This is a very personal and emotional post, so for anyone who only wants updates on Kris, please just go ahead and scroll through the pictures.
Kris was in the hospital twice in the past week. We just can’t seem to keep his symptoms under control anymore. The wait was over 3 hours because it was Thanksgiving. Their lack of blankets in the waiting area was complete horseshit, but there aren’t a lot of options for hospitals where we live.
If you can believe it, a month’s worth of IVIG was shipped to our apartment and left outside. I kid you not. No signature, nothing. 😒
(According to Swedish hospital, Kris is holding $80,000 right here.)
The complexity with which this very simple system operates is downright frustrating because, well, why couldn’t we just get this back home? I try to live every day being grateful I have a cup, versus worrying about it being half full or empty, but sometimes it’s hard to wrap my head around what we are going through. Things always seem so difficult, in regards with how we do most things in this country – but they really don’t have to be. I was watching an episode of X-Files last night, thinking to myself – why do we hate our jobs? Why do bosses have to be pricks? Why is the process for applying for anything so hard? Why is immigration impossibly complicated? Why are all these things the way they are? – They really, truly don’t have to be. (And yes, we are currently rewatching X-Files for the however many-th time. There’s not much to do when you’re housebound.)
Kris did start his IVIG. He had to do it at the kitchen island and in bed while our nurse sat on the floor because we have no furniture. He tolerated it pretty well thankfully – no side effects – but it’s intensified his fatigue. It’s 6:50pm as I write this and I’ve already put him to bed in the hopes that he will get some sleep. He’s not slept in days. Maybe weeks now. He’s physically and emotionally weak. He was too tired to eat dinner and wouldn’t let me feed him. He can barely move, he just mumbles when I ask him questions and goes unresponsive when I ask him to repeat himself. When I try to do something playful and funny to cheer him (well, mostly myself) up, he starts to cry and tells me not to pick on him. I feel awful.
I lost my temper and told him earlier how annoyed I am that he never has an opinion anymore about what I make him to eat, that all the planning and organization of our whole life sits on me now. I know it’s just dinner, but when your life is literally being trapped at home, dinner is a big part of your day. It made him cry because he is so exhausted he doesn’t even have the energy to think. I’m disappointed in myself and have spent the past months trying to be ever more mindful not to hurt his feelings. I just feel alone in the relationship sometimes and small things like his input on even the most mundane matters is really validating for me.
I’m not eating well or taking care of myself. I went to the gym once but have been eating sweets, processed freezer meals, and random processed snacks since the weekend before we left. I’ve gained back everything it took me 4 months to lose this month alone. I know it’s killing Kris because he wants me to maintain my health so I don’t damage myself and ruin my life. It’s hard not to be very conscious of that when your body is failing. But, for whatever self-imposed bullshit reason, it’s hard for me. Weight maintenance and stable eating have never been my strong points, childhood poverty and trauma tends to screw up one’s eating habits. Eating crap feels good and when that’s pretty much the only thing that makes you feel good, it’s hard to give it up. As for exercise, I’ve always loved the elliptical and small bursts of jogging, but the problem I have now is that as my heart rate goes up, it’s like the blood flow to my heart and brain intensifies my anger, sadness, and disappointment. It’s kind of like that saying that coffee makes you do dumb shit faster. Well, now I’m just moving very fast while being very angry! This isn’t because of anything he’s done or I’ve done, but just how unfair this is to us and to all disabled people.
First, you’re wearing yourself thin trying to find out what’s wrong – it seems like no doctors will listen or have a clue about anything. After 10 doctors tell you MAYBE SLEEP APNEA IDK LOL or misdiagnose you with this or that deadly illness (true story) you find a few good ones who have a diagnosis and a solution. So then, you’re fighting with medical insurance over a treatment that half a dozen doctors want you to get and the research is readily available on Google but for some reason, your insurance is so high and mighty that supposedly their damn doctors know better – even though your doctor PUBLISHED THE RESEARCH STUDY AND IS LITERALLY THE AUTHORITY ON THIS DISEASE – so they withhold your treatment to save money. Once you jump through every hoop presented, you’re miles away from things and people you love in some car dependent town 30 minutes from a decent grocery store or reputably hospital, only to now have to deal with trying to convince your disability insurance and social security that this incapacitated person who you have to to take care of is “disabled.” What a fucking joke. We are looking at possibly years of attorneys and political bullshit just to prove to a bunch of faceless document reviewers what I could show anyone in five minutes of being at home with us. We will not receive any income in the meantime, so all that savings that was meant to buy a house, take care of our family, generally live life, and sustain us into retirement will go out the window. It’s hard not to be disappointed that anyone has to live like this. That this is the standard. And the poorer you are, the worse it’s going to be for you. The level of human suffering I’m now privy too has definitely amped-up my existential dread and the ironic thing is, that before I met Kris, I thought the world was terrible and people were inherently evil. He changed that by showing me kindness and giving me opportunities I never would have had. But now, it’s not hard at all to see where I was coming from in the first place. There are a number of factors I can’t reveal in public yet that will probably make you think “Wow, that’s fucked up, why would they do that?” but the thing is, PEOPLE, like you and me, are making these decisions that are destroying lives and letting people die. Anyway…
Two nights ago, I made a quick evening trip to Stop and Shop to get groceries (mostly to get lettuce but they were all out). Yesterday, when the nurse came in to give Kris his IVIG, I stopped into Dollar Tree for 15 minutes while grabbing myself a coffee. These are the first and only times I’ve been alone this month. Alternately, I haven’t had any company other than Kris since we left Seattle. Kris’s condition and the loneliness it brings with it is so demanding that things like having to cancel my doctor appointment just to be available for him while he gets IVIG feels like I’m being robbed of my freedom and autonomy. I had planned to go to Trader Joe’s after going to my new doctor – it was the highlight of my week! But, he needs me. And he needs me around all the time, not only from a care standpoint, but because the illness makes him vulnerable and very lonely. He worries about things happening to me while I’m out. He never sees people because he can’t go out much. I’m literally all he has. I feel tremendously guilty for feeling this way because he doesn’t even get any breaks from this situation, ever. I try to be grateful that I can still ambulate and live without pain and have some control over my own situation.
I miss my friends. Instagram is my only remaining connection to some of them and truth be told, I find it a hard platform to be on. People are posting about their cool lives and the things they’re doing. I find it hard not be a bit jealous and resentful. To be perfectly honest, I never knew what jealousy was until last year. I couldn’t figure how people were buying houses and having kids while things kept getting worse and worse for us. I couldn’t understand why I was sitting in the hospital crying while people were posting vacation photos. It’s hard to see things like that when you feel like your life is over and it’s even harder to see the sad stuff. Even seeing friends complain ad nauseam about seemingly trivial things made my blood boil – I know everyone’s struggle is very real and different, but man, severe illness and death puts things into a kind of a weird twilight zone. Even sweet, sentimental intentionally tear jerking feel good videos can be too much because they’re always about families and love and things that fill me more with sadness now than awe. I literally cried for 20 minutes to Petula Clark’s “I couldn’t live without your love” watching the newest Heathrow airport bears Christmas video.
Feelings aside, this post barely even goes over some of the other legal/financial/ethical battles we are facing, there are things I still have to keep private because I don’t want to compromise some things we are desperately working on and wishing for. It’s hard. We are both very transparent people who give praise where it should be given and condemn bad behavior, but our hands are currently tied. Everything keeps coming back to the question of, why are things this way when they don’t have to be?
I hope things change soon. I would give anything just to see him be able to enjoy just one thing he used to do again. I want him to enjoy life again.