Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

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I am whole

My mother was a child of the 50’s, and raised by her mother with certain ideals in her head. She passed most of these on to me, and I followed them with diligence, all except one. In the 50’s women were raised to look for a man to support them in life. Someone who would marry them, have children with them, and basically be their “other half”.

I could not follow in my mother footsteps here. I never thought I needed a man (or anyone) to complete me. I didn’t need to find my other half because I wasn’t a half. I was whole. I only hoped that one day I would find someone(s) who valued me for my wholeness and accepted me, including my flaws and everything that made me the whole person I was.

There have been many that have come and gone. I have also spent many years wondering if I could even hope to find someone(s) to accept parts of me, let alone the whole of me.

I’ve come to realize that we as humans seek perfection where it doesn’t exist. We look for the counterparts of ourselves even when we swear we don’t need or want them. We want our partners to be an ideal that doesn’t exist. And yet we push our way through relationships intent on getting what we want, despite our unrealistic expectations.

Perhaps in this next chapter of my life I will remember that perfection does not exist. I will remember that we can’t have our cake and eat it too. And that compromise doesn’t mean sacrificing who you are.

I will remember what I am worth. I don’t need to find my feet, because I’m already standing. I will remember that giving someone my heart doesn’t mean they will accept it, and that that’s ok. I will remember that I am beautiful. I will remember that I am strong. I will remember that I am a whole person.

Adventures in bus riding

This morning I took an interesting bus ride to my doctors office downtown. The bus itself was not all that interesting, and just once I’d love to get through one ride without the overwhelming smell of marijuana or bad body odor lingering in the air. I don’t understand why they don’t ventilate city buses better. Come on, it’s common sense. Bus jam packed full of people in various stages of smellyness, no open windows, and very little air conditioning circulating. Not to mention it being a breeding ground for germs due to the elderly and children never covering their mouths when coughing or sneezing. Yuck.

I’ve deviated..oops.. Back to today..

So I boarded the bus at my regular stop and sat down in the forward facing front seats that are technically in the elderly and disabled section. There weren’t too many seats open in the rest of the bus and I had a right to be there as much as anyone else. Though to avoid confrontation I kept my Disability Bus Pass out so if questioned I’d have proof.

After a few more stops the bus started to fill up even more. The front seats were flooded with elderly, though the seat next to me was taken by a guy who looked to be in his late thirties or early forties. He smiled as he sat, and put a bag underneath his seat and I noticed that he too was holding a Disability Bus Pass. This made me smile. Not because I rejoiced in someone having a disability as well, no one is happy to be sick or in pain, but because this man clearly had an invisible illness like I did. I don’t often see many people when I’m out and about that are like me, well at least not to my knowledge. We don’t wear signs displaying our disabilities and it’s not like there are beacons above our heads like in a Sims game.

After only one more stop along, an elderly gentlemen the who seemed very mobile for his age (he had pep in his step) boarded. He walked right up to the man sitting next to me and asked him to vacate the seat because it was for the elderly only. To be honest, the older man was a bit rude. The younger man next to me showed the older man his bus pass and stated that he was allowed to stay where he was as he was disabled. This clearly upset the older man. Loudly, he proclaimed that he was elderly and this seat was for him. I was quite surprised that he made such a deal out of it. There were more empty seats in the back that he could just as easily have sat in, and the sign above our seats clearly states they are for the elderly and the disabled, not to mention that he was moving quite well and without difficulty.

The man next to me stood his ground and politely refused to give up his seat, stating there were other seats nearby that the man could sit in, and that he was perfectly justified in his seat choice. He then turned to me and said “Our seat choice”, gesturing to the Disability Pass in my hand. I gave it a little wave to the older man and smiled awkwardly. By this time the bus was filling up, and the older man finally conceded and moved to another seat.

While I did feel uncomfortable for having to go through the awkward exchange I also felt liberated. Usually when I deal with people who are upset at the invisibility of my disease it’s alone, I don’t tend to have a partner in crime with me. But today I felt vindicated! Not only was it clear that I was not alone in the fight against invisible illness, but there were also people out there like me, who wouldn’t stand to be pushed around or shamed! Others would stand their ground like I did, like I do, all the time.

The rest of my ride was quite pleasant as the man next to me and I shared our disabilities with each other. He was suffering a head trauma from an accident, and carried a portable chair that folded up into a back pack. What a great invention, I exclaimed! I gotta get one for my growing narcolepsy! He smiled and was genuine and nice. He even pointed to my swollen fingers that not many tend to notice, outside of my doctors and my mom. He asked what type of Arthtitis I had.

When I reached my stop I was in a genuinely good mood. Today the world reminded me that I wasn’t alone. There are others that go through the same struggle as I do, and that its ok to stand up for yourself no matter what.

I’m not alone.

Not at all.

 

 

 

If you would like to help contribute to my cause, please visit my donation page, all help is greatly appreciated.

When people let you down

Disappointment is a fact of life. It’s going to happen no matter what, at some point, whether you want it or not. Most likely not as I don’t know anyone who wants to be disappointed. But what I’ve come to find during my time being ill is that disappointment hits me so much harder than if I were a normal healthy person.

I remember the days before this, the days I lived normally, had a regular 9 to 5, dated, had relationships, went out with friends at night, etc. There were definitely times where I felt rejection, disappointment, sorrow; I mean these are all parts of human nature and connection. But I got through it, found a way to move on or start over, process the feeling and swallow the hurt, continue on with life as you need to.

But now, when people disappoint me, or upset me, or do something purposefully hurtful, well it’s just so much worse. I guess it’s because when I dealt with bummer situations before, I was able to shrug it off because that was life, you need to take things with a grain of salt, not dwell. And at the end of the day I always knew that there were people out there that just suck. I mean we can’t all be fabulous!  As I see it if people’s actions or words let you down you have two choices…

1) You can get mad, throw a fit, and let your sentiment be known that you are PISSED.

or

2) You can shrug it off. Take the higher road. Move on and learn from the experience, or mistake, whichever scenario the disappointment encompasses.

But when you’re sick, there’s an option three. Now I guess it depends on your illness, be it short lived, or aggressive and deadly like many of us unfortunately. Anyways,

3) Brood. You sit, you agonize, you wonder. And because you’re sick, and like in my case have time on your hands, you go through the scenario or experience or rejection or conversation and pick it apart piece by piece to analyze it.

There’s no sticking a pin in this one for later, you’ve got all the time you want right now to sit, ponder, and brood. Why did that person flake on me? Why did that person hurt me? Why wasn’t I invited to that BBQ? Why was I not thanked for helping someone out?

They may be small things, or large, but when you’re sick, a disappointment that seems small to anyone else is magnified to you. And you can’t stop it. It’s one of those festering sores that you pick at slowly even though it’s started to scab over. You don’t care. You have all the time in the world. And I won’t lie when I say some of my disappointments probably seen silly and ridiculous to  others.

For example, yesterday my favorite hair clip broke. Small, silly, replaceable in the eyes of someone else. But for me, I was really upset. I’d had that clip for ages. I’ve never seen another one like it, deeming it irreplaceable in my eyes. Also being poor and broke makes hair accessories not high on the shopping necessity list. It was very handy, I’d always kept it in my bag in case of hair emergencies. I was really bummed. Now, I didn’t cry about it. I mean it’s a piece of plastic. But not having a lot of money at my disposal, or a car to run around looking for a similar product, made the loss a pretty big bummer for me.

On a much larger scale, I was disappointed in someone’s actions towards me last month. So disappointed that it haunts my thoughts to this day. A promise was made, a very important one. And then the person reneged. I shouldn’t be that surprised; the same person had flaked on me in the past several times. But being sick now, that disappointment hit me like a ton of bricks. Why had that person made a promise they knew they wouldn’t keep? Was it a vengeful decision done on purpose to cause me pain? Or did they merely just not realise how hurtful their flakiness could be? Why make a promise? Why break it? Why offer help at all if there was never going to be follow through? Tons of similar questions swirl through my head constantly. I often wonder if I would be this mad or disappointed if I were healthy. If I still worked my 9 to 5, had savings in the bank, if I were more independent, more mentally put together, would a rejection or disappointment such as this one, hit me as hard? I guess I’ll never know.

The upside about disappointments when you’re ill is that since you’re on limited time or borrowed time, or just aware of time in general, you’re less likely to accept people’s bullshit. When I was healthy I was more apt to accepting apologies, or even just bad behavior. I was willing to sweep things under the rug or look the other way. Not so much now.

Mess with me now, flake out, treat me badly, reject me, disappointment me… I don’t need to keep you around. I have no time for disappointing behavior. My time is precious, and the people who share it with me treat me with the respect that I deserve. If you want to behave badly, you can do that with someone else that will put up with your BS. Cause this girl right here, isn’t having it.

If you’d like to help me become more independent and less likely to fall for the BS help of others, please donate to my life fund. I am trying to raise money for rent and life necessities while I’m ill and can’t work.

Christine Lilley’s Life Fund