Not Defined By Ignorance

Every day there is a new reason to work harder at maintaining some Zen for my own good.  Every day there are bigger challenges to keeping a focused and uninflamed mental state over the things with which I am confronted and it’s not easy.  There is always someone that thinks they know what your life should be like when you are ill and/or disabled.  Always someone ready to tell you what you cannot or should not do.

I would love to be able to tell you that I can just let it roll off my back.  I am not there yet, and I don’t know that I ever will be there 100% – remember I said that I would be honest about these things?  It DOES bother me when people say ugly things.  I’m not saying that I always deal with the feelings poorly, because that varies.  I am just saying that it generates a lot of emotion for me, and it probably does for every single one of my autoimmune community pals too.  We face not only the challenges, limitations, and pain, but the invisibility of our ordeal.  So on one hand we’re trying to juggle the judgment that comes with being limited, and on the other are the judgments about whether or not we really are.  I still need a hand for dealing with my actual illness, and then the challenges of moving back into an athletic world again…. hey, I’m out of hands here!  I have been athletic.  I have been challenged.  This thing of being a challenged athlete is new… and I am finding some very unpleasant aspects to it out there.

What set this off?  I’ll share that.  A conversation on a post on Outside Magazine’s Facebook page.  I’m not laying any blame on OM, so don’t go saying that to anyone.  I love their page and their posts.  It’s the rude commenter that I am addressing here.  Great post about a paralyzed mountain biker that isn’t letting the situation stop him.  I am already a tremendous fan of what the BASE jumper Lonnie Bissonnette does for this very thing – getting back on the horse that threw you.  Right?  We can all learn from that.  If you loved it, why stop?  Fear?  Fear of what?  For a long time I stopped all of the activities I loved too, because I feared the pain and neurological short-circuit that could incapacitate me.. having been there so many times.  Eventually, I found a way to recover enough capability (with the help of a GREAT sports PT place) to take those things back.  That’s where I am at now, and continuing on.  So anyway… this is the conversation:

Commenter: “How is this guy incredible?  If you’re paralyzed please stay off a mountain bike.”

Me: “So those of us with illness and disabilities don’t have a right to recreation and enjoying our lives??  What is wrong with you??”

Commenter: “I never said that.  If you have no use of your legs don’t get on a bike.”

I kinda blew up after that… a short rant, and I didn’t cuss at him.  I won’t tell you what I blurted in the privacy of my own home though.  As I said… being both challenged AND athletic at the same time is fairly new for me, and I have not had to deal with this particular form of prejudice up close and personal before – other than having medical “professionals” in the past tell me what I could never do again, anyway.  When did anyone get the idea that they have a right to define us and tell us what we are allowed to do in the sports world with our own bodies, our own time, and our own aspirations???  I do not understand this mentality at all.  In some way or another, I have been in this bubble surrounded by other damaged people that understand my pain… and they are for the most part pretty encouraging.  I kicked loose anyone that wasn’t quite a while ago.  If there is one thing I hate it’s being told that I shouldn’t do something because it’s risky or I might get hurt.  I’M ALREADY HURT.  I am permanently damaged.  I have a lifetime of hurt, and it’s not going away, so at some point I’d like to have some fun again in the middle of all that.  I’ll say this again, and again, if I have to… I don’t know what it is like to be pain-free like some people with Lupus do.  I don’t have a time to look back on where something hurting every day wasn’t a part of my life.  According to the mentality of people like this guy, I should zip myself into a bubble suit and not leave the house.  God forbid I try something that requires some type of special assistance, or try to do something without it just to see if it is possible again.  I’m photosensitive, so I should stay out of the sun.  Never mind that there is UPF clothing, sunblock, and hats.

?????????????!!!!!!!!!!!!!!!!!!!!! (That’s in lieu of a scream.)

I like to think that the overwhelming majority of people out there are not like this individual.  I believe that is the case – I have to.  What I find disturbing is that he is however far from alone.  There are too many people that would prefer to sequester those of us with inconvenient differences, as if it will make their life more convenient in some way.  It’s not about them!  In that moment when you take on a challenge that is sometimes even terrifying, it’s only about you and how you face it down.  Secondary in my own mind is all of my dear friends that are living the same traumas that are so much loving the vicarious involvement, and they are always there.  At times I have to put myself in check for worrying about letting them down, in fact… in the most difficult moments when I am questioning my own ability.  That happens about… every other day.  *smiles*  I do not feel like I am doing this for myself alone, in any case.  So, when I see someone speaking this way about another strong individual that is not letting a setback be a stop sign, I get very defensive.  It makes me mad.  I have said before that I don’t hit “mad” often… but today I am mad.  This is the type of thing that does ruffle my feathers a lot.  We that live with disabilities have enough to manage without someone new coming along and trying to sit us down in a corner.  They always act like it’s sensible and right.  Why?  NO ONE has the right to tell any of us whether it is acceptable to take on a challenge or not.  That is a very personal choice.

Maybe this will take some time for me to adjust to hearing.  It won’t become a thing that I care less about though, because anyone walking around with that mentality can be a danger to someone in a fragile state of mind.  I have seen it with the newly diagnosed in the Lupus community many times over.  Already feeling scared, confused, and thinking they have been given a death sentence, they turn to the internet for answers… and if they run into the wrong person, the responses can be devastating.  I had it done to me as well, early on.  Not everyone will say the right things to calm that fear and tell you that your life is not over right there.  Some of what is said to the newly diagnosed is outright offensive.  I will keep dragging everyone back to the challenge of reclaiming quality of life, no matter what.  We have a right to it.  Disability does not take that choice away.


Hiking in SPT



3 thoughts on “Not Defined By Ignorance

  1. Right this moment, I could not choose an easier path if it were magically offered to me. The adversity of my experience has made me a part of the lives of others in a way that I do not regret. If walking through the proverbial fire has given me sincere empathy and compassion for others that have also been burned, then I can take the heat. My life was hard from day one anyway. I don’t know any other way to be. I am more than okay with being part of a challenged community.

  2. I found that with age came the ability to disconnect from negative comments. I was visiting my daughter and in a wheel chair at the airport. I overheard a man commenting to his wife…she doesn’t need a wheel chair! Hmm. It was obvious he was talking about me, his disgusted glance was directed at me and he made sure I heard him. There was a time I would have been enraged. I would have rolled up my pant legs to reveal the railroad tracks that run up both my legs from 7 knee surgeries. I would have taunted him asking if he knew that I had a heart attack, that I had two hip surgeries and back surgery. I would have asked him if he knew what it was like to live with SLE and RA. But I said nothing. I let him stew in his own disdain and I laughed to myself. Because the truth is that I really don’t care what he thought of me or that he doubted I needed that wheel chair to maneuver the airport. I’ve learned that what people think about my disability doesn’t matter to me at all. I’ve found peace with it. I know that I needed that wheel chair, I know that there are days that I really need my handicap placard and days that I don’t. On those days that are good ones, I leave the handicapped space for someone who may need it more than me. And I don’t feel at all guilty or enraged when I get out of my car when I use my placard and get a glance from someone who is judging me and assuming I don’t need it. Truth is, I just don’t care what anyone thinks of me. I’ve found peace with my disability and I have nothing to prove to anyone.

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