 # Walk Like a Normal Person ## A short-short about living with ankylosing spondylitis ### by veckinon I used to play this little game when no one was around. I would stand up and try to walk across my living room like a ‘normal person.’ No crutches, no cane, at a reasonable pace, without any noticeable limping or spasming. “Maybe it’s not as bad as I think.” I would tell myself. “Maybe, if I just focus.” I would count how many steps I could take. Sometimes I could muster a few, pretty good, normal looking steps; almost making it half way across the room before I couldn’t hide it anymore. Other days, I wouldn’t be able to walk at all, or even stand up unaided and the pain would rule every cubic centimeter of my being. On those days I couldn’t help but wonder if that was how it was always going to be; if I would ever walk normal again? There had been other times in my life where things had gotten worse and had never gotten better again. Would this be one of those times?  *A 'not so good' day* These bad spells would sometimes last minutes, sometimes years. They almost always came on very quickly, and they always brought that fear. It turned out that sometimes, when I told myself that things might not be as bad as I thought, I was right. But, more often, I was mistaken. It also turned out that all the focus I could conjure, would at best, only allow me a few more moments of faking it. As time went on, I played the game less and less. The need to convince myself of my situation waned as did the idea that I had to hide it from others. It didn’t matter how many normal steps I could take on a good day. It still wasn’t who I was. I grew to accept my body to some degree. It is like that piece of shit car you owned, just out of high school. It is battered and beaten up. It is missing parts. It runs like shit and you never know when it isn't going to start. And every time you turn on the windshield wiper it makes that horrible screeching as the metal scrapes against the glass. But every once in a while, it gets you somewhere you need to go. And for that, you love it. That's my body.  *a better day* So, I am no longer concerned about walking like a normal person. In fact, it often seems other people are more concerned with it than I am. “Have you tried this,” they will ask. Secretly hoping (sometimes without knowing it) that I came to this state through inaction or lack of experimentation, or maybe because I simply had not heard of the cure. In some cases, unconvinced or unaware that it could happen to them; that they too could lose their ability to walk like a normal person. It turns out that some people just don’t walk normal. Some don’t walk. Some people walk normal some days, but not others. It turns out that some people walk normal their whole lives, and then one day they just don’t anymore. And that is just how it is. So, I no longer worry about walking like a normal person. I still fear the pain though. This was a brief story about living with Ankylosing Spondylitis. Ankylosing spondylitis is a painful and debilitating form of inflammatory arthritis. It is similar in many regards to rheumatoid arthritis. However, it can also have extensive involvement with the spine and connective tissues and may affect the eyes and digestive system. In some cases it can also cause fusion of the vertebrae or the SI joints. Ankylosing Spondylitis (AS) is found in higher rates among people who have other autoimmune diseases. I, myself, have also been diagnosed with Crohn’s disease, a systemic autoimmune disease that primarily affects the digestive system and idiopathic restrictive lung disease (which is just doctor speak for “your lungs don’t work right, we don’t know why.”) These conditions have had a pretty profound effect on my life and my outlook and I wanted to share some stories about living with them. If you enjoyed this piece, feel free to check out some of my other work and thanks for looking! Best wishes, @veckinon
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| author | veckinon |
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It takes courage brother, to be vulnerable, to show the not so pretty sides of ourselves... So even thought we don't know each other, I'm proud of you for being strong enough to put yourself out there like this. We think sometimes as humans, that its best to keep these thoughts to ourselves, but it's only when we learn how powerful, how life changing it can be to share, when we find a different kind of healing... I'm so glad @dflo invited you, I'm glad she asked me to make you an account... If I did not say it the first day... Welcome home man...
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Thanks a lot @meno. I really appreciate all the help I have received from @dflo and you here on steemit . This has been a very positive experience for me so far and I am very happy to be here. Thanks again.
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@meno you are just the best . <3
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you my friend are a brave one. For accepting yourself , loving yourself and moving forward. That in a sense makes you much stronger that a lot of us. Thank you for sharing this piece of you with us , I admire your bravery my brother . And welcome again , feel supported by us anytime you need it. Cheers .
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Thank you so much for taking the time to read my post. I'll admit it took me a long time to get where I am now, and I still have bad days. But my condition is what it is, as far as I can tell, and coming to terms with that has been necessary for me to realize I can still have happiness.
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<p>Congratulations! This post has been upvoted from the communal account, @minnowsupport, by veckinon from the Minnow Support Project. It's a witness project run by aggroed, ausbitbank, teamsteem, theprophet0, someguy123, neoxian, followbtcnews, and netuoso. The goal is to help Steemit grow by supporting Minnows. Please find us at the <a href="https://discord.gg/HYj4yvw"> Peace, Abundance, and Liberty Network (PALnet) Discord Channel</a>. It's a completely public and open space to all members of the Steemit community who voluntarily choose to be there.</p> <p>If you would like to delegate to the Minnow Support Project you can do so by clicking on the following links: <a href="https://v2.steemconnect.com/sign/delegateVestingShares?delegator=&delegatee=minnowsupport&vesting_shares=102530.639667%20VESTS">50SP</a>, <a href="https://v2.steemconnect.com/sign/delegateVestingShares?delegator=&delegatee=minnowsupport&vesting_shares=205303.639667%20VESTS">100SP</a>, <a href="https://v2.steemconnect.com/sign/delegateVestingShares?delegator=&delegatee=minnowsupport&vesting_shares=514303.639667%20VESTS">250SP</a>, <a href="https://v2.steemconnect.com/sign/delegateVestingShares?delegator=&delegatee=minnowsupport&vesting_shares=1025303.639667%20VESTS">500SP</a>, <a href="https://v2.steemconnect.com/sign/delegateVestingShares?delegator=&delegatee=minnowsupport&vesting_shares=2053030.639667%20VESTS">1000SP</a>, <a href="https://v2.steemconnect.com/sign/delegateVestingShares?delegator=&delegatee=minnowsupport&vesting_shares=10253030.639667%20VESTS">5000SP</a>. <br><strong>Be sure to leave at least 50SP undelegated on your account.</strong></p>
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This is an awesome piece of writing. It really shines a light on your feelings and perceptive, in a very personal way. I love it. Thanks for sharing your talent with the world and for being here at Steemit. I am proud that you are my friend. <3
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Awwww thanks, buddy.
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Beautiful and courageous post, @veckinon. Reporting on your lived experience both informs us about the specific challenges associated with ankylosing spondylitis and lays bare the process of acceptance of personal challenges. Such first person narratives are so much more compelling than third person prescriptive statements like "_To deal with X, you should do Y and Z_" offered by "experts." In the quest for objectivity, the latter can sound preachy and emotionally detached. Sharing your subjective shared experience engages us emotionally and inspires us to consider how we can adapt your learnings to the different challenges we all face. As others have said, I honor your courage and vulnerability in sharing this story.
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I agree. There is a power in story-telling that cannot be matched by reciting facts and statistics. As a more 'science-orientated' person, I sometimes forget how powerful and (as @meno mentioned) healing this can be. Thanks for checking it out and joining in on the conversation.
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I had never heard of this before. It takes courage to really not care about what people think, and too many spend their lives trying to gain the acceptance of others. Thanks for sharing the insight you have gotten from Ankylosing Spondylitis. It's always good to be reminded to not take things for granted.
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Yeah, it is not super-rare, but just rare enough that most people don't know about it and that spell check still thinks it is a mistake. It falls under a blanket categorization of arthritic conditions referred to as spondyloarthritis (meaning arthritis of the spine, even though it involves much more than the spine). The most common condition that falls under the spondyloarthritis umbrella is psoriatic arthritis, which a lot more people are familiar with. As always, thanks for looking!
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Hey @veckinon, it is so cool to have you here in the Steemit community. I'm glad you decided to take @dflo up on getting a blog started here. I didn't know the name of this condition before reading your post, so I must say it was informative, especially being shared by the person who has been living to share the narrative. I respect the bravery it requires of a person to live and share openly about what they have endured. I live with a permanent disability, myself, due to a sternal reconstruction from post-cancer recovery and I seriously applaud your willingness to allow us to know this side of yourself.
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| author | intuitivejakob |
| permlink | re-veckinon-walk-like-a-normal-person-a-short-short-about-living-with-ankylosing-spondylitis-20180226t051526064z |
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Thanks for checking it out. It is great to know that I am raising awareness around this condition. It is also great when I can learn a bit more about others. Sternal reconstruction, that sounds pretty intense. I bet it really sucks in winter time. Was that the site of the cancer or was it due to necrosis or something? If you don't mind me asking. I'm pretty sure I have seen you in the rms discord. I imagine we will run into each other again. Best wishes.
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Hey man, my pleasure, and I'm happy I got to learn more from you. It's so much more fulfilling to be aware of the people in our midst. I've come from people who would rather shove others away or shove the truth under the rug. It's caused me a great deal of healing to be reversy about what I was taught, in those regards. Yeah, the sternal stuff has been intense. Barometric pressure is ughhh at times. *lol* But yeah, it was removed because of the spread. Fortunately, I'm doing very well and have been exceptionally lucky to have become a yogic practitioner on the way to this having occurred. It has given me a certain grace in mobility that is unprecedented for the actual "condition" I am in. Yes, I'm in RMS and am happy we're connected there as well. Look forward to following your feed, my friend.
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You are a very strong person, always remember that my friend. I cannot imagine living with such a condition and it takes an incredibly resilient and tough person to not only deal with this struggle but be willing to spread awareness within the community. Thank you for sharing this and always continue to fight!
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I really appreciate you taking the time to read my story and thank you for the kind words.
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| permlink | re-terminallyill-re-veckinon-walk-like-a-normal-person-a-short-short-about-living-with-ankylosing-spondylitis-20180227t102041626z |
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As a car guy, I was totally able to relate to the way you used that Analogy there, I myself sometimes end up using car-related analogies them when I try to explain something to someone, as I have a difficult time grasping the words that I am looking for sometimes. I had never heard of AS before, so thank you for sharing your experiences with us, I wish you the best and hope you will have many more of the better days.
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Thanks. It is the best way I could think to describe. Cars are one of the few non-living objects that can invoke such a large range of emotions.
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Wow amazing, intimate and beautiful post! I’m Glad I caught it in enough time to upvote. Thank you for this piece and sharing your story. Hugs.
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Thanks so much. I am glad you got to read it too. I really respect your opinion when it comes to writing and appreciate your upvote. Best wishes!
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Awwww that I saw omen of the nicest things anyone said to me! I’m fairly new at refinding myself as far as writing and still haven’t found my niche. Soooo still learning a lot. It’s no time easy. I guess what it is about blogging is openings ourselves up like this post, honest, original, and photos. Maybe we all just want to see something of ourself in someone? Yay! No worries that was after 12 hour shift on an overnight shift 😛
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I totally hear you. Totally. I have degenerative disc disease, fibromyalgia, am a traumatic brain injury survivor...it snowballs. I resent when ppl doubt your words concerning your disabilities. I want to smack them sometimes. They can be very rude. I also have spent years advocating for ppl with disabilities too. I am no longer able to work full time, and am trying to get on disability. Bravo to you for writing about your challenges!
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Thanks for reading and I hear ya. Hit me up on discord (same user name) if you need any help navigating the disability application process. I have been through it before and it can be a nightmare. Best wishes to you and I hope you have some pain free days in your future.
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I do. And I count myself lucky to have those days. Summers here are pretty easy on me.
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Thank you for sharing the good and the bad <3 I so admire your attitude and acceptance. You rock!! Pleased to meet you:)
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Thank you. And thanks for taking the time to read my post. Best wishes!
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The hardest thing to my understanding is not just living through it but is accepting that you have the disability that just wont go away. For that I applaud you. With the people that surround me, I can see that part is the hardest for them. One of those people is my friend's son who has Tourette's syndrome. Along with being teased and bullied by others, having to accept his disability is just starting and it is very hard. People's understanding to disabilities are also minimal. Thinking Tourette's is just outbursts of swearing but it isn't. I even had someone tell me they want to have the disability just cause it seems like fun to shout out 'shit' or 'fuck' randomly. Thinks its hilarious. Writing your journey is not only beautiful but also filling us with more information. With knowledge comes acceptance and less ignorance. Thank you for writing about it. For me personally, I appreciate you for doing this. It is hard for just one person to 'spread the word' to help people understand instead of point fingers. I'd love you hug you right now, what you have done is huge! I am sure you know this. Opening up to the world on steemit must have gotten your heart pumping just to write it, then pressing the post button, even more. High 5 man! Be you, be beautiful!
| post_id | 36,418,068 |
|---|---|
| author | foxyspirit |
| permlink | re-veckinon-walk-like-a-normal-person-a-short-short-about-living-with-ankylosing-spondylitis-20180303t132610421z |
| category | life |
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| created | 2018-03-03 13:26:15 |
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Thank you so much. It's true, posting this did get my heart pumping a bit. I was having a bad couple of days when I wrote it and really needed to get it out. And I am glad I did. Especially after the thoughtful and positive responses I have received.
| post_id | 36,449,735 |
|---|---|
| author | veckinon |
| permlink | re-foxyspirit-re-veckinon-walk-like-a-normal-person-a-short-short-about-living-with-ankylosing-spondylitis-20180303t173114414z |
| category | life |
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| foxyspirit | 0 | 1,547,540,355 | 100% |
Steemit is a good place to be. A lot of good people here. I started a contest today to help raise awareness and I shared your story in the post. Something I have thought about writing before but what better way to spread the word to encourage people to write about their own experience, I think its a good start. Here is the link if you want to check it out. https://steemit.com/contest/@foxyspirit/spread-the-word-contest. By the way I have been trying to upvote your post and for some reason it just won't go. Im going to try again, but I did resteem it :D
| post_id | 36,460,141 |
|---|---|
| author | foxyspirit |
| permlink | re-veckinon-re-foxyspirit-re-veckinon-walk-like-a-normal-person-a-short-short-about-living-with-ankylosing-spondylitis-20180303t183745347z |
| category | life |
| json_metadata | "{"app": "steemit/0.1", "links": ["https://steemit.com/contest/@foxyspirit/spread-the-word-contest"], "tags": ["life"]}" |
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| root_title | "Walk Like a Normal Person - a short short about living with ankylosing spondylitis." |
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Ok I am slow I just saw that you wrote on it :D lol. Sorry
| post_id | 36,460,319 |
|---|---|
| author | foxyspirit |
| permlink | re-veckinon-re-foxyspirit-re-veckinon-walk-like-a-normal-person-a-short-short-about-living-with-ankylosing-spondylitis-20180303t183854625z |
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