Monday, April 29, 2013

Who said being in a wheelchair was easy? Part 1

Over the past four years of being in a wheelchair, I have learned that there are people out there who think being in a wheelchair is no big deal--that it's something really easy to do (but that's because we're professionals and we make it look easy).  Over the next few posts, I want to help bring a little more understanding about what it's like to live with paralysis 24/7; the realities that most people don't see and therefore don't understand, and the challenges that I face doing the simplest of tasks.  

Disclaimer: The purpose of this is not in any way to illicit pity or praise, sympathy or admiration, and not even to complain. I want to help people sit in my seat for a bit and try to understand how it is for me to live with paralysis and be in a wheelchair.  Additionally, I only speak for myself and not everyone else in a wheelchair because each of us experiences and views issues differently. 

Daily life
While most other people can choose to live anywhere, I have quite a bit more limitations. Here are some of things I have to think about when looking for a potential apartment/home:
  • Located on the ground level or have a lift, located on flat ground--no steps and no hills, large restroom with roll in shower or larger tub with extendable shower hose, large kitchen with lower cupboards for appliances and food storage, low counter tops, front dial oven/stove, light weight or mechanically operated doors that are at least 3 inches wider than my wheelchair, accessible wall plugs.  Living without one or more of these makes life all the more challenging for me. Unfortunately, most apartments that have these accommodations are much more expensive.
 I can't just walk into a store and push a cart. There is a special cart that can attach to the front of my wheelchair and moves forwards while I push myself.  However, I've only ever seen these in Britain, so for now, I have to limit my grocery to a basket on my lap, or go with someone else who can push around a cart for me.

I worry about falling down off my chair every single day when I transfer from seat to seat, am going up or down hill, going over lips in cement, etc., because I have fallen before.  If my legs fall off my foot rest, naturally my core body follows it to the ground. Especially now that I'm pregnant, this is an even bigger and riskier concern.

A good night's sleep for me consists of waking up only about 5 times each night from either nerve or back pain.

Since age 20, I've been taking prescriptions everyday to sooth nerve and back pains that have resulted from my injury, and have not found another more effective way to address these pains. I've tried doing without them, but I get excruciating pains in my midsection and back that are really debilitating - just ask my husband about it, he's watched it happen.

Because my spinal cord injury has left me paralyzed from the waist down, I have no bathroom sensation so I have to catheterize every 3-4 hours, which is a total pain to do especially when I'm in a rush or I'm with people who are in a rush and don't want to wait for me, which makes me feel embarrassed and like a complete burden.  Catheterizing also causes me to have many infections and the antibiotics to treat them make me feel very ill.

Pushing myself in rain and snow is really hard on my body, especially on my hands which are in constant pain, and increases the chances of me sliding and falling (do help when you see this happening!).

Cooking is difficult for me, especially without front oven dials. I often burn myself and my hands/arms become very fatigued from lifting and stirring.

I have a grabber to reach objects in high positions, but it could only do so much to protect me from glass bottles, clay dishes, and appliances falling on me.

I am dependent on lifts to get to different floors in buildings, and have to be very patient when others who are able bodied decide to crowd the lift and leave me behind. Even worse, many old buildings don't even have lifts, and I have to be awkwardly carried by strangers or leave.

Without fail, I get stares from people everywhere I go, which is quite uncomfortable.  It's even worse when perfect strangers point out my disability and pry into my life to find out what happened even though they will never see me again.  It really makes me feel like that's all that they can see about me. That's insensitive.

People tend to make an assumption of what I can or cannot do and tell me about it, instead of asking how I do things to know for sure. I hate that because people assume I am a child or something (it also doesn't help that I look like I'm 15). I am an independent person and I have managed my situation for a long time, so I would know best what works for me. The best thing to do is ask, please.

I understand I have not yet mastered all tasks from a wheelchair or been in all tough situations for a wheelchair, but please allow me to at least try it out for myself, just as you allow yourself to experience new things and find your way around.

I admit, I do get frustrated with the difficulties in the simple tasks mentioned, but I made a commitment to myself a long time ago to never quit and keep moving on, and I've stuck with it. I refuse to allow my situation to rule my life and I'm trying to live my life to the fullest with it. However, this is a lifestyle change that I've worked my way around and I believe I've become a better person because of it.

I understand that this is a lot to take in (so take a deep breath and pause for a second) but I feel it is something very important to address, especially for those without disabilities from the perspective of a person in a wheelchair.

I know that this is not the whole list and there are questions you may have.  Please send me a message on Facebook or ask me here on this blog, and I will do my best to ask your question from my perspective. Thanks for reading and I hope you come back for further installments about life in a wheelchair!

Monday, April 22, 2013

BYU Graduation in Photos

This will be a post mainly with photos because I've been so fatigued and am writing retrospectively so details are a bit of a blur (as they normally are with pregnancy). After our many adventures at home and abroad, and getting the experience, skills, and networks we desired, AJ and I finally graduated from BYU. We are thrilled! 

We often look back over all that we did during our college years with such fond memories (even if it's been only a few months. We miss it already). The stories will be told to our posterity long after this day of celebration. The friendships made along the way will be remembered and hopefully kept in years to come. The honor of BYU's alma mater will live in our hearts and within our family (we'll nudge our kids a bit). It's been a long, fought for journey, but oh so worthwhile. We have come to really love BYU. Go Cougars!

Waiting patiently for our diplomas (or rather the cover)

With our buddy, Jeff

Our family there to support us. In front of the Victory Bell, BYU, Provo, UT

In front of Y Mount

Our lovely family (Boston in Mommy's tummy)

We have an award named after us - The MAJIC (Martina and AJ Inspiring Courage) at the Y-Serve office
I was honored to be asked to speak at graduation. Tears of joy and victory accompanied as I told my story and hope that others will stay strong along their journey. We're so grateful for all of the love and support from our families, friends, and mentors. There was much celebration afterwards with tons of delicious food (really craving it now). 

The world awaits us in the adventures ahead...