Silence

I find I don't turn on the tv for background noise anymore. I sit and listen to the hum of the refrigerator, the whirr of the heaters, the purring of the cats. The silence isn't as evil in my ears, any longer. I sit and eat in silence, I sit and check Facebook or emails. Sometimes I cry, sometimes I just sit, soaking in the lack of sound.

I don't know what's to come but silence isn't so hard anymore

Painting a Clear Picture - Retreats and Conferences

As more young adults get diagnosed with cancer and find Young Adult Cancer Canada, they become introduced to the chance to attend one of YACC's events to connect: retreats and conferences.  This leads to them asking (almost every time), "What are they like?"  It's a simple question with a very hard to explain answer.  So I'm going to try an analogy, bear with me.

You're a painter, you've finally decided on your masterpiece, your life's work.  You start setting everything up, doing your best to get things in order, and start painting.  As you paint your brush suddenly falls from your hand.  In disbelief, you look at your hand, it's not working right.  The brush is on the floor, paint splatter on the ground.  You look at the painting, there's now a line of paint down the middle of it, painfully obvious that it is out of place.  No matter how you look at things, your hand isn't gripping the paint brush, and you're feeling stuck, with your beautiful vision left unfinished.

You see doctors, tell your family and friends, and try to start some treatments.  You get lots of "advice" from non professionals.  Some tell you to just pick up the brush and paint, you'll get through it, eventually.  Some are convinced that if you don't listen to the doctors and just rub mint on it, you'll cure yourself.  A few do their best to be there for you, but they just cannot relate on any level.  You keep going back to your painting, picking up the brush as best you can, and try to paint like you used to.

Retreats

One day you walk into your studio and there is a small group of people there.  You look around nervously but take note of one thing: they all have a painting with a line of paint splattered in odd areas.  One by one you all sit in front of your paintings and a person comes into the room.  They guide you through discussions on your works.  Everyone talks about what they were going to paint before their brush fell.  They say how that line of paint has been haunting them ever since it showed up.  There's tears, their laughter, there's a lot of silence, but it's never awkward.  Eventually you realize that the line of paint doesn't have to be a blemish, it can be part of your painting.  You don't leave the session with all the answers, but you connected with others struggling like you.  They might not have the line of paint in the centre of their work, it might be blotches instead of a line, but you all had the brush fall.  You finally have people you can talk to that know what it feels like to look at the paint on the floor, seeing the brush roll away.

Conferences

Later on that year there's a gallery opening.  Everyone has their paintings on the walls.  Some are completed, some are barely started, some are almost finished.  All the painters are there, they're milling about, chatting, laughing, crying, some even in serious debates.  As you look around you see it's only painters.  Every artwork also has the paint that was out of place.  Some have worked it into the painting flawlessly, some expanded on it, some tried to just paint over it, others have left the odd paint alone.  Most of the paintings have their artist's names written clearly near them, some are labeled anonymous, and a few have big neon lights spelling out the names of the artists, inviting you to talk with them about their experience painting.  As the night rolls on, you join different people and discuss different topics at each group: how you watched the brush fall, different mediums you started trying when painting got difficult, methods doctors are trying to help you with your hands, different canvases and how they affect the paint, what you can do to help insure the paintings, and even what you want done when you finish painting.  Some talks are sad, some are extremely educational, and a few are just plain fun.  The night grows late, a host comes out to thank everyone for coming.  A few words are said for those who are not in attendance.  Several people could not make the journey due to family or health issues, some have felt they didn't need to attend gallery openings any longer, and some have passed on, leaving the most beautiful paintings that touch the hearts of everyone that view them.  The gallery opening closes with music, dancing, laughter, and tears from knowing you won't see each other in person for a long time.  As much as there might be sadness in that the gallery opening is closing, you still feel full of love and joy from getting to be with others that understand your plight.  You excitedly start planning your journey to the next gallery opening as you tote your painting back to your studio and try to pick up your paint brush.

Some of the painters you met had recovered fully, their hands were back to normal.  Other people, the affliction grew further, their arms, legs, or necks are now unable to fully function.  A couple people just started their journey with the issues of their hands.  Some have been living with the affliction for a long, long time.  But no matter what stage the others are at, you all support one another.  You now know you have those people to fall back on when you just want to throw the paints and brushes, scream, and cry.  They will be there when you get good news, they'll empathize when you get bad news, they'll be there whenever you need them.

That's what YACC retreats and conferences are like.  No matter what, they help you keep painting, because no matter where that splash of paint is, they help you see that it's still your masterpiece, and you are one hell of a painter.

Happy Valentines Day '16

Happy Heart Day to one and all.  I'm going to take this moment to brag.  Don't want to hear it, stop reading ..... now.

I hit the jackpot with my husband.  He's someone that is responsible and caring.  Examples?  Start with when we met.  He knew that I was dealing with a horrible divorce, but didn't care, he was willing to work with me and help support me through that terrible experience.  How about the fact that after we married I was hit in a car accident and became permanently disabled.  He's never made me feel like less of a person for not being the independent person I once was.  Then there's the parenting side, he gets up with the children when they wake up in the middle of the night.  He plays with them even when he's tired from work.  He can't wait to get home to see us.  We can be together for days on end and not be sick of each other.  We'd actually continue to stay next to each other for days on end without a single thought of annoyance.

Throw cancer into the mix.  He stands by me, supports my decisions, listens to my rants, still tells me he loves me, grabs my butt and tells me I'm beautiful, and never once looked at me differently when I lost my hair, eyebrows, eyelashes, looked like death warmed over, was stuck in bed, or had only one breast.

He still likes to get me treats, surprises me with tea, he steals kisses, gives me hugs.  He loves and plays with his kids, but shares with discipline and responsibilities that come with having a child.

I win. :) <3

Living Invisibly Disabled

As you may or may not know, I live with two types of invisible disabilities. The most common one that people are aware of is cancer. The less spoken affliction is in my back and shoulder.

Long ago, before cancer was handed out to me, there was an accident. There was a chain reaction created by someone else that left me injured. It's not an injury that's easy to monitor/explain, it is nerve damage. I now live in constant pain. In the morning I wake up with pain, in the afternoon I have worse pain, and in the evening I have even worse pain.

They haven't found a cure for it, the medical field has found some ways to help, slightly. I get nerve blocker injections monthly. These help make the pain more of a toddler's fury than a rabid badger being fed steroids. They only work temporarily, and the pain level goes back to being as intense as ever.

I'm not writing this for pity. I want you to understand something. Not all disabilities are created equal. I can walk, I'll even make it look like it's not causing me pain, but I've had times that my body almost fails me and I need to sit down quick or I'll fall flat on my face, from pain. Imagine that. You're walking and suddenly your body says, "No more". Can you easily live with that looming overhead? I have a disability permit because of this. I might start out okay when I get to the store, but line ups, avoiding crowds, even just walking the aisles might trigger my nerves to worsen beyond my capability to stand it. I need my vehicle to be nearby. Others have reasons that are invisible, too. Common ones are crohns and cancer.

Don't glare at someone younger getting out of a vehicle with a disabled permit. They have the permit for a reason. Be responsible for yourself. If you're not disabled, don't park in the spots for them. If you're not pregnant or with infants, don't use their spots, either. If you're not a senior, leave their parking alone. It's not that difficult. I know you're in a hurry, and you'll only be a minute, but a minute when you feel like you're being stabbed in the back with razor sharp daggers is an eternity.

Everyone is fighting their own battles, don't add to the attack.

Are You a Mommy or a Daddy?

Today was my oldest's Christmas Concert at school.  While awaiting the children to be marched onto the stage, one child in the audience turned to me and asked, with pure curiosity: "Are you a Mommy or a Daddy?"

Some may have been offended, put off, or even saddened.  I wasn't.  To the contrary, I would like to applaud the lil guy for having courage to ask what he is truly wondering.  Let's face it, most are accustomed to the idea that moms have a fair amount of hair and only dads have little to none.  Don't mention the breasts as being evidence that I'm female, I've seen plenty of guys that could make a Victoria's Secret model jealous of their cup size.

My reply?  "I'm a Mommy, but I don't have any hair."  That was it.  He turned back to see if there was something interesting happening on stage, yet.  If he had asked why I had no hair, I would have answered that, as well.  He didn't though.  This person next to him probably sounded like a Mom voice, maybe he did think it was a Mom body, but there was something off.  His quick acceptance of my response leads me to believe I'm correct in thinking it was the bald head.

I'm glad the boy asked his question.  We need to encourage kids to ask questions when they think something isn't quite right.  This leads to mis-information or lies being stopped in their tracks.  It can spark converstation.  It brings education.

Take care, young man!  I hope no one squashes your curiosity.

Positively Negative

A friend spoke of how hard it is to maintain being positive throughout their cancer journey. There's something we all must remember, whether the hiccups in our life are from cancer or something else:

There's no law stating you need to stay positive about it. Get angry, yell, curse, scream, cry, punch a pillow, tear paper, shred paper, do whatever to get the frustration out. Then curl up with whatever helps calm you. Read a book, have a bath, pet your pets, hug your family, make a blanket fort, watch a scary movie, watch a funny movie, kill stuff on your fave video game, or have a nap.

You are allowed to feel upset or down, or both. Permit yourself to be fallible. You may be a super hero to some, but you are a human, you can be negative, you can be frail.

An Interesting Weekend

With my anxiety about chemotherapy last Tuesday, I forgot to write about my Halloween weekend.  My husband and I were able to attend Hal-Con in Halifax, the local sci-fi convention.  I pushed my chemo till this week so that I could go without the bone-breaking pain and fear of being around people with a cold.  It was an experience.

The first day was not so good.  There was several times that the volunteer staff supplied by Hal-Con were not on the same page as the staff of the WTCC (World Trade and Convention Centre).  There were also times that a couple of the volunteers didn't quite seem to understand what their job entailed, which led to several confusing and frustrating moments.  I did get to see a couple of the celebrities and attend a couple panels.  There were several attendees that didn't like that I couldn't move overly fast (back pain from my injury makes me slow down), so they barged passed us and took the seats we were heading for.  The worst of day one was when the miss-communication between volunteers and WTCC staff had us trapped inside the con.  Every way we went they told us we could not leave from that exit.  I had a panic attack.  My pain was escalating and the idea of being surrounded by that many people and not being permitted to exit the building quickly attacked my mind.  We did finally find the exit and, quite frankly, ran away.  We went to supper with a gift card that had been kicking around from a friend (finally was in town and able to use it), that was a glorious meal, and when we returned to the hotel room they had vouchers for drinks and a plate of sweets waiting for us.  That helped with our stress level.

Saturday was better in that the Hal-Con staff spoke with the volunteers about the issues and tried their best to nip-it-in-the-bud.  We had a hard time deciding on panels because a lot of the ones that we wanted were at the same time, plus there were several celebs that we still hoped to get autographs and photos with.  I was able to see a friend that I had not seen in years and catch up, had supper with them, and attended the soiree with the celebs.  It was fun, but a lot of people surround the popular guests like moths to a flame.  My back had enough of standing so I was stuck at a table.  One of the guests found me, and sat with us, chatting for the remainder of the event.  That was Lenore Zann.  Many would know her as Rogue from X-Men, the 90's cartoon.  Rogue was one of my favorites (second only to Wolverine), to meet her was a real treat for me.  The fact that she came over and started chatting like we were old mates just reuniting after a long separation was very lovely!  After the soiree we were going to just go to bed but there was a bit of a kerfuffle on our floor so we decided to vacate the hotel.  There were some people going to a local pub just a block away, we headed in that direction.  Long story short, our Halloween was spent with Kris and Paul (from Lost Girl), Kirby (Goku) and his lovely missus, Enver (from Agent Carter), Alaina (Supernatural), Fadi (Captain Canuck producer), Rob (Cyanide & Happiness), and a couple others.  The next day was spent quickly going around to say "Hi" to those that we had been at the pub with the night before and running home to get the kids from the family members that had watched them that weekend for us.

I don't think these guests know what that night (the soiree and the pub) meant to me and my husband.  Our weekend was looking like a write-off.  We were questioning why we even bothered with our passes and not sold them off, as money is a bit hard to come by, now.  The weekend was supposed to be a treat for us.  We had not done anything for our anniversary in quite some time.  Chemo kept me locked up in the house often.  Having disabilities, three kids, and cancer has not made going out that simple.  We were extremely close to selling our tickets, especially after Friday's debacle.  Being able to simply hang out and have a glass of wine with them, chatting about everyday things, that means a lot to me.  This also might have been my last Hal-Con.  Tickets are getting too hard to get.  I need the special passes so that I don't hurt my back and can feel "normal" for the weekend.  By feeling normal, I mean I'm tired of glares and whispers because (other than the lack of hair) I don't "look" disabled.  Plus, I don't know what treatments I might be on by this time next year.

So if someone knows these actors personally, or in case one of them sees this blog: Thank you.  I hope that somehow we cross paths once more.  I wish I could send you updates, like some of you mentioned you'd like to receive, but I don't really have any way to contact most of you.

Soiree Photos

(thanks to my friend Scott)

Lenore Zann and Julie

Kris Holden-Reid, Lenore Zann, Julie, Paul Amos

Pub Night

Kirby Morrow and Julie

Julie and Paul Amos

Enver Gjokaj and Julie