Being A Human Pincushion

I probably should’ve written this post closer to when these events actually happened, but, life.

I’ve made no secret that I’m not a fan of in office medical procedures, especially those that can and often are performed in an OR. It’s not due to fear of needles, but rather a dislike for the planning and upkeep involved. Call me crazy, and most people have, but I prefer a longer recovery for a “one and done” thing. Plus, I’m not good with keeping track of things that need to be regularly scheduled. If it doesn’t need to happen at least once a week or twice a year it just escapes me.

So imagine how happy I was to have 2 in office procedures scheduled for one day. It helps in the planning in one aspect but not in others.

I’ve accepted the idea that Botox injections once a year, with a few rounds of trigger point injections during the year, works for me. I’m still not a big fan but I’ve accepted it until another plan actually works.

I have yet to fully accept that the best course of treatment for lingering muscle strain is a regularly scheduled cortisone injection, even though I know every other alternative is less than preferable. The doctor in charge of managing my strain knows my concerns, so much so that she addresses them at each visit taking things on a case by case basis even though I think we’ve reached the point of a sustainable treatment plan.

I didn’t want to get Botox and Cortisone on the same day, but at the same time I just wanted to get it over with.

The Botox came first mostly because I know that 99% of the time the doctor in charge of that isn’t late. So there was little chance that the day would get backed up, but I did leave my mom in the waiting room with everyone’s contact information, just in case.

The appointment itself went OK aside from the fact that there’s another new medical assistant who asked me if I had fallen in the last 3 months. My guess is she’s not aware of the fact that people with CP can’t go 3 days without falling never mind 3 months.

I talked my way out of anesthetic and there were no residents hanging around so it was a pleasant appointment overall. Trigger point injections are scheduled for about a month from now but that can be moved up or back depending on how I’m feeling.

Then I was off to hospital #2 for the cortisone.

I actually don’t mind these kinds of appointments either the waiting and procedure prep (which is really just more waiting) is far from my favorite, especially when they ask you to arrive at least 15-20 minutes prior to your appointment. It’s times like this when I would actually bring something to read or other work, if it wasn’t for the need for a sterile environment. I realize that bringing a book probably won’t make a difference but I’d rather not take the chance with a very large needle going very close to my femoral artery, any and all chances for infection and/or bleeding need to be kept at a minimum.

What I neglected to realize when scheduling these appointments was that I would probably be jumpier than usual on the second round of sticks. I know there’s a high likelihood as is that my muscles may jump at the exact moment I need to stay completely still.

My PM&R knows this and knows just how to pin me down & stick me with only 2 hands at his disposal, although he could call someone else in he doesn’t need to.

The sports medicine staff has been more than accommodating when I tell them they’re going to have to pin me down even after anesthetic has taken effect.

As a result of my extra jumpiness I was given more anesthetic prior to the cortisone injection. So much so that I couldn’t feel a thing from my waist to my knee. It came to me pretty quickly that I was not told to bring crutches or my wheelchair to the appointment and I would need something to just get off the table, never mind put my shoes on, walk back down the hall, and then walk out to the car.

Thankfully I did have my wheelchair in the car so while I was resting for the mandatory 10-15 minutes I told my mom to go get the wheelchair and bring it in, because this time they were not going to let me go without using some assistive device.

I had scheduled a follow up in case I wasn’t feeling too great but that day has come and gone so I’ll schedule another appointment when I feel I need it, which will probably come in a few months.

At the end of the day, although it was long and got increasingly uncomfortable as the day wore on, I probably would be a “pincushion for the day” again. I would come better prepared however, like having one time use icepacks in the car, or asking for an extra when leaving my appointments, and having some OTC painkillers on standby.

About Help Continued

I had no idea this was going to go this far, but God had other plans I guess.

What stated with a Tweet:

“If someone with a disability needs help they’ll tell you & how. DON’T tell them what they need to do & how. That’s the worst thing to do.”

Evolved into a post*:

When someone tells you they need help ask how you can help them. It probably took a lot to even ask for help because honestly who really wants help. It’s like admitting weakness. To admit you need help you need to come to a point when you realize admitting your weakness might actually work out for the best. To turn that around on someone is at times just cruel, not to mention a break in trust someone had in you. Speaking for myself, I don’t ask for help from someone I don’t trust on some level, no matter how badly I need it (I have plenty of scars from bumps and bruises to prove it).

Help comes in different forms. I don’t like knowing I’ll need a lot of help from others, or at least I like to think that way, so I try and avoid it as much as possible. And if I do end up needing help I try to tell people I trust and I know they don’t usually mind it, and if they do they’ll be honest about it.

Ask how. Don’t tell how. In all likelihood someone’s put more thought into it than you realize. Attempting to think you know better, and then actually saying it, you may as well spit on them or slap them in the face. Not only are you not helping, you’re making someone wish they never asked in the first place.

Who wants to live in a world where no one wants to ask for help for the simple fear of being disappointed? Certainly not me, and I’m someone that needs some help from time to time (but find someone who doesn’t).  *portion of original post

Has now moved into conversation:

While spending time with a friend’s parents her dad told me about his recent experience with trying to help someone; which left him not wanting to help someone ever again (which I know he won’t stick to because he’s not that kind of guy). I should tell you that he is an amazing man & anyone to receive any help from him will not be disappointed. He’s also the type of person you can talk to about anything for any length of time; he may be a physician by trade but he’s been known to have conversations about church history, bridge structure, and wars in the 1800s without difficulty. So I thought explaining “the help thing” to him would be a good place to start if this were to ever become a thing.

I had my post, and previous experience, in mind when choosing to wade into the waters with this one. Unfortunately, things didn’t go as well as I hoped it would, which is totally my fault.

In the end I told him about Jennifer Rothschild’s book Lessons I Learned In The Dark. I had 2 reasons for this. The first being I know he likes a good read which this book certainly is. The second being I could never put the right words to disability before this book, but now I can, or at least I try. Really it just seemed like the best way to save my point the best I could, begin at the beginning and all that.

In the end I can’t remember what I said. All I can do is hope I did the right thing.

And have faith that one bad experience in trying to help someone won’t stop a person from trying again (and again, and again).

Because if it does that doesn’t help anyone at all.

Now that I’ve gone this far what’s next?
A book?
(God help us all)

*A similar version of this post first appeared on an old blog on December 9, 2011

About Help

I sent out a tweet I feel I should explain, because 140 characters just doesn’t do this topic justice.

“If someone with a disability needs help they’ll tell you & how. DON’T tell them what they need to do & how. That’s the worst thing to do.”

I should also mention that after I clicked “tweet” I realized the last part should be, “That’s not help,” but you live and learn.

I’ll attempt to keep this somewhat vague yet relevant since it does apply to several life areas, even if it basically falls into one of mine almost exclusively.

Growing up I always had help. I didn’t always need it, it wasn’t always given, but it was always there. In a lot of ways, I feel like my childhood was idea for an individual in my position. (I also had very few people to compare myself to before the age of 5 which I think also helped, but not really the point here)

More often than not someone could be heard saying, “She doesn’t need help, she’s got it,” or something to that effect.

People may have had doubts, but they were rarely voiced in my presence. And if they were, they were quickly shot down. I can only see now how helpful that in fact was for my wellbeing.

Somewhere into my late teens/early 20s the help changed. The pontificating started and has only increased. I may be sensitive to it, but that doesn’t mean it should be there as often as it should be.

It started in college. At the time I was attending a cousin’s alma mater, as I had planned, when he called me. We talked about life on campus, particularly dorm life, considering he lived in the same building a few years before. I had heard about the parties for years, particularly the rugby thrown ones, now he was telling me not to go. Was I a little disappointed? Maybe. I knew with age came wisdom so I took his advice, although not to the extent I think he was hoping for.

Upon graduation things took on a different intensity. It happens when you pick a career field people enjoy from a certain distance but few understand fully, no career services does not always live up to their name.

Now that I’m a not-so-new graduate things are different, yet the same. Most have established lives by now. Others are still free spirits. One group tends to “help” the other, whether they want it or not. (I’ll let you guess who)

A lot of discussions tend to take the same path, although well meaning, it’s often torture. You can tell where it’s going 2 lines in and you’re dying for a quick getaway, but you’re yet to find one, somehow.

I have to ask myself, “Did I do too good of a job proving that I’m pretty average? Why can’t people see that this is different for me?” not the heaviest of questions by far, but valid for sure.

I try to keep up the act but one day I had my fill. I had to point out that this wasn’t one of those times when a cute pep talk could straighten me out and pull me through the situation. I needed help, not advice. Help. Telling and helping really are two different things.

When someone tells you they need help ask how you can help them. It probably took a lot to even ask for help because honestly who really wants help. It’s like admitting weakness. To admit you need help you need to come to a point when you realize admitting your weakness might actually work out for the best. To turn that around on someone is at times just cruel, not to mention a break in trust someone had in you. Speaking for myself, I don’t ask for help from someone I don’t trust on some level, no matter how badly I need it (I have plenty of scars from bumps and bruises to prove it).

Help comes in different forms. I don’t like knowing I’ll need a lot of help from others, or at least I like to think that way, so I try and avoid it as much as possible. And if I do end up needing help I try to tell people I trust and I know they don’t usually mind it, and if they do they’ll be honest about it.

Ask how. Don’t tell how. In all likelihood someone’s put more thought into it than you realize. Attempting to think you know better, and then actually saying it, you may as well spit on them or slap them in the face. Not only are you not helping, you’re making someone wish they never asked in the first place.

Who wants to live in a world where no one wants to ask for help for the simple fear of being disappointed? Certainly not me, and I’m someone that needs some help from time to time (but find someone who doesn’t).

*A similar version of this post first appeared on an old blog on November 3, 2011

The Thing About Independence

I, like most people who live with a disability (I think) have a thing with independence.

I hang on to it with a death grip. If I can do something myself I want to do it myself because I don’t always have the luxury.

Like being able to open a door or carry my own suitcase through the airport (or even just to the curb). I understand that people want to help, and I appreciate the sentiment, but what many people don’t understand is the significance of being able to do something on my own.

I know a lot of people view me as independent but they don’t realize what it takes for me to be seen as independent (as is the same for many others with disabilities).

I have a pair of pants that illustrates my independence pretty well. My mom bought me these pants because I didn’t want to buy a new pair and she was sick of watching me alternate between the same 2 pairs of pants whenever I go to the gym or pool. As hard as it for me to have clothes that fit well these pants seemed meant to be, basically meaning they fit without need of alteration.

But as far as functionality, they suck.

The first time I wore them to the gym I almost slid off the exercise ball.  My core strength is in fact so unreliable that wearing pants that provide some sort of traction for sitting is always a plus. So wearing these pants to the gym was a no-go. I’d just wear them to the pool instead. No big deal, right? You would think, and frankly I did too, but it takes me a long time to get them on. My feet never seem to want to point the right way to avoid the epic tug-of-war that ensues between my body and itself.

The only thing that stops me from giving up on putting on said pair of pants is the likelihood that I’d get banned from the aquatic facility or arrested.

I’m not saying don’t help someone if they need it. I’m saying if they say “No thanks,” respect that and back off, or ask How can I help you?” if you offer for help has been accepted.

Because even when we (or maybe it’s just me) accept help we really want as little help as possible.

There’s something about being able to do things on your own that is incredibly satisfying. It also provides me with human dignity that I sometimes lack when stepping (or rolling) out into the outside world.

Yes, not being able to open a door leaves me feeling downtrodden and pretty useless.

I have the smarts to work towards a master’s degree but something as “simple” as opening a door can prove to be more challenging (among other things).

How messed up is that?

Independence is something countless people have fought for and will continue to do, probably until the end of time. So before you offer to help someone (or probably afterwards) consider what that act of help says to that person about how you see, as well as value, their independence.

What do you consider to be signs of independence? How do you feel or would you feel if someone took those things away from you?