Trials and tribulations

I am tired. So tired in fact that I don't even think that that a piece of dark chocolate will help. It is Thursday and therefore a Parkwood day. I walked a couple of kilometers on the Lokomat and biked ten miles on the FES. A good workout by any standards. The best part of the day though was getting to hang out with my people. I know I have said this before, but being able to connect with others in the (almost) same boat as me is incredibly meaningful.

You see I have been feeling pretty lonely out here in Huron County for the past little while. I know it seems ridiculous when I have my family here, regular appointments with professionals and lots of friends to visit with [I regularly get the comment "another new friend?" when I arrive at Parkwood with someone different] but I know no one who is in that same boat as me. I have connected with some peers online, those who have more years of experience than I. This is helpful because I hear about what their life is like - and I gain hope and knowledge that things will be better down the road. But I still have yet to find that peer who is really like me. All of the women I have talked to were injured young, then went on to get an education, a career and/or a family. To me, this is different. I want to talk to someone who is just like me - in full swing of career and family - and learn how they were able to adjust to the changed body and relationships.

In the meantime I got to hear from my Parkwood gang. Lots of tales today. One friend has been put through the ringer by his auto insurer as he tries to get his licence back and get his newly modified Mazda 5 on the road. The insurer thought it prudent that his auto rate should be doubled - because that is what they do when you "give up" your licence and have to go back through the retesting process to get on the road. Right, because that is what we all did - voluntarily gave up our licence! Nice try - more like we were unconscious in the ICU when the resident Dr filled in the paperwork to have it revoked. Not the same thing.

The other friend talked about the elevator in his house and how they are not the answer to making a two story house accessible. Elevators get stuck, you see. Others chimed in that they have generators to back them up for when the power goes out, however, a back up generator does nothing for you when it gets stuck because of the incomplete work done by the repairman! This friend got stuck 3/4 between floors, so when the door was opened by his son he was at eye level to the kitchen floor. He is lucky his son (and he) are strong enough to heave him up through the gap. Another friend said that she would have been stuck there until morning and would be lucky if her mom passed her down some supper.

Then (somehow) we got on to skiing - many were not able to picture how nordic sit skiing would work. I had the idea that we should all go downhill skiing together this winter, telling them about last year when I went with my family. It's pretty hard to picture and/or describe how you get on a chairlift when you are strapped to a sit-ski. I guess I didn't do a good enough sales job because one friend said she thought her plans to skydive were better. In the end we decided that we should all go to Mexico together. I guess I had better get that passport application finished!

Thankful

This is a guest post from my friend Selena Hazlitt. Selena was the glue behind the communications and the fundraising after my collision. I am thankful to her for all of that and her love.

This October, a memory was made that I will hold onto forever.  Something I never want to let go of, and only did because I know it will happen again.  This is a post about how that memory was created.

I think everyone who reads this blog realizes that Thursdays are dedicated to physio at Parkwood for Julie.  This is the day of the week where she is greeted by those who are closest to understanding what she experiences daily in her life and is supported by an amazing team of professionals who guide Julie towards her goals.  We realized that Thursday was my first time at Parkwood in a year.  The last time I was there was for one of our regular "girls night in" visits before Julie moved home.

On Thursday, we arrived at Parkwood early (note to other drivers, I set the bar high for arrival time) so that gave Julie a little time to connect with friends. While she was touring around physio to chat, I was mesmerized by her team putting together the Exoskeleton.  Of course I had heard about the Exo from Julie and I saw one encased in a museum display at Chicago's Museum of Science and Industry last year, but to touch it and see it come together was so interesting.  

The process of strapping Julie in doesn't take too long.  A binder, some straps and lots of velcro, adjustments and more fine tuning, all done meticulously by Barry.  I was sitting beside her and she reached out, I thought she wanted to hold my hand but she was really just gesturing for water.  We had a laugh and then it was time for her to stand-up.  The unfolding from sitting to standing is the biggest challenge.  Barry guides her from behind as she folds and unfolds into a standing position.

Then she reached out for my hand again so I went to hand her water but instead she suggested I stand up and come towards her.  Then I realized, we were going to share  A HUG!!!  (I am tearing up right now as I type)  I hugged my friend, a full body hug and I would have wrapped my legs around her if I could.  

We cried.  Yup, standing there hugging Julie and $230,000 worth of bionic equipment, starting into Barry's eyes (remember he is behind Julie, for balance) and I was a puddle.  Nearby, a man commented that we were making him cry too.  I wondered what Barry thought and figured these types of moments must contribute to his passion for helping people.

That HUG was the most surreal hug I have experienced and it was one of the best hugs ever!  There was no way I was letting Julie get out of the Exo after her hour long, 2038 step walk without another big hug.  I am addicted to that hug.  I want more and I know that there will be more!

Thank you Parkwood for purchasing the Exo, thank you to the three people who are trained to operate the Exo and thank you science for being so damn amazing!

I'll continue to hug my friends and especially Julie whenever we see each other.  With Julie, it will be that half body hug, bent over, twisting my body around the chair to get as close to her as possible.  Hugs with Julie always make me happy because I am still caught up in the emotion that she is alive and with us today so embracing her feels extra special.

Touch is so important for all of us and often those who use a chair are most vulnerable for a lack of hugs.  Julie isn't going to break and a hug can never hurt her.  

Dresses for sale

With some help I have been doing some sorting. This is the result: 11 empty bins! Now, to be fair, some of the contents of these bins are still in the house like outdoor winter clothes and some pants I found for Oliver to wear this year...but a lot of stuff is gone. We have taken it to charity, some things to sell at Family Tree (sorry Jen:) and a few things into the garbage. Stuff. It's all just stuff. Toys, clothes, fabric, some kitchen stuff and shoes. Why do we hold on to so much stuff?

As the kids get older they lose interest in some of their toys - boy is it hard to get those toys out of the house! "But Mom, I might want to play with that again!!" True - for about ten minutes.

I gave away two bins full of fabric that I hope will get put to good use. You see 15 years ago, when we were living in Toronto, I worked at Fabricland. I loved to score the ends of a roll of fabric because it was 75% off, plus employee discount. I would keep my eye on fabric that I really wanted and then swoop in and buy it. I would even buy fabric that I didn't have my eye on - just because maybe I would use it. Well, for now, my sewing days are on hold. I will have to get a machine that is fully hand controlled and I will need a space to set up. So I let all that fabric go, keeping only two pieces of knit because now everything I wear has to have stretch.

I also went through my dresses. I had a lot of dresses - I loved to wear them to work - and they were all beautiful. Most of them have a specific memory attached to them - my green Earth Day dress, my 40th birthday party dress, my make-me-feel-skinny denim dress and many that I made myself. It was hard to say goodbye to them all. Now it will be up to someone else to wear them - and feel beautiful.

Another 2000 steps

Frankly, I am getting quite tired of driving to London every week. Not that I am actually driving, I have friends help me with that, but it makes for a very long day and we can't seem to find a route that has no construction. On the way down today we made good time (only two construction incidents) and I was there and ready to walk by 10:40 a full 20 minutes early! This is a good thing when I am using the exoskeleton because it gives me my full hour of therapy time to actually walk.

My energy today was such that I was able to walk the full hour and only had a couple of "hanging in the air" incidents. These occur when I don't weight shift properly (because of fatigue) and the robot sort of pauses mid stride which makes for pretty awkward walking. So I think that I am finally coming back up to a level of energy that mirrors that which I felt back in the summertime. Let's hope I can keep this up. Regardless of construction is was a lovely day to drive and I had great company.

I always get a bit energized by my Parkwood days. I have been talking to some inpatients when I can - people who are newly injured and are trying to figure things out. I have so much compassion for where they are at - learning to use the transfer board, using their upper body strength to move their legs off the physio bed, trying to understand how to manage yet another UTI. They are often impressed with my walking - just as I was when I was an impatient. I could not wait to get into the Lokomat - I saw Megan in it the first day I went into the physio gym - and from then on I knew that was my goal. I wish I could do more to support them, but talking and showing what is possible is a start.


Even though I had a good walk and still had enough energy to write this post tonight, the highlight of my day today was meeting the 102 year old veteran who created my birthday art.  I have been walking the halls for a whole year now, admiring the art, because I can see it when I am walking. My Mom surprised me by buying one of them for my birthday (she is pretty sneaky) and today I decided to buy two more (happy birthday to me) to complete the set. The artist (did I mention he is 102?) is a resident at Parkwood in the Veterans wing and he spends a great deal of time in the art rooms. He is more than twice my age! It made me feel warm inside to be able to talk to to him and thank him for creating the art that I so admire.

Flip it

Here is something I am trying. When something is presented in a negative way, flip it. Make it positive. Draw it out so that whatever is being said changes from bad to good or from a put down to a lift up. Every so often I run into someone that I have not seen for a while (or since the collision) and they say how it's "good to see you out". Like I'm not supposed to be out? I suppose it is possible that some people would choose to give up (I have had my moments) but staying in is just, well, boring.

Hand controls in my Mazda. Zoom zoom!

I get out alright. On Saturday the kids and I went to market (again), the last outdoor market of this season. Even though I know this is silly, I felt like it was my last chance to get fresh local food. So my fridge is now full - I think I bought three broccoli - it all looked so good.

This is where I was when another "it's good to see you out" happened. I know it is meant well, really, I do. But how about just saying hello and asking how I am or how my recovery is going? So this is where I have to try and flip it. They mean well, they are just concerned for my well being and are not sure otherwise what to say. So I say that I do indeed get out a lot and then I tell them what I want them to know, how my recovery is going and what we have been up to.

I think that Ella is starting to get tired of me flipping situations that she tells me about. I got told to "stop lecturing me" when we were talking about situations that kids at school find themselves in. You know, the kid who is kicking and screaming their way down the hall to the principal's office? We don't know what is going on in their lives, what home is like etc. I'm just trying for empathy - which I know she has a lot of - but it's my job, right?

Oliver started going to karate lessons about 4 weeks ago. I went to  watch last week. He got his gee for the first time and ran to put it on - so excited he just threw his shorts into my lap and ran to join the group. At the break he came over to see me and said "Mom, I feel so powerful in this!" When we went out the the car I told him that it was evident that he had learned a lot in the past few weeks and that I remember doing a lot of what he had learned. We had karate lessons when we were kids, I think we even went with my Dad for some period of time. I remember it being hard, but satisfying at the same time.

I told Oliver that I wished that I could do it with him. At this point I was keeping my voice steady, trying not to show the emotion I was feeling. He didn't even miss a beat - "well you can still do it with your arms - you can do it sitting on your plinth!" Of course I can. That's the thing with adults - we get stuck in our ways (like parking in the same spot every day) not even trying to think outside the box. And here is ten year old Oliver, without even stopping to think about it, flipping it. Making anything possible.

So try it. Next time someone (or even yourself) says something negative, flip it upside down. Say how you want to be not how you don't want to be. Give it/them the benefit of the doubt. Stop being negative and start being positive. It is hard, and you'll forget (I do) sometimes. But you'll feel better each time you try. I do.

Change happens

Taken by the photographer at Greg's ride.

This is how fast I am. So fast you can hardly see me - so fast that you can not see Theo pushing me from behind...

The County of Huron has developed a strategy intended to improve cycling safety and enjoyment. This is the draft plan that is, in most part, the result of the work accomplished by the Share the Road workshops held here this past spring. Theo and I were both there and were so impressed by the information and discussions that went on. The county released the draft this week and are inviting people to read and comment on the plans. Please read the report here, even if you are not from Huron because it may give you ideas of what you can do in your community. The people of Huron who have made this happen should be proud. In one short (long) year they have made plans - plans that will go far to prevent someone else's life from being permanently altered.

If you live in Huron, please, please make a comment on this report. Send an e-mail to let the committee and the council know your thoughts and to show your support. We have to tell them that we support the plan, we have to get involved, in order to make it happen. Let's be the change.

Hello October

I have been told by someone else who writes that I should not wait for inspiration, that I should just write. Easier said than done, but I am going to try.

Today I feel the best that I have in a long time. Like a month. September was not good. Today though, the sun, the warm wind, no appointments, no workers or guests, new hair cut and good music in my earbuds - just a free day. I did my workout outside today - Theo carried my physiotrainer out to my deck and I got to workout and watch him while he worked. He is at the wall building stage and the trusses are coming soon. This is the shed, not the house.

Also, I think I am finally feeling better. A month of infection followed by antibiotics followed by infection of a different bacteria and another round of gut rotting drugs leaves one quite exhausted. My UTIs are "complicated" say my doctors. Fun. I love being complicated. And it will never go away. So long as I can not control my urinary sphincters (this used to be my favourite biology word - no more) I will have to use a catheter and therefore always be at risk of infection. No matter how careful I am to be clean and sterile I will always be at risk. I can take probiotics to have the right balance of flora, cranberry extract, d-mannose and juniper to prevent bacteria from adhering to the wall of the bladder. They all help, but nothing but a good old fashioned pee the normal way will eliminate that risk. I had a Dr tell me that I could be as careful as possible but had to leave the rest up to God. This from a man of science. If it were up to God perhaps I would not have been hit by a car in the first place? Here we are back to physics and biology once again.

Today my legs are nerve pain free. What a relief. There is a certain amount of energy that one has in a day and when a great deal of that energy goes into managing pain and trying just to function, the days are less fun. For more than a couple days last month I was ready to cut off my legs. I know that doesn't really make sense, why would someone who can not feel or use their legs want to cut them off? Even though I can not feel them, they are still the site of a lot of the nerve pain. Pain that does not go away with any amount of drugs. I had been doing well for most of the summer, nerve pain at a manageable level, but there is something that happens when infection strikes and that pain comes back with a vengeance.

I had this conversation with a friend last week. It's not fair - why should someone who has no feeling in their legs still feel pain? I have a Parkwood friend who takes no pain meds at all - she says that pain reminds us that we are alive. I don't follow this philosophy. Yes, I am glad to be alive, but I don't need the pain to remind me. When I have pain like I did last month I want to crawl into bed and not move. Just close my eyes and make it go away. But I can't, I have to keep going. There are days that I only get up because someone comes into my bedroom and says "are you getting up?" Those days are hard. September was full of them.

Hello October.

On the road again

It seemed like a natural thing to happen at the time, even though I don't really know how it did. Right after I was hit, my family and friends started to talk about Share the Road. It made sense to me, too, so I started talking about it too. How cyclists (and other non motorized road users) are not given the space they need to be safe. How roadways in Huron County (and elsewhere) were not designed to be wide enough. How things needed to change. I spoke on the radio, was interviewed by the Citizen and appeared on CTV news a couple of times. I wanted to let people know that things need to change.

While I was still in hospital, change started to happen. My graphic designer friend Erin made a bumper sticker that looks like this:

They were printed up and sold to raise money for my recovery and my family. The stickers landed in bike shops, at races, in bookstores, coffee shops and even in the knitting store in Blyth. Lots of local businesses got on board to support the effort - an effort to educate drivers. Since then, those stickers have traveled far. I have had requests from Alberta, had lots of people say they have seen them far away from Huron County and we even have friends that have taken them to England!

Last weekend my family, friends and riding friends attended Greg's Ride in Milton. Greg Stobbart was an OPP officer who was struck and killed while riding in 2006. His wife, Eleanor McMahon started the Share the Road Coalition in his memory and has been working ever since to make riding safer for all Ontarians. I spent some time riding with Eleanor on Sunday. She is now MPP for Burlington and is the Minister for Tourism, Culture and Sport - and she is making things happen.

The two Eleanors.

Mom and Dad both did the 15km ride - proud of them :)

The whole team!

Team Julie - our shirts were a hit!

On Sunday every member of the Swift family rode 15km, from 8 year old Henry to the "old folks". Seven and a half out and seven and a half back. Theo and I both did firsts - I rode the borrowed hand bike and Theo ran to help me along. It was hard, but we did it in just under two hours on a beautiful sunny day.

It wasn't so much about the ride (although being on the road again, and with my whole family, was incredibly meaningful) it was about being together with all these other people who were there for the same reason. To enact change and to support all those who have been affected by drivers not sharing the road. We also celebrated the changes that Share the Road has created. It was a very emotional morning, hearing from Executive Director Jamie and Founder Eleanor. They are the ones who lobbied the government to create the one meter passing law and have educated thousands of children about safe riding. Share the Road is helping communities all over Ontario become "bike friendly" and are working with the provincial government on the allocation of $25 M for cycling infrastructure.

So it's not just about bumper stickers anymore. The message goes much deeper than that. When Jordan from Share the Road Cycling came to Holmesville we learned about how much further we can take the Share the Road message. About how many communities like ours have effected change. When Huron County receives the report of recommendations for making the county a bicycle friendly community, we need to be there to support it. We need to let our local politicians know that we want to see changes. We want bike lanes, paved shoulders, cycling education, helmet checks, bike friendly events...making bumper stickers and signs to let cars know you are riding are good ideas, but we need more. We need bigger changes from our local government and beyond. We need to support Share the Road - it is because of their lobbying that new legislation went into effect last fall. Because of their lobbying that we have the 1 meter passing law. I know that some think that it is not enough, but it is a start and it is better than what we had before.

When I got on that three wheeled bike I had lots of different emotions. I felt like a little kid, on a three wheeled bike, who needed protection. But I thought a bit invincible - like I couldn't get hit by a car because it had already happened...any lightening doesn't strike twice, right? And I also felt like I deserved to be given space to ride that bike on the road - move over assholes. [One guy choose to lay on his horn as he drove past Eleanor and I riding together. The nerve.] You can't deny feelings - but not of these were very accurate - I am not a little kid, I have paralysis and have to ride differently; I am most certainly not invincible - lightning does strike twice; and I do not deserve to ride on a road - I have to earn the privilege by doing so safely, just like any driver.

If you missed the ride but still want to support Share the Road you can donate here. Those of you who live in Huron County stay tuned. The recommendation for making Huron a safer place to ride will be coming soon - be prepared to let council know that you want to see these changes happen.