Hello everyone! My friend and college roommate, Thomas, whom I have mentioned on this blog, has written an essay below about my battle with ME/CFS and our friendship. If you want to know more about Thomas, please check out his blog.
There once was a man named Jamison. Well, there still is a man named Jamison. Actually, there’s probably more people named Jamison out there than you and I think, but I only know one and he happens to be a close personal friend.
I’m Thomas, by the way. I’ve known Jamison since college. We met in 2009 at Sonoma State University surrounded by vineyards and dairy farms, the latter emitting pungent smells of cow manure, or what we students affectionately deemed the Sonoma Aroma.
It was during this time that Jamison and I developed a great friendship. We share a bond that has seen some happy times and some tough times, both of which I would like to share with you on this post.
He Stole Every Potential Future Wife of Mine
I first heard about Jamison from our mutual friend, James. He told me there was a bodybuilder among us at Sonoma State. I had heard stories about Jamison and his feats of strength. So James and I went to watch Jamison’s bodybuilding competition and oh what a spectacular event it was.
Upon our first meeting I noticed he was muscular beyond belief — I thought his pecs were somehow a real life photoshop project.
How did I see his pecs on our first meeting you ask? Well, there is an answer and a rather good one at that. Before James and I went to his bodybuilding show, Jamison and I were both at a Halloween party. He was dressed as a Spartan from the movie 300. He had tight, white compression shorts; a cape, and you guessed it, no shirt. He may have even made his pecs dance at one point, I’m not sure.
It was tough having a conversation with any female that night because every few seconds their eyes strayed from me and wandered to Jamison’s naked chest.
Although he was unintentionally stealing every potential future wife of mine, we hit it off. Soon he became like one of my brothers. I already had four, but at the risk of overcrowding our family tree, I let Jamison into the fifth spot.
He was caring, funny, witty, smart, and I could tell he would do anything for the people close to him. He obviously had the physical strength, but it was the emotional and mental strength that stood out to me. Although I had yet to see the full extent of his inner strength, I could tell he could overcome any obstacle put before him. Any problem. Any issue. Any illness.
Roommates: Battle of the Blender
“I am stressed out, man. There are only two months until the fall semester and I still don’t have a place to live. I guess I could be homeless my senior year. A lot of people do that, right?” I asked James one day.
Fortunately, I did not have to live on the mean streets of Rohnert Park. James had an idea. James was a great guy, full of smiles and red hair, but I’ll save that for another post. This story is about another Jam–.
“Jamison and I are looking for another roommate for our house. Do you want to live with us?” James replied.
I felt like jumping 3.2 miles into the air with excitement. But I didn’t show it. I remained cool as a pickle (shoot, I mean cucumber) in fear, however irrational, that a silly reaction would mean the revocation of this “pinch me I must be dreaming” offer.
“Sure, that works,” I calmly responded.
This was the start of an even closer bond with the man you have all grown to know through this blog.
When I moved in I got a look at Jamison’s playful side. Oh, how silly he could be! We would stay up all night talking humorous nonsense without a dull moment. We would play video games, make plans for documentaries we wanted to make together, and when we were really bored (and feeling competitive), we tried to name as many things in a given category as we could, like U.S. states or countries around the world.
Some of the greatest cinematic masterpieces were created during our time as roommates (Not exaggerating at all. You must have missed the Oscars that year). We made “Battle of the Blender,” a tale of unspoken roommate angst set in the late-2000s.
We also made “A Very Mary Christmas Story”
https://www.youtube.com/watch?v=t-ozfwpj13k
And “Part 2”
https://www.youtube.com/watch?v=HNb8_F7sTfc
And of course who could forget “Stand By Me”? The film about two classically trained singers fighting through mysterious voice issues to put on the performance of their lives.
https://www.youtube.com/watch?v=ernBn_v5H18
The following Halloween we dressed up as boxers (the athletes, not the underwear — think Rocky Balboa, not Calvin Klein), and sometimes even drank the occasional alcoholic beverage. We spent Christmas together, celebrated birthdays, and grew very close.
It was towards the end of our lease that Jamison got sick. I remember when he came home from the gym complaining of intense chills, strange weakness, and a racing heart rate. There he was sitting on the floor, totally disoriented. His condition looked scary at best. I didn’t know what to do so I just kept checking on him, hoping that like many post-workout scares, this too would pass. But it didn’t go away, it got worse.
Jamison saw several doctors and none of them could pinpoint what was wrong.
Eventually they diagnosed him with mono and we figured he would get better soon enough. We did not know, however, that he would remain sick for the next six years and was in for the fight of his life.
Jamison the Fighter
After he got sick Jamison missed a semester of school and had to stay with his mom. His car sat in our driveway and his mail piled up on our counter. These were sad reminders of his struggle, but he eventually regained enough strength to return to school and it was just like old times. Well, almost.
Jamison couldn’t workout anymore and he could only handle taking one class, but our time together was just as fun. On good days we would walk to the park or play catch in the street. He couldn’t lift hundreds of pounds in the gym anymore, but he could still throw a baseball and, as a lifelong baseball fan, I know that meant a lot to him.
Out last night together as roommates on Mary Place, I slept in his room. I was heartbroken that soon he would no longer be my roommate. I wanted to have one last moment close to him.
Even after witnessing his emotional strength and powerful will, I did not know just how strong he would need to be.
Jamison is indeed a fighter. He is in the ring with M.E. getting hit from every angle — bedridden for more than two years now. When I tell people this, they are in utter disbelief, but that disbelief quickly changes to awe when I tell them that he is punching back with every ounce of his being. He will not give up. I have seen Jamison in a completely dark room, barely able to move and unable to speak while having to spell out messages to me one letter at a time. I’ve seen him at his sickest, I’ve read to him when every other form of entertainment was too much for his senses to handle. But now he’s coming back to life. He’s standing again and I know he’ll be walking in the near future.
I know this because Jamison has passion. He has heart. He has perseverance. He is stronger than I will ever be. Jamison is a fighter.
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Me/CFS seems so much more real when you have such strong memories (and videos) of before. Jamison has PROOF he used to be a bodybuilder.
After all these years (27+), and having lost my career as a physicist completely, it’s almost impossible to remember what I was like. I had two little boys, and was working my dream job at Princeton full time when I got sick; my last child has never had a well mother.
You’re a good friend. I don’t really have any from before, except I do have four younger sisters I see very rarely – they’re all normal. I envy them their lives, their energy…
Hope we all get well one of these days, but it’s been pretty bad.
It’s horrible how our illnesses rob us of our old lives but it’s harder when people you considered as friends suddenly desert you. I guess you truly find out who your friends are. I advise my kids not to stress if they don’t have loads of friends, it’s quality over quantity any day! One truly amazing friend is better than a million fake ones! It’s just learning to recognise the difference that is the hard bit!
I pray for a cure for all of us and more good days than bad (I can dream right?) xx
Sadder than the enormous amount of energy it takes to be a friend and keep up with the Jones’s is that I find I have to limit my time with the friends I have, phone or RL, because it wipes me out. It’s the SPEED of interactions I can’t keep up with – the fun part of a conversation, following where it goes and meanders and changes track. All that is non-forgiving.
I know I used to be able to do it; now I resent it.
I found out a few weeks ago that I have 6 months to live and I read this article and it hit home for me in so many different ways, and thanks for the posting of it..
That is devastating, I’m so sorry. I know time is probably the most precious and valuable thing to you right now, but if you want to talk anything out or vent, I’m here. You can email me as well. But I also just want to say thank you for using the time you have to read this blog, that is a gift you have given me.
Thank you for your kind words and I might take you up on that venting at some point here in my life. If there is any lesson I can give you here tonight then the lesson I would give you is that make the best out of your days, there is no guarantees for tomorrow and use what you have to make every second count. Remember that. And look for all the small miracles in your life around you as well…
Thank you! That’s great advice. I will keep that with me.
This was a great post no insight into who you actually are which is a fun loving amusing young man. Illness might have temporarily taken your energy but not your spirit which still shines brightly within.
You are a survivor a winner it is time to look forward and build upon what you have achieved so far which is amazing. The past has gone don’t mourn it. I loved the videos they were great….. onwards and upwards Jamison 👍
Thanks! You’re very sweet and kind.
Just honest 😉
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Three years ago I knew nothing of CFS/ME. I had heard of Fibromyalgia many years ago. I know a great deal now about both as on August 24th, 2014 something changed while I was out of town visiting my mother. The morning before I went to see her I went out for a walk in my old hometown. I soon felt like I was walking in mud up to my knees. I thought it was peculiar but felt no alarm, that is until I returned to my home. Several days later I was overwhelmed with fatigue and could barely get off my couch. I also felt sick as though I had the flu and my bones and joints began to hurt. Since then I have seen many specialists and as yet there is no answer other than CFS. It’s been almost 3 years now and during this time have spent many hours researching the illness and listening to the stories of others with this condition.
I retired from teaching art about 8 years ago. I was free to paint and draw everyday. It was glorious. I recently passed the 1000 day mark of Having CFS and in that time have done very little painting. I read now more than anything else. I also stopped hiking, riding my bike, going to concerts, traveling and stopped seeing friends. I haven’t given up hope and every morning when I get up I believe this illness will have vanished. I am not a magical thinker however and know that there is more to it. New research suggests big problems in the manufacture of energy in the cells. I keep up with most researchers in the US and around the world. Perhaps they are onto something. It may be a long time before there is treatment, perhaps even after I’m gone. Be that as it may I do hope for the sake of others, particularly young people in their prime, that there will be discoveries, treatment and recovery in the not too distant future.
Hi there. I always hate hearing stories of regression like yours and other people with MECFS. We’re all so similar. But you’re right we’re making progress and I hope there’s a cure soon. Have you tried any treatments?
Hi Jamison. My doctor has only come up with one treatment on his own. In the early days he suggested Adderall and said this is what he prescribes to his patients in my condition. I tried it a few times but thought it was counterintuitive. It wasn’t until about two years later that I began to take it regularly. At first I found myself motivated again and painted for about 40 days in a row. Eventually the side effects caught up with me. I still take it just to keep myself awake during the day. The first positive experiences never returned and I don’t want to up the dose.
I discovered Nuvigil along the way as an alternative and it took a lot of convincing on my part to get my doc to write a script. I was very excited when I received my first bottle in the mail. I knew however, in just a matter of days, that this was not going to work for me. The drug kept me awake and alert but the side effects were harsh. Difficult to actually describe.
I’ve tried a few other experimental drugs and again the side effects were very unpleasant. I think one was called Memantine. Other than that I tried a variety of supplements with no success. I have tried Medical Marijuana and sometimes it had a negative effect. Since it’s illegal in my state I can’t try different varieties. MJ is always a bit trippy and not sure I want that everyday in my life.
I read a great deal about Low Dose Naltrexone several years ago and again it took a great deal of convincing on my part to get my do to write a script. Eventually he did and I took it every day for about two years. I didn’t see any improvements. My fibromyalgia became very severe about a year ago and I suggested Tramadol to my doctor. He was okay with that. I began to have a feeling that LDN was interfering with the Tramadol so stopped taking it.
I think that’s about it as far as treatments go. I think meditation helps take the edge off though I find it difficult to stick to it. My moods can swing a great deal. I think I feel anger more often than anything else though not that frequent, mostly during flare-ups. The thing about anger is where do I direct it. Hard to be angry with nature as nature could care less. Sometimes my anger is directed at my doctor and the medical world in general and that seems unreasonable. Getting angry with myself is equally unreasonable. This is where meditation can help most.
Thanks – Mickey
Oh boy, you’ve been through the treatment gauntlet. It’s such a wicked game. Thanks for sharing your experience. I know what you mean about the anger. I have so much of it and seemingly nowhere or no person to place it upon.
Have you ever been checked for Lyme Disease? It has very similar symptoms to ME/CFS/Fibromyalgia. Jamieson you might want to consider it too. Ask your Dr to check for it. If you’ve ever had an insect bite it could have been from a tick without you realising it. Just thought it was worth mentioning it to you both.
Hi Tracy. Yes, I was diagnosed with Lyme in January but there seems to be a lot of stuff going on as I have EBV, CMV, herpes, low cortisol, ADH and a bunch of other stuff. I’m basically a pathogen party.
Hi, my name is Vincenza, my friends call me Vicky. I’m 53 and I use an electronic wheelchair since I was 32. I can’t walk, I can’t use my hands (fingers).
What’s new? Maybe thousands people are in the same conditions… this hurts me.
The Beauty of my life is enjoying EVERYTHING and live one day at a time.
I have experienced love, family, friends… and still I’m looking for new ones. Even now. Even here.
Are you ready?
A warm hug from Italy!
Vicky
Hi Vicky. Thanks for your words — a good reminder to try to enjoy each day.
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