Fresh Air

It's been two weeks since my last blog post. Did you miss me? I sure missed you! I really did.

I realize you may not have noticed my absence, which is fine but if you didn't, then: bye!

Just joking, I'm sure most of you didn't notice I took a break, but writing this post has been on my mind almost every day for the past two weeks. Still, it felt good to not write for a bit. I had been going at an intense pace, especially for a sick person. But my mind feels replenished now. So… let me tell you the reason for the hiatus…

I got MARRIED! Okay, no, that's a lie, I didn't get married. Sorry. I didn't even find a girlfriend. But it has been a very eventful two weeks and I'm happy to say that with everything that went down, my body has held up relatively well.

On Monday I went outside for the first time in a really long time. This meant getting out of bed on my own, which I haven't done in more than two years. So it was a big moment for me. And to make the moment a little more special, it was filmed. I can't say what it was filmed for, but I can say there was a full film crew with mics and lenses and cameras that cost more than my college tuition.

I wish I could say more, but you'll definitely know about it as soon as I have permission to spill the beans.

But let's get back to what I can talk about: getting some fresh air. So I slowly lifted my torso upright and shuffled my hips to my wheelchair, then my mom pushed me through the hall and outside to the deck. It was around eight in the evening, but it was still pretty warm outside, probably in the upper 80s. Luckily I had a handheld misting fan to keep me somewhat cool, which allowed me to focus on the beautiful landscape.

It's amazing how a gorgeous view can captivate even someone as preoccupied as me. Despite my blurry vision I was able to enjoy the view. And honestly I can't say the last time I saw any view for the first time. It is renewed experiences like these that mean so much to me.

It was the first time I saw the view on the deck because it was also the first time I left my house. Until Monday I had only entered the house, which is surreal to think about — not only was I in this awful situation in which I couldn't leave my house, but to make it even more bizarre, I was completely unfamiliar with where I was living.

I was moved to the house when I was incapacitated. The paramedics moved me at night so, even if I could have sat up to look at my surroundings, I probably wouldn't have seen much except some scattered porch lights across a dark landscape.

On Monday, however, the skyline off the deck was so vast with just the right amount of light, so I could see all the way to Mt. Diablo in the East Bay. My awe was intensified by the fact that I've been staring at walls and a ceiling for a couple years straight. To go from looking at a view of only a few feet to being able to easily see 100 miles on the horizon was truly spectacular. I cried. Big sniffly man tears.

Then a couple days later I stood up, which didn't quite go as well, but I was able to get my feet on the ground and put some weight on them as I've done a few times in the past several months.

On Friday night I got another midline IV put in, which went well, and even better: I didn't take a dive following the previous four days that I had to go without an infusion. That alone is progress. I used to take a dive after a couple days without IV saline.

Finally, yesterday I went outside again when my buddy, Thomas, came to visit. It was really awesome; we were able to catch a gorgeous sunset and have some laughs.

Through all of this there was, of course, lots of pain and all the usual symptoms I get, but what was most promising for me was how my body held up under what is certainly the most activity and stress it has encountered in two and a half years.

The fact that I can write this post the day after a week of straight chaos — cameras and people in and out of my room and lots of talking and a bunch of other stuff that makes my body hurt — is amazing. And sure there is a lot that I'm still unhappy about in my life, but whenever those things threaten to consume my state of mind, I just remember what it was like two years ago. I channel that very sick guy, living such a miserable existence, and he says "Hey man, you're outside looking at the sunset. I'm still in this dark-ass room looking at the fucking ceiling." And that makes me smile.

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59 thoughts on “Fresh Air

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  1. Great article Jamison (as always). I am so thankful that (1) you were able to go outside and enjoy the fresh air and sunset, and (2) I was able to be a part of it. I am more thankful than you know that you are doing better and I am praying that this upswing in health will rise higher and higher every day. I love you buddy.

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  2. I remember when I was in bad shape, just making it out of my room and to the bathroom was cause for celebration, so I can identify a little. And it sounds cliched and trite, but when you have very little, you begin to appreciate the very simple, basic things that everyone else takes for granted, like going outside.
    So congrats, here’s hoping the improvement continues and your world keeps slowly opening up.

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  3. I don’t think I’ve ever smiled so much reading a post! The feeling of outside air is something that cannot be replaced and is greatly missed when we are stuck inside. So glad to see the uptick for you and hope it continues, and gets you through set-backs. Can’t wait to hear more about the project!

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  4. I’m so happy! You touched my heart very deeply ❤
    Go on keep smiling and rejoyce for the little big things of everyday life, you deserve it!
    Read you soon,
    ciao from Italy!

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  5. Congratulations, Jamison! So happy for you. Also excited to see another documentary in the works. Bet you never expected to be a movie star, complete with groupies! 🤗

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  6. Wow that’s great news! The picture you took of the sunset is beautiful and I’m glad you could enjoy such a view. I feel most happy/at peace when I’m out in nature so any small amount I can do helps my mental health. I’m wishing that you continue to have small improvements.

    BW Ellie

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  7. This was just so relatable for me. After my first year of illness, I was so incapacitated that I had to shut down all sensory inputs. When it came to the point where I could no longer bear the sound of another person in the house at all, I was moved to a flat that I never got to choose or preview. I was blindfolded when driven there, and taken straight to a black room. My mother whispered to me that there was a balcony, but it took four years until I could move across an unfamiliar lounge and look outside.
    I’m still on very familiar terms with every spot on my bedroom ceiling, but my world has expanded a bit, and I’m writing this from the best investment I ever did, a hammock strung up in air and shade on a balcony that is no longer impossibly far away.
    Thank you for sharing your life.
    Love from Sweden

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  8. Cuando he leído el título del post… me he alegrado muchísimo por tí, Jamison!
    Me he emocionado mucho, hoy es un gran día y los próximos, serán mejores.
    Un enorme abrazo, amigo.

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  9. I am delighted for you!! Such Amazing news, the feeling and creativity must be pouring from you. You are such a strong person and a real inspiration. I enjoy reading your posts and keeping up with you so this has made me smile. Onwards and upwards

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  10. I wish i could have been there for that amazing moment! You on the deck looking out over that immense landscape and snuffing up all that wonderful mountain air !!! I love you Jamison —
    Ma K

    Liked by 1 person

  11. What a wonderful way to start my day – a fabulous post from you.
    I’ve missed your posts – I might not always comment, but I look forward to them so much because you ‘get it’ – you ‘understand’.
    I must admit I was relieved to see your post because I was concerned about your mysterious time away, but wow, I needn’t have been.
    I feel you are on your way up!!! I know the feeling of re-joining the world, even just a little bit, and it’s such an incredible accomplishment 😊
    I’m over the moon for you ….. yeah! Fab!

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  12. What a great smile! You look wonderful and I am so happy for you! Yes I did miss your posting. It’s only once a week on WP but I have seen you on Twitter. I get email notices if people I follow made a tweet themselves. But congratulations, I know you are thrilled and I am, for you. I am looking forward to the video…..hmmm? Great post!

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  13. Jamison – I’m truly so happy to hear of these huge accomplishments!! I hope you continue to have them as I’m sure you do too! Do you think it’s just been time essentially that helped you or anything specific? My ME is not nearly as bad as yours now but I found careful pacing and just letting my body rest helped me improve over the first few years especially. I don’t think I’ve made any gains in the last couple of years but I still keep trying.
    Anyway, I applaud your successful milestone and can relate to how amazing that sunset must have felt.

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  14. Thanks for sharing this with us; so nice to see you w/family on your first day outside. Congratulations — this is a big transition! 😉

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  15. This is just so, so wonderful! I wish I could have been there! Maybe I can get up there sometime soon! Oh my gosh. I bet your mom is thrilled. Hi to Kathleen! and Love to you both!

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  16. JAMISON!! I’m so freakin’ happy for you!! And, yes, my interest is piqued to the max…can’t wait for you to spill the rest of the beans! 😀 What a wonderful view you have…and a beautiful mom…and a fantastic friend!! This has raised my spirits no end. Thank you so much for sharing. Baby steps back into the world….

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  17. So happy you got out! Sure hope this is the beginning of much continued improvement Jamison and many more trips out to look at the sky, sunsets etc.

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  18. So nice to see you smiling. And that is a gorgeous view. I think the sunsets/sunrises are what I miss most about Colorado. My roommates get the view here. Kinda makes me want to find some secret spot to watch it like I used to. Glad things are moving forward, friend. ❤

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  19. Awesome news and pics! And yes, I DID notice your absence, and YES, you were missed!
    So there…lol
    I think your post just made my day.
    Wonderful to see you up.
    XO

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  20. Wow!! Well I’m simply tickled for you! Hoping this is the first of many sunsets you get to view from your home. I cannot pretend to imagine how emotionally overwhelming this experience has been for you, but I remember burying my toes in the sand for the first time in years (only twice since CFS and the beach is a mile away) and it was beyond amazing. Way to go you, way.to.go. The best is yet to come.

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    1. Walking barefoot on sand is really good for the feet. I recommend forJamison’s feet a little exercise using a prickly plastic ball that you can get at a supermarket. It is made for use in a dryer to help with drying your clothes, but it’s great for stimulating the feet! Wear socks, sit down, plastic ball on floor, place foot on ball and roll around under sole. Do both feet. Feet are very very important for standing, walking and more. If you want a pic of the ball, I can send one.
      Love
      Aradhana
      England

      Liked by 1 person

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