Ask the Girl in the Wheelchair

[umkay]

@Lasciel

Ok, first off, you’re a really engaging writer, and you sound like a fun person in general.

Thanks!

@Lasciel

So… you can’t SNEEZE? How does that even work? Do you still get nose-itchies and just can’t do anything about them? Is that not like the 8th circle of hell? Or is your nose all boss now and unfazed by minor things like pollen season or cat hair?

If I could, I would hire 2 full-time carers just to handle getting hair out of my face and scratching my nose; my nose is not boss. Thank maude I don’t have pets or seasonal allergies. Still, yes, just as you’d imagine, I get itches all the time and have to have someone get it for me. As much as sensation would be nice at times, for this reason I’m glad I don’t have any below my neck–it’s irritating enough to be able to feel my neck and head and not be able to scratch them. If it were a full-body thing, I might go crazy.

@Lasciel

Also, I learned as a child that sweating helped keep your skin glands going in good condition - since you can’t sweat, do you have difficulties keeping your skin in good shape, or was my childhood teacher blowing smoke? Do you get pimples or rashes or things like that? I’m assuming goosebumps are out also…

Hm. I’m pretty sure it doesn’t have anything to do with sweat, but skin integrity is a big issue for anyone who can’t feel or move a part of their body. After all, plenty of incomplete quads can sweat, but they still deal with skin stuff. Basically, because I spend a lot of time sitting and I can’t move my body around all day, my skin is just more fragile than an AB person’s. If I’m not really careful, I can develop a pressure sore pretty easily, which could land me in bed for months. Needless to say, I’m reeeaal careful. And, I get pimples on my face occasionally; if I get them anywhere else, my carers are too polite to mention.

It bears mentioning that I do in fact get goosebumps at times–but I consider them one of the four horsemen of the apocalypse (the other three being sudden headache, sweating on my face and neck, and–for real–a psychological sense of impending doom). The only time I get them is when I’m about to experience a medical emergency known as autonomic dysreflexia. AD is a reaction to my body’s f-ed up communication system. One of my toes might be pinched in my shoe, so my foot sends a message up my spinal cord to my brain to take off the shoe. My brain, such an a-hole, totally ignores the foot (okay, so my brain actually doesn’t actually even get the message). My foot keeps trying to send the message, until such a time as it says “FORGET IT!” and triggers a reflex in my body that causes my blood pressure to skyrocket. If whoever’s helping me at the time can’t figure out what the problem is right away and get my bp down, it’s an ambulance ride for me straight to the ER to prevent me stroking out and dying.

[Sasquatch_1]

@umkay

But there are a lot of things I can’t physically do. While I’m not afraid to push the envelope and find out through trial and error where my limits are, there are some things that I’m just not going to be able to participate in. Like, a group of friends went hiking this weekend, so I took the morning easy and just met them afterward for brunch.

Have you ever seen clips of the “Big Dog” quadruped robot or something similar? I wonder if you could make an ambulatory hiking chair like that.

Here it is: http://www.bostondynamics.com/robot_bigdog.html

[winneee]

Fascinating topic - consider me another who is learning a TON from this thread. FWIW, I think you would be a kick-ass therapist. I get that it has been a long road, but you seem so in check with who you are. I cannot help but think that your honesty, intelligence, humor, charm and self-deprecating nature is what a lot of us look for in a therapist - the chair is either inconsequential or maybe added inspiration if a patient was in a chair themselves. For now, I will just keep reading and rooting for an awesome second date for you!

[umkay]

@The_wind_of_my_soul

I’ve always thought it was obnoxious to imply someone was strong and brave simply by virtue of continuing to exist. But as a fully ambulatory person, I also felt obnoxious expressing my opinion on this.

You’ve got good instincts.

[umkay]

@Asimovian

Perhaps too mundane for this thread, but since I’m enjoying reading your writing, it’s worth asking: why did you choose this particular user name

Oh my gosh. This is the most embarrassing question I’ve been asked on this thread. I have no reason why I chose my user name, other than that being the first thought that popped into my head when staring at the blinking cursor on the “enter username” field. :smack:

@Asimovian

and what brought you to the Straight Dope?

I’ve been reading Straight Dope articles for a long time, since old Cecil always seems to pop up in my random Google searches. I didn’t realize there were forums until maybe a year ago, but I’ve been enjoying skimming them now and again since then. Then, when I ran into my little devotee dilemma, I thought “Who in the world could I talk to about this??” And immediately realized “The Dope!”

@Asimovian

ETA: Oh, and, as a So. Cal. native and an athlete, are there any sports teams you follow?

Trojans, doy. And Lakers, obvi (so sad). Angels games are fun to attend, but I don’t watch them on TV. You?

[R.P.McMurphy]

@umkay

First of all, Larry David can do no wrong. I once ran into him in LA and you would have thought I’d had tea with Brad and Angie, I was so excited. So, of course, I love “Curb.”

I do remember that episode and, as with most episodes, I thought it was hysterical. I didn’t feel demeaned or slighted. For those of us who love comedy, it’s obvious that what Larry David does best is make himself the butt of the joke. The episode wasn’t about how awkward and strange disabled people are–it was about how awkward and strange Larry is.

That being said, I did roll my eyes at the AB actress playing Wendy Wheelchair (not Wanda–perhaps you were thinking of Wanda Sykes?). I’m not militant about it, but it always seems silly to have an AB actress play a role like that when there are people in Hollywood who use chairs and would have loved to play that part. But whatever.

The real issue I had is that those were clearly rickety hospital chairs. No self-respecting para would be caught dead in one of those outside of a rehab hospital. Most paras have sweet little machines that look more like this. It’s just an amateur mistake, something you’d see in a student film. If you’re going to do a whole episode about wheelchairs, you should get a consultant who actually uses one, and who can catch glaringly obvious problems like that.

I don’t know if this will help, but try to remember that the conscious and voluntary communication between my brain and my body is gone, but there are other connections between the brain and body besides the spinal cord. Like the vagus nerve. But, don’t feel bad if it’s confusing. It’s confusing to me, too. Heck, it’s confusing to doctors who study this stuff. There’s just so much we don’t know, and every SCI is different.

OK, you got me on the Wanda or Wendy.

As to the second response on the pornography question, while I don’t quite get it and probably never will, I think you’ve explained it as best as it can be said.

Speaking for myself as an ABP (and probably many others), engaging someone with your physical condition can be very intimidating. Many people fear acting like or appearing to be a clueless dolt. Many of the rest probably act like clueless dolts. The best defense for that is just to not engage. I’m hoping and thinking that you have provided enough information that people like me, that have little experience or knowledge of the condition, won’t be so reluctant to engage. Hey, we can all learn something from each other. Yet, I never want to embarrass myself in front of another person.

[umkay]

@purplehorseshoe

Okay, I got another one: what’s your idea of a fun night out with friends?

Pretty standard, dinner and/or drinks.

[umkay]

@blinkie

No questions just a hello from someone who’s in the same shape as you are.

HI! Someone mentioned you earlier; I’m so glad to actually “meet” you.

[Dignan]

I’m paralyzed too. I’m at a lower level though (T5). I did a similar thread maybe 10 years ago, but a search didn’t find it.

What do you do on dates? I would like to know if there is anything else out there I’m not thinking of, other than standard of dinners, movies, and concerts.

[umkay]

@Mama_Zappa

How do the logistics work with skydiving? I mean, I assume you did a tandem dive (is that the term? where you’re strapped to a more experienced diver), but did they target a very specific landing spot for you and bring your chair or a gurney or something to that spot?

Ahaha! No gurney–much easier for them to just get my chair to the pre-set landing site. Tandem dive is the right term. They taped my arms to my sides, then harnessed me to the front of my instructor, roping my legs to his, just before we jumped. I was shorter than him, so he landed on his feet, then sat down with me still strapped to him and waited for the ground team, who came over and unstrapped me and put me back in my chair.

@Mama_Zappa

What, if any, restrictions do you have on what you can eat / drink? You mentioned having a full bottle of wine, and the annual getting drink on December 22, are there any issues with a quadriplegic where, say, alcohol is any riskier than an able-bodied person? Do you have to consume more fiber than someone more mobile? Any other dietary changes?

I do drink, but the whole-bottle-of-wine thing is a not a regular habit, because I pay for it the next day. Not only do I get hung over just like an AB person, I also have to get cathed more often if I’m drinking a lot and heavy drinking will almost certainly throw off my bowel program. But–hey!–I almost never drink and drive!

I do have to make sure I eat plenty of fiber. I don’t have a specific amount of grams or anything, but suffice it to say that my attendant and I are aware, just as you would be, when I’m not getting enough, or I’m getting too much…I also watch how much I’m eating, since I have precious few ways of burning extra calories if my weight starts going up.

@Mama_Zappa

Aside from the concerns with pressure sores, and autonomic dysreflexia (that’s where your body goes haywire and can’t control temperature, right?) , what other medical issues do you face? Are you more prone to, say, pneumonia?

I explained AD in another post, but it’s my BP that goes crazy, not my temperature. High quadriplegics are especially vulnerable to all three things you mentioned. Pneumonia is the number one killer of quadriplegics, which makes my coughing routine every morning extremely important. I’m also just more vulnerable health-wise, in general. I wouldn’t say I’m medically fragile, but long-term high quadriplegia is hard on a body.

@Mama_Zappa

What about getting your hair done? Do you go to a regular salon, or have someone come to the house?

I’ve been going to the same friend to get my hair done for years. She works in a salon that’s accessible to me. I don’t transfer to the salon chair; she removes the head rest and I stay in my wheelchair for the whole thing.

@Mama_Zappa

Would a service dog be at all useful for you? Do you have (or wish to have) any pets?

I’ve thought about it, because I do love dogs. But it seems like overkill, since I’ve already got a human helper with me 24 hours a day. Plus, I wouldn’t want to take that opportunity away from someone else either; I can see it being really the one thing that could make the difference for a lower quad between needing in-home care and living independently.

I don’t have any pets myself, but my parents have a pair of Doberman pinschers whom I adore.

[umkay]

@Sarabellum1976

Do you get to vacation very much? I’m interested to hear about how you manage the particulars - I presume your caregivers get a free vacation out of it? - and how about flying on an airplane? Are there certain plane models/airlines that you avoid?

I do get to vacation, maybe once every other year, and I usually do bring a caregiver, but she’s not on vacation–she’s working.

Flying? I f-ing hate flying, so I avoid it in general whenever possible. Interacting with airlines never fails to leave me feeling humiliated and pissed off, a feeling that is pretty common in the disabled community.

@Sarabellum1976

Have you ever been on a cruise? When I was on my honeymoon back in 2005, the ship made a point of seating all the newlyweds at the same table, and two of the people at our table were a quadriplegic and his new wife. Tell you what, that guy was all about having fun. I ran into him EVERYWHERE on the ship. Playing blackjack in the casino? Check. Hot tub? Check. Midnight buffet? Yep. Dude was getting a massage or something in the spa when I went in there. He even showed up for the ballroom dancing lessons. (!!)

I’ve never been on a cruise, because I don’t generally like to do what people do on cruises, which I’ve heard is a lot of eating, dancing, and watching “shows.” :rolleyes: But I’m weird that way.

@Sarabellum1976

In retrospect, though… I wonder how much fun the new wife was having on that trip. Maybe there was a incognito caregiver waiting in the wings that I didn’t see, since I wasn’t looking for one.

I’m curious what you meant by wondering how much fun the new wife was having?

[Broomstick]

There’s this funny notion that the spouses of disabled people are martyrs who are held back from doing what they want by being married to someone disabled.

You know, my spouse has never danced, can’t dance, never will dance - but he met me at dance. And for years he would take me dancing even though he couldn’t dance (it was a type of social dancing where you traded partners with other people a lot, anyhow). He never stopped me from dancing. In fact, he encouraged me to dance and drove me to dances for years. Because he’s never held me back from doing the things I want to do even when he couldn’t join me in doing them.

I suspect Mrs. Quad was having quite a good time. When you love someone you want them to be happy, and if their being happy means they have hobbies you don’t share you don’t stop them from having those hobbies, you support them doing those things and are happy for them when they’re enjoying themselves. Maybe Mrs. Quad was spending all her time with Mr. Quad. Or maybe she was doing some things he couldn’t that she enjoyed while he was off playing blackjack or holding interesting conversations (on subjects she found boring) with other passengers.

[R.P.McMurphy]

@umkay

I’ve thought about it, because I do love dogs. But it seems like overkill, since I’ve already got a human helper with me 24 hours a day. Plus, I wouldn’t want to take that opportunity away from someone else either; I can see it being really the one thing that could make the difference for a lower quad between needing in-home care and living independently.

I don’t have any pets myself, but my parents have a pair of Doberman pinschers whom I adore.

Just thinking out loud but there are a lot of dogs out there looking for a home. It might be very good for you if you could find a gentle, lazy dog that would bond to you. It doesn’t have to be a highly trained guide dog. Don’t get a puppy, they are too much work. Leash him/her to your chair and take him/her on walks. The dog will probably want to sit on you lap. More people will approach you if you have the dog. You can have your carer with you to direct things and clean up the dog’s business. If you could find the right one that dog would give you more unconditional love than you could ever expect.

I had a dog like that. I miss him every day.

[Asimovian]

@umkay

Trojans, doy. And Lakers, obvi (so sad). Angels games are fun to attend, but I don’t watch them on TV. You?

Dodgers mainly. Go to about 15-20 games a year. A couple of Kings hockey games a year. Oh, and I’m a UCLA fan.

[Marconi_N.Cheese]

@umkay

Flying? I f-ing hate flying, so I avoid it in general whenever possible. Interacting with airlines never fails to leave me feeling humiliated and pissed off, a feeling that is pretty common [del]in the disabled community[/del].

(Strikout mine)

I traveled with a friend in a wheelchair once. Nothing serious, twisted knee or ankle, I forget. What I didn’t forget is the scrutiny she was subjected to. We all hate it, but she might as well have been holding a sign saying “I have a bomb.” It was ridiculous.

[zagloba]

What do you do when a document needs your signature?

[umkay]

@Mama_Zappa

Interesting - I did not know that such an injury precluded sweating entirely. I knew of the temperature regulation issues but just assumed that your body wouldn’t “know” how to sweat the “right” amount or something.

Just have to note here that this only applies to “completes” like myself; the “incomplete” spectrum is far more populated and diverse. Many of them sweat, not to mention have sensation or movement below their injury levels.

[umkay]

@Machine_Elf

Is (or was) it possible for you to bear children? Do you intend, or intend not to, have kids some day? If not, have you made the decision to have yourself sterilized so as to eliminate the possibility of pregnancy and the hassle of menses?

As far as anyone knows, I am perfectly capable of getting pregnant and giving birth to a healthy baby; there’s nothing wrong with my reproductive system, and quadriplegia isn’t hereditary. Of course, I’ve never tried, so it’s still a theory. But that puts me in the same boat as any AB woman who’s never attempted to conceive. With the right partner, I could definitely see having a kid or two.

So, in the meantime, the specter of an unplanned pregnancy and the annoyance of a monthly period continue to hang over my head.

[umkay]

@Sasquatch

Have you ever seen clips of the “Big Dog” quadruped robot or something similar? I wonder if you could make an ambulatory hiking chair like that.

Here it is: http://www.bostondynamics.com/robot_bigdog.html

Bahahahahahahahaha!

Okay, okay…nope, not done–

Bahahahahahaha!

I seriously cannot stop laughing at the image of me strapped to that thing staggering up a mountain! I mean, it’d be cool to go hiking, but I don’t know if I could handle riding a crazy-headless-robot-bear-dog to do it.

[Ambivalid]

Ahh, if only real life came with a “Ask the…” thread. It’d take care of so much.