Happy Labor Day

Happy Labor Day.  Wishing everybody in the States a wonderful "end of summer" weekend while celebrating America's workforce.

Reminder that the eBook version of Toe Up to 10K is scheduled to be released on September 5, 2014.

What will happen is, on Tuesday, I will authorize the distributor to release the ebook to eretailers, and it will take approximately 2 - 4 days to appear on Amazon, and then 1 - 4 weeks on other eBookstore sites. So, technically, the book can go on sale as early as September 4, or it might take up to September 8 for it to first appear.

To the best of my ability, I will try and set it up so that you can order a copy from the distributor through my website.

As Monday is a holiday, the next post will probably not be until September 2 or 3.

  

Tristan's Road to Recovery

 A few days ago, I came across, via a Facebook posting from Life After Spinal Cord Injury a FB page about a young man who had a diving accident and broke his neck in late July, 2014.

I do believe one of the greatest benefit of social media sites such as Facebook and Twitter is to allow strangers to interact with each other in a positive way.  By creating the page, the family has let us strangers into their lives so we can provide support.

I want to do my part in passing along the page.  Please visit the page, and I encourage you to send your support and encouragement to this brave young man and his family and friends.

Tristan's Road to Recovery

Toe Up to 10K sale date 9 Days Away

The ebook version of Toe Up to 10K is ready to be released, but I am waiting until after Labor day to release it.  So, the date for release is September 5, maybe it will be out on some ebook retailers on September 4.  Once the distributor releases it to the e-retailers, it is up to the e-retailers to post the book to their sites, and that can take 48-72 hours or more.

The physical version of the book, the proof is ready. There is an issue I need to get an answer to, and depending on the answer, it might also be out on September 5, or perhaps a couple of weeks later.

However, the good news is the production of the books is progressing and it looks like it will be on sale very soon.

Great Resource website: Spinalpedia

Spinalpedia is a great resource website.  I wish I had found it before I completed my book, Toe Up to 10K.

I couldn't find any better way of describing the site, so below, i copied and pasted their blurb about what they are:

SPINALpedia is a social mentoring network and video archive that allows the spinal cord injury community to motivate each other with the knowledge and triumphs gained from our individual experiences.


Here is the link:
Spinalpedia

Evolution of Reasoning Behind Toe Up to 10K

When I was in the hospital, I wanted to have a baseline to compare my recovery.  I wanted to know wanted to know when my legs would start to move, when my bladder and bowels would recover, when I would be strong enough to stand, etc.

Except for that I would probably spend a year in a wheelchair and that I would be walking "well enough: in two years (and this was stated when it was thought I had Guillain-Barre syndrome).  And no answer to when and how the bladder/bowel would recover.

Finding info on regaining the ability to walk wasn't so bad.  There were some stories of people were able to walk again, but there were other stories of people who were still not able to so after some years, and some who took several years to regain enough strength to stand.  However, just finding stories of walking recovery were difficult to find.

As far as bowel and bladder recovery, I found even less info.

So, initially, I wanted to share my chronology.  I know everybody recovers at a different pace, and the amount of recovery differs among individuals, and the issues differ depending on where the injury(ies) took place, but if I contributed my story, there would be at least a record of how, how long, and how much I recovered from my issues. 

But as I wrote the book, and as I experienced a rather rapid pace towards "normal enough," my theme seemed to change from providing my story to which others can compare to, to providing an inspirational and motivational piece for someone who finds him/herself in a similar situation - and reach out to those who have issues other than physical, and perhaps use the same strategies I did (finding inspiration, movitation and working towards goals) to overcome his/her obstacles - with the one advantage I did not have, which is the trial and error I went through to find the right mind-set and action-set.

So, what I think I ended up, with Toe Up to 10K, is a book, superficially chronicles the timeline and progress I made during my recovery, but is really about how I drew inspiration and motivated myself to recover as best as I could.  I realize that I've had a remarkable recovery, and I know not all of it is due to own hard work - that my body responded to some intangibles, but I don't think I would have recovered as well as I have without the work I put into recovery - and ultimately, I just wanted to share my story, for I believe each story of a successful builds upon other people's stories and provides inspiration for those who found themselves in the same situation I found myself in two years ago.       

Affirmations

When I was in high school and college, and even into my thirties, I had periods which I recited affirmations on a daily basis.  They wouldn't always be the same, but one I became reacquainted with recently is an old stand-by.  I remember first coming across it in a self-hypnosis tape I listened to so much that the ribbon finally broke years ago.  But this particular affirmation, whom I don't know is the original author, I've come across this same affirmation from different sources on the internet recently.

It goes like this:  "Everyday in every way, I am better and better."  

Recently, I have started repeated this affirmation several times upon I waking up and before I go to sleep.  Of course, sometimes I forget, but I try to remember each day.

I don't know how how long this will last, but for now, it makes me feel good, and motivates me.  

Inspiration from helpful strangers - Twitter

Twitter is a strange place.  About 99% of the people I follow or who follow me, I don't know personally,  yet I read their tweets, RT, favorite, and sometimes reply to the tweets.  Sometimes this is where I get breaking news, as someone will tweet about it before I hear about it on the news. But its main use for me is to find books to read, and to read interesting quotes (tweets), mainly the inspirational, motivational, and sometimes whimsical ones.

This blogpost is about one particular tweet that was relevant to me on several levels.  So, here it goes as best as I can explain it.  @BruceVH  @themovingroad

 I follow life coach and runner Bruce Van Horn on Twitter.  I follow him because his tweets have an inspirational and motivational quality to them.

So, earlier this week, he tweeted about a paralyzed man in the UK who blogged about Van Horn's book on training for a marathon, and how the book inspired him, and how he applied the tips to his own situation.

I opened up the tweet and read the blog post.  This man, Steven Webb, was a runner until he broke his neck.  Through Twitter, he "found" Van Horn, and eventually read his book on marathon training, and though the book itself is on marathon training, it can be applied to one's own situation.

After exploring his blog, I found out that Webb is writing about his experiences with paralysis, one project seems to be a book in progress titled, The Moving Road.  He has other writings available, including a blog he maintains.

Now how did this apply to me?

1. In 2012, directly or indirectly from meningitis, my spinal cord was damaged.  Fortunately, my time in a wheelchair was limited to four months. So, here was an instant connection to Webb.

2.  During my recovery process, a goal I have set for myself is to someday be well enough to run a 10K race.  I'm at the point where I can walk as fast as I can before I got sick, can actually jog, but I really can't sprint. I can, but I can't - it's hard to explain.  So, although I was already a Van Horn follower, the book Webb reviews, You Can Go the Distance, connects to me.

3. Webb writes that he applied some of the techniques to his own life, though the book is targeted at marathon training. One of the strategies I've used throughout my recovery has been to find inspiration from all sources, songs, movies, stories about others who have overcome obstacles, etc. It didn't matter whether the subject dealt with spinal cord injury or trying to reach the championship game in a high school baseball tournament - I've tried to apply these "lessons" to my own situation.

4.  Webb shares his experience through a blog, as do I, and also is writing a book.  Van Horn also shares his knowledge and experience through writing.  Before I got sick, I had two books out, and a third one, Toe Up to 10K, which will be out around September 5, is my book journaling my recovery process from spinal cord injury.   So, there is a fellowship of authors here, but more important is the sharing of our experiences.  When one finds him/herself in a situation, we want to learn what's next.  Everybody is different, and by reading about a variety of experiences, one can find commonality with others even though the exact circumstances may not be the same.  Writing about our own experiences may help others dealing with theirs.

So, one little tweet I read from a man I follow on Twitter, but never met on Wednesday morning affected me on several levels in a positive way.

Here is the book Webb blogged about, written by Van Horn
Click here












And here is the link to Steven Webb's blog
Steven Webb's blog


Finally, some shameless self promotion.  My book, Toe Up to 10K will be out around September 5.  Certainly in eBook format, and most likely, also available in physical format from some eBook retailers.

Brain Tumor Association

One of my best friends and college roommate lost his wife to a brain tumor, and a friend at work lost his brother to the same.

The national Brain Tumor Association sponsors a lot of events throughout the year to raise money.  Here is a link to the events this weekend, August 23 and 24, 2014.

August 23 -24 Events

Action Comics #1 up for auction on eBay

Wow!

A 9.0 graded Action Comics #1 is up for auction on eBay.  It is the first appearance of Superman.

If I could afford to make a purchase like this...

Bidding is up to almost $2 million, now.

To bid, you have to be pre-approved.

The auction benefits the Christopher and Dana Reeve Foundation, which focuses on spinal cord injuries.  When I was hospitalized, the social worker gave me a reference book published by this organization, which I still use.  

The auction ends on August 24, 2014.  If you want to see a photo of a mint condition copy of Action Comics #1, view the eBay page for the auction:  Action Comics #1 Auction on eBay 

Project Walk - Seems Like A Fantastic Rehab Gym

I just found out about a chain of rehab gyms called Project Walk.

As grateful as I am for the therapy I received - and all of my therapy was done at the hospital, even as an outpatient - when I browse their website and read about their philosophy, I get really excited that there is a place like this for #SCI recoverers to go.

Because of finances and insurance considerations, I probably would not have been able to go here, not to mention that they are not in my area.  But it just seems like a wonderful option.

Not that coming here would be required.  I think I had some of the best and efficient therapists one can ever hope for, and there are lots all around.  If you are not happy with yours, look around.

I came across this place, started following them on twitter, and it seems like a really really good place.

Check out their website:  Project Walk

Backyard Parkour

Relearning balance has been the most difficult task of learning how to walk again.  But I've worked on it and worked on it, but I've gotten to the point where I can walk on top of a narrow brick planter.

What's next for me? Maybe American Ninja Warrior?

A Different Body

People will come up and ask me if I'm back to normal and I don't think I'll ever be back to normal.  Normal, Yes. But not Back To Normal.

What I mean is that although my body has recovered significantly, and I can walk just as fast as I did before (I still can't run satisfactorily), it's not the same as before I suffered the damage to the spinal cord.

It's sort of like, let's say I had a 1999 Camaro for a body.  As I recovered, the new body wasn't a 2014 Camaro, not a 1999 Camaro, not even a Camaro.  It's like I traded my body in for a used car of a different model than the one I had before.

I don't have the same body as before the injury, and I've had to get to know and read my body again.

What I would have done differently during my recovery process

Although most people would say that I recovered very well, and I would agree also that i have been fortunate to have recovered so well, I would still do stuff differently, looking back.

1. I would have done a better job of journaling my situation.  It would have helped me write my book because memories would have been jarred easier.  And although maybe at the time, I didn't want to remember the shape I was in, now I do wish I completely remember the state I was in.

2. I would have used the wheelchair more at night while at the hospital. I was exhausted at the end of each day while I was in the Rehab Unit, but in hindsight,I should have asked the nurse or nurses' assistants to take me out of the bed and into the wheelchair for maybe a half hour or more each night, just to be a bit more mobile. Fortunately, when I was discharged from the hospital, and recovering at my parents' house, I was continuously in and out of the wheelchair.

3. I adjusted my diet to adjust with my bowel issues. I have done well enough, but instead of all the expirementation I did, I should have just hired a nutritionist or dietition and worked out a customized diet for me.  Not that I would have stuck with it 100% of the time, but I think I would at least 80% of the time.  Maybe I will still do this, if I can afford it.

4. As much as I exercised before I started walking with a cane, and continue to exercise regularly, sometimes I become complacent in the type of exercise.  As you get better, the exercises should get tougher, and sometimes, now that I am pretty much recovered, I wait too long before trying tougher things. I would have kept myself on a more stringent exercise schedule after I had recovered "well enough."

Journaling your Recovery, Pt 4

I'm republishing this because I accidentally posted this early and when I re-posted, blogger seemed to place it at the original posting location.


I wish I had journaled my recovery from the time I was transferred to the Cardio Care Unit.

Even though my hands were shaky and weak, I could have written down a couple of sentences at a time throughout the day to record my thoughts.

I think journaling benefits us in several ways:

1. It records what actually happened at the time it happened (albeit through our own perceptions),

2. It helps us remember what happed.  At times when i was giving myself excuses for not writing/recording.  I remember thinking, "I don't want to rememebr what I am going through, now."  But now that time has elapsed, I wish I did record the stuff and help me remember.  I mean, I will always remember this ordeal, but truthfully, I won't remember all of it, or all the details, the bad and the good.

3. I think it is therapeutic.  To write these things down, especially of how you are feeling at these moments is helpful to your mental health.  It lets you get things off your chest on things you don't want to share with other people - or lay it on other people as much, such as frustration.

4. It really helps when you decide to write a book.  You have stuff that reminds you of things, and also brings back details.  And if you have photos, you can use those in your book.

Next:  Your Experience Helps Others

Why Writing About Your Experience Helps Others

When I first got sick and found out that my spinal cord was damaged, I was told I would walk again in about two years - not nornally, but well enough.  Of course, that was during the assumption that I had Guiallen-Barre syndrome - which movement comes back within 6 weeks.

When I was transferred to the Rehabilitation Unit, another diagnosis was presented to me: that of Transverse myelitis.  Initial movement in this afflicition takes place within 2 - 12 weeks.  When I reached the tail end of week 7, I really started to worry whetehr I would walk again - especially after one doctor said it wasn't looking too good because I hadn't regained any movement inmy legs, yet.

Even though everybody recovers at a different rate, and the amount of recovery is different for everybody, I really wanted a basebile or a timetable, and no one would give me one, excpet that they though I would be walking "well enough" in a couple of years.

So, I used the computer room, and went on the internet to try and find some answers. Not only with the walking, but, when, if ever, would I regain control over my bladder and bowels.

Still, it was difficult to find any answers.

So, that's when I decided to write a book, so people who experience a similar situation to me would have some sort of reference point, even though their recovery might take on a completly different track.

But my book took on a different track.  My editor, who is also my friend, has been involved even before this project started as he visited me at the hospital regularly.  When I finished my book, he said, "When you started this book, you wanted to provide a reference point for others, but since you had a remarkable recovery, it has turned into more of an inspirational story than informational."

And as I read other people who have experienced not only spinal cord injury, but strokes, and other ailments that require adjustments, and stories of recovery, it's apparent that sharing our stories,whether it is overcoming physical obstacles, emotional obstacles, or financial obstacles, or any type of obstacle, is helpful to people who are experiencing a similar situation - I think it lets people know that they are not alone, that other people have experienced similar, maybe worse, and have overcome their obstacle.

I think anybody who faced an obstacle, and in my case, spinal cord injury, and recovered or adjusted, should share their story.

Recording Your Recovery Pt 3

A third way to journal your recovery, video taping, is another vehicle I did not utilize.  I did take a video with my cellphone when my legs first started to move, but I couldn't send it to my email address, and then when the phone broke, the cellphone store clerk couldn't transfer any of the data held within the phone - so whatever video I took with the cellphone is lost.

A own a flipcam, but never thought about asking my parents to bring it to the hospital.  I did take a couple of videos when I first was able to lift my legs from a lying position, but it is not as impressive as live.  I might post these on Youtube someday.  I also took a video of a muscle spasm, but the video didn't accurately reflect the intesity and I enede up deleted all the attempts I made to capture this.

So, except for the video of me lifting my legs from a lying position, there are no videos of me until I reach "well-enough" recovery.

In hindsight, I wish someone had videotaped me when I was learning how to transfer to a wheelchair, trasferring from a wheelchair to a mat, trying to roll over, trasferring from wheelchair to carseat,  trying to walk with a walker, learning how to navigate a wheelchair, taking my first baby steps without support, standing up for the first time and walking (inside a pool), me eating dinner while in a wheelchair, etc.

As far as the actual taping, I should have had the same action I wanted to record several different times from several different angles.

Of course, this would have helped with my recall and also remind me of what I went through at what stage, but also, I think I could have posted these onto Youtube as a chronology to provide at least one baseline for anybody who is going through what I went through.

Pt 4: Summary of why I think journaling is important.

Journaling Your Recovery - Pt 2: Photos

In addition to writing about my recovery as it happened, another thing I did not do is take photos.

This kind of disadvantaged me in another way because I chose to write a book about my recovery, yet I don't have any "before" shots.

There are no photos of me at the hospital, lying in bed, or going through therapy, no photos of me in a wheelchair, or using a walker, the trach tube inserted into my throat.  No photos of friends who came to visit me at the hospital, and no photos of the hospital personnel who helped me so much.

Again, memories fade, and photos are a good reminder of what happened - and to remember faces.

Pt. 3 will cover video

What Do You Think

Stella Young on Not Being an Inspiration

What do you think?

I can see where she is coming from, but I tend to disagree regarding her thesis as a whole.

Here are the comments I made to the video when I viewed it:

While I agree with her that there are some residual consequences of "inspirational' images that objectify disabled people in the eyes of non-disabled people, these same images also help those who become disabled through some sort of trauma later in life.  I suffered an injury at the T-4 level in 2012.   Fortunately, I recovered - not fully, but to a point that strangers would not know (unless they observed me really closely) I suffered damage to my spinal cord.

Many people who suffer a spinal cord injury, be it via illness or physical trauma, find themselves a life turned upside down, and give up.  They don't adapt, they don't make adjustments, and some who may have the capability of regaining some functions, such as walking, don't because they won't try.  Throughout my entire recovery, which continues, I try and find motivation from all possible sources.  Stories of people who have overcome greater obstacles that I faced with my spinal cord issues, whether the obstacle was physical, mental, or environmental inspire, motivate me to try and overcome my personal obstacles.   And images similar to the ones she used helped me tremendously  in my own recovery.

If I can inspire and motivate others with my story, I am happy.  If I motivate a person who recently suffered spinal cord injury, or if I motivate a non-disabled person who sees that another person faced bigger obstacles, and overcame them, I am happy.  Truthfully, I'm not being inspirational for the sake of being inspirational to others - I am just trying to make my own life easier.  But, if the price to pay for being "unintentionally" motivational is being objectified by non-disabled people, it is a price I gladly pay.

Recording or Journaling Your Experiences Pt 1

One of the regrets I have regarding my recovery isn't physical at all.

I wish I had chronicled my recovery - by writing, photographic and video-taping.  It is weird because a few years ago, a friend was diagnosed with cancer a few years ago and he said he was going to write about it after he recovered.  I encouraged him to keep a journal and he never did.  He recovered, but is having a hard time writing his book.

I took notes throughout my recovery, which helped me remember some stuff, but I wish I had written things in detail.  While hospitalized, I kept thinking I should write and keep a journal, but at the end of the day, I was so tired that I said, forget it.  Besides my hands were so shaky that it was frustrating for me to try and make the effort to write more than a few words at a time. I remember understanding why my friend never kept notes.

That said, just yersterday, and during the writing of my book, Toe Up to 10K, I came across some scribby notes I had made, and it reminded me just how unstable my writing abilities were. There wasn't much force in the writing, and the writing was very shaky.  Looking at these notes was good for me, since it reminded me of my ability at that time.

As time goes on, our memories of events change, and writing about them as these events occur help us remember, and also remember correctly.

Pt. 2 will cover photographs.

Recording Your Recovery Pt: 4 summary

I'm republishing this because I accidentally posted this early and when I re-posted, blogger seemed to place it at the original posting location.


I wish I had journaled my recovery from the time I was transferred to the Cardio Care Unit.

Even though my hands were shaky and weak, I could have written down a couple of sentences at a time throughout the day to record my thoughts.

I think journaling benefits us in several ways:

1. It records what actually happened at the time it happened (albeit through our own perceptions),

2. It helps us remember what happed.  At times when i was giving myself excuses for not writing/recording.  I remember thinking, "I don't want to rememebr what I am going through, now."  But now that time has elapsed, I wish I did record the stuff and help me remember.  I mean, I will always remember this ordeal, but truthfully, I won't remember all of it, or all the details, the bad and the good.

3. I think it is therapeutic.  To write these things down, especially of how you are feeling at these moments is helpful to your mental health.  It lets you get things off your chest on things you don't want to share with other people - or lay it on other people as much, such as frustration.

4. It really helps when you decide to write a book.  You have stuff that reminds you of things, and also brings back details.  And if you have photos, you can use those in your book.

Next:  Your Experience Helps Others

Rachelle Friedman - Inspirational person

Rachelle Friedman had just graduated from college, gotten a job and about to be married.  At her bachelorette party, her best friend playfully pushed her into the swimming pool, but Rachelle landed head first at the bottom.

I vaguely remember reading about this when it happened back in 2010, but just found an article on her published earlier this year.  She has written a book about her experience.

Very inspirational story.  


http://www.womenshealthmag.com/health/rachelle-friedman

I Would Be Lying if I Said I Don't Experience any Bitterness

Sort of a continuation of yesterday's post.

I try and be positive; I do what I can to help me recover back to 100%.

But I can't be perfect in what I do, or how I feel.  As grateful as I am for the amount I have recovered, I wish my body and health were back to were it was pre-illness.  Except to say that I weigh about 15 pounds less, now, and my metabolism seems to have sped up a bit, as I sweat much more easily now than before. Other than that, I wish I was as healthy as before I got sick.

Thus, I do, at times, feel bitter about what happened to me two years ago, and how much time my recovery efforts has consumed, and that more work needs to be done.

If I don't feel any bitterness, I wouldn't be human.  If I don't allow myself to experience the bitterness, then it has a chance to consume me and negate all the positive recovery I'm made up to this point.  So, what to do?  Occasionally, sometimes more than other times, I allow myself moments of bitterness.  But the overall focus is on the gratitude I feel regarding my recovery and optimism about a total recovery for myself, and the motivation to reach a level of 100% recovery.