I had visitors this past weekend. It was the first time in months that someone from out-of-town has visited me, and despite what some of my other posts may suggest, it was certainly the most active I’ve been while being bedridden. And as far as activities for bed bound patients go, this was my favorite.
Stephanie Land, a wonderful writer and friend who works with the Blue Ribbon Foundation, came all the way from Montana with her daughter, Mia. Janet Dafoe and her daughter, Ashley, visited as well. The foursome drove more than three hours from the Bay Area to my house in the Sierra foothills, and while I know I wasn’t the only reason they made the trip, the visit was definitely the highlight of my weekend.
On Saturday evening, I spent a few minutes talking with each of my visitors, and when I say “talking,” I mean my lips moved and words, audible sentences even, actually came out of my mouth. I must clarify this because as I’ve learned while being severely ill, there are varying degrees of talking and I seem to have gone through them all. Unlike my past attempts at vocalizing, this talking was distinctly audible. It was a beautiful thing.
I had not met any of my visitors in person before Saturday. My interactions with Janet, although meaningful, were limited to social media and text messages. The same was the case with Stephanie, whose essays about Whitney, Janet’s son, I had read numerous times.
Visiting With Friends: One of the Best Activities For Bed Bound Patients
Janet was first to come into my room, she was just as kind and compassionate in person as she was during our virtual correspondence. She stood by my bed and we talked awhile. For me, it was a bit of normalcy in an unusual and often tortuous situation. But what I loved most about the time we spent together was how it was void of awkwardness, void of the fumbling of words and trepidation of what to say next in a conversation I’ve so eagerly awaited. My speech was limited, so naturally one would think the conversation might be more awkward, but the opposite was true. Perhaps it was because I couldn’t afford my usual quirky sayings, or my nervous tendency to elevate the awkwardness of a conversation by bringing up banal topics like the weather. Although, the weather may have been a good topic considering I haven’t been outside in nearly two years.
After Janet gave me a big hug and left my room, Stephanie came in and gave me an equally hefty hug. She sat on a stool beside my bed and we chatted for a few minutes. Again, the awkwardness never showed. It was like talking to a friend I’ve known for years. I could tell it was an emotional meeting for her. She had just come from Whitney’s house, where for the second time that I know of, she was unable to spend time with her dear friend because he was too sick. Then, there she was meeting me — her new friend — for the first time, knowing not long ago I too had been as sick as Whitney. It must have been hard for her. But maybe it gave her some hope as well. I so badly wanted her and Janet, and Ashley, to feel hope, to know that if my health can improve, so can Whitney’s. Because when I was too sick to communicate or move much at all, I kept thinking if he can dredge through this unbearable disease, so can I. We have never met, but I get a lot of strength from Whitney. We are, after all, in the same fight.
I proceeded to tell Stephanie how “Life’s gotten a lot better for me, but it still really sucks.” My sentiment was evident by my ability to actually speak those words, whereas six months prior I would of had to laboriously trace letters on Stephanie’s hand as she painstakingly tried to piece together the sentence. In other words, six months ago I wouldn’t have been able to express that thought, or any thought for that matter.
Ashley came in last with Mia. They were both very sweet. Mia shook my hand and talked to me for a bit before returning to her mom waiting in the living room. I really admired her intelligence and courage spending time with a sick person. At 10 years old I avoided sick people at all costs and when I did spend time with them, I was not nearly as gracious as Mia was with me.
Talking with Ashley gave me a look at the immense struggle her brother has now endured for years. I got a similar glimpse from Janet, but with Ashley I was able to commiserate with a peer who has seen the horrors of MECFS firsthand. I found comfort talking about everything from awful caregivers to what life was like before our families were stained by such an awful disease.
Before everyone left, I felt well enough to take some photos, which is also one of the best activities for bed bound patients, in my opinion. It gave me something to do and documented the memories that I am sharing in this post.
It was a big moment for me considering just a few months ago I couldn’t take a washcloth off my eyes in daylight and at night I had to wear tanning goggles. What’s more, I even had the energy to talk while the photos were being taken (multitasking is almost always impossible for me). At one point, someone mentioned how I had a lot of women in my bed, and I was able to joke about how it was a record for me. Although that was a lie. There was the time I had two paramedics and a caregiver — all female — in my bed trying to get me onto a gurney, but for the sake of brevity I didn’t mention it to my guests.
My mom took the photos, so I made sure to save one last photo-op for after the group left. It was the first time in at least two years I had taken a picture with my mom.
The following day was a struggle both physically and emotionally for me. It was difficult physically because the sensory stimulation from the visit and the exertion from talking so much sent my body into a crash, which luckily only lasted a day and was well worth it. The physical and emotional toll of the visit was reduced to a mere inconvenience by the warmth I felt from the lovely women who visited me.
I seldom have visitors, both because I live in a remote area and because my health doesn’t always allow it, so this visit was absolutely worth the MECFS hangover. Sure, I could have paced my energy better, but this is always a struggle when it comes to activities for bed bound patients. I could have talked less and used more hand signals to communicate, but I’ve never been one to overly choreograph my actions or micro-manage my interactions. I’ve always aimed to live on my own terms, not those of a disease that has taken so much from me. But at this moment, the disease has not taken my ability to communicate, and while I’m not always able to say everything I want, or fully vocalize my gratitude for visitors, I can supplement my speech with writings like this one.
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Really touching, Jamison. Thank you for expending the energy to report on a rare visit and first meeting with Janet, Ashley, Stephanie, and Mia. And we, your readers, get to meet your mom, too!
My pleasure! Thanks for reading, Merry!
So moved reading this, so happy for you that it went so well & that you were really understood by them all. It’s wonderful to hear that you’re recovering.
Take great care
Katy
Hi Katy. It was definitely a hopeful moment. Thanks for reading !
Jamison, my fellow slogger thru MECFS. So happy for u to have Janet, Ashley, etc. with u. So happy, I am crying. Maybe silly. I dream about visits that don’t happen. So I visit online. I wish we had an online chat room that we could enter for a bit when able. We just get each other with minimal effort. Hugs.
It hard to judge what is too much, but sometimes you just gotta go crazy and actually live like a normal person. Haha. Thanks for reading!
Man, I was just like you, three years ago. A year ago I still couldn’t type. Today, I walked to the shop, then watched Trading Places. Hang in there Jamison, you are an inspiration to all, and you’re going to get better. Ps- it’s still a brilliant movie, obviously.
Thanks Paul!
perhaps, hopefully & someday you and Whitney might have a beer and a good cry about this♥
Got chills reading about your wonderful visit — and the pictures!!
YAY!!!!!
what a wonderful pic of you and Kathleen!
xo and see you soon.
k
Thanks K. See you soon!
Hi Jamison,
So nice for you and your ‘special’ women (including your mother of course). ❤️ Awesome to meet your friends in real Life! There are moments like this, which keep you smiling. Hang in there! Big hug! Angelique 🙏🏻✨
Hi there. Thanks. Hug to you as well.
I love the part about the “women in your bed.” Even when this illness can steal almost everything, I am glad you hung on tight to your humor! It is is crazy how much we appreciate something so much as (what should be) the “simple” power of speaking. It was a pleasure reading and I am sure these moments were mutually special to everyone involved.
Haha now that I think about it I’ve probably had more men in my bed at one time. But who’s counting haha. Thanks Jamie!
Hahaha
such good news to hear of your improvements & so thrilled you were able to visit. here’s to continued progress, brave warrior. you give me hope as well <3
Aw. I’m glad. Thanks for reading!
Loved reading this part of your journey! You are a true inspiration! Keep it up brother.
Hey Tony. Thanks man!
Too tired to write much, just wanted to say I enjoyed reading this. Take care.
Thanks for reading Gloria!
So glad these lovely visitors lifted your spirits, and were able to communicate a little without an extended crash. Sometimes with this god-awful disease, ya just need to feel human!
Exactly. Normalcy!
Thank you for sharing your story, it’s nice to know I’m not alone in this world. Writing this from my bed. Can’t wait for all of us to be normal again.
We’ll get there! Stay strong!
Ánimo, Glorianna, escribo desde Galicia, España, en éste momento, sentada en una silla, todo un lujo!
So beautiful, thank you for sharing. It made me cry.
Thanks for reading Lynn!
You have such a beautiful smile! I am so happy you were able to visit with all of these lovely ladies. You have touched my heart! You are an inspiration!
I love the photo of you and your mom! Hope you all felt a sense of hope! Glad you had some moments of “normalcy” (not sure what the right word would be for that!) sorry you had to pay.
Thanks Amelie!
Thank you for sharing your journey. Hope you continue to heal.
Thanks Sherri!
I am so happy for you! 🙂 Your smile brings tears in my eyes, of joy. Warm greetings from a bed in Norway. 🙂 Stay strong! <:
Thanks! Norway? I’m coming to visit.
Thanks so much for sharing. I’m so happy for you that you had such a beautiful day with friends. Sending you warmth, sunshine and ocean views from Queensland, Australia.
Hi. Thanks! I want an ocean view in Australia. On my list.
Thank you so very much for sharing your story! I simply cannot put into words how much I can relate to you. And for some odd reason, while I was reading your blog and looking at your pictures there was this really strange salty liquid escaping from the corners of my eyes that I haven’t experienced in a long time. I had to grab this thing called a Kleenex and blow my nose. Even though you may feel like you are in the darkness, there is something about you that exudes sunshine. You have a glow about you that I am struggling to find an adjective for and it’s annoying because I usually don’t struggle to find adjectives so I’m just going to continue this run-on sentence and look up the meaning of brevity because you used it and I don’t know what it means and now I do so I will add it to my collection of recipe cards of words I didn’t know and now I know. You don’t want to be inside my brain. I chuckled a bit when I noted the sign to the left of you that said “please speak to me like an adult.” I should get a welcome mat custom made with that written on it. Again, thank you for your story – I’m sure it was worth the hangover and probably all the increased serotonin and norepinephrine from the visit offset the recovery time somewhat! If I could travel I would really want to meet you, but alas, at present, not possible. Keep smiling, friend!
Hi. Thanks for such a thoughtful message. Very sweet! I was wondering if anyone would notice the sign. It’s a gentle reminder for some. I think if I could talk and defend myself more it wouldn’t be as much of an issue. Anyway. Thanks for reading!
Well, I am known for noticing details that other people don’t. Also, I used to be a nurse – I’m struggling with studies in the hopes that I might again get my RN license, not sure how that will turn out. If my health continues to decline I am bracing myself for heartache and the fact that I would have no suitable caregiver. I digress.
I learned quickly early in my clinical studies especially in geriatrics that infantilizing patients is extremely demeaning to the individual. Just because someone is bedridden and looks cute (some elderly people really are adorable), doesn’t give anyone the right to baby talk to them. I had a really, really good instructor in my first long-term care clinical placement and I still vividly remember the lessons I learned even though it was a long, long time ago. If the person is an adult, no matter their condition, they are worthy of dignity and respect. Well, babies and children too, but you get my drift.
Realmente un buen día para ustedes, Jamison!
Yo también ví el cartel, qué bueno, jaja. Realmente eres un gran luchador y no sé cuándo, pero saldremos todos de éste infierno, estoy segura. Un abrazo, amigo.
Aw thanks! Gotta keep fighting!
This is beautiful. Thank you. I’m so happy you were able to experience a bit of human interaction. I’m also very glad to hear you are seeing improvements. I hope that trend continues! I’m still amazed you are able to write so eloquently in your current state of health. You rock!
Thanks Karina! You’re so sweet. I write everything on my phone with a greyscale screen. A laptop is too much exertion for me still. Adaptation is key as you likely know. Thanks for reading!
Thanks.
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Thank you for sharing your journey. This was very touching and emotional. I am so happy for you that you got to have this day. I wish you well, and I hope you will continue to make improvement. x
Thanks Emily. That’s very sweet!
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Hello 🙂
I’m from Norway , and have ME too.
Thank you, for sharing your story.
Are you getting a bit better 😊
I hope it continues !
Looking forward to read about it in your blog. Gives me hope .
Foo fighters- Walk. Please listen to the words of the song.
I am almost positive it was fate that brought me to your blog. I know, weird. I don’t even know why I am commenting on it, other than I felt completely compelled to reach out to you. Something in your story touched my heart, and knocked the wind out of me at the same time. It brought tears to my eyes, and a smile to my face. All these emotions, all at once, talk about confusing! Reading just a few stories I knew, without really knowing you, that you are an amazing man, that deserves to know how you touch people with your words. ( I’m almost positive you already know this lol ) Your sense of humor is really what made me keep reading. Your spirits are high, even with all the pain you feel. You are an inspiration to anyone who is fighting MECFS. I literally just spent the last hour reading all your posts.. I couldn’t step away. Thank you for your stories, thank you for sharing your life with us. Thank you Jamison, for keeping that smile on your face ! Keep getting stronger! Keep those positive vibes flowing!
Meli
Aw thanks incredibly kind and sweet Meli! I so appreciate your lovely words. Thank you for reading and making me feel loved! Keep in touch.
You’re very welcome. I will keep in touch, if you promise to keep getting stronger ! 🙂
Deal!
I nominated you for the Bloggers Recognition Award, details here: https://rugby843.blog. I hope you choose to do it. You can meet new people. Happy New Year!
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