IAmA Blind Quadriplegic. AMA!

how are you even reading this?

I use a screen reading (or text to speech) program. It reads things out to me and I listen to them.

Does it read caps as louder? CAN YOU TELL I'M SCREAMING?

It's actually quite amusing when someone is trying to yell because my program reads their text in a high pitched voice! It's very hard to take what they are saying seriously... lol!

/r/dolan must be a nightmare for you

Oh wow... I just had to go there lol! Now my brain is melting... thanks for that!

How do you function day to day? Are you independent? Thanks for answering :)

I have a guide/service dog that guides me and helps in other ways (opening and shutting doors, fetching things, helping take my shoes, socks and coat off, pushing buttons etc.)

I also have 30.5 hours of home care per day (there are overlaps in shifts), so there is always someone here to help me if I need it. Once I am up in my wheelchair (they use a lift to get me in and out of bed), I am pretty independent though.

You are very welcome, and thanks for asking!

30.5 hours per day?? Thats damn good care!

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I still want to know if its 10.5 or 20.5

He said that shifts of his providers overlap. It's in a 24 hour period that a total of 30.5 hours are used for caretaking.. If two people work 22 hour shifts at the same time in a 24 hour period, that's 44 hours a day

That's right, but I'm a she lol! Here's a quick breakdown of how the shifts work:

• Worker 1 comes in at 8pm and stays overnight.

• Worker 2 comes in at 8:30am and I have two workers here for a half hour to get me up, or take my guide/service dog outside if I'm not well enough etc.

• Worker 3 comes in at 1:30pm where there is another overlap and stays until 11pm (remember worker 1 comes in at 8pm and so it continues)

I usually have anywhere from five to seven workers who rotate through these shifts. I hope this helps to clear up where 30.5 hrs a day comes from.

How do you cover the cost of this?

I feel very fortunate because I live in Canada, and it's included as part of my healthcare. I know if I lived in some other countries I wouldn't have nearly as many hours, or would probably end up in a nursing home.

What's the most offensive thing anyone's ever asked you up to this point?

There are so many things that come to mind, but I think it would have to be a stranger who blurted out "Can you have sex?" while I was in the middle of grocery shopping...

...can you? (sorry!)

Yes...

Creepy PMs incoming.

Sigh... I know, right? Maybe I should have went with the second most offensive thing anyone has ever asked me...

What do you do for fun? I imagine choices are limited. Thanks for doing the ama!

You're welcome, thank you for asking a question! The choices are not as limited as you may think. The biggest hurtle is finding places that are accessible and because my friends don't see me as being 'disabled' they sometimes overlook the obvious.

An example of this happened some weeks ago when a friend and I decided to stop into a pizza place while out. She was halfway up the stairs and asking if I was coming. It took me sitting in my wheelchair in the parking lot (there was no curb cut to even get to the stairs) and going 'Ummm... Don't you see a problem here?' while giving her a minute to think the situation through before she finally got it lol! Meanwhile l of the people who were waiting for their pizza were staring at her in an awkward silence...

I hang out with friends and do the usual things. Watch (or listen to TV or movies), go to concerts and shows, go camping and 'hiking' on trails that I can get to, swim, bowl (using a frame that the ball sits on), eat out, I'm not big on clubs anymore, but don't mind going occasionally etc.

How did you know there was no ramp?

My guide/service dog stopped to block me from going up onto the sidewalk and when I asked him to find a curb cut he couldn't.

Also, that building is older a lot of the places in it are not accessible.

Do you do any therapy at all? And if you do, what kind?

My muscles spasm too much for anyone to safely stretch me, so I don't have any PT (physiotherapy) anymore. I do try to swim whenever possible though. It helps the few muscles in my arms that I can use and I always did love the water! I can't lift my head out of the water anymore because I can't control my muscles well enough, but a swimmers snorkel and nose clip solved that problem.

Do you believe in God?

I believe there is something out there be it a God, energy, some other kind of intelligent beings etc. I think it's part of human nature to want to believe in something and that everything don't just end when we die.

Having said that, I also think that everyone should be free to have their own beliefs.

Do you have any family? and if so do they attempt to help you at all?

I do have family that live within a reasonable distance (in fact just before Christmas of last year I met my dad for the first time in about 28 yrs and found out he lives in the same city)! They all have their own lives though, and I want to be as independent as possible.

If I need help, I know I can always ask them, but it's different with home support workers. I know it's their job to help me and they are at work, so I don't feel like I'm putting any stress or burdens on them. If I asked family for help I know they would have to take time out of their lives (and possibly other plans) and I don't like having to do that.

I hope that makes sense...

What's something you've always wanted to do, but couldn't because your conditions prevented you from doing so?

When I was younger and first hears River Dance I would have loved to learn to dance like that. At the time I could walk, but my feet just couldn't move n the positions needed. It sounded amazing though!

I also always wanted to learn to play the violin from a very young age (since I was about 6 or 7) ,but was from a very small community far away from the city where I could get lessons. I never mentioned it to my mom because I knew she couldn't afford it (she was raising me on her own) and didn't want to make her feel bad. When I was twenty-one I finally decided to buy a violin (I couldn't afford lessons, but went online to learn as much as I possibly could). I was doing very well and it came naturally to me, but about a year later I became a quadriplegic and lost the use of my hands.

I try not to think about it, but when I hear a violin I always regret not learning sooner and miss playing.

Other than those things, I will always find a way to do whatever I set my mind to though!

Do you sometimes experience phantom limb syndrome? If so, is it disorienting when you can "feel" the limb but you cannot see it?

I don't experience phantom limb syndrome, but I do get itches sometimes on top of my shoulders and no matter what area is scratched it doesn't help at all! Sometimes I just want someone to tear my shoulders apart to try to get the itch to stop. I can feel the itch, but when someone scratches where I think it is I can't feel them touching me. It's right in the area where my sensation changes from 'normal' to nothing. It gets so frustrating, especially when it's one of the few areas of my body that I can feel!

It can get pretty disorienting when I'm moving my arms. (I can move them a bit) because I have feeling in the front part of my upper arms, but then no more feeling besides in a small area near each thumb. In all of the areas mentioned I can only feel pressure, but not if something is hot or cold, dull or sharp etc. so it's not very easy to tell where my arms are in space. I can pretty much judge where my right arm is for example (it's my stronger one) if I have my elbow resting on the armrest of my wheelchair and use my shoulder muscles to bend my elbow. If I have a fork attached to my hand (with a velcro strap) and I bring my hand up towards my mouth I move it so far and then move my head carefully towards it so I can find the fork and not stab myself with it. It takes a lot of time practice and patience to figure these things out, but I've had nearly nine years to do it.

Do you dream? If so, what about?

I do dream, but I don't see in my dreams. know what is happening with my other senses in my dreams, and sometimes I just seem to know for no reason at all.

I do have one thing that happens quite frequently in my dreams When I come to stairs in my wheelchair n my dreams I think 'This is silly, why not just walk up o down them. It's easier.' I then proceed to walk up or down the stairs (mostly up for some reason) and then promptly remember I can't walk as soon as I get to the top and collapse in a heap on the floor and usually wake up in a slight panic because my wheelchair is still at the bottom of the stairs and I can't get to it.

(From talking to other people who have spinal cord injuries its pretty common.)

i have to know, what is the emotional sensation like being blind? i understand that those who have seen before then go blind describe it as emptiness more than darkness. but, what about never being able to see? is there any chance you ever will be able to?

Not seeing is my 'normal', just like seeing is your 'normal'. Emotionally, it doesn't really affect me. Sure sometimes it can get a little frustrating, but then I just stop, take a couple of minutes to calm down and assess my surroundings or think about what I was trying to do and move on.

The retina in my right eye is partly detached and in my left eye it is detached. That would be the easier thing to 'fix'. The problem really comes into place because my eyes are not really the reason behind my blindness. My optic nerves are and because they are so deep in my brain they can't just be replaced. Maybe with the direction science is headed some day optic nerves will be able to be grown inside the body. Then I would have to learn what vision is and how to use it.

There's a movie that came out in the 1999 or 2000 called At First Sight. It's about a guy who is blind and has his vision restored. Here's a YouTube trailer I found for it (I think you may be interested in the part starting at 1:27 were he 'sees' for the first time). http://www.youtube.com/watch?v=wvI4HvGvHyA That's what I mean when I said learning to use vision if I had it.

I know what you mean about the emotional sensation though. I could never see, but up until 2004 I could walk. I don't really think about it much anymore, but when I as first moving around the hospital in a wheelchair in the empty hallways at night I would often feel a very powerful urge to stand up and run through the halls as fast as I could. I did feel a sense of emptiness because I lost an ability that I had for many years.

I think I've always liked swimming so much because of the freedom I have in the water. I'm sorry, I feel like I didn't answer your question very well, but I'm not sure how else to put it...

Have you had any cool experiences that you wouldn't have been able to have if you didn't have these conditions? Thanks for doing this AMA!

You're welcome, and thank you for reading it and asking questions!

I've had so many!

• I got to travel to another province for periods of time (the longest being a term) to go to the school for the blind since I was about 12. This involved flying home every Friday afternoon and back again on Sunday nights.

• I went to many camps (for eg. Wayne Gretzky's SCORE camp in Ontario, and Space Camp in Alabama).

• I got to report the weather on TV (I read the forecast in Braille for White Cane Week).

• I went to guide dog school in Oregon and got to be work with the sweetest Yellow Lab you could ever met for nine years before she retired (I kept her until she got so sick she had to be put to sleep).

• I received enough scholarships to pay for two years of University plus all of the equipment I needed which I wouldn't have gotten otherwise.

• I got to spend nearly four wonderful years with another sweet little Siberian Husky and train her to become my guide/service dog (sadly, she passed away suddenly due to medical issues).

• I've met many great people I wouldn't have met otherwise, including Rick Hansen (he wheeled around the world in his wheelchair when I was a little girl and I looked up to him ever since I heard about what he was doing on the news back then).

• I traveled to and lived in various parts of Canada, the US and the UK while working with companies on accessibility issues.

• Now I am working with an amazing Siberian Husky that was very close to being 'put down' because he was considered 'untrainable' as even a pet dog. All he needed was someone to love him, give him a chance and a job to do. I'm so proud of him, and ow many people can say they get to take their dog everywhere they go?

• I also get to help people when they are at their lowest point and show them that life can be worth living by being a Peer Support Volunteer and I love helping people.

Is your keyboard in braille?

No it's not. I can't feel my hands anymore, so I can't read Braille. Even when I could read it my keyboard wasn't Brailled. We (blind people) usually just type by touch, although some prefer to use a Braille display that sits under the keyboard that refreshes as you type.

I can use a keyboard for typing shorter things, but it's all by touch typing. I find the space bar and if I move my hands up and skip a row of keys and move in towards the middle of the keyboard to the next keys then I am on the F and J keys. When I use to type before I lost the feeling in my hands I was really fast, but now it takes a lot longer because I have to move over keys and listen for the sound of my nails as I pass between keys.

What noise does it make if there are misspelled words or jumbled ledders? asflaflkafh124l

My computer will try to pronounce it as a word and if it doesn't sound right I can go back and have each letter read out individually to try to figure out if it was a typo or just jumbled up letters.

I also know that the way lol is pronounced means 'laugh out loud' for example, but I can also set different combinations of letters and symbols to mean different things, like when my computer comes to a smiley face :) it says 'smile' (I named the smiley with sunglasses 'blind smiley' because I'm just odd like that lol)!

Do you have telepathic mind-control powers?

No I don't, but they would be very helpful! ;-)

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Thanks! Cerebral Palsy and Septo-Optic Dysplasia are things you tend to just get. The Transverse Myelitis happened when I was in my early 20's. Most of the time doctors can't really pinpoint why it happens (it just seems to be random), but it basically means that my immune system started attacking my body (specifically my spinal cord).

Quadriplegic means that I have a spinal cord injury that affects all four of my limbs. I can't feel or move most of my body (although I do still have some movement in my arms, but not my hands).

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I'm doing it by myself with a combination of a text to speech program that reads the questions out to me and dictation software that types what I say.

I don't think it is his birthday.

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No problem lol! It's still my 1st reddit cake day, so close enough...

Have you ever had a significant other?

Yes, I've been dating since I've been a teenager. I was in a couple of serious relationships (in fact I was engaged for a while), but at the moment I'm single again.

Are you able to have children?

Because the Septo-Optic Dysplasia (a.k.a. the reason why I'm blind) also affects my thyroid it may be a bit more difficult to get pregnant, but yes should be able to have children. Another factor I have to take into consideration is the fact that because of my spinal cord injury I would be considered a high-risk pregnancy.

Women with injuries as high as mine tend to not carry babies to full term and because my body autonomic nervous system doesn't function as it should I get something that is known as autonomic dysreflexia (or simply AD), which can be triggered by anything that would be irritating or painful below my injury level (even though i can't feel it).

This makes my Autonomic Nervous System (which regulates things like my blood pressure and heart rate) send my blood pressure to extremely dangerous levels, and slow my heart rate down to dangerously low levels. If the cause is not found and fixed quickly it can lead to seizures, stroke or even death.

I get AD quite frequently, but having a baby moving around inside me or kicking could cause it (and telling an unborn baby to stop kicking just doesn't work)... Child birth can also cause AD (which is why I would be given an epidural even though I wouldn't be able to feel that I was in labor). This bring up another slight issue. I also wouldn't realize I was having contractions until I started having a lot of AD attacks that I couldn't figure out the cause of...

One interesting fact about child birth though is that even though I wouldn't be able to push (because those muscles are paralyzed), my body would take over and the contractions are enough to help push the baby out. (Which is why can't help but grin every time I hear women on TV giving birth who are absolutely exhausting themselves because people are yelling at them to push)!

What do you do as a profession?

Were you ever able to see?

At the moment I speak to groups whenever I can, but I have been having increasing issues with my health over the past couple of years, so I'm not working at the moment. I do plan on studying Therapeutic Recreation once some of these issues get sorted out though. (I studied Psychology originally, but it just isn't for me).

No, I was never able to see because my optic nerves are not connected to the visual center of my brain.

Cool. What type of guide do do you have? Was it trained at Southeastern near Bradenton, FL by any chance? I used to go there and interact with the puppies. Very cool dogs.

My first guide dog (before I became a wheelchair user) came from Guide Dogs for the Blind in Oregon. My current guide/service dog came from the UK where he was rescued. I spent six months training with him there (to do guide work) and continued working on his service dog skills once I got back to Canada. He's a Siberian Husky.

Wow that must really be awful living with that. I don't know if I would be able to do it. Just amazing how you have the strength to overcome your multiple handicaps.

It's really not as bad as it sounds. I think as human beings we have the ability to cope with situations we never thought we could once we are actually in them.

When I was in the hospital not long after my spinal cord injury the main Dr. kept sending Psychiatrists to my room because I was 'too happy' and 'seemed to be coping too well'. I always thought that was kind of funny in a way because if I was feeling down at all they would be sending them to see me because I was 'too sad' instead...

After multiple Psychiatrists assured everyone that I was doing fine and there was nothing mentally 'wrong' with me, she finally stopped sending them (I think mostly because they refused to come back).

I think already having multiple 'disabilities' helped me to accept what was happening. I never did view myself as being 'disabled' (and still don't to this day). To me, the quadriplegia and all that it entailed was just something else added to the pile if you will. I saw it as another challenge to try to overcome, and I always did like a challenge!

How do you appropriately post photos that you can't see? How do you know what is in other people's photos to comment on them?

That is one thing I do need help with. All of the photos on my computer are labeled so I know what they are, but when I'm reading through reddit for example and there is a post with just a photo if I like or dislike it usually it's either one of my home support workers, or they described to me what it was about and I upvoted or downvoted it myself.

If I'm posting photos to places like facebook I have someone make sure they are ok, and if not they will crop of edit them (if I take them I usually stay far enough away so they can be cropped).

How do you browse reddit? Or navigate your computer in general.

With a combination of a screen reading (text to speech) program and dictation software.

I think Mudiwa Najeeri has you beat.

I'm sorry I have no idea what (or who?) that is... Do you care to explain?