14 Years Post Spinal Cord Injury - Ike's Story

An ex-rugby player injured in a game talks about his adjustment to living with a spinal cord injury, family dynamics, and his road toward getting back into the community with a job through education.

Explaining spinal cord injury to kids - and everyone else

I ran across a blog post talking about how to explain spinal cord injury to children. I remember after my accident going through this with my niece and nephews - except for the youngest who was born after I acquired quadriplegia.

Years after my accident I rolled into a room to discover my niece and nephew watching a home video in which I was walking. The room fell silent and both of them sent surreptitious glances at me.

"You were walking," one of them said.

I nodded, thinking that they were still fairly young when I had my accident. Perhaps, in fact, they didn't remember me being able to walk.

Apparently not. Both of them stared at the screen in fascination at the upright, homo sapiens moi.

"Wow," one said.

I was tempted to say something flip like "And now I do wheelies" but instead I let the moment be. It was what it was.

And then I asked them if they had any questions for me that they had been reluctant to ask.

Needless to say, they did, even though I thought they "got it" - that my life had gone on, I still worked, played, and did not sit around thinking about life before disability. This taught me a valuable lesson when dealing with not only kids, but adults when it came to my disability - always expect the unexpected perspective because it's about their perception, not mine. I live with my disability every day, but they don't.

I'm not talking about casual acquaintances or strangers here, but people who are close to me. Everyone had their own process and questions arose when questions arose. There were times at first that I felt I was explaining quadriplegia on a daily basis but now as the years have gone by I realize that those questions fade as others accept - and learn - what is.

I also realize how important it is/was for those who are/were close to me and love me to be able to ask those questions when they need/needed to.

My4Hands

Happy new year to everyone! I wish you all a happy and healthy year.

Today I'd like to pass along information about a product I just saw over on twitter. It's called My4Hands - and I'm going to post a video below to give you an idea how it works.

Shopping at a stationary Store from My4Hands on Vimeo.

I like the simplistic design and the affordable price tag on this one. Often I find myself needing to keep things that are hot or cold off my lap because I lack sensation and don't want to burn myself. I also need to be careful not to dislodge medical devices I sometimes wear. This product promotes independence which I'm all for too.

I haven't tried this product out, but I can imagine all kinds of uses for it around here! Here's the inventor talking about why he came up with the idea-

My Story - Why I created My4Hands from My4Hands on Vimeo.

Here's a link to a page to view more videos and to get more product information.



You can also find the inventor on twitter at @My4Hands

Paraplegic Changing Tires on Car

A paraplegic demonstrates how he changes the tires on his car in this video.

Facing Disability

...is a site with resources, including videos, for families dealing with spinal cord injuries. Individuals, family members and experts answer common questions to help the newly injured and their loved ones find information.

You can find the site here.

Summer Safety Tips from Reeve Foundation

This video addresses safety tips to avoid a spinal cord injury.

Quadtools reacher demo

Doug demonstrates how the Cripper helps him in daily tasks. He uses the regular length Cripper and the Shorti model in this video. They are made by quadtools.com

I have a regular size one which I purchased months ago. I'm saving up for the Shorti.

It's designed by a quad and is a great help because it's made for exactly what we need.

Dog retrieves neighbors to help injured owner

I've heard many stories about acquiring a spinal cord injury, but this one caught my attention. After Paul fell off his motorcycle and had a spinal cord injury, his dog Yogi went out to the road where he was spotted by neighbors who went to Paul's aid.

Quads v. Heat

This video explains why and how people with quadriplegia react differently to heat. it also shows a few ways to deal with being outside in the summer heat.

Bach and forth

When I played classical guitar before my accident, most of the pieces I played were Bach. Every morning I would pick up my guitar and play for an hour before I did anything else.

So after my accident I had to establish a different routine. At first I was getting used to the new morning routine a spinal cord injury imposes, but as time went on the loss of being able to play began to feel overwhelming.

I couldn't bring myself to even listen to classical guitar music after the accident without crying. I remember begging God to please restore function to my hands so I could play again. It began to take a spiritual toll.

My anger led me to go to the local tennis court, tape a racket on and hit tennis balls repeatedly over the net. As luck had it, a local coach spotted me out there for hours and set up a wheelchair tennis coach for me. The wheelchair salesman a friend recommended also happened to play in tournaments and invited me along.

The adage "Focus on what you can do, not what you can't do" is very true for newly injured people with disabilities. I started to wake up early to hit tennis balls against a wall. There was a quiet and stillness in the cool early morning air as the balls plopped against cement, then my racket, then back again and again. It wasn't Bach, but it was soothing.

By the time I had to retire from tennis, my anger and sadness at losing function and not being able to play guitar no longer stopped me from enjoying music. Although I missed playing tennis, I realized that there were a lot of other things I needed and wanted to do.

The list is long. These days I find much joy in going down that list and crossing off all the things I'm now ready to do - as a person with quadriplegia who's comfortable in my own skin.

I'll always be grateful to the people who supported me in those early days. At times I write posts on this blog or put up videos that specifically target newly injured people with disabilities. I realize not everyone is as lucky as I was -and am - to find people and resources to help them through rough spots.

One thing I learned is that the ball is always in our court. No matter how much others help us, it's up to us to take the lead. Showing up often leads to opportunities we otherwise wouldn't have.

So here's a little Bach from Segovia, the master of classical guitar. Enjoy. I have other things I have to go do.

Family Members Talk About Their Experience with Paralysis

In this video from the Christopher & Dana Reeve Foundation, family members talk about their different experiences with paralysis.

The Campaign to Cure Paralysis Map - add your name!

Ever wonder if other people living with paralysis live near you? Do you sometimes need a reminder that the community of people affected by paralysis - those of us who live with it, our families, friends and others -is quite large and diverse? Would you like to let others know you are out there as well, especially for those who are newly injured? How about helping to raise awareness of the Campaign to Cure Paralysis?

The Christopher and Dana Reeve Foundation is asking those affected by paralysis -- the injured, their families and friends, caregivers and professionals -- to add their names and stories to the Campaign to Cure Paralysis map, which has been relaunched with better visualization tools and an expanded access to the paralysis community.

They hope that this map will help raise the visibility of the paralysis community, and that those who add their names will also avail themselves of the resources on our site to help them.

You can find the map here. I encourage everyone to participate and be counted and to ask your families, friends, caregivers and professionals to join in as well.

If you've never visited the Reeve Foundation site, take a moment to do so and see the many resources they offer.

Top Ten Things That Annoy People in Wheelchairs

In a recent poll done by the Christopher & Dana Reeve Foundation, wheelchair users were asked :

What do family, friends, and strangers do to you when you are using your chair that annoys you?

Here are their answers:



Patting me on my head. Don't. (I do my hair every morning.) 4.9%

Speaking slowly to me because I'm in a wheelchair. 3.2%

Being asked, "So if I shot you in the leg, you wouldn't feel it?" 0.9%

Not inviting me to an event because you are protecting me from some frustration. (Let me figure it out.) 4.8%

Able-bodied people parking in handicapped spaces. (So what if you have the tag!) 38.6%

Holding onto the back of my chair so I can't move. 4.2%

Talking over my head as if I'm not here. 8.3%

Accessible bathroom stalls being used by an able-bodied person. 12.7%

Congratulating me for things like going to the grocery store like it's worthy of an Olympic medal. .2%

Strangers asking what happened to me. 5.3%

Continuing to insist on helping me after I've said no thanks. 8.4%

Being asked if you want a shopping cart for your grocery bags. (How can I wheel my chair and push a shopping cart?) 0.3%

A restaurant hostess asking if I want a booth. 2.2%



After using a wheelchair for 17 years, I've experienced each of these things- more than once - and some of them on a fairly frequent basis. And although I've learned to handle some of these with humor or assertiveness skills ( e.g., when someone talks over my head, I immediately speak up to reinsert myself into the conversation), it's great to see a survey like this that can help people understand a wheelchair user's point of view.

SCI PEERS- Video Interviews

SCI-PEERS offers a series of video interviews done by people with spinal cord injuries so those with a spinal cord injury can learn about others living with a spinal cord injury.

There are a number of excellent videos to watch. (I had trouble picking which one to post!) If you have recently acquired a spinal cord injury, I recommend watching Tamara's video called Chat for New Patients.


In the video below, Tamara talks about her car accident, the loss of her boyfriend, her adjustment to her spinal cord injury, going to college, and her ambitions.

via YouTube:

Tamara Mena, who has a T2/T3 spinal cord injury, talks about her life since leaving Mexico at age 13. Her story about her ambitions, her accident, and her relationships are presented. see http://sci-peers.org/peers

What is the secret to dealing with a spinal cord injury?

One of WildKat's readers (Matt) asked her this question recently and Kimberley aka WildKat wrote this in response. You can read it all at the link, but I'd like to highlight part of her post here. Kimberley has multiple disabilities and writes about how, when she acquired her sci, she "already had the mind set of being able to do whatever I wanted to and I knew if I wanted something I would figure out a way to make it happen", which she attributes to already having a disability. (I might add that this is also true if you're Irish and persistent (although I get called stubborn by those who don't truly understand the virtue of persistence). In any event, it's a good thing, since a medical type was trying to get her into a nursing home. Kimberley was more interested in getting on with her life, but she adds this, which I'm posting in case anyone with a recent sci is reading:

Then there was all of the hidden aspects of spinal cord injury. People see the wheelchair and understand that you can’t move. They accept that you can’t feel certain parts of your body but that’s usually as far as their understanding goes. They don’t usually understand that all of your plumbing don’t work the same as it use to. Your whole life seems to now revolve around the bathroom! After a few months the indwelling catheter comes out and although you feel a new found freedom you have to learn to d intermittent catheters yourself. Otherwise your bladder will either spasm and let go of it’s contents at inappropriate times, or it will just relax and expand until there is no more room causing urine to back up into your kidneys and do damage. Then every other day there’s the dreaded bowel program . There’s also worries about developing pressure sores if you don’t shift your weight around. It can all become pretty overwhelming!

Of course because of the level of my injury I also had to worry about something called Autonomic Dysreflexia to worry about, which can cause unconsciousness, seizures, stroke or even death if not death with promptly. You are thrown into a completely different world and it’s a lot to take in. Especially while you are re-learning basic things like how to brush your teeth, how to balance, how to move from place to place etc.

Once you learn how to do things again and settle into a routine it gets easier. If you accept that this is the way your life will be then you can move on and deal with things a lot easier as they come. I guess I just went into things with the attitude that life wasn’t over. It was just going to be different and dealt with whatever was thrown at me the best way I knew how.




I hope you go on over and visit WildKat's blog - she has many great posts!

Disability Pride and Power

In this video, a woman with paraplegia describes her journey toward empowerment and what disability pride and power mean to her. In a second video, a female amputee talks about how her identity has changed after becoming active toward working for disability rights.

A woman with cerebral palsy talks about being institutionalized at the age of 12 after her parents called the state for help with her care and her eventual journey toward working for disability rights.

Being strong

I was speaking with a woman (let's call her Ann) who recently acquired a spinal cord injury. Ann was in tears because of some of the changes in her lives she was going through. Her husband is divorcing her and Ann had to move to a small apartment, giving up a large and comfortable home. But those changes weren't what upset her most.

Ann was distraught because a friend told her she wasn't being strong enough. The woman told Ann that she wouldn't be around her until Ann got her act together and 'was herself again'.

I asked Ann if she believed in God.

Ann said she did.

So I told her about this blog post I read a while back that a military mom wrote. And I thought I'd share it on here too.

The writer said it was a good thing that God didn't throw away those of us who are at our weakest and only keep those who are at that moment strong. She wrote:

I've had some weak moments in my life, particularly during this deployment, where I've felt very close to dried up. I'm not bursting out with color, I'm barely making a mark. And yet, God in His incredible way, knows how to infuse me, how to strengthen me, how to bring me back to my original condition that He created me to be.


We all go through difficult times. It's not necessary to label ourselves- or allow others to label us- in hurtful ways if we show some emotion. I explained to Ann that she will find out who her real friends are. True friends find ways to be helpful in concrete ways or offer constructive suggestions rather than casting judgment in one sentence zingers.

And sometimes they just know enough to listen quietly.

Independence matters

Joseph Mathis, who has a C-6 spinal cord injury, is shown in this video working out to build up his muscles so he can do independent transfers and push a manual wheelchair part of the time. A staff member at Shepherd hospital discusses what goes into his rehab to do these independent tasks. The video also shows the Vitaglide, a new piece of exercise equipment that many of my friends and I do wish gyms would carry. It works for people in wheelchairs and helps build up many of the muscles needed. It's unfortunate that, as we all debate the high costs of medical care, we offer so few opportunities for people with disabilities to exercise independently toward goals that would keep down and lower the cost of their care outside of medical settings, which would be more cost effective.

I know personally how important it is to attain and hold onto as much independence as possible. Being able to do a few things can make an enormous difference not only in your quality of life, but the amount of caregiving required. I wish Joseph all the best as he moves toward his future.

Literacy program volunteer Leonardo Camargo talks about his work

Leonardo Camargo, a recent college graduate, is interviewed in this video by SCI-Peers.org about his volunteer work in literacy training. He describes how important literacy is to accessing health care, as well as his goal of obtaining employment as a result of his volunteer work.



In the next video, Leonardo talks about his college education and his accident and spinal cord injury.

Cal Poly Launches Adaptive Kayak

via YouTube:

Bryan Gingg was the test pilot for an adaptive kayak developed for use by quadriplegic or paraplegic recreationalists. A Cal Poly alumnus who has been in a wheelchair for more than 20 years, Gingg was the first to sail a new high-tech kayak developed by Cal Poly kinesiology and engineering faculty and students. He used a mouth-held electronic "straw" to control the kayak.

In this video, the kayak is christened while a participant shouts " God bless Cal Poly!" Bryan is shown being transferred into the kayak via a lift. Once in the kayak, he independently navigates through the water via a sip and puff device. Afterwards, he is interviewed about his experience.



For an article about this program, click here.