Saturday, August 29, 2015

The ExerCycle: Time to Get Moving Again

Early this year, I was lucky enough to connect with a friend who helped me figure out some exercises that would work for me, without wearing down my body.  They worked, and I kept up with them for an amazing four months (about four times as long as anything had previously lasted, before my body started hurting and needing a break.)  It wasn't the exercises fault, but between a finnicky tendon and a pinched nerve, the past couple months have been largely exercise free.  No need to aggravate already injured things, right?  

As I'm forever in search of low impact exercise that will allow me to keep moving but won't be too stressful on the bod (and as my heel and my neck are largely better) I had the inspiration come to me about a week ago: What about an exercise bike?

I rode a bike (a cool three wheel blue thing with a giant basket and hand brakes) when I was around eleven.  And aside from that, had to ride a stationary bike as part of rehab from surgeries I had at ten and eleven years old. (I still remember one amazing night when I voluntarily rode the exercise bike in the living room for an entire episode of Beverly Hills, 90210.)

ANYWAY, my sis went on the hunt, immediately, to see what kind of options there were out there for exercise bikes.  We pretty much dismissed the traditional ones, as they aren't meant for shorties like me, and very difficult to mount.  We looked at other options.  None seemed quite right.  They all seemed to require a lot of set up, and didn't have adequate pedals.  (I definitely NEED comprehensive straps to have a prayer of keeping my feet in place.)

Then, my sis found the exercycle.  Relatively small and ready to use out of the box, it seemed like the best option for me.  (Plus, thanks to another disabled user's tip, we also bought me sandals with a lot of straps, and used the single strap on the pedals to secure the sandals to the pedals.)  

Another great thing about it is that it's motorized, so it pedals by itself.  For me, this means I get to experience a smooth pedaling motion for the first time in my life.  Pretty awesome.

The first few times I had Tara help me strap my feet in.  The first day took a long time.  Yesterday (pictured above) it was really quick.  So, today, I thought I'd try to strap my own feet in...

5 minutes later...

So, I'm pretty happy with it so far, especially the fact that I can get on and off independently.  I've been doing 20 minutes a day.  I plan (per my friend's recommendation) to go three days on and one day off, so as not to overwhelm my body too much.  I'll slowly bump up my riding time until I'm doing 30 minutes a day.  I can already feel that my calves are getting a major workout, and I've been sleeping great.  (Forgot how awesome the sleep is when I'm exercising!)

Just putting this out there for anyone else who may be looking for an exercise option.  This is definitely one worth trying!  (But be careful when adjusting the pedals - they pinch!) 

Friday, August 28, 2015

The Worst Birthday I've Had

The worst birthday I've had, I think, was my 21st.  It happened at a time when we were having a lot of family issues.  There was a death in the family right around our birthday that year, as well as other things.  It was more than that, though, because 2002 was a difficult year generally.

The singular good memory I have from that birthday was our uncle taking my sis and me (plus my younger cousin, and youngest brother) to the movie theater and we all watched Spirit: The Stallion of the Cimarron.  It was a beautiful movie, and one I felt deeply connected to.  

As I don't have any pictures of me from my 21st birthday, I chose this one, from about six months later.  It's very posed, and though they are my own clothes, I'm supposed to be dressed as someone else. 

It was a very painful time to be myself.

Saturday, August 22, 2015

Movie Review: Finding Nemo

Finding Nemo has been a favorite movie of mine since it's release in 2003.  With the impending release of its sequel, Finding Dory, I thought it was a good idea to review the movie for its disability representation.

In a word, I find it spectacular.  While you won't see Finding Nemo (or any film or media not featuring actual disabled human characters, because it is far too easy for we, as disabled people to be dehumanized) on Tonia's Big List of Resources for Learning About Disabilities I think there's a lot to be absorbed via this movie.  It's positive for people of all ages and all abilities, especially when viewed with an eye toward some of the film's disabled characters.

First and foremost we have the titular character, Nemo, a clown fish who was born with an injured fin after a barracuda attack (which killed his mother and all 400 of his siblings.)  Nemo's father, Marlin, is extremely vigilant about Nemo's safety, and would prefer to cocoon him at home, rather than risk his injury or death in the ocean.  Nemo, not knowing his life another way, wants nothing more than to start school and be like the other school-aged sea creatures, being taught by their scientist teacher, Mr. Ray.  Resenting his dad's protective nature, Nemo swims into open water, to prove to his classmates he is brave, and touches a boat.  He gets scooped up by a SCUBA diver, and whisked away.

While trying to find Nemo, Marlin meets Dory, a blue tang, with short term memory loss.  Though her deficits are clear, we see immediately that Dory is more than comic relief.  She possesses keen instincts, she's literate, and she can speak many different dialects of whale.  Much like with Nemo, Marlin doubts Dory's abilities, and repeatedly tells her the same thing he'd told his son:  "You think you can do these things, but you just can't!"  When, in despair, Marlin tells Dory he promised he would never let anything happen to Nemo, Dory responds matter of factly that "That's a funny thing to promise.  If you promise never to let anything happen to him then nothing would ever happen to him."

Meanwhile, Nemo's taken to a dentist's aquarium in Sydney, where he meets a moorish idol named Gil, who has a similar fin injury.  When Nemo gets stuck in the aquarium's filter, Gil instructs the other fish not to touch him.  When Nemo says "I can't [get out] I have a bad fin!" Gil turns to the side to show his own injured fin and says, "Never stopped me."  Gil talks Nemo through getting out by himself, and Nemo's able to free himself independently.

Marlin and Dory are on the right track to finding Nemo, thanks, in large part to Dory's strengths.  When she and Marlin part ways, she says, "I remember things better with you," which speaks volumes of how we, in the disabled community can thrive with the right support and environment.  In the end, Marlin and Nemo are reunited, and because of spending so much time with Dory, Marlin learns to also have confidence in Nemo's abilities. which are numerous.  He's a great listener and he can problem-solve, using skills he learned in an earlier setting.  He is compassionate, brave and protective like his dad.  Most of all, he does not hesitate to act when a situation calls for it.

Whether you watch this film yourself, for enjoyment, or with your kids, don't overlook the disability representation in this film.  Don't be afraid to talk to your disabled kids about what Nemo, Dory and Gil's disabilities are, but also what they are really great at.

Plus, it's just a really great movie, so time watching it, is definitely time well-spent.

Friday, August 21, 2015

The Best Birthday I've Had

The best birthday I've had was actually our 17th - exactly half my life ago.  There are others that stand out for other, positive reasons, but none quite as much as this.

We'd invited quite a few friends from high school, if I remember correctly.  Four showed up.  Not exactly a banner turnout, but it wasn't about that.  Because our 17th birthday took place six months after Tara almost died of a massive brain hemorrhage.  It was still so soon after that I was looking at every celebration with an extra amount of gratitude, and an extra awareness that Christmas and four subsequent family birthdays prior to ours could have been very different.  As a twin, I could have faced the unthinkable possibility of celebrating my birthday, alone, instead of celebrating our birthday, together.

When that day came, in June of 1998, I was never too far from that sense of awe, shock and appreciation, that we were given this gift.  This opportunity to celebrate turning 17 together.  The presents didn't matter, though I was grateful for them.  The friends who showed up were also so important to us, and we had fun eating pizza around the picnic table in our driveway, and watching our youngest brother, Tanner (only 2) play with the hose, try to water flowers, play with his Super Soaker, manage to get whatever makeup we'd been given on his face, and get in on the group shot of us and all our friends.

I was genuinely, deeply happy, knowing that I had already been given the best gift anyone could ever ask for: my sister, sitting beside me, celebrating, too.

My name was spelled wrong on the cake, but it didn't even matter

Friday, August 14, 2015

The Thing I Regret Most So Far

When I saw this topic was next on the list I'm working my way through for blog topics, I thought seriously about writing something about how I don't have regrets, because everything I have ever done has formed the person I am today, and even, allowed me to help others, given my experience.

Then, I thought again.

Just because I can reframe negative things in a more positive context does not take away their impact and it doesn't mean there are not aspects of my life and behavior that I do, deeply regret.  And though I don't often share about this, I feel it's important.  Because I'm sure I'm not the only person with CP who has also struggled in this way, and I want anyone out there who is struggling as I have to know you are not alone.

The thing I regret most so far is self harming.  It's something I did for the first time around the age of eleven years old, and again at thirteen.  But the struggle really began in earnest when I was twenty, when I really got caught up in the addiction of it and hurt myself three separate times over the next year and a half.  That was when I realized I had to do something about it.  I told a close friend and they took me to a counselor for a single visit.

It did not cure me.  What it did was let me know that, given my past experiences, coping this way made sense.  It fit my behavior into a context for me.  And contrary to the counselor's statement giving me the green light to hurt myself even more, I found, it gave me the courage to stop.

Hearing from them, and from close friends that "I just want to let you know that there's still going to be times where you struggle, and if it happens again, that's okay," gave me the reassurance that I had support.  With that support, I was able to look into resources on my own to help me deal with when things got overwhelming.  I made lists of alternatives, things to keep my hands busy in a calm and productive way until the urges passed.

Six years later, I happened to read in another friend's nursing textbook that often in addition to surviving things like childhood abuse, people who self harm also often have a history of having multiple surgeries as children.  (I can count at least eight major surgeries between three days and eleven years old.)  Instead of having massive pain inflicted on me via surgeries, I wanted to be in control of it, somehow.  So, even though, at eleven, and thirteen, I couldn't articulate why I did what I did, by 21 I was willing to learn to cope other ways.  And by 26, I finally had a concrete reason why.

Today, it's been almost thirteen years since I have done anything to hurt myself.  Once upon a time, that number of years would have been unthinkable.  I remember being deeply envious of an acquaintance who had three years self harm free, while I was still counting months.  It seemed impossible then, but it isn't.  If you take it a day at a time, and are able to find people who can offer you support while you try to stop, and learn to cope in other ways.  (I still encounter triggers, and it is still a conscious choice to act in a healthy way for myself when I do.)

I'm not a professional, but I want to share a few things that have worked for me, and helped get me where I am today, in my recovery.


1)  Tell someone you can trust that you have been self harming.  You're taking a huge step in keeping yourself safe by taking the aspect of secrecy away. Make sure they know what you've used, so they can help, if possible, keep that item out of sight, especially in the early days.

2)  Look into getting counseling.  I was very against this at the time, but it really helped me.  If you're in school, counseling services are free, I believe.  If you're an adult, and have your own insurance, check to see what's covered in terms of mental health help.

3)  Know your triggers.   Mine are almost exclusively visual.  Have a safe person you can reach out to if you encounter a trigger.  Often, reaching out to someone and being honest about your feelings for long enough will allow the urge to dissipate.  If you have to use something that you have previously used against yourself, only use it in the company of your safe person, especially early on.

4) Make lists of alternative behaviors that will keep your hands busy when you are triggered.   While writing this post, I unearthed one of my first lists, which includes reaching out my safe people, doing household chores and listening to positive music.

5)  Dress to protect yourself, especially in the early days.  For me, this meant long sleeves, even in the summer, and especially while I was healing.  I also wore bracelets around my wrists, and lotions or perfume, as a positive sensory association and to remind me to treat those places well.

6)  Use the urge to control your pain in a positive way.  Especially if you have CP and have been through many surgeries as I have, know that consciously choosing not to hurt yourself will help so much in the long run.  By choosing not to hurt yourself you are still in control of the pain you experience, and you are helping the healthy part of yourself grow stronger and stronger.

7)  Each moment is a victory.  I know that sometimes days, weeks and months seem like insurmountable lengths of time, when you are triggered.  So know that each moment you fight back by not harming yourself is a victory.  Know that if it happens again, though you can't change your history, you can always start from right this moment, and make a new end for yourself, by continuing to try and keep yourself safe and healthy.  Know that I am with you, cheering you on

Participating in a To Write Love on Her Arms event in 2010, which raises awareness about self injury

Monday, August 10, 2015

Book Review: Messenger by Jeni Stepanek

I first read this book shortly after its release, and I reread it again recently, with the objective to be able to review it here.  First, it should be stated that Mattie Stepanek is my favorite poet.  I'm also a poet, in no small part, I think, thanks to him.  I first found out about him in the spring of 2003, having happened upon the CD he and Billy Gilman collaborated on, Music Through Heartsongs.  I was devastated when I learned Mattie died the day after my 23rd birthday.

After his death, I bought all his books (all 6 of his Heartsongs volumes, plus Just Peace.)  When I heard, years later, and completely by chance that Jeni, Mattie's mother, had written a book about Mattie's life, I was instantly interested.  Having read Messenger a few times now, I feel like I can, perhaps, give a somewhat balanced account of my thoughts.

There is little, if anything, that I dislike about this book.  Jeni is thorough and honest, and at times, that means reading about themes the average reader may find uncomfortable:  the death and preparation for burial of four children, a child facing their own mortality, extended stays in the pediatric intensive care unit, grief in early childhood, the deep impact of September 11th and the subsequent war on a child, and the Catholic faith.

Mostly, though, Messenger touches on extremely important issues, many of which touch the disabled community on a continued basis.  These include:  being a disabled parent raising a disabled child, abuse, living in poverty, and the ableist attitudes in the medical community.  Without being overbearing, Jeni Stepanek writes about the importance of friendship in both hers and Mattie's lives.  She writes about how she taught Mattie to focus on the things he could control, in the face of so many things he could not, like his attitude.  She writes about the importance of summer camp in Matie's life.

There is even more to look forward to in this book, however.  Jeni shares about the unexpected impact fame had on Mattie, about her experience parenting a child with accelerated emotional and intellectual intelligence.  She writes about the devastating but necessary conversations she had with her youngest son, respecting his right to talk about end of life care.  She believed in letting Mattie be fully informed about medical decisions concerning him, and letting him make his own final decisions, as the end of his life drew near.

I admit, there were not many chapters I was able to get through, without shedding tears.  Jeni's writing is poignant, and I continue to believe that this book is one of the most significant I hae ever read in terms of the disabled community, and the only one I have ever read that details a disabled parent raising a disabled child.  I would absolutely recommend this book to anyone (above 18, as it does include some grave themes.)  Such an important read for disabled and nondisabled readers alike.

Follow Jeni Stepanek on Twitter 

Friday, August 7, 2015

The Person I've Had the Most Intense Romantic Feelings For

Some of you may be wondering why I've been posting these anecdotal stories that don't necessarily have to do directly with my CP.  It's because I think it's important to know that disabled people are complex and unique.  We all have our own stories.  And  we, as human beings, share similar feelings and experiences with disabled and nondisabled people alike.  I like sharing stories about other parts of my life.  As I am the one living them, and telling the stories, I feel like they do reflect my experience with CP, because it impacts every aspect of my life, including my interpersonal relationships.

This is something I've never written about, because at the time it happened, I was so totally nervous and ashamed that I dared not commit a word about it to paper anywhere.  I've had to look back and piece it together the best I can.  I wasn't even sure of the year until I did some checking in past journals.

So, lets get in the proverbial time machine and back it up almost ten years.  I was 26.  Not exactly a spring chicken, but I did have quite a bit of naivete going on.  At the time, I was just wrapping up my experience with organized religion, about to break from the church (and having already chosen not to return to work at the Christian summer camp) I was affiliated with.  Suffice it to say, at the time, all the friends I had were from this religious background.

One stood out.  There were so many things about her that I loved and admired:  her compassion, her willingness to act when a situation called for it.  I loved how outgoing she was, and I loved her laugh.  We had fun together.  And I also knew I could count on her, should I need a friend to come through for me.  We didn't hang out super frequently, but on a somewhat regular basis, we would touch base.  Usually, in the beginning, I'd call to see how things were going.  She'd call a bit less often, but those were the times we ended up getting together.

It was May or June, and I'd just taken one such phone call.  We kept it local, hanging out as usual, chatting about what really mattered, and as I looked at her, I felt this spark of something.  My romantic feelings at this point had been pretty nonexistent for anyone, so, to feel this was new and shocking.  It was a feeling like I was drawn to her.  Like I could kiss her (assuming she consented, and assuming I was brave enough, which I wasn't.)

Just as I was having these feelings, like, literally at that exact second, she was in the midst of telling me about this conflict she'd been having with another female friend.  She started saying something along the lines of "this friend confessed to having a crush on me."  She was clearly thrown off by this.  Felt awkward.  Uncomfortable.  Talked about how she was going to have to, or had already, ended her friendship with this other person.

I broke eye contact,  This friend and I had so much history, in terms of the depth of our friendship, and it wasn't something I wanted to lose.  We moved locations, talked for hours, really connected, but I never spoke about my spark of attraction for her.  Not for three more years, which is when I finally admitted to myself that I "found women pretty."

Not every woman.  And I definitely didn't want any bedroom things happening between me and any woman.  But aesthetically, I've always been more drawn to women than to men.  I was so confused, and afraid when I started admitting this out loud to a few people I deeply trusted.  (Though I thought it meant I was a lesbian, and it was several more years before I realized I was asexual.)  I thought it meant people would judge me and not want anything to do with me.

Meanwhile, my friendship with the above friend continued.  Over time, I realized that despite our deep history, we had little in common.  I felt like I had changed so very much from the person I'd been when we first met, while she had stayed largely the same.  More than that, I've had the conflicting realization that while her eyes still do that thing to me, I don't find her emotionally attractive.  In fact, her energy isn't something I want to embrace or welcome in my space.  The last time we saw each other, it was more awkward than I can say, and annoying, realizing that seven years later, I still found her so physically lovely.

This friend has been there for me during some of the most difficult times in my life.  She has come through for me when I desperately needed someone.  I won't forget that.  I will always hold it dear.  But I regret that I have felt so much shame about an attraction that I've waited almost a full decade to write a single word about it.

I'm done with the shame.

I found a woman beautiful.

Celebrating turning 26!