Move Away I Fear To Hear

The pain I carry in my heart
Was always there, from the start
Why can’t I get him outta my head
Fourteen years now, he’s been dead

I thought that death would be the end
I might see more around that bend
All this time I couldn’t see
How tough survival could really be

They are not telling me I can be free
To live my life as I should think it’d be
Prepare to get my ducks in a row
The day will come when I must go.

I can be taken care of when I’m there
Fewer mistakes that I don’t care
To live such life out of this place
I don’t think I can keep the pace

No friends around me any more
Can’t make my way to the grocery story
Having to rely on family
Is not the way my life should be

Keep only things that I can use
Without my problems to cause abuse
Good bye my friends, all whom I love
I’ll see you again in the realm above

Go Play – Obstacle Course – On Wheels!

Being a wheelchair user can have its ups and downs.  One of the ups is playing games in a wheelchair.  For some events (like last weeks Pickleball) I can use either my power wheelchair or my power.  There is an event called the Slolam, and basically it’s an obstacle course, both for  manual chairs and power chairs.

My first Slalom was done in a hospital-issue wheelchair.  I had to open, go through, and close doors, without knocking any little plastic pylons, and the course is done following a path from one obstacle to the next.  It took me more than 10 minutes to get through that challenge.  The second, and last time through a manual course, I was using a sports chair that was designed to fit me.  I got through the course in just over 3 minutes.

I  have done a lot of sports in a wheelchair but this one is the most challenging, I think.  I have played slow-pitch softball,  9-ball (billiards with only balls 1-9, shooting at the  balls in order), shot an air gun at targets, archery, bowling, track & field, and other things which I can’t think of now.

This autumn, I decided I would do the power course, laid out for differently, according to the athlete’s ability.  There are three quad courses, and I’ve done several of them.  This year, I was reclassified, and thus compete with people in a class that’s more competitive than the one that I did before.

The time was finally right, I put on my helmet (required), and I went through that course.  It may be a little different from the obstacle course most people think of when they hear, “obstacle course.”

Wheelchairs And Sports

This YouTube video is of the 36th National Veterans Wheelchair Games, in Salt Lake City, in which I took part.  I thought I would share it so you all can see a bit of the types of events I, as well as all the friends I have made over the last 9 years, take part in the course of a week.  Enjoy!

Share Your World #31

What is your favorite part of the town/city you live in.  And what Country do you live in?
I live in a mid-sized city, which is a change from ‘Hicksville, upstate NY’, where I grew up.  From the first city on to the present, I have always liked the bustle of being in the middle of a city.  But I would have to say that my favorite part is where the city lies along the coast of Lake Michigan, especially when there is no one nearby.

I live in the United States.

Would you rather wear clown shoes every day or a clown wig every day?
I would have to say the shoes. I always kick them off as soon as possible anyway.

Which way does the toilet paper roll go? Over or under?
Over. If it’s under, I never seem to be able to find the end of the roll.

What do you do to make a living or during the day?  If you are retired what mostly occupies your day? Or if you are a student what are you studying?
I do not work due to disability, yet I do have a set schedule, for most days. The alarm goes off. The cat gets up, I get up. I take my first round of meds and feed the cat. An hour later, the second alarm goes off, and I take the rest of my morning meds, make the coffee and have breakfast. Then I move from my power chair to my recliner, after I’ve gotten dressed, turn on the computer, and spend most all day and evening, first going through all the email, reading my batch of blogs that I follow, and then I turn to my favorite Sudoku website, and that’s pretty much all I do for the rest of the day and the evening. Though lately, I’ve become inspired to get out of the recliner and go to the gym, and try to strengthen my upper body, so that I can take part in some adaptive sports for wheelchair users, which would be more of a challenge (Haven’t made it to the gym yet, and I got back from a week of games in Salt Lake City a month ago today.) My next round of events is in three weeks, in Chicago, and I need to build up my strength and endurance for the coming events there. Then my life goes back to recliner mode until near the end of September, when I go to San Antonio, TX for three days of events there, but nothing strenuous due to the heat and humidity there.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?
I think this may sound a little strange, but I’m grateful for Mother Nature last week, when she put on some mighty fine fireworks (thunder and lightning), which I love dearly, as long as it’s not one of those where the wind is bending the trees over, and the rain is moving sideways rather than  down. Those are a little scary. But I’m grateful to be here, able to watch, and listen and listen to a heavy downpour of water.

In the week coming up, I’m looking forward to an entire week with absolutely, not one single appointment for the entire week. When this happens, I can vegetate relax in the shade, without any pressures to go somewhere except for the grocery store.

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Cee’s Share Your World is a weekly feature and all are welcome to play along.

What’s going on in your world?

Pain And Determination

I have been here in Salt Lake City, Utah, since Sunday afternoon.  When you are in the sun during the day, it is like sitting in an oven (not that I’ve ever actually sat in an oven).  But yesterday morning was cloudy, and there was a little breeze.  I wasn’t doing anything until 1pm, so I went sight-seeing (and looking for a drug store).  It was really nice and I took a lot of pictures.  You can check some of them out on my Facebook page – http://www.facebook.com/vanbenschotenk.  Here is a good sample of what I’ve seen and done since Monday morning.

 

During the past four days, I have pushed myself to compete in four events during the National Veterans Wheelchair Games here.  I have bowled Silver medal), ran the motorized slalom (an obstacle course for power chairs – gold medal), played 9-ball with two other women, both of whom I already knew (bronze medal), and played Boccia Ball (no medals, just had fun… I was winning until the last round, when my opponent pulled ahead with a final score of 4-3).

But it’s not about those medals!  It’s about grit and determination, friends and fun, and great competition.  Having MS, I suffer from fatigue most of the time and it’s with a lot of effort that I go out and compete like this.  And I don’t only do it here.  I also take part in the Valor Games (for veterans with all disabilities), in Chicago and San Antonio, where I push myself a lot more to succeed.

Now I am looking at participating in new events through other types of games all over the country.  I also have set a goal to go back to the gym on a regular basis, participate in adaptive sporting clinics, and get myself out of that recliner, where I normally spend most of my time.

I want to get stronger, and more active, pushing through the pain and fatigue and succeeding in doing the most I can do and not give in to this disease (MS).

That will take pushing myself to do more, all that I can do, with determination and grit.  I will not give up!

How Well Do You Know Me?

Do You Really Know Me?

Child Within

I have done several challenges, but I’m not so sure about surveys.  Maybe I’ll even get to know me a little better.

1 – Boxer shorts or budgy smugglers? I don’t know what budgy smugglers are, and I don’t wear boxers, so I guess I would have to answer with neither.

2 – What color of underwear are you currently wearing? Pink.   They match the shirt and socks;

3 – How long have you been wearing them for? About 3 1/2 hours

4 – Do you ever use binoculars to watch people?  The only pair of binoculars I own can’t see through walls, and I don’t usually take them with me when I go outside, so no.

5 – Have you ever kicked someone in the groin?  You have no idea how many times I’ve wanted to do this, but I’d just lose my balance and fall down.

6 – Would you pull a trigger?  Would and have (I was in the military).

7 – If you met your favorite celebrity, and they wanted to make out with you, would you? No, because I know it would lead nowhere, and I want to go somewhere.

8 – Have you ever slept in the same bed with someone you were not in a relationship with (not talking about sex and one-night-stands)? Yes. He wanted sex, but I didn’t. He ended up staying for the night though.

9 – Have you had one-night-stands?  No.

10 – Does sex have the same importance to you now compared to when you were younger? Due to aging and medical issues, I would have to say no.

11 – Have you ever eaten a worm?  They look like fat mini-snakes, and snakes is what I hate the most. ABSOLUTELY NOT!!

12 – What’s the grossest thing you’ve eaten?  Raw squid.

13 – How long do you spend sitting on the toilet?  As long as it takes.

14 – What do you do when you sit there (besides the obvious)? Play Sudoku on my tablet.

15 – Have you ever been peed at?  Why would someone even do that? No.

16 – What’s the grossest thing you have ever swallowed?  That goes back to the squid.

17 – What’s the constantly dirtiest place in your home?  The bathroom. No matter how hard we try, neither my aides or I can ever keep up with the cat litter. You can sweep the entire floor thoroughly, and when you have finished, there is still litter on the floor.

18 – Why don’t you clean it?  It’s hard for me to do that from my wheelchair.

19 – Do you eat your boogers?  That is absolutely gross. No.

20 – Can you describe the one smell that makes you gag?  Vomit

21 – Have you ever had head lice?  No

22 – Have you ever been utterly disappointed in someone?  Absolutely. It was someone I trust completely, and yet they let me down.

23 – Have you ever been scared of someone?  This one is easy. I was afraid of my mother for the first 53 years of my life.

24 – What do you do when you’re drunk that you wouldn’t want anyone to know about?  I no longer drink, and I can’t remember much of what I did when I used to get drunk.  That’s probably why I quit drinking.

25 – Have you tried pole dancing?  The only pole I get close to is the one in my bedroom I use to transfer back and forth from my chair to my bed.

26 – Have you been in a strip club? I’ve never even seen one from the outside No.

27 – Have you ever run over an animal?  Back home I would run over the occasional woodchuck.

28 – Have you ever peed in snow? I would freeze my you know what off if I tried to do that. No.

29 – Have you ever made fun of someone and then regretted it? Way too many times.

30 – What’s your favorite kind of question on Cards for Humanity (if you know the game)? Do not know this game.

31 – If the father of your best friend hit on you, what would you say to him? Get lost mf.

32 – Would you go out on a date with someone half your age or double your age? Not half my age, but I did end up in a relationship with someone who was two years older than my mother.

33 – Do you clean the sink after brushing your teeth? I rinse it out.

34 – Have you ever spat in someone’s food or drink?  Never. I have such a bad case of dry mouth from all the meds I take, I would have to build up enough to even be able to spit.

35 – Have you ever kissed someone only to be grossed out afterwards? More times than I care to remember.

36 – What is your number one goal in life, and are you living it? When I learned I had MS, I started setting goals. The number one goal is to never give up.  I’m still here so I guess I haven’t given up.

38 – Have you ever danced and/or cried in the rain? I don’t like being out in the rain. No.

39 – Have you ever ditched work to just chill out on your own (with or without Netflix)? When I was a whole lot younger than I am now.

40 – What do you wish you were doing right now (anything goes)? Shopping. I love just going out to find something to buy.  But it’s raining outside, and I would have to wait in the rain, in my power wheelchair to catch a bus.

This was a lot more fun than I expected it to be. There was no nomination list, so I nominate you all to take this survey, so we can all learn how bad each of us are.

Happy thinking…

~ van ~

It Took A Long Time To Find Me

ViviLnk

Karen Van Benschoten

First of all, and most importantly, I am a survivor of incest – father. My first blog post started out in limbo, but gravitated to poetry, written to express feelings as they arose.

But I also had an ongoing fear relationship with my mother, whose moods were unpredictable, often changing at the drop of a hat. These moods were almost always negative, and I lived my life in fear of her. She was also a mean person, to us kids (3), towards my dad, grandmother, and even to her boyfriend, whom she lived with after my dad died.

I have MS and sometimes write about struggles that I sometimes experience. I also do adaptive sports from my wheelchair. I’ve played table tennis, 9-ball, archery, air rifles, bowling, softball, kayaking, basketball, Pickle ball, and more things that don’t come to mind now.

My goal is to stay active, continue to travel, and take pictures along the way, as I carry my camera everywhere I go.

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Photo Credit: AnnMarie Aoyogi

I remember, even as a small child, being told constantly what she wanted me to do, and what she didn’t want me to do. It never seemed that I could do anything right, and I couldn’t seem to please them. This carried on into elementary school, junior high, and high school. I was constantly causing trouble while I was in school, since I couldn’t do anything fun at home. I got myself a reputation for being a brat, sassy, and refusing to behave. This behavior was the result of physical, mental and sexual abuse at home.

I started learning to play the clarinet, when I was ten. I kept this up. I got involved with the Music programs at school, and I finally found a direction. I thought. I stopped causing trouble and concentrated on my music, teaching myself some piano, learning how to play both the alto, and tenor saxophones, and this filled up all my free time. My plans were to major in Music at a college, and become a music teacher. Good intentions. I applied at schools and was accepted at a 2-year school two hours away from home. I was on my way. I thought.

I moved away home and found a new freedom that I’d never experienced before. I became a full-time cigarette smoker, and started drinking mixed drinks. After about a year, alcohol became more important than school, and by my fourth semester, I dropped out. I soon ran out of money and had to move back home.

After all that freedom, I was right back where I started from. To me this was intolerable. I applied to join the US Navy, and within two weeks, found myself on an airplane, headed for Boot Camp in Orlando, FL.

I do not remember much of that night before I raised my right hand and committed myself to serving my country. I was back to having someone telling me what to do, what to wear, when to wear it, when to eat, when to sleep, and pretty much everything else they wanted me to do.

Scan_20141111Somehow, I made it through Boot Camp and was transferred to the Great Lakes Naval Station, in Great Lakes, IL. Once again, I found that freedom, just not as much of it, and I was on my way. I thought. After 9 months of Naval service, I was discharged for unsuitability due to alcohol abuse, and not recommended for re-enlistment. I had failed again.

After my discharge, I wandered aimlessly from one abusive relationship to another, seeking out those who would be abusive, because that was all I knew. I eventually stopped drinking enough to get myself through a 4-year school, and graduate with honors. I started working almost immediately, in a position that suited what I had just finished school for. This was it! I was on the right track. I thought. Trouble was, that track was going in more than one direction. I left that job that I was very good at, to start work at a new company. This was it. They sent me to another company to learn a new software program, that was to be used to keep track of inventory. I learned it well, and I came back to my job, armed with a purpose, a task, and a direction. I thought.

Unfortunately, due to stress from this job, which I was not performing in the way I should have been, and a family history of mental illness, I caved in to my own mental illness. I lost that job, and spent the next couple years, jumping from job to job, and psych unit to psych unit. I was lost and I feared I was never coming back from that abyss. I spent a lot of time in therapy sessions, both group and individually, went through several medications, therapists, and even doctors, before they seemed to find the proper mix of all the above, and I started to find myself.

I learned that if I kept my mouth shut, I would stay out of trouble, just like in Boot Camp. This time I was not going to give up. About three years later, I was diagnosed with MS, and that brought me to a halt. I had a disease, though not terminal, would eventually wear me down to become bed-ridden, and then die. This time, though, I was not going to give up. I decided I was not going to give up on me.

I had learned that I needed to find a direction to go, and to go there. I needed to diligently follow this direction, and stay active in the process. While I was still in the hospital, I learned about their adaptive sports wheelchair team. This simply amazed me.

Run Off TrackEvery year, I would prepare for the upcoming trip to a new city, honing my skills in one sport or another. I found I liked being in competition with other veterans who were in wheelchairs, in a multitude of sporting events.  I was also in competition with myself, to do the best I possibly could.

Something else happened after I got out of the hospital. I needed an aide three times a week to help me with the household chores and such. My second aide was a Pastor’s wife. She liked to ask me a lot of questions about my past experiences with religion, until I told her that I didn’t want her asking me these things, as this made me uncomfortable.

But something changed, and I started asking her questions about her church, which was a biker church! I asked her if she would pick me up for church. She did, and continued to do so. I had found God, and I found my direction.

I made it my goal to become a better person all together. I started being nice to people, and was treated so in return. I learned what was expected of me due to my religious beliefs, and I started living my life this way.

Day by day, I roll on, doing the things I need to do, to please God and live the life He wants for me. Now, when I get up in the morning, I know what the day is going to be like, even if I don’t know what is actually going to happen.

Today, I don’t walk with intention, but I roll with intention, with goals and a new-found reason for living. Now, I live that life as best I can. I sometimes fall, but I just pick myself back up, and keep on going. People who know me have seen the change in me that has occurred during the past few years, and they like what they see. I like what I see in others, and want others to have the life like the one I was living.

I strive for improvement, and knowledge, and a life filled with opportunities for so much more than I never dreamed of. Now I roll with intention. I have found out who I am, and who I can be. And I never thought that was going to happen.

Now I Get It – Dungeon Prompt

For years I had been going to the doctor, with this problem, or that problem, or the other, yet we couldn’t seem to figure out why I was having any of these problems.

One especially bad day, when my limbs all felt like they weighed 200 pounds each, and while just sitting, I felt like I was going to pitch right over onto my face.  I went to the Emergency Department at my VA Hospital.  They ran tests, they did a CT-scan, and after eight hours in the ER, I was admitted.

There was still no explanation as to why I felt the way I did.  The next day an MRI of my brain was done.  Four days later, on Friday the 13th of July, 2007, I was visited by my neurologist, who then told me that she was 99.9% sure that I had MS.  As if that wasn’t bad enough, they also found a 9 mm aneuryism on my right, inner carotid artery, which required surgery ASAP.

Two weeks later, the surgery was done, but the MS was still there.  It came to the point where I needed some help in order to keep on living independently.  The VA ordered an aide for three hours, twice a week.  That was the beginning of the rest of my life.

I got an aide who was the wife of a biker church minister.  I hadn’t thought about religion, or anything close to it up until then, and I didn’t want to hear anything from her about it.

Then one day, I asked her about it, checked out their church, and continued to go until I found God, which didn’t take very long.

That was when I had my now-I-get-it moment.  Things weren’t just happening to me, there was a plan in place that no one but God knew about, or why it was there.  I one day suddenly realized that if I hadn’t been diagnosed with MS and the aneurysm, I would not have found my way to God.  What a rough road it has been, but the benefits of this plan, way out-weighed any need for an explanation to the question, “Why?”

Now I know.

Child Within Is Starting To Grow

If I want to get somewhere,
I need to find a way to get there,
It’s hard to get there on my own,
I need a vehicle of my own.

Child WithinMost of my life was full of need,
But somewhere there, existed a seed,
When this seed started to grow,
It seemed that I was the last to know.

Last to see a whole life new,
From this seed it grew and grew.
Now I see that I can do,
Much more if I really want to.

The child that still lives inside of me,
Can be whoever she wants to be.
The labels that held her down,
Only cause her now to frown.

As this child starts to grow,
I can do much more, I know.
I can do what pleases me,
If only every one could see.

Run Off TrackThe chair that tries to hold me back,
Tried to run me off the track,
The track that leads me up and out,
Helps me make the whole world shout.

I can do whatever I please,
I can be whatever I please,
I just want everyone to know,
The child within continues to grow.

Alone Again

image011The cold has come and settled in,
I stay at home a lot again.
Unable to get my chair through the snow,
But no one else seems to know.
The time I spend all alone,
Someone comes and then they’re gone.
Left alone again to find,
Something to occupy my mind.
My eyes are sore from the computer screen,
Rarely am I ever seen,
Away from here, outside my door,
Even unable to pace the floor.
The disease slowly taking away,
Things I used to do every day.
I need someone to come and see,
That there is much more to me.