“When your own life is threatened, your sense of empathy is blunted by a terrible, selfish hunger for survival.”
– Yann Martel (Life of Pi)
Lately I’ve been reflecting on the ups and downs of having a chronic illness — in my case, two illnesses, myalgic encephalomyelitis (chronic fatigue syndrome) and Lyme disease.
Mostly I’ve been thinking about how the upswings in my health always follow a downswing, and how both can be extremely hard to navigate.
While the improvements to my health haven’t been as dramatic in recent weeks, my health remains on an upswing.
But perhaps it is the deceleration in my progress that tempts me to say that the upswing I’m currently on is just as difficult as some of the downswings I’ve had in the past. But I won’t say that for three reasons: (1.) I’m not sure I truly feel that way (it could just be a momentary feeling), (2.) I don’t want to influence anyone’s opinion, everyone’s experience is relative, so mine might not correlate with the experiences of people reading this post, and (3.) logically speaking, ups and downs on a wavering health spectrum are so different it wouldn’t be fair to say they are equally as difficult to deal with.
Instead, I think they are, for lack of a better comparison, two different styles of punching used in the same fight.
And that’s what people living with chronic illness do. We fight. Those of us who endure being sick for years are anything but normal and live a life that is, by and large, a mixed bag of tragedy and triumph. As Dave Eggers once wrote, “We are unusual and tragic and alive.” Those of us fighting through the downswings, and desperately trying to maintain the trajectory of our upswings, are tragic and maybe even a bit unusual, but we’re also alive. Very alive. And not just by our pulse and blinking eyes, but by our will to stay alive and keep fighting.
Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others–and I am one of those–never give up. We fight and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the very end. It’s not a question of courage. It’s something constitutional, an inability to let go.
– Yann Martel (Life of Pi)
On the surface people living with chronic illnesses may not appear full of life, but we are definitely alive. We put more effort into essential tasks like brushing our teeth than some people use at any point in their entire day.
We might not get out much, society might look at our lives as uneventful and boring, but the reality is quite the opposite. We always have something going on; while we may not be able to remember the last party we went to or vacation we took, our lives are never dull.
For me personally, there is always something out of the ordinary going on in my house. I’m either shuffling my body into an inflatable bathtub to bathe, or I’m trying to figure out how to get outside for the first time in more than two years, or I’m having a foot-long catheter inserted into my (wait for it… Not that kind of catheter) arm so I can have blood drawn and get daily infusions to ensure I avoid another downswing.
As you might imagine, I will avoid a downswing in my health at all costs, mainly because of the uncertainty that accompanies them. I hate uncertainty. But even so, there is a certain peace I find when my health takes a dive. Maybe not initially, however; at the first sign of a dip in my health I become very frantic and try to do everything in (and out of) my control to boost my health back up, usually to a null effect. And that’s when I have to surrender to how helpless I am. So I usually just resolve to ride it out until my health swings, or rather inches, back up.
Surrendering to my illness was especially difficult during the last downswing in my health; it took me from working full-time and living on my own, to completely bedridden and eventually unable to speak or eat solid food. For months, years really, I could only wait for my health to improve. I tried treatments, sure, and perhaps they were the catalyst that pulled me out of the tailspin I was in, although ultimately, I believe time was the biggest factor. No matter how you look at the situation, it was a matter of time before my health rebounded, the hard part was not knowing how long I had to wait for my health to improve.
And for that reason I have never been more scared of my health deteriorating. I don’t know what will happen next. Will I remain on an upswing? Or will I take a dive?
Before I became bedridden I knew my health might take a dive, but I never thought it would put me near death. NEVER did I think I would lose my ability to speak or eat due to an illness which, up until a couple years ago, had failed to make itself visible in my outer appearance.
Even after hearing stories of people with MECFS dying, or nearly dying, the possibility never occurred to me. The people who became that sick were of a different planet, or at least a different disease. Now I am sure that I inhabit that same planet and that same disease.
Recently I got out of bed again; I can speak and eat also, but the stakes are just as high, if not higher than when I first became bedridden. One false step–the wrong treatment, pushing my body too far, or catching another secondary illness, could put me back down to a quality of life that is simply unbearable for any prolonged period of time. And while I may have made it out of the woods, or so to speak, I’m still very much stuck in the forest. Maybe I’ll never fully be out of the forest in terms of the vulnerability of my health, but so be it. I’ll be dammed if I’m going to use this upswing in my health to fret over the next downswing.
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25 thoughts on “Unusual and Tragic and Alive”
As usual, you perfectly describe being chronically ill – and with humour! Unfortunately, my experience since 2001 has been a daily collection of up and downs – a constant battle to maintain any kind of advances. But, like you, I never give up and try to envisage the long-term progress that I have made in graph form.
Thanks June! You’re very sweet!
I have a friend with Lyme disease. There are days when everything is a struggle. Very good description!
Thanks! Lyme disease is pretty awful. Hope your friend is doing okay.
He did that thing in Germany that’s supposed to be a cure. He’s felt pretty good ever since.
I like to think that my life is full of a level of thrills and excitement that no healthy person could ever match except possibly in a war zone! Stay safe!
Never thought of it that way, but sounds like an interesting take on it! 🙂
Me too! I’m sure there’s something comparable I just don’t know it.
Those with chronic illness are fighters. <3 It's amazing our determination to not let chronic illness take away or joy. Sure, we have horrible days but we wake up the next day with hope.
Hi Casey! Well said! Thanks for reading!
YES!!! Jamison, you have put words to a battle that I wage every day, and I thank you for your gift of writing! I have come to see my ability to weather me/cfs, and the changing nature of it, as grace. I’m not religious, so I claim this grace as my own strength, my own survival tool, as I negotiate this shifting illness without completely losing my mind. We are such warriors, I see proof of that on our patient FB pages everyday. We fight for ourselves, and time after time, I see that we also fight for each other, pulling our collective strength together to help lift someone who feels they have reached the end of their rope that day. Your post last week, pondering Lyme disease, and whether the me/cfs community will break into subsets, one day, made me feel even more strongly that whatever the outcome of further research, we remain a uniquely nurturing and caring group of ‘friends’. I consider you a great advocate in this fight, as your writing is documenting what so many of us are experiencing, while this illness begins to emerge from the shadows. Thank you for your work, and may your health allow you to enjoy some autumn days on your deck!
Well said Amanda and Jamison. Thank you both. I do pray a lot too because I feel I need more help than I can possibly muster on my own.
Gloria, isn’t this an illness that pushes us to the brink on a daily basis? How can this illness be so mysterious in the lab, when it wreaks such havoc on our bodies? I hope one day ME/CFS will be unraveled in such a way that healthy people, family, and medical personnel will finally see what tremendous strength and courage we have shown in facing this battle on our own!!! It is also my hope that the patient community will be able to have more resources available for some type of independent living, but in group housing, of some sort. Too many people are living alone with this terrible illness, yet we all need support, care and resources. I feel certain there are answers we could come up with, that would help us meet our needs, keep some level of independence, and take away the fear of meeting the future alone. For now, I’m glad we can speak to each other online, I can’t imagine facing this life without hearing the stories of others who have ME/CFS. I would surely think I had lost my mind!!
Me too Amanda. There are so many times when I start thinking I have lost my mind then I start reading these posts and it helps so much!! I don’t mind being alone too much except at times when I get too sick to take care of myself or have to go to a doctor or someplace else for whatever reason. Then things get scary and my anxiety levels go through the roof. Just thinking about going to a doctor now destroys me because I know they will be no help whatsoever except to make me feel even worse. I can’t even sleep the nights before I have to do something. Anything. If they were at least a bit compassionate and understanding it would help immensely. I would love to think I am courageous but this illness steals every single ounce of confidence in myself that I ever possessed. I can remember a time when I was full of confidence and even a bit of grit. :). I miss that. :). Yes, I agree that we all need more support and some sort of resources we could reach out for and I do hope someday that will happen and that we will be seen as “real people” with a “real illness” so that we could regain a bit of our self respect. I miss that. Now all I feel is shame and failure except for once in a while that I am able to achieve some very small goal that I have been thinking about for a long time. Funny how such small accomplishments now can provide such pure joy! Ha!
I am much more grateful for simple things now and that is sort of a blessing I suppose. I wrote way more than I meant to. Just wanted you to know I appreciate what you said very much. Take care of you.
Gloria, your strength and grit remains evident to me! Though you may feel much less empowered because you’re not throttling ignorant doctors at those horrifically useless appointments (that we all have had far too many of), that is only a marker of how severely affected our bodies are by this illness! All I can do is cry when a doctor is ignorant and rude to me, but once I leave the office, I can’t believe I didn’t give him/her the sharp side of my tongue! Our fatigue shuts down the part of us that used to be peppery and sharp, but those attributes are very much a part of why we are still speaking up to each other, and looking for other voices that sing the same song as we do. You are fatigued, drained, and exhausted, but you deserve as much credit as you surely give others who write about their experiences with ME/CFS! Jamison has a most remarkable writing talent, and he sparkles with energy and wit when he writes. Most of us do not have such talents, so we are lucky to have him in our corner! You do not have less value, courage, or worth simply because you are too exhausted to share more of your thoughts with us! Are you on the ‘ME/CFS for the Slightly Irreverent’ Facebook page? I’m on as Charlene Walker (a FB pseudonym- Amanda is my real name), and I find the discussions on that page to be a big source of strength! Please consider joining us, if you haven’t already! We will make it through this, but only if we stick together, as a community, while we await research breakthroughs that will surely provide some relief from the severity of this illness!
Thank you for your very kind words and encouragement Amanda and for the Facebook page you mentioned. I will check it out right now. 🙂
Thanks Amanda! I’m so glad. Did you see the notes about the subsets by Dr. Nav. at UCSD?
Hi Jamison! I had to go back and make sure the subsets you were talking about were the same as were discussed on the video I had watched, with the researcher who showed us this early finding. It is fantastic that any damned thing shows up, at this point! The blog you wrote, after being diagnosed with Lyme and thinking about these subsets, and the concern you expressed, that one day our ME/CFS patient community may be split into different groups of illness, has stuck with me. Your blog was timely for me, as I had just tested positive for a newly activated EBV, 3 years into being sick. I joined a chronic EBV patient support page on FB, to see what symptoms those people were reporting, and I have to say, I was feeling very snobby about the whole thing! They don’t seem to have the full array of symptoms that we all seem to share, and I wanted to tell them to stop complaining (not helpful, they have plenty of symptoms on their own plates!). From the unscientific observations of a person with ME/CFS, even if there are to be 3 clinical subsets that emerge in the research, the facts are that we share so many quirky symptoms, this has got to be the same wacky disease! I’ll sometimes read a post about a symptom I have, but hadn’t really separated out from the myriad of misery I live with, like suffering from air hunger, or sores that don’t heal (my legs have looked like I share a bed with chiggers for 3 years now. I even got yelled at by a dermatologist, which was a really great day for me 😡), or how loved ones can suck the energy out of my body if they are in the room, because they worry so much (Janet Dafoe mentioned this incredible and heartbreaking insight, as something Whitney was able to communicate to the family, before he became to ill to write). I believe those of us with ME/CFS have too much in common, too many oddball symptoms that we share, and even if it turns out that our cause of onset, and the biological response to it, can be broken into subsets, we are all still suffering from the same disease. I would also like to add that I have never ‘met’ so many people, who are willing to throw in the kitchen sink to help others who are having one of those moments where they don’t know how they’ll live one more day with these challenges. How can we be so sick, isolated, medically neglected, broke, etc…, and still be willing to reach out our virtual hands and hearts out to save someone, on any given day? We really are remarkably courageous and generous, if I do say so myself! Thanks for pouring yourself into writing your truth about living with ME/CFS! Your blogs and published pieces are excellent teaching tools, and your fight to live life to the fullest, irregardless of disability, helps so many of us continue our own battles. We will get through this together, and it is my greatest hope that our fight for visibility and medical treatment means there won’t be another generation of young people forced to face the medical and social ignorance that has made our journeys so much more of a struggle! ☘
Thank you Amanda. That was lovely and I totally agree with everything you said.
I’m glad you have the mental strength shown in this post. The body may be slow in healing, but the mind is not going to let you down. Much good luck, J.
Thanks, well said!
We are survivors. Sometimes, the outside world cannot be avoided. I had to evacuate my apartment because of Irma last week.
The 25-hour drive through a statewide traffic apocalypse to a friend’s place in Atlanta was pain and suffering, but at least I had somewhere safe to go, a reliable car, and a husband to drive the car. Staying in an apartment with no power and blaring fire alarms for days would have been my personal nightmare.
I learned that the apartment is still there (yay!) and the building only has minor water damage. But the fire alarms did sound for over two days after the hurricane caused the building to suddenly lose water pressure. It’s also really, brutally hot in Miami Beach, or so I hear.
My heart goes out to all of the people stuck in shelters or stranded without any water or power. I don’t think I will ever complain about being stuck in my apartment again. And by forever I mean at least a few months.
I have survived worse than this before, and I will keep surviving.
Thanks for the post. Very well-written and very timely!
Thanks K! We definitely are survivors. Great way to look at it. Thanks for the kind words!