I’m happy to share this guest post from Joe Landson. Man, can I relate to this!
Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything we set our minds to. He may cite examples of others who have overcome disability. She may use pop psychology jargon, or the homespun wisdom of Dr. Sw— um, Phil. And being the good people we are, we want to hold this lovely person tight – preferably with both hands, around his or her throat. (Just until the haranguing stops, of course.)
Whenever I confront advice like this, I remember a story I saw on television decades ago that somehow stuck with me. It was about a man who believed he could do anything he set out to do. (And he did.) This guy had two hobbies: marksmanship and wildlife photography. No, there were no telephoto lenses from a safe distance for him; he used a cheap, zoom-less film camera to photograph wild animals from a few feet away. Of course, he knew his hobby had some associated risk, so he always carried a powerful handgun on his photo trips.
One day, this man set out to capture images of the most elusive and dangerous quarry in North America – a mama grizzly bear with cubs. And he succeeded. We know he succeeded because the pictures survived. (And beautiful close-up pictures they were.) The search party recovered the film from his camera, found more-or-less intact on the forest floor. A short distance away from the camera, they also found his pistol – fully loaded, hammer back, unfired. And the searchers found him. I forget if he was near the camera, or near the unfired magnum revolver. Or perhaps a bit of both?
Of course, the moral of this story is that our well-meaning friends are right, or at least half-right: You can indeed do anything you set your mind to. You can do it once. In the photographer’s case, he never did anything again. In our case, we face days, weeks, and months of recovery from most anything we do.
Some of us find this disease – wait for it – unbearable. Yet each of us probably tries to do something within our limits, while surrounded (or abandoned) by folks who really don’t understand what it costs us. On any given day, we can look and act healthy; but we can’t count on faking healthy the next day, let alone day after day. Our days are not replicable.
The miracle of Laura Hillenbrand is not that she wrote a brilliant, critically and commercially successful work of non-fiction. The miracle is that she did it twice, and lived to tell about it. (At this moment, Dear Friend is gearing up to ask why we can’t all be like Laura Hillenbrand.) However, just as she is not our bitch, Ms. Hillenbrand is not our cookie-cutter model for self-improvement.
The only limits we can set are our own, each of us, ourselves. If government doesn’t like that answer, then they can fund research of our disease properly. If organized medicine doesn’t like it, then it needs to adopt us into a specialty, and take responsibility for standardizing and organizing research inquiry into us. (And no, the shoddy PACE trial doesn’t count.) If our Dear Friends don’t like it, then they can break open their piggy banks, and fund development of an objective medical test that measures, reliably and exactly, how disabled we are. (The two-day exercise test arguably does this, but at the cost of the weeks of recovery we are trying to avoid.)
Until these things happen, we are each of us alone in the woods, facing our own grizzly. Some days, playing dead is the only play there is.
Thanks for this piece, Joe. Just as Jennie can relate, so can I. I love how, in the first sentence, you put “dear” in italics, giving it a double meaning to me. On the one hand, I sometimes wonder how dear this person can be when she (it’s a woman in my case) continually dishes out bad advice. On the other hand, I know that she is dear in that her intentions are good; she really does think what she’s saying might help me. Her comments often make me want to scream! Instead, I just play dead. Regarding that last sentence, thanks for putting into words what it is I do.
Well done Joe! I’m aiming to add these questions to disability scales: What level can you sometimes achieve? What level can you sustain?
Absolutely, Carollynn: Achieve and sustain are completely different!
Excellent post. Thank you! I too can totally relate. xx
Thank you
Great post. Love the humour. Who was “Dr. Sw-” supposed to be? Dr. Swineheart?
Thanks. It was meant to be Dr. Swill instead of Dr. Phil — an accidental-on-purpose mistake.
Ooooh, got it! Sorry, I’m a little slow on the take. 🙂
I daresay if your ‘dear friend’ actually had a chat with Hillenbrand, they’d have a completely different idea of how overwhelming this illness really is. They’d think twice before speaking from their position of ignorance.
Even Laura Hillenbrand was homebound for a great deal of the time she was writing her books. She never left the house for two hours of that time. She had to live with her mother for awhile in the earlier days and couldn’t come downstairs for months due to her awful vertigo.
She has improved somewhat as she is able to do more, but her TV interviews have explained her disabling condition.
I sit here exhausted because I had another night with only four hours of sleep, my usual situation of late, no matter what I do. I can barely type or hold a cup of tea. I can’t go to the library today and it’s two blocks away nor can I do my laundry or go to the drugstore, 3 blocks away.
I think anyone who is so cavalier and thoughtless about our disease should have to live with it for a week.
Excellent post – very well-written and oh, so accurate and familiar! “Maybe you need vitamins” and “try getting outside for some fresh air” were just a few of the tips I received early on in my illness from one of my very closest family members. I like how you addressed this very sensitive topic with humor rather than anger.
Sue
Live with CFS
I always salivate when Joe writes! His brilliant humor and bullet-proof intelligence just gives me the chills. Of course we all have a Dear Friend, but I have a tactic: I don’t ”understand” them; sometimes on purpose.
Thanks, Joe.
The big problem for me is the dear friend that lives inside my head. Even after many many years of this plague, most of it in bed. Denial can be a good survival tool I am told, as long as it doesn’t control me. Sometimes, though, it takes the reins. Trying to live with my own expectations of myself and what I want to do and what my dreams were and are, prove harder then dealing with those not looking back at me in the mirror.
THIS! Cheryl, this is exactly my problem too. I would find it easier to disregard Dear Friend speaking from outside me, than the Dear Friend in my head.
Thanks to Joe for writing this article.
To the Carollyn who commented above, Your comments are also what I struggle with, partly due to doctors and ‘counsellors’ and friends I valued at the time in the early stages telling me this rubbish. Also, I’ve always been one to doubt myself and hold high expectations, besides hating to quit a project midstream or mid-thought.
I had a grandfather who suffered migraines every day of his life since he was a toddler. He could never remember a day without a severe headache, but he went to work as a builder every day, only staying in bed if he had a serious flu. I took him as my example. He was a hero to me. Not such a good one for me now where illness is concerned!
Some current ‘CFS/ME’ experts/researchers are even saying that we shouldn’t take naps during the day, because it makes sleep patterns worse overall, but if I don’t take a nap, I will just fall asleep at 7 pm instead and then wake up at 3 am and start again. By 10 am I am a total wreck… the wretched cycle never ends. The ongoing exhaustion/sleepiness are crushing no matter what.
They DON’T understand at all. And trying to have ‘rest’ periods means having the awful pain comes front and centre with no distraction or means to alleviate it, much less meditate. I can only meditate when the pain gets a little less intense, and then I tend to drift off into sleep (not bad).
We seem to need to do continual self-monitoring to be kind and reasonable in our daily struggles, while at the same time shutting out the disturbing voices that give bad advice. It is a nearly impossible task while wrangling with pain and P.E.M. and the need to get ourselves to the toilet, (for example).
Much appreciated content here and great humour and spirit, everyone!
About naps, if I don’t nap I won’t sleep well at night. I think that taking a nap means that I won’t push into a “second wind,” tapping the adrenals when then can’t be quieted when I need to sleep, setting off a wobble, a cascade of worse health. I wish there was a warning of some sort–“danger, you’re about to enter adrenal overload! Look for the nearest exit and lie down!”–but alas, as hard as I try I can’t feel the approach or even that I’ve crossed that line. For some of us, napping is essential, for others it disturbs their balance. We all come to know and treat ourselves, trusting what our body tells us over what an expert says, even great experts in the field who we respect.
Oops, I meant that Laura Hillenbrand could not go out of her house for two years.
Tamping down one’s drive is one of the hardest things we do. We are all doers. When we have to stop ourselves from activities, even mild ones, we feel awful. We have to keep on modifying our goals, our wishes to be productive.
I say this as my library fines mount as I do not have the energy to walk the two blocks and am worried that I’d fall. I tried to do this type of errand about 14 months ago and fell and broke my arm. So, it weighs heavily on me to go outside when exhausted.
Have you considered a walker or cane to steady yourself ? Even if you are too wiped out to go to the library, if you are feeling that wobbly from this plague, it might be good for around the house in those times. As you found out, breaking things is a trauma to the body and sets those dreaded dominos of payback off. You don’t need more. No one does.
Best.
If you can, ring the library to explain. They might waive any overdue fees – mine always does.
Brilliantly well written, Joe!
Sorry, I meant to address part of my comment to Cheryl; not Carollyn. Reading is not going well. I need rest.
Great post, Joe. Thanks for sharing!
Thanks for all the advice about not falling.
I used a cane until last summer because I had broken a femur and ankle years ago so I always used one. Then last summer I nearly tripped over it while carrying groceries and opening a door. So, I leave it home. And I can walk around the neighborhood without it.
Ten days ago, though, I went with friends to dinner and a play, the first time in years. A friend had to help me walk to the theatre as I felt like my legs were giving out; they were shaking. So, I guess no more dinners and plays.
When I am really exhausted carrying a cane is a hindrance. It’s too heavy and
a hassle to carry and I trip on it. A walker would be impossible for me to get
around my apartment; there is no room for it in many places and it would
be a hassle. I couldn’t go outside with it due to stairs in the lobby and I
couldn’t manage it.
At home last night I thought my knees would give out. This is a recent
sensation.
Also, the fact that I’m barely sleeping isn’t helping. Four hours at most is
the usual. Last night the adrenals got going and I slept for an hour, then
ultimately crawled back to bed for two hours’ rest; it wasn’t even real sleep.
On the library, a new system was put in place a few years ago. I used to
be able to ask a librarian to waive the fines, but now it isn’t done. I did
get a reprieve when I broke my arm and found a sympathetic librarian to
renew everything for weeks without fines. But not so any more. It means
just accepting that paying the fines is part of the ramifications of this illness.
This was such a great write up, thank you. I often want to kick myself for not being able to live up to certain things that others in our Community are doing: writing books, writing blogs, raising money (I’ve tried, and hope to try again), starting/maintaining web sites, making movies, creating pre-med internships, doing art, writing letters, interviewing doctors, traveling to/living in the desert, etc. etc. There is so much talent – and different kinds of energy out there…. and it’s frustrating to not be able to “rinse/repeat” as others are able to. Your blog helps me realize it’s ok to go easy on myself: I’m not so unique after all. Thank you.
Oh I so relate to this! The most well meaning friends focus on how I look or sound and tell me I must be getting better because I “look fine” or “sound peppy “. Arrrrgh! Thanks for all you do to help those of us who need a voice. It’s much appreciated!
Well, I don’t think Ms. Hillenbrand got away with anything. She developed a new symptom of constant dizziness so bad that she cannot read down a page of type on the computer. So she has paid for it. We all do it would seem. I as well as I thought I could undertake a new project (last year) and had been pushing myself for years (even though I was sick). And man, did I pay for it! I relapsed hard last August and I haven’t been the same since.
I love this post. I have suffered from “If Laura Hillenbrand Can Do It, Why Can’t I” syndrome since a friend sent me the first New Yorker article about her. I am finally learning that to compare myself to anyone else – or to listen to anyone else who compares me to anyone else – is completely unhelpful. It’s so trite to say – and it’s so important to learn. Thanks.