyz in her diet and her – enter totally unrelated illnesses here – cleared right up!”

I could, and will, do an entire post about ableist language and how harmful it is. But for now, I’ll just say, I think people think they’re helping when they say things like that. They’re afraid of their own mortality, and these little tips and tricks/ wives’ tales that they’ve collected over the years “works” for them (*see: Confirmation Bias) and give them a sense of control over their own health and lives. Which, of course, is an illusion.

As I’ve said in a previous post, terrible things happen to good, otherwise healthy people, all the time. Nobody gets out of this world unscathed. Eventually, we will all have medical issues to deal with. For people like me, it just comes at 29 instead of at old age. Others are born with certain incurable conditions, so at least I packed in a lot of adventures early on in life.

I still get to have those adventures, thank goodness – now, they’re just more carefully planned out. I can’t just stuff a few sets of clothes and underwear and stuff it in a backpack and hit the road like I used to. Now I’ve got to make sure I’ll have enough meds for the time I’m going to be away, call my pharmacy early if I don’t, then go get them before we leave. Sometimes if they won’t fill them a little early, I do the tricky dance of calling my doctor from whatever state I’m in, and hope that a local pharmacy will fill whatever med I’m about to run out of. I have to check that the beds in the place we’ll be staying are comfortable enough for me to actually get some sleep on. I need to pack comfortable clothes, because anything too tight can be irritating on bad pain days. Most importantly, I have to make sure the hotel is close to the airport, and that there are as few connecting flights as possible, because my body just can’t take all the sitting upright for so long. My gaming setup is a monitor attached to my bedroom wall, and my computer is on my dresser, so that I can play from bed. I’m using it right now! Sometimes we drive, but even when the passenger seat back is down, my hips start to kill after only about 3 hours, sometimes sooner. That’s because it’s not completely flat, like a bed, and so the pressure of my fusion goes to my hips/butt area in no time. This is why we try to fly whenever possible, because otherwise I need to spend the entire next day recovering from the drive.

We’re going to Cyprus next summer, and I’m hoping they’ll have those lie-down seats available, because I think it will be too painful a trip otherwise. My cousin once removed, Costas (Constantine), lives out there with his family, and he has offered one of his AirBnB flats for us to stay in while we’re there. My mom’s side of the family is Cypriot, so this trip is especially important to me, especially now that my mom has passed away. We were originally supposed to go with her – the last text I sent her was about going to Cyprus. Now we’ll be going in her honor instead. I’m really excited to learn more about my heritage. I’ll certainly be writing about that when the time comes!

But this summer, since it would be nice to travel for fun instead of traveling just to deal with the different tragic events we’ve endured lately, we’re thinking about taking the kids down to the Orlando area/ JFK Space Center. Universal Studios would be fun- I haven’t been there since I was a kid, but I remember enjoying it far more than Disney. JFK Space Center would be a blast too, especially since my Papou has a brick there for the work he did for Grumman in propulsion. He revolutionized the air intake systems for a lot of the F-series planes. He was a big part of the space race during that time. He worked on the ascent stage to the Lunar Excursion Module (https://en.wikipedia.org/wiki/Ascent_propulsion_system), and was on the team on engineers who instructed Neil Armstrong on how to best re-enter Earth’s atmosphere safely. But most importantly, he was my Papou, and I loved him more than anything. He called me his Little Angel, or Angelion, which was a Greek play on words meaning Angel, but also Good News in the religious sense (Evangelion). He passed away in 2008, and I still miss him every day. It will be nice to honor his memory and teach the kids a little bit about him while we are there.

I can’t wait to see where this summer takes us. I’m sure whatever we end up doing, we’ll be sure to have fun. We’ve had so much loss this past year, between the deaths of my dad in December 2021, my dog Leia in November, my mom in late December 2022, and my godfather (uncle) just a few days after my mom, in early January. All the traveling we did was just to deal with those losses. We went to PA a couple of times, and to FL a few more, but we were busy with paperwork and condo/apartment cleanouts almost the entire time. All that to say - We could really use a real vacation! It’s been years now. Whatever we end up doing this summer, I’m going to make sure it’s WAY more fun than all the sadness we’ve been dealing with, and this time, I’ll be writing all about it.