On becoming visible

On Becoming Visible

RA Guy Adventures of RA Guy 17 Comments

Over the past few weeks the invisible nature of my rheumatoid arthritis has slowly been slipping away, little by little. Anyone with an eye to detail could see the wrist guards and ankle protectors peeking out from underneath my clothing. (Who am I kidding? Even if they did not have an to eye detail, they could still see them.) When the superhero gear comes off, things are not any better. My swollen red joints blink like Rudolph’s nose – once again, not too hard to miss. But last night the final effects of my invisibility cloak wore off – my walking cane came out of the closet.

I have two wood walking canes, one black and one brown. Like a good scout should always has two belts (black and brown) so must a superhero have color coordinated mobility aids. My mother once gave me a folding leopard print cane – I’m not making this up! I kindly told her that she might want to find someone else she could give it to as the chances of my using it were very very slim.

A few years back I was in New York City for a short visit. (I went to college in NYC and always enjoy returning and seeing how much the city has/has not changed.) One day I went to the Cloister to see the famed tapestries, then swung over to the Met to see the Egyptian temple, and then was walking down Fifth Avenue when – BAM! – my knee gave out like a flat tire. (Weeks of constant inflammation had finally caught up to me.)  My walking cane was, of course, at home thousands of miles away.

Needless to say, I had to cut short my plans that afternoon and find a way to get back to my hotel off Columbus Circle. So there I was in midtown Manhattan, bad knee, desperately wondering where the heck I was going to find a cane, when across the street I see a neon “Shoe Shine” sign flickering in a storefront window. It was sort of eerie, I know – just like the movies when some odd little store appears out of nowhere just at the right time (and usually selling items that carry some weird curses).

As I approach (half limping/half dragging my left leg) what do I see? A display of about a dozen walking canes, right there in front of me. I can not believe it! I get right up to the window, when – uh oh. All the canes have big silver handles in the shape of a duck, a steam engine, and who knows what else. No offense to any of my fellow superheros who happen to use this style of walking cane, but as a young guy in my early 30s (at the time) it just did not seem to be my thing.

A quick visit into the store revealed a larger collection of less flashy walking canes. Yes! I chose a classic black wood cane, had it sized (they had a saw – who knew?) and continued on my way. My sister’s wedding was coming up in a week, so I thought this new cane would go well with my tuxedo. (It did, by the way – luckily though, my height did save me from looking like Danny Devito playing the Penguin in Batman!)

Uh, I got into a cage match with my immune system, and my immune system seems to have won.
So back to the present moment of today, I once again have to get used to the laser vision stares that come my way as I walk down the street. A seemingly healthy guy with a cane just seems to draw a lot of eyes. For some reason, strangers always feel the need to ask me what sport I was playing when I got my “injury”. Uh, I got into a cage match with my immune system, and my immune system seems to have won. I am tired of pretending to be a soccer player, but they always seem to like that response and leave happy. (I used to answer by saying that I had rheumatoid arthritis, but that never seemed to work — too many blank stares, and too many comments on my age.) I was once even asked if I had gotten hurt while mountain climbing. How adventurous of me, no?

I am hopeful that the inflammation will come under control in the near future, and lighten up the grip hold it has on my joints at the moment.  In addition to bringing the cane out of the closet, I also had to upgrade my right hand’s wrist guard from the wrist model to the full forearm model.  (Don’t forget, my wrists are not happy campers either at the moment.) I have to be careful that any strain that I am transferring from my foot to my cane does not cause further harm to my wrists.

So for now, Rheumatoid Arthritis Guy’s superhero nature is just a little more visible as he walks down the street.  Next time you see a young guy walking down the street with a cane and are wondering if he twisted his ankle in a pickup game of basketball, stop – and tell yourself: He just might be a superhero!

If you have any personal stories – serious or silly – about canes, crutches, and other mobility aids, I would love to hear them!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 17

  1. Milicent

    I have added your blogsite to my favorites, because you have a way of making something very serious into a most enjoyable read. My daughter was diagnosed with RA a year & a half ago, & it is a constant journey. Hang tough, RA Guy–you have my admiration & respect for fighting this battle & making it sound like it’s just another day at the superhero office!

  2. Amy Vandyke (aka BeautifullyBroken)

    *lol* well i was diagnosed with ra when i was 6 yrs old, i am 27 now, so needless to say i have gotten alot of glares as i am hobbling along on my cane or crutch. i would never have thought to tell them i got into a cage match with my immune system *L* thats soo perfect. i love your light hearted approach to all of this. it does help with dealing. i have always been sort of a class clown when it comes to things like this. i hope you feel better soon. with summer here now we can always go out to bake in the sun for a little bit.


  3. Cathy

    Many people have suggested a cane but I always wonder….is it difficult to use if your wrists are sore and weak? It seems like you can’t have any inflammation in the wrists to use a cane. Do you find this to be true? Thanks, Cathy

  4. Post
    RA Guy

    Milicent, thank you for the kind comments. Amy, glad you could share my humor. Cathy, it’s complicated trying to use a cane with wrist problems, I’m still warming up to it myself. I don’t think there is any idea solution, but right now I am trying to use a forearm brace that protects the wrist and hand as well. It it not relieving all the pressure on the wrist but it is helping a little. Maybe down the road I can share how it’s working out for me.

  5. Kali

    Personally, with my bad wrists, forearm crutches are a better choice. I have a pair of these – http://walkeasy.com/shop/product_details.asp?ProductCode=490 (but in the kids’ size, because I am very petite).

    A couple months ago, I was walking down the street, on my way from my apartment to class. This random person walking the other direction said to me ‘I’ll pray for the Lord to heal you!’

    I said, “Well, He made my genetic disorder, so I think I’m stuck this way.”

    The other person was quite flummoxed. Apparently the idea that not all of us PWDs like people pitying us and praying for us was a shock to him.


  6. Erika

    I have the Dr. House flame cane made by the same company that made his for the show. I like to think it gives me the appearance of going faster, with the flames and all.

    One of my friends had a hay day with my rinky dink in case of emergency fold up cane. You know the kind with the bungee cord on the inside? She’d fold it up and then *snap* it would unfold itself into place.

  7. Robert

    “Uh, I got into a cage match with my immune system, and my immune system seems to have won.”

    Hahahahahah… I’m still laughing. Your magnificent sense of humor will certainly help you along ’till you’re an old man.

    I wish you a long life, dude!

  8. Pollyanna Penguin

    Must be great to have the physique to get away with saying you’re a soccer player though … if anyone saw me hobbling about (which they rarely do – I have two canes but largely they live in the car!), they’d probably just assume I fell down the stairs … or strained myself changing the TV channel or something …

  9. Stephanie

    I just came across this post and had to laugh. I was only diagnosed back in March of this year but I am already starting to need extra help both from family and in the form of splints, braces, etc. And though I really don’t want to admit it at times a wheelchair sounds really nice. The other day I woke up not feeling so great but my mother was going to take my 2 1/2 year old daughter to her first zoo visit which my husband and I were planning on attending. I didn’t want anyone to know how much I didn’t want to go because I didn’t want to miss it so I went anyway. Thank God my husband brought my daughter’s stroller with us, by the end of our 3 hour excursion (We stopped for 1 hour to eat) I could barely stand up much less walk. My husband could plainly see how much pain I was in so he took our daughter out of the stroller and demanded I sit down. He refused to move until I complied. Now can you imagine how stupid I felt (and looked)? 22 Years old sitting in an infant stroller with my child walking next to me? Ha I had to laugh anyway. Ultimately I hobbled out of the zoo instead of taking the ride of shame. Luckily we were at the last exhibit by the time I had to get in the stroller. I guess you got to get to the point that you don’t care what other people think but I am just not there yet. Thanks for the humor, it really helps keep me going.


    Two comments: 1) I have both of my wrists fused, 8 inches of titanium ribbons run thru each one. I also use forearm crutches, because the hand hold could be angled correctly—-because I cannot bend my wrists at all!!
    2) As for being in a cage fight, I do have a story!
    Long ago and far away, I was living in northern Colorado. It was during the Cheyenne WY Rodeo, and everyone in town was eat up with the Rodeo. I met a young man who pointed at my cast (can’t remember what it was on) and asked: “IS IT A RODEO INJURY??” I was too startled to reply YES, but in another Time Dimension I did!! What a great idea…. a Rodeo injury, for me, the ultimate couch potato.
    I have had RA for 37 years and still going. I am 57 now… If anyone ever asks me again why I use crutches, or my wheelchair, or why I am in a cast, or whatever, I will reply: IT’S A RODEO INJURY!!

  11. Gillian Pidler

    Hi RA guy, I have secondary OA in my hips now and about 5 years ago I had to ‘give in’ and buy a cane. I went for a purple candy stripe one, I always said if I had to have one, it’d be a groovy one!! I get a lot of looks as I’m only 43, I also get a lot of people ask me ‘what have you been up to then?’. I usually tell them I have RA and OA but I really should think of a cool answer like yours!!

    Stephanie, I hear ya!! I have used a wheelchair on a few occasions now, I hate it and always feel like I’m ‘in the way’, but I’ve learned that in order to enjoy those long days out with my kids, sometimes I just have to give in. I am stubborn though & I will wait until I can’t walk another step.

    This blog always cheers me, even on the worst days. Thanks RA guy 🙂

  12. Susan Kirk

    Hey! I was doing a google search for mobility aids for RA and by golly this blog was the first on the “hit list” I am impressed 🙂

  13. Bomber

    Denied I needed a stick for months, then after finally choosing one I had to momentarily leave the shop before paying because I didn’t want salesperson to see the tears in my eyes.

    Within weeks I admitted an electric scooter was also needed to save my knees and feet. Borrowed one from the shop where I was buying from to “test it out”. It was ex-hire from the local shopping centre and was covered in “Compliments of Eastland” stickers. First night I used it was at the footy and the kids refused to walk with me coz they reckon it looked like I’d stolen it.

    I still silently cry every time we are out and my wife has to cut my meal or I make a mess dropping everything over me.

    “Coming out” is almost daily still the hardest part of the disease for me.

  14. Shannon

    Bravo! As a fellow autoimmune superheroine, I wholeheartedly applaud your gusto and vigor for approach to life. I appreciate that you subtly weave the emotional weight of these diseases into your seemingly effortless humor. Thanks for this. Today, I don’t need my cane, but I plan to re-read on a day when I do.

  15. Laura

    Applause for the RA Guy! I too have RA in my knees hands and wrists. I haven’t yet gotten the inflamation under control. I sure can relate to the laser stares. Especially when I am forced to use one of the provided scooters at the area department store.
    As much as possible I try to just use the grocery style cart. I had one comment by a guy who while admiring the cane I made for myself, said “that would make a dandy weapon”. At that moment I sure do wish I would have had your quick wit. Way to go.

  16. Rob Carson

    Fantastic story RA Guy.
    I too came across your page on my search for more comfortable crutches; So I bookmarked your site, and carried on with my search. I think I found a pair that will do the trick. I’m used to coping with the pain in the wrist and hand, and like you try make light of it (but not as eloquent as you I might add)
    I found these goodies at http://smartcrutch.co.uk and can’t wait to try them out as the reviews seemed pretty genuine to me.They had good reviews from users of RA, OA and EDS as well.
    I’ll be back to let you know how it went ( I should receive them by the beginning of next week)
    Thanks again for the great post 🙂

  17. Vickie

    You’ve verbalized exactly what’s been bothering me. I have mild RA (30 years old) which was so well under control that the doctor reduced my medication. A couple of months later, the foot pain started to come back. It began with pins and needles of a morning, but has now progressed to the point where I can barely walk some mornings. My left foot is especially bad and has to be squeezed under protest into trainers some days. By the afternoon, the pain and stiffness has considerably diminished, but the ghost of it still lingers.

    My boyfriend and I purchased a pair of crutches for me to use when things are unbearable so that I can at least get to work. Like many others here, I cried when they came out of the box. Until that point I’d been able to deny what was happening to me. But it’s hard to ignore two great metal sticks propped up in the corner of your room.

    I haven’t had the guts to use them yet – even when I’ve been in agony. I feel embarrassed by them. And, as you say, conspicuous. Deep down, I know that they’re nothing to be ashamed of. They’re simply an aid to get me through this rough patch until the higher dose kicks in again. Or two handy weapons, as my wonderful boyfriend pointed out.

    But your post has inspired me. Today, I am working from home because the pain yesterday caused me to break down into tears (much to my humiliation) in front of numerous coworkers, including my boss. If I had used the crutches to get to work, that wouldn’t have happened. So on my lunch break today, I’m going to go to the shop on them. It’s only a few minutes down the road and the pain isn’t as bad as yesterday, but I’m hoping that it might help me get used to using them in public. And then, the next time that I really need them, I may not hesitate to break them out.

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