Pieces of Me, #FTSF

The truth is, my left eye is artificial. a rod fuses my spine, keeping the curve of scoliosis at bay. My father’s kidney sits on my right side, at the front of my body, in my abdomen.

I sometimes feel like more others and other things, than I do myself.

How I grew up to be the one I am now…well, I acquired all these things along the way, making me stronger, propelling me forward.

What is artificial and what what is real?

I became who I am, with those materials and those extra, needed transplanted body parts.

It sometimes feels like I am part of some science fiction story.

I am who I am today because of all of this, but not without those people and the memories we’ve made together.

Right now, pieces of me are being kept safe, within boxes and boxes of old cassette tapes, a passing fad it seems, but even vinyl has made a comeback, so who knows what could very well come back around again one day.

On those tapes I was becoming me all those years, with the help of my family, my friends, and my doctors. They saved me, my very life, on more than one or two or a dozen occasions.

When I grew up, I knew…well, I’m still growing. Up and up and up I go. Up and back down again, as life often happens.

But as long as I have my father’s kidney (working well and taking me straight to breaking records for longest renal transplant) – nineteen years, on June 5th!

As long as I have my artificial eye where it’s supposed to be and my spine held straight, thanks to the hardware that keeps me from curving and twisting.

As long as I have my family behind me, supporting me, in whatever I do.

As long as there now exists digitized copies of those memories from childhood and the life that gave me…its best shot at stability.

Then I will be here to finish another sentence with all of you next week.

Another excellent one, with

Finding Ninee and her journey as a special needs parent

and this week’s FTSF sentence producer,

Life Through My Bioscope.

IN YOUR FACE

Last Monday, for the

Redefining Disability Awareness Challenge,

I shared a wonderful post from my very own parents, which I called:

Literally.

Last week’s question was answered by my parents, from the perspective of raising not one, but two children with a disability. They will be back again next week with another thoughtful response, but this week it is my turn once more.

🙂

Week Three: Part A

Q: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not?

A: I probably would not be here answering these questions if my answer were no.

🙂

I have had several of these in my lifetime. The main one was the LCA, see

Here.

Then there was the Senior-Loken Syndrome, which included the renal failure and scoliosis.

These, to say the least, made my teen years interesting ones.

I have had many different diagnosis suggestions from neurologists with the headaches and chronic pain I have dealt with over the last ten to fifteen years now. However, unlike the obvious medical signs that I am blind or that my kidneys stopped working or when an x-ray clearly showed signs of a curvature in the spine, chronic pain shows no signs that can be clearly and medically spotted.

All of this is true and yet, I can not let any of it weigh, drag, or generally bring me down for very long. Whether it’s one medically diagnosed disability or multiple, if it is at all possible to get on with the business of living, I would highly recommend doing so, to myself and anyone else out there.

I did not come up with the term and I do my best to deal with it in this society of labels.

I am so pleased to participate in this awareness challenge of disability because I know I must live life, not just with disability, but in spite of it. I have had it in some form all my life and this makes it very difficult to live in any sort of denial, not that I haven’t had my moments. It just becomes a part of you and something that it would do no good to refute. It’s not that it wouldn’t occur to me because I am human and I have my bad days, but I know I must take control of my own life, to take the power away from the cruelty and the harshness that living with the label of disability often causes.

Yes, the short answer is that I have disability as a part of my life and the person I am. This is the cold, hard, in-your-face reality of the situation. I look forward to getting further into the issues surrounding life with disability, with some of the questions I have yet to answer, in the weeks to come.

Check back next Monday for more.

Next week my two parents will be answering the following, Part B:

If you don’t have one, how do you view the concept of disability and the people in your life who have them?

***

Speaking of in-your-face.

🙂

With September being Chronic Pain Awareness Month I wanted to share here an initiative being organized by the ones fighting to lessen the stigma surrounding chronic pain and a new way to hopefully bring attention to this silent and invisible scourge.

I asked to do what I could to help migraine, headache, and chronic pain ambassador JP Summers, and this is what she had to say:

“Here is the information for the Pie Challenge. I hope we get some media attention for the sake of all of us that are tired of our condition not being considered severe.”

Please check out the links below to see what’s being done:

Twitter,

Facebook,

and

Website.

Of course this is a take on the:

Ice Bucket Challenge for ALS,

because every person has their own unique story of suffering and deserves to be heard and helped, whether it’s by way of ice cold water being poured over the head or a pie in the face.

Whatever works and get’s peoples’ attention, right?

National Volunteer Week 2014

At the time I thought it an odd paring, Ronald McDonald House right next door to a shelter for run-away teens and street kids. I must admit, as a fourteen-year-old I was nervous to walk by there on my way to and from visiting Sick Kids Hospital. There were always teenagers mingling around on the sidewalk and I didn’t know what to make of them. I was in a huge city and there was so much going on, I had no idea at the time what to make of the paring.

On this Throw-back Thursday I think back to fifteen years ago this month. I was with my family, yet again, staying in Toronto while this time it was my younger brother who was the transplant patient and it was my mother’s turn to give one of her children the ultimate gift any parent could ever give.
Once again my family rallied around us. My grandparents were staying with us. They loved stepping up and taking care of us all, and the experience once more of staying at Ronald McDonald House in Toronto.

I had completed most of my first year in high school. After a year of high school firsts: new courses, new friends, and a surgery of my own we were staying at the Ronald MCDonald House on Gerrard Street for the second time. I had been dealing with chronic headaches all year and nothing could be found to explain why.
After many neurologist appointments and tests all my doctors hoped a surgery to correct scoliosis would fix the problem.
It seemed to be working. I was leaving the role of patient behind and taking up the role of care giver to my mother and brother. I was out of the pressure of high school, drama, and dating and into an environment and a role I was much better fitted for.

Back in our room at the house I stood under the hot water of the shower, letting the stress of only the first few hours of the morning of the surgery melt away, I hoped all was going well in the two separate operating rooms just down the street.
For the next few days we would walk back and forth from hospital to Ronald McDonald House, several times a day, passing those homeless youth, my guide dog Croche soon memorizing the route from one to the other. Those April days seemed to fly by, of course I wasn’t the one in hospital and hooked up to iv’s this time, but I also had no clue how much it meant to the teens just next door to even get a hot shower everyday.

Clang! As the little gate would shut and I would be past the fear I felt when walking by those meandering kids, the safety of the locked and secure Ronald McDonald House door was always waiting. Only families who were registered there with children who were sick could have the pass code to get in.
Once that door closed behind us we felt at home. I felt like this was just another family vacation we were all on and this was a hotel we were guests of.

Right in the heart of downtown Toronto was this haven for my family and myself, always there when we needed a place to stay. Sure, it was only after my brother or myself underwent serious operations, but it always meant the world that this place existed. With everything else we had to worry about, finding some place to stay wasn’t an issue. We had a place we could stay as a family, to be together when we needed to be nearby for my brother and mother both.

Heaven forbid anyone ever need it, but it is there when they do. It wasn’t until years later that I found the irony in the home for families with sick children, (a home away from home as it’s sometimes called) and the home for children who have no family to rally about them or even know it when they’re in trouble, being side by side. I realize now the connection between these two much needed refuges: the people who make them possible: the volunteers.

I want to thank all the giving individuals who selflessly offer their time and their energies. These are only two examples of organizations for children which do incredible work each and every day for our world’s most vulnerable, those most in need. I understand now why in an odd sort of way, the two houses belong beside each other, two houses full of dedicated staff and volunteers, put there to help frightened and in need children. I had a family to support me, while lots of those kids did not. Your family doesn’t have to be related by blood for it to make a difference.

These are just two of the wonderful organizations, specifically to help out children and young people. Please check out their websites, I’ve listed below, plus two more. Volunteers make a lot of the services and programs run by these organizations possible. They deserve some recognition and Covenant House and Ronald McDonald House will be around for a long time to come with the generosity of those who volunteer.

http://www.rmhtoronto.org

http://www.covenanthouse.org/homeless-charity/toronto

http://www.sickkids.ca

http://volunteer.ca/nvw2014