Trip to emerg and home again.

I was all set for a relaxing day to let my stomach heal. In the afternoon, I tried to flush out my PICC line as I do every day, and it didn't flush. I tried a second time, no luck. I got Isaiah to try, nope. Nothing was getting through the line.

I called Amy in a panic who proceeded to get advice from her nursing friends who were all eager to provide examples of blood clots and all the worst case scenarios of what could go wrong. I then called the CF clinic (in retrospect, that should've been my first call) and the nurse said she couldn't bring me into clinic and they had nowhere on the floor for me to wait so I would have to go through the emergency department. Urghh.

Isaiah and I jumped in a cab for emerg. I've heard a lot of horror stories about the St. Mikes Emergency department being dirty and gross but it was actually not as bad as I had imagined. I mean the building is old and it's not laid out well. The waiting room isn't the most cheery place and it feels as though you're waiting in a hallway but the staff were all very friendly and efficient and the wait to see a nurse wasn't very long.

They took a chest xray to make sure that everything was where it is suppose to be and there was no clot at the end. Since the line goes to the heart, they like to be cautious when things go wrong. Which I appreciate. I would rather them not flush a blood clot into my heart because "it's probably fine."

The longest wait was for the IV nurse. No one else wanted to try the line and there seems to be only one IV nurse for the hospital. When she arrived, it flushed for her first try. Of course. Because that is how life works. I felt pretty silly for going but it's good it wasn't anything more serious. And it still works! I want to keep it in for as long as possible as I suspect my run of IV medication is far from being over. 

The brain and the body

It's amazing how fast it took after finding out that my lung function has dropped to me feeling super tired and unwell in general. It's as though as soon as my body realized my lungs were crapping out, it just stopped trying.

I realize it is mostly psychological as one rarely goes from feeling ambitious and energetic in the morning, to having a killer headache and exhausted for the next two days. I mean, sure it happens, but seeing as it started to happen immediately after my clinic appointment, it's fairly clear that the appointment zapped all the energy out of me. I didn't even make it to pottery class last night.

However, just because my lack of energy yesterday and today is mostly psychological, doesn't make it any easier. There is now added anxiety of going to the hospital and if I'll have to go through the emergency department. I hope once I actually get into a room at the hospital, I'll feel a bit better. And perhaps, I truly am tired from my lack of sleeping-in this week and would have crashed out yesterday either way. I will never know.

It would be interesting to study the effects of being told your health is either improving or declining and see how you feel the next day. I would bet there is a good correlation between people believing that they're sick and immediately feeling ill. I would imagine it's been done at some point (a brief search turned up nothing for me) even though it would be really hard to get past a ethics committee. I can't imagine they would look kindly on researchers telling a bunch of healthy participants they had cancer just to study how ill the participants made themselves. Universities try to stay away from research that will get them sued.

Organ Banking

I recently heard a podcast from CBC's Ideas and they were podcasting some of the highlights from the "Ideacity Conference," a three-day conference in Toronto.

One of the speakers talked about her new business which is trying to become the first organ banking company. In the same way that blood and tissue are able to be readily available when needed (providing people keep donating), they hope to have a system available so people would have access to organs when needed. As many organs are currently discarded, due to the lack of nearby available recipients, being able to save the organs would mean that the surgeries wouldn't have to happen in the short time frame that current practice. 


The problems they've had in the past with the idea of long-term organ storing has been not knowing how to freeze the organs fast enough that there is no ice formation which destroys the tissue. Also, the liquids that they do use to freeze the organs are quite toxic so they are unable to be used even if they've been properly frozen. And of course, the rewarming process on the other side. There are a lot of problems with long-term storing.

But it seems as though this company has been able to solve most of the problems. Through methods that I didn't fully understand, it seems as though they've managed to quickly freeze the organs with a non-toxic material. And because it freezes from the inside out, there is less stress on the organ itself. They then flush the organs with helium and store them in liquid nitrogen, the same material that companies use to freeze embryos.

The organ banking company feels as though they will be able to store organs for an indefinite amount of time. They also think that by doing this, they could eliminate 5 of the transplant waiting lists within a year in the US. A year!

The long-term storage would also be better for the person receiving the transplant. If they could keep them for a week, the surgeries could be scheduled as non-emergency procedures so people could be in better health. If they could keep them for 6 months, the merging stem cell therapies could be used in conjunction with their frozen organs. The stem cell process would involve taking some of the donor cells and injecting small amounts into the body as a way of preforming an immune adjustment on the body before the actual transplant. They hope this will eliminate transplant rejection as the body has more time to prepare for a new organ. 

The organ banking company still has to work out the rewarming part of the organs but the speaker was very confident that was no problem and that everything should be ready for market in 5-7 years. That seems like a very short period of time considering they're still asking for investors. I'm highly skeptical that it will be sweeping the nation in 10 years but I love the idea of the technology. Imagine how magical it would be!

In the Q&A session at the end, the speaker said that she feels eventually the organ transplant process as we know it is going to end as the self-engineered organs (building organs with the person's own cells) process will take over. But her freezing system will still be important as instead of freezing other peoples organs, we'll all have our own self-made frozen organs ready to go in her coolers.

I find this all super fascinating. Without taking anything away from how far organ transplant technology has progressed, I keep wanting technology to jump ahead 10 years so I can 3D print my own lungs from my cells. I could do it all in my living room! I realize that I'm probably not alone in the world in thinking that that the technology that will save them is just out of their reach and if only they could jump ahead 10-15 years. Imagine those people who were dying of infections in 1935 hearing of this magical discovery 'penicillin' that was going to change everything.If only they could have jumped ahead to 1945 when they were starting to mass produce it. The next thing is always just out of reach.

Of course, none of this fancy new technology will work if the super micro bugs take over and antibiotics become obsolete (thanks to the overuse of the aforementioned penicillin). Then it's good bye to all transplants. So maybe jumping ahead 10 years isn't such a good idea after all...

Walk test #4

My cousin, Jason, volunteered to help me at physio today since Isaiah in NS. He had the oh so exciting task of fetching me water, cleaning weights, and swiping all the fans for me. I'm sure it was the highlight of the week for him and that now he will want to go all the time.  

I was convenced to to the walk test I had been scheduled to do early Sept, right around the time I was hospitalised. I was hoping to put it off until next week when I'm sure I will magically be feeling better. However, the physiotherapist bluntly said that there was no point in 'waiting until I felt better' because maybe I will never feel back to my old self and that it's possible this is my new baseline. Oh the optimism.

So, I grudgingly agree, because honestly, if they make it up to me, I'll put it off for as long as possible. I might as well do it on a day where I was actually on time and they were having a slow day.

***Side note: I realise I complain about the walk test a lot considering it's just walking up and down the hall for 6 minutes. I walk on the treadmill for 20 minutes and complain way less about that (at least I do on here, Isaiah may disagree). There are several key differences that make the 6 minute test harder than my 20 min treadmill: 1) walking on a treadmill is way easier than walking in real life. In real life, your foot doesn't magically move back into the place it should be and requires energy for propulsion; 2) there is also no sudden stopping and starting on a treadmill unlike the constant 'get to the end, slow down, turn around' part that happens while pacing up and down a hallway, it's hard to get into a rhythm with the constant stopping; 3) There is an added emotional stress because it provides a objective reminder of my ever declining health (except that one time when it was high-fives all around); and 4) my oxygen levels usually drop to crazy lows from pushing myself which often gives me an oxygen-deprivation headache to enjoy for the rest of the day. In summation, I would rather 20 minutes on a treadmill any day.

All things considered with how I feel these days, the walk test went fairly well. I made it 548m which is slightly better than I expected. It is, not surprisingly, down significantly from the 584m I managed while I was on my pulmicort-steroid high. However, it's still a slight improvement from 6 months ago when I made it 535m.

I found the real difference this time was that I didn't feel that push to try my absolute hardest this time. While I didn't exactly stroll down the hall, I definitely didn't have that drive to push it until the end. I still pushed myself enough to tire out my legs and lungs but I was just missing that internal extra competitive something that I usually get around anything considered to be a 'test.' I kept waiting for it to kick in but it seems to have left the building. On the plus side, I didn't end up with a killer headache at the end so I may have inadvertently learnt that caring less is actually a good outcome.

If nothing else, at least the walk test is over for another three months. Next one scheduled in Dec. Urg Dec!

Inspiring?

What does it mean to be inspiring? It's a word that gets thrown around so often that I feel like it's pretty much lost all meaning. 

I've been thinking about this a lot recently after listening to several podcasts that touched on the topic (brace yourself for some rambling). Each podcast could have probably spawned their own blog post but since they're all on inspiration, I thought I would mention them all together.

A summation of the podcasts:  

1) A CBC interview with a man who is visually impaired and is planning a kayak trip down the Colorado river. The entire interview is worth listening too but my favorite quote was when he said (roughly quoting), "People always overuse the word inspiration. A blind person walks across the street and doesn't get hit by a car, and someone's like 'wow that's inspiring.' I think it's meant well and nothing against anybody but when you're disabled, you feel like sometimes people are using that word to separate themselves from you. They're saying 'you're the inspirational one', and you're over there and I'm over here. I think this idea of living a no barriers life is not just delegated to people with disabilities, we all have this capability to overcome our barriers. "

2) The Stuff You Missed in History Class (SYMIHC): Deaf President Now podcast. While the actual podcast is the story of Deaf President Now (a student protest in 1988 at Gallaudet University), the hosts prefaced the podcast by talking about how hard it is to find stories about people with disabilities where they are doing their own thing and aren't being portrayed as overcoming a barrier inspirationally for the benefit of those without disabilities. 

This is basically what they said (again, roughly quoting): "It's incredibly hard to find a story about a person with disability or disability rights without the inspirational overtone. There is a whole thread about overcoming hardship but it's presented in a way where it's an uplifting heartwarming tale told to non-disabled people about a disabled person. Some stories seem very positive initially until you stop to think about it and realize that it sets up people with disabilities as 'other' and having to overcome things to be equal and that's not how it should be. We have nothing wrong with inspirational stories, such as the story of the first woman to become a M.D. in the USA. It was a hugely inspirational event but today, telling a story about a woman going to medical school would be a pretty boring story about a woman going to medical school. But if 'we' (meaning the media or public) told a story about a blind doctor in 1849, the tone would be fairly similar to the story of a blind doctor in 2014. We want stories that break the pattern of setting up people with disabilities as inspirations for others and focus instead of people with their own agency and identity."

3) The BBC disability podcast (the 'inspiring discussion' starts at minute 38:00 minutes) where they interviewed a man with cerebral palsy who wrote a show about how people call him inspiring for dressing himself or having a job. He finds this super annoying (as one would). The entire discussion was filled with sarcasm which I thoroughly enjoyed. They were pretty rough on inspirational speakers but one woman went a little easier on people by saying "there is a huge difference between someone saying, 'you made me think about how I live my life and how I can do things differently' versus a patronizing, 'I can't believe you can go to the toilet by yourself, how inspirational.'" They ended the conversation by naming the person who inspires them and most of them named someone with a disability. 

The main theme of the three discussions was that there is a huge tendency to see people with disabilities as ‘other’ and it’s very easy for their stories to turn into an inspirational saga about how the person learned to live a ‘normal’ life. I think this happens more to people with people with developmental disabilities (autism, down syndrome, etc.) or physical impairments (visual impairments, quadriplegic, etc.) and less with chronic illness but to be honest, I’ve still had my share of being 'inspirational' for mundane things.

Sure, people with disabilities may have moments of inspiration for others, as may people without disabilities. The problem is when a person becomes inspiring just because they have a disability. Personally, I have no problem if people say David and I inspired them to start cycling again because we cycled across Canada. Because yes, that was pretty awesome. And really hard at times. We had to find all of our determination and self-motivation for it to happen which I still use to inspire myself at physio by telling myself things like "you cycled across the country, you can handle five more minutes on this stationary bike" or “what’s the matter with this stationary bike, at least there aren’t mosquitos biting your eyelids.” So sure, if you want to call me inspiring for that, I will accept it.  

What I have trouble accepting is being ‘inspiring’ while I'm living my day-to-day life. Honestly, all I do most of the time between physio and doctor appointments is read and watch TV. That is not inspiring. That's boring. And a bit depressing. I don’t feel as though I’m doing anything different than anyone else would in my situation. In fact I probably do less because some people who are listed go give talks on the importance of organ donation while I sit at home at read about fantasy druid worlds. 

I realize that the other side of my 'stop-calling-everyone-with-a-disability-inspirational' argument is that people have a right to find inspiration wherever then can or want. And if someone finds the fact that I read a lot of books while I wait for a lung transplant, I guess they can go ahead. As long as it's not patronizing like the woman in the 3rd podcast stated, there is really no harm in it. The problem happens when the person with a disability exists solely for the inspiration of others. No one wants to exist to be a life lesson, or to teach people how to love and live life to the fullest or whatever. People have a right to be their own person with their own goals and own successes that may have nothing to do with you whatsoever. 

I think I'm just so tired of the endless Upworthy stories on Facebook and elsewhere about someone who is an inspiration to us all because they got married 'despite' having an amputation or started a business 'despite' having Down syndrome. Who would have thought those things are possible!? Those stories are only there to make other people feel good about themselves. I still really like what the host said from the SYMIHC podcast about how the first woman who became a doctor was inspiring. She broke down barriers and dealt with misogyny and was probably socially ostracized. Now no one thinks twice about female doctors. So why isn't it the same for people with disabilities?

In conclusion: I'm not saying that we should stop being inspired by things. I just want stories about people with disabilities to change to be more about the actual person and less about them overcoming something. So the next time you hear one of the 'inspiring person with disability stories, think about the person. Does the story give them autonomy? Do they exist for reasons other than making non-disabled people feel good? And most importantly, are they truly doing something inspiring or are they just living their lives as human beings?

End of life care.

I was listening to a old Radiolab podcast (one of the best podcasts out there, subscribe to it now, you'll learn so much) last week , and the topic of discussion was end of life treatment and the disconnect between the wishes of average people vs doctors. Listen to it here.

They started by talking about a study done by Johns Hopkins University where they asked doctors "if you had a brain disease or brain damage that can't be cured, you can't recognize people, you can't speak understandably, and you're in this condition for a long time, indicate your wish for the following medical procedures: CPR, ventilation, dialysis, feeding tube, surgery, etc..." As you can see below, the vast majority of doctors responded that they would only want pain medication as a treatment.

That was then compared to interviews of people where the majority replied yes to CPR and most other forms of treatment.

The hosts of the show found the difference between doctors and non-doctors answers quite disconcerting (as did, I'm sure, everyone else listening). They talked to a doctor who said basically that the reason for the disconnect is a lack of education on the success rates or severity of the intervention. For example, doctors know that CPR works 8% of the time (with only 3% of the survivors returning to a pre-CPR condition) whereas most of us get our information from TV shows like ER and Grey's Anatomy where CPR works 75% of the time.  Damn you Hollywood!

The doctor felt that a lot of the time, often the treatment can be worse than the actual disease and while it may briefly prolong your life, it's not worth the pain it causes.

It's kind of terrifying that people are getting medical treatments that doctors themselves would never dream of doing to themselves or their family. Part of it is a lack of information on what the procedure will do for the person and part of it is families wanting to do whatever it takes to extend the person's life.

A doctor they interviewed said that the topic is hard to discuss with families because it is difficult for families to hear that there is no hope of recovery. It is made harder by the fact that 90% of patients don't have a end of life plan. 90%! That is ridiculous.

The paradox of the entire situation is that when asked, everyone says that they would like to die quickly and without pain but at the same time, most people want every medical intervention done to prolong their life as long as possible. Often the artificial prolongation of life means that death is neither quick nor without pain. The hosts concluded that a good death means "loving life with your whole soul while being prepared to die when there is no more that can be done."

That is easy to say but it doesn't help when a family is being asked if their family member should be placed on a ventilator.  I know people hate thinking about death, but is avoiding the end of life conversation worth it if means that your family won't know what to do if you can't make the decision yourself? Why put the burden on your family if you already know how you want to die? And if you don't know what kind of end of life care you would want, what makes you think your family is going to know? Think about how hard it is to make easy decisions as a family (ie. what will we order in for supper?) and then imagine trying to make those decisions when about someone's life. Wouldn't it be easier to decide when you actually have time to think about the decision and no one is imminently dying?

The whole point of my rant is that there needs to be better education from health professionals about end of life care options because clearly watching ER and House a few times doesn't cut it. Also, talk to your family about how you and they want to die while everyone is still healthy. Put it in writing and it will make decisions much easier when the time arises.

Caregivers.

Ok, enough complaining from me about being sick. Let's move on to more interesting things. Like this article in the Globe and Mail about how illness in women is related to an increase in divorce rate. 

"The newest study, presented Thursday at the annual meeting of the Population Association of America in Boston, found an increased risk of divorce in older couples when the wife – but not the husband – became seriously ill."

Awesome.

The article typically blames the fact that men are not 'traditionally caregivers' and that they flee at the idea of having to care for someone (I may be paraphrasing). However, a women from the Canadian Cancer society said that women shouldn't be afraid of being abandoned when they get cancer because the study just looked at people with brain cancer so it shouldn't be extended to all types of illness (not so hopeful for those with brain cancer). Also, she says that the study didn't look at who initiated the divorce so maybe the women are deciding they don't want to spend their now limited years stuck with a super annoying partner (again, paraphrasing).

The whole point of the study was to look into caregiver supports and ways that that social workers and doctors can better support a couple in the stressful time. This is important because being a caregiver is a tough thankless job. The man that they profiled (he photographed his wife's struggle with breast cancer for three years) said that he 'has never been as happy as I was during that time.' That does not always happen.

Being someone's caregiver is hard. It's exhausting and challenging and while it may bring some couples together, it can just easily drive them apart. There are countless reports of caregiver burnout; stories like how the caregiver becomes sick from the stress and refuses to seek medical treatment because they refuse to take any time for themselves.

Burn out can happen so easily if the illness is prolonged or if things don't improve as expected. Caregivers can have guilt over taking a break because 'why should they be having a good time if the other person can't.' Or have fear that no one else would be able to meet the ill person's needs as well. Or feel like it is a failure if they are unable to provide all the support. Then there is the extra guilt about venting frustrations because no one wants to be the jerk complaining about how hard it is to take care of a person with cancer. No wonder so many couples end up separated.
 

I think that Isaiah and I have been pretty good in avoiding caregiver burnout. It helps that while he has been picking up more than his share of the housework, I can still help out some and have my own activities. He still has his weekly board game nights and often goes out cycling or to the market during the day. Also, my family consistently remind him that they can step in, if he wants to go back to NS for a bit. The fact that he is the most laid back person ever, helps when dealing with stressful news or when I freak out with emotions.

One of the things that isn't often discussed and that I have found the most challenging is finding the balance between being partners as well as being in a caregiver/care-y (care-ie? care-e? being the sick person?) relationship. It really changes the dynamic of the relationship and can be hard to figure out.

I've spent the last hour writing and re-writing how to best explain the struggle and I honestly can't find the right words to convey the frustration and helplessness and vulnerability and all other emotions of having your partner become your caregiver. It adds such as weird element into the relationship that was never discussed in any relationship advice guide I've ever read (not that I'm super proficient in relationship advice books). Honestly, it's still something that we are trying to figure out but at least he doesn't seem to be having caregiver burn out at the same time. 

No longer a CTRS.

I got an email the other day saying that "My Certified Therapeutic Recreational Specialist (CTRS) credentials have expired...as a result I can no longer use the title of Certified Therapeutic Recreational Specialist...represent that I am certified...or a qualified provider of Recreational Therapy Services." Wow, relax certification people!

I knew this was going to happen as I didn't pay my renewal fee. I figured there was no point seeing as I am not going to be working for the foreseeable future so why keep paying money for a title that I don't need. Even though I knew it was going to happen, I still find it depressing. It's just another reminder of how much my life is on hold while I wait.

Now I really don't know what to say when people ask me what I do. Not that very many people ask anymore but someone did at pottery last week. I just replied that I am waiting for a lung transplant and that I'm not sure what I 'do' anymore. Without missing a beat, the woman who asked said 'well now you are a potter.' So I guess I'm a potter now! Problem solved.

Coping with physical decline.

Today at physio, there was a person (I'm keeping it vague for confidentiality reasons) who was struggling with the 20 minute treadmill walk. They were checking their oxygen levels every 5 minutes or so resulting in a lot of loud beeping as the machine beeps whenever levels are below 88%. Afterward, the physiotherapist had a long talk with them about how it was time to decrease the intensity of their workout as their oxygen levels have been on a slow decline (I realize that it is super creepy that I know their entire conversation but it's really hard not to overhear what is happening 2 feet away). The person looked so upset that I wanted to give them a big hug and tell them it is not their fault their lungs are failing.  

The person looked how I felt back in Nov after my 6 min walk test when my oxygen levels dropped earlier than they had in the test a month prior. Despite the fact that I had started physio during that month and was doing all I could in that time. It is so hard to be physically declining when you follow the treatment plan and exercise three times a week. It can feel like there is no point in trying because trying doesn't stop the lungs from failing. It does not guarantee success.  Hell, not only does it not guarantee success, it doesn't even guarantee being able to maintain a level of health.

Everyone with CF or any other degenerative disease has had to come to terms with this lack of success at some point in their lives. The idea that if you work hard you can succeed and 'beat it' doesn't work for us.  There is no 'beating' some diseases. We don't get to see it slowly reduced or eliminated from our bodies. It is something that is always there and is always getting worse.

You can do everything right; aerosol masks twice a day, exercise regularly, stay away from smoke, eat healthy, take all medication regularly, and still end up needing a lung transplant. The best you can hope for is to delay the decline as long as possible. Following a good treatment plan can help but the disease will progress despite anyone's best efforts. The hard part is that the body adjusts so easily to small declines that the change can be almost imperceptible on a daily basis. Until you wake up one day and wonder when it became so hard to climb a flight of stairs.

I don't think the frustration of degeneration gets any easier. Nothing is harder than making the best possible effort and still feel as though you are failing. It is hard to adjust from blaming yourself to accept that it's out of your control. Or to accept that all you can do it control what you can and realize that while your efforts will not stop the decline, it may help delay it somewhat.  And sometimes delay is all a person needs. Delay can mean the difference between transplant or no transplant.

A few transplant stats.

A lot of people tend to ask me where I am on the transplant list. I can't really answer that since it isn't a 'first come, first serve' system so there is no way of determining a specific ranking. There are two groups 'group 1 and 2' which puts people in high and low priority groups. So the lungs would go to someone who matched in group 1 before going to a match in group 2. Or maybe it's the other way around. I honestly forget at this point. I do know that I am considered in the 'low priority' group but if I start to decline then I will be switched to up to group 1....or down to group 2 (I easily forget non-essential medical information).

While I have no idea where I am on the list, I can give you some information about how many people are waiting and such.

As of March 31, 2014 in Ontario:

- There are 79 people waiting for a lung transplant. 44 Women, 35 Men.

- The blood type breakdown is: type A (my group!) - 29, type AB - 0, Type B-10, Type O- 40.

- Two people are waiting for heart + lung transplants. 1 Woman, 1 Man

-  A total of 1534 people are waiting for various types of organ transplants.

- The majority of people waiting are in the 51-60 age group with 473 people. The second largest group is 413 people. There are 72 people in my age bracket (18-30) and 31 people aged 0-17.  
 
- Only 24% of Ontarians are registered donors. That is 2.84 million out of 11.74 million people.

- There have been 22 lung transplants from Jan 01-March 31.

-From April 1 - December 31st 2013 there were 101 lung transplants. 95 at the Toronto General Hospital, 6 at the Hospital for Sick Children.

I found all this information on the Trilliam Gift of Life Network  if you want to check it out yourself. They have the Ontario stats for every organ donation over the past 10 years.

Fighting with the TTC.

Isaiah and I recently learned that in January, the TTC (Toronto Transit Commision), brought in a program where people with a disability can have a support person accompany them for no extra cost on the bus/subway as long as they require assistance during the transit or at the destination. Awesome right? Yes.

The person with a disability just needs to apply for a 'I have a disability and need a support person with me or at my destination' card and since no one knew about the program, they are letting people use the honor system until March 30th to give everyone time to have their medical people fill out the paperwork, get passport pictures taken, and have the cards processed. 
Ever better right? Who doesn't love the honor system?

Bus drivers, that's who!

This morning, Isaiah and I decided we should take start taking advantage of this program since the only reason he is taking the bus is because he is my support person at physio (and let's face it, people with disabilities have to take advantage of the few perks they can get). Plus I took my oxygen in my wheely cart again today and he can carry it up and down the stairs a lot easier than me. I would think that I am the prime target audience of this new program as I require a support person at my destination but do not have a disability which requires the wheelchair bus service and once I get my transplant, I will continue to be a paying customer of the TTC. 

Great! Except the bus driver this morning had no idea what we were talking about. Isaiah got on the bus after me and told the driver that "I'm her support person, she just hasn't gotten the card yet." The bus driver replied with a "What are you talking about? You still have to pay. What is this program? Where did you get the idea that you could ride for free?"

After a lengthy discussion trying to explain the program to the TTC driver and describing how all the information is available on their website saying the honor system can be used until March, the bus driver finally agreed to let Isaiah on but was obviously not happy with it. He said he never heard of the program and that he would have to look into it further. I'm pretty sure he thought we were trying to scam the system.

Arggggghhhh. This pisses me off on so many levels.

Level 1: The TTC brought in this great program but obviously neglected to inform their drivers.

Level 2: Because drivers are not informed, in order to use the system, a person with a disability or their support person will have to fight every single time they want to take advantage of the program. Not because bus drivers are bad at their jobs, because they are not informed and therefore skeptical about people trying to get a free ride. That is exhausting to both the bus driver and the person with disability.

Level 3: Isaiah and I are the most non-confrontational people in the world so having to argue with the bus driver every time we travel to the hospital is a nightmare to me. I would rather drive than go through that three times a week.

Level 4: Because of our experience using the system the one time, after physio Isaiah ended up just paying because we were both too tired to argue with another TTC worker. I know that as an educated person with a disability, I have to stand up for my rights because no one else is more qualified than me. However, arguing is exhausting and I spent an hour and half exhausting myself at physio so I had no more energy for it today.

After the bad experience today, I am off tomorrow get my passport pictures done for the ID card. Even with the card, I'm sure the bus drivers won't have any idea what I'm talking about as they obviously weren't informed about the program. I still think we will have to argue every time we use the card and I'm not looking forward to it. I can only imagine the arguments that will take place post-transplant when I still require support but no longer need oxygen so I won't look like I have a disability. Argh!

Seriously TTC admin people, how hard is it to send a email to your bus drivers to tell them about your new program? If you are too understaffed to write a email, I will give you an example you can use.

"TTC employees: A new program has been implemented to allow people with disabilities to have a support person accompany them on the transit system. Only one fare will be required for both the person with a disability and the support person. Because we suck at PR and no one knew about this program until now, we are letting people use the honor system until March 30th. Don't worry about people trying to scam the system because if the people with disabilities don't know about the program, the general public definitely won't be informed. Take people at their word and remember that young people can have disabilities too. Don't be a asshole. Thank you."

So tired of motivational posters

I discovered this week that I can stream the Olympics on my phone at the hospital during physio. Hurray for hospital wifi! It also helps that CBC has great online coverage for all of the sporting events. Today I watched the womens snowboard halfpipe. It was very exciting. It is a much better way to pass the time while I am on the treadmill and exercise bike than staring at all the motivational posters. I am not one for motivational posters as I tend to take everything to a level of absurdity.

Like the example below "If you can dream it, you can do it." by Walt Disney.

Well, Walt, I have some pretty crazy dreams at night. I have dreams where I can fly, and breath underwater, and can jump over buildings, and walk through walls. I even dream that I will one day be looking down on earth from my moon castle but that probably isn't going to happen either.

More practically, I dream about traveling around the world and running marathons and climbing mountains and cycling trips. I can not do any of those things no matter how hard I dream. Maybe I will be able to do those things again one day (not that I was ever able to run a marathon due to my love of 'doing anything other than run') but not in the foreseeable future. Telling me that if I can dream it, I can do it just makes me feel bad about all the dreams I have that I can't fulfill.

I realize that I have spent way too much time thinking about this poster but in my defense, I do stare at it for 20 minutes three times a week. I think they need to start rotating their wall art. Or maybe I should start drawing pictures for them so they can move this poster out of my area of the room. I could write appropriate quotes such as 'if you have realistic dreams and work hard toward the goal, you may be able to do it. But sometimes it is out of your control. Learn how to deal with it.' I don't think they would sell very well. 

It is really hard to take a clear picture while walking on the treadmill. Also, what's with the boat? Are we suppose to have boat-related dreams?

Parking permit!

I finally got myself an accessible parking pass. I can now park wherever I want! Ok...probably not, but I can now park close to stuff. Yay! I avoided getting one for the longest time because I felt that once I got one than it would be my excuse to never walk anywhere. However, with the lack of parking in Toronto, that really isn't going to be a problem. Plus I figured I will for sure need one after my surgery and it is easier to get it now than when I'm walking around with a walker.

I've heard stories about other people with CF or other disabilities getting notes on their cars because some jackass thinks they are scamming the system because they don't look 'disabled'. I will not be pleased if that happens to me.

The right to park anywhere!

I am not my disability.

On Friday, one of the physio assistants called me 'a cf'. Not a 'cf-er' (which I've heard a plethora of times), a cf. She looked at me standing in the doorway, turned to her colleague and said "we have a cf at the door."

Argh! How many times does it have to be said? "I AM NOT MY DISEASE!!"

(No, I didn't say anything to her because I have to still see this person three times a week and rely on her for stuff like 'getting my weights' and 'cleaning the room.' Let's save the 'people being uncomfortable speaking up to professionals on whom they rely' conversation for later.)

I know that she probably didn't mean to dehumanize me with the comment. She was probably just commenting on the fact that I have CF which meant that she needed to figure out which side of the room I should be on and whether or not she will have to clean that side before I enter the room. However, at that moment, being called 'a cf' reduced my identity and person-hood to my disease. Nothing else about me mattered.  

I know there are people out there who use the word 'cystic' or 'cf-er' to describe themselves in certain situations (note the 'er' attached to the 'cf', if nothing else, at least there is a 'er' to attach the disease too). That is a personal decision and one that each person get to decide. Not you. You do not have the right to define me by my disease. I am a person first, a disability last. I do not like being referred to as my disease any more than you would enjoy being called a 'acner' or 'dandruffer'.

When we call each other by a medical label, we reduce that person to their disease. We are saying that we see that person as first having a disease or illness and second as being a person. We reduce each other to a condition on which we then use to base all of our future interactions. Calling someone 'a cf' or 'epileptic' or 'autistic', reduces that person to one characteristic about their lives over which they had no control. Why would anyone have the nerve to assume that the other person wants to be defined by a medical diagnosis?

Look, I understand that we, as humans, are lazy when we talk and it is faster to say 'cf-er' or 'disabled person' over 'person with cf' or 'person with a disability' therefore the former seems to be the go-to option. But when doing so makes a person feel dehumanized and as though they are being reduced to their disease, we have to get our butts in gear and start treating and calling each other people first and foremost.

Language is important. Let's be more aware of how we use it. 

The Fault in Our Stars by John Green: Some musings.

Two nights ago I read The Fault in Our Stars by John Green as the trailer was released and my cousin convinced me it was worth the read. She was right. Everyone should read it.

The basic synopsis is that two teenagers fall in love after meeting at a cancer support group and bond over a book about a girl dying from cancer.

If spoilers bother you, you should probably stop reading (although a study showed that people actually enjoy stories more when they know the ending so I'm actually enhancing your experience).

Besides some minor medical points that I had issues with (ie I can't imagine her oxygen flow only being at 2L), it was really good. It deals with illness, death, and dying in an way that doesn't talk down to you or make it all be part of some grand scheme in the end. There was also an abundance of sarcasm which I really enjoyed.

Here were some of the things I really related to:

1) The teens talk about how awesome good nurses are and how horrible the bad ones can be. It's true. Nothing beats having a nurse that treats you like a human being and listens when you explain how you like things. Nothing is worse than a nurse who refuses to see you more than their job or who gives you pity stares and makes comments about how depressing your situation is. Ummm, thanks?

2) Being teenagers, they hate any sort of motivational saying or cliche that tends to provide more comfort to those saying the phrase than those hearing it. Even as a non-teenager, I also hate those cliches. I understand people say them because they have no idea what else to say and I get that. I have said those cliches to people in the past because I also have no idea what to say. But can't we all come up with something better? I have ranted about this in the past.

3) The boy wanted his life to be part of a greater purpose. He had a hard time recognizing that most people live and die without ever getting their '15 minutes of fame'. This is probably getting harder for people as everything now is about leaving a legacy behind (which I've ranted about in other posts) or having a greater meaning to one's life than simply being a good person. In the end, he came to the conclusion that often in our attempt to leave a mark on the world, we end up leaving scars instead and maybe leaving the world as you found it is good enough. I loved that sentiment and appreciated that in the end, the author did not make his life as part of a great plan.
So much of literature writes characters with disabilities as a) having their purpose in life being to inspire everyone else, b) a saint-like figure, or c) the villain. It is always refreshing when a person with a disability is written having a regularly complicated life filled with video games and sarcasm. 

4) The boy made his friends write their eulogies while he was still alive which I think is a brilliant idea. They called it a 'pre-funeral' and he got to actually hear all the nice things that people said about him. I think everyone should get this chance. There is the problem of never actually knowing when you are actually going to die so you could have a pre-funeral and then go on living for another year. It is impossible to know when one's 'last good day' is going to be so maybe we need to annually start telling people great things about each other on the off chance they will die that year. I think talking about death would would help people recognize how much they have impacted other peoples' lives. It might also make people more accepting of their mortality which I believe is a good thing. We really need to stop pretending that death will never happen to us.

5) When the boy died, the girl got really angry when everyone he had gone to middle school with posted sympathies on his fb wall and commented about stuff he enjoyed then but had hated when he died. She felt it was insincere considering they hadn't made any attempt to keep in touch after he withdrew from school. I agree that typing on a facebook wall wishing someone is 'up in heaven playing basketball' when a) the person no longer enjoyed basketball and b) didn't believe in a literal heaven seems like a dick move. However,  people need an outlet to express sympathies and if a facebook wall is how we do it now, that's fine. Also, people drift apart and you remember people by how you knew them in that moment. It would be unfair to think that everyone you ever knew will know your preferences when you die. There is a fine line of remembering the person as they were and remembering them how you wanted them to be.

I feel like I could ramble on about the book for much longer but that is all I'm going to say for now. In conclusion, if you have a few hours and want to spend it on a really good book, read this one.

I yelled at a telemarketer.

So...I may have yelled at a telemarketer....

Yesterday my phone rang with a '416' number so I obviously couldn't ignore it. Then there was a few second delay on the other end to which I knew in my gut it was a telemarketer. However, I couldn't bring myself to hang up on the off chance it was the transplant people (they probably wouldn't enjoy me hanging up on them). I put myself on the 'do not call' list but it seems that does not apply when you already have a credit card with that company.

I listened to the womans spiel from the credit card company about how they were offering me "free for a limited time!!" insurance on my credit card to protect me if I "get a critical illness, experience sudden job loss, or have job termination." I politely said "no, I'm not interested" to which the lady replied "well, Ms.Watson, most of us don't know when we will experience a critical illness or job loss."

.....that was when I may have gotten a little bit angry and loudly stated that "I ALREADY HAVE A CRITICAL ILLNESS!", to which she quickly thanked me for my time and promptly hung up.

Seriously RBC? Thanks for the reminder of my critical illness and job loss. I know it's not the woman's fault...it's the fault of whoever made the decision to use peoples fear of impending doom and loss as a marketing tool. Nothing works better than like fear to get people to buy stuff.

I should have taken them up on the offer and seen how far they would let me go before they realized how much money they would lose if they actually insured me. I wonder if they would have let me claim sushi as a medical expense? Although, much like long-term disability, I'm sure they would have refused everything with a 'pre-existing condition' clause.

Questions.

Imagine you have a permanent disability or illness, just pick one at random (Let's hold the discussion between a disability and illness for a later date).  For some of you, just think about your life. Now answer the following questions:

Do you think disability is just a state of mine? If you had the option to spend one year bedridden in exchange for getting rid of your disability, would you? Would your life be better if you weren't disabled? Do you think your disability or illness has made you a better person?

These were questions that were asked at the start of the 'Disability Talk Show' podcast that I listen too (yes I realize that half of my blog posts are just responses from various podcasts). The host of the show (who has albinism) asked his current guest (both who also have a permanent disability) those questions and they laughed awkwardly and answered in the briefest possible way before moving onto other topics. No one, except the host, wanted to discuss the questions in-depth.
So let's get into it.

People don't seem to ever want to discuss the possibility that maybe not having a disability would mean you would have a better life. I understand, it is a complex topic. No one wants to define what a 'good quality of life' means to another person because when we start judging that a person doesn't have a life we think is worth living, we take away their rights as a person. That is everything the disability movement has worked hard to fight. However, we should able to let people talk about how having a disability has made their life better or worse.

Would my life be better if I didn't have CF? My initial reaction is absolutely. No question. It would mean I could have kids, owalk without getting short of breath, and have a longer life expectancy. But then does having a better physical quality of life translates to my life being 'better' as a whole? Quantity doesn't trump quality and I've had a pretty kick ass life so far. Would removing CF mean that I have the same level of psychological, spiritual, or emotional health? I don't know. Maybe I would be at a job I hate with no good friends. Maybe I would be hocked on drugs or gambling. Or maybe I would be just as awesome. It is impossible to tell.

I also find it difficult to answer 'has having CF made me a better person?'. My immediate response is no. I am not in group of people that view their disability as a 'gift' or a 'learning experience'. It sucks and I would give it up in a heartbeat. I would, without hesitation, spend a year bedridden in exchange for getting rid of it for the rest of my life. And I don't think I would become a better or worse person than I am today.

However, if I never had the disability, would I be the same person? No. As much as I don't want to admit it, having a disability has affected how I see the world so if I never had that lens, I have no idea who I would be. Would I still have the same drive to experience as much as possible? Would I still have a never quenching thirst to learn new things? Would I see disability and discrimination in the same way? I have no idea.

The only way to be able to answer any of these questions would be if we all got a 'do over' to see how our lives would be different with changes. We don't get to do that so all we can do is wonder 'what if'. I think that some people are uncomfortable talking about how their lives, or a loved ones life, would be better without a disability because it might undermine the life that they do have. It can also be a coping mechanism to say that a person is 'better off' because of their disability. I don't think it is such a bad thing to hypothesis 'what if'. In the same way my life would be easier if I had a million dollars, I know rationally my life would be easier if I didn't have CF. Admitting that doesn't takes anything away from my life or make me feel worse about myself. I'm not distressing over the fact that I don't have a million dollars in the same way that I don't distress over the fact that I have CF.

We, as a society can't have it both ways. We want to find a cure or a reason for every disease and disability without wanting to acknowledge that people's life would be easier without them. If we are honest about how much the disease sucks, then people will understand why finding a way to fix it is important. If we hush over the bad parts, no one will try to make things better because everything is fine. So, can we stop making it a bad thing to admit that having CF (or whatever disability) sucks and that people would better off without it? Doing so doesn't make me or anyone else less of a person.

Language of Illness

Yesterday I listened to a super interesting podcast about the language of cancer and illness in general. The narrator, who had cancer, hates battle metaphors to describe illness about as much as me and wanted to find something better.

I hate the battle metaphor because illness is complicated and confusing and while I understand that people need a language they can use, I think we need to find something better to talk about it. Nothing that frustrates me more than hearing 'lost their battle with...disease x' or 'bravely fought a good fight but lost to...disease x'. We don't use that to talk about a heart attack (their heart defeated them) or a car accident (they lost their battle with the tree), so why is it ok to use with cancer or other diseases?

I find it makes the person a loser when they die. The 'fight' metaphor might work for some people but for those who are living with a chronic disease, there is no 'win' option. There is no possibility of getting rid of the disease so losing is the only option. (p.s. the disease of the person dies with the body so it is actually more of a stalemate no?). The documentary exploring language around illness seemed like it was made just for me.

The documentary mentioned that the first time the battle metaphor with cancer was publicly used was when President Nixon declared ' a war on cancer' and has been going strong ever since. The narrator talked to several professionals to see if they could come up with a better metaphor to describe illness. His main problem with the terminology is that when he had cancer, he didn't want to be fighting part of his own body and didn't like being told to see it as something to hate. 

A doctor of palliative care was interviewed who said that the fight terminology is often used because it can be a way for family to recognize the struggle the person with cancer has had. She did say the 'living alongside' might be more appropriate as people often 'live with illness' for a long time before it becomes terminal. I do like that idea as it is true that illness is more about 'living with' an illness rather than a full on attack. I see all my medication, aerosol masks, and physiotherapy as something that goes along with having CF rather than a way of attacking the disease so I would be happy with that metaphor. "Died after living with CF" doesn't sound too bad.  

The narrator then talked to a director of marketing for cancer research who thought that using cancer as the 'enemy' in advertising was great. The narrator tried to explain that the cancer had been part of him and he didn't want to declare a civil war on his body. Also, there was nothing he could actually physically do to fight the cancer as he couldn't cut it out himself or give himself chemo. She thought that most people appreciated their ads and saw no problem with it as they were a way to motivate people in keeping with their treatment. I guess it might help some people but I don't think turning cancer into the boogyman is a good approach. (One of their ads was "Cancer is Coming to Get You!!!", is that not terrifying to anyone else?) 

The narrator then talked to a scientist in cancer research who said the metaphor he thought worked best for the actual cancer cells was 'an orchestra' as there are many proteins and enzymes that all work together to create growth and life. Cancer happens when one protein in a cell is 'playing wrong' causing more growth than usual. He said if one member of your orchestra is playing out of tune, you wouldn't go in and bomb it, you would simply re-tune the instrument. Chemo and other treatments could be seen as a way of 're-tuning your cells'. I also like this way of approaching illness. It makes people sound a bit like machines that 'need a tune up' but seeing as I have literally called some of my hospitalizations 'tune ups', I can't find a problem with it. I would be happy with "Died because she was out of tune" (I don't think I will be getting any requests to write obituaries after this). 

I think the best conversation was when the narrator spoke to a theologian who said that when people talk about battling, they use the same terminology as when they are discussing something evil. This has created a connection that cancer or a illness is evil.  But while cancer and illness are unfortunate, they are not evil. They just are. The same way that leaves dying in the fall can be seen as sad or unfortunate but you wouldn't say that it is evil. She said it all comes down to deciding if the illness is something is evil that must be battled at all cost or is it a dying or change that is a part of life that we can grieve? I think this is an excellent perspective. Illness is something that happens and yes it sucks but that doesn't make it inherently wrong.

The narrator decided in the end that the best metaphor for him is to 'kiss his cancer good bye'. Because it recognizes the grieving and loss that happened without making him hate his body. That can be done when the illness is acute but I won't be 'kissing my CF good bye' anytime soon. It was an interesting discussion that I think we all need to have. The language and terminology we use in life is important and it should be just as important when discussing death or illness in general. Let's stop using the battle metaphor and start using something that is less demoralizing. Whether it be 'living with' or 'need a tuning' or something else that I haven't thought of.

Happy 30th Anniversary Lung Transplants!

This year marks the 30th anniversary of the first successful lung transplant!

In 1983, Toronto General Hospital had its first long-term single lung transplant.  It was the 45th transplant attempt at the hospital and the first to be a real success as the man (known forever as 'patient 45') lived for 6 years post-transplant compared to the 44 previous counterparts who only lived for than a few days or weeks.

I am beyond thankful that I live at a time and place where lung transplants are an actual possibility. There have been so many advances in medicine and science in the last 30 years that it is incredible the difference in the level of care one receives today compared to 30 years ago. Not even just for transplants, care has improved for people with CF or diabetes or heart conditions or cancer or pretty much everything.

Thirty years ago, lung transplants were still an experiment that were tried on a few people who were gutsy enough to try a breakthrough procedure. It is hard to say whether or not I would have been able to commit to that kind of procedure 30 years ago. I like having stats with the odds to be in my favor too much to imagine being confident in trying something completely new. At the same time, if I was facing my impending death and had no other choice, I might go for it. If someone offered me a chance to 3D print myself new lungs today, I would be all over that in a heartbeat.

It makes me wonder what incredible technology and medicine they will have 30 years from now. Obviously they should have perfected 3D organ printing that they will be able to print new organs (They have successfully printed a kidney). But will gene therapy be advanced to the point where it can eliminate the symptoms of CF? Will people with CF even need lung transplants anymore? Or will they have some new technology that I can't even fathom?

I have moments where I wish that science could hurry up and make their discoveries faster so I can take advantage of them while I have the chance. Then I feel bad for having a pity part because I'm sure the 44 people before 'patient 45' felt the same way or much worse. I can't complain when the first month post-transplant survival rate has gone from 50% in the 90's to 95% today. That is pretty damn good when you consider how hard it is to transplant lungs. We hear about transplants so much now that we barely think about how amazing it is that we have the capability to take the incredibly fragile delicate lungs out of one person and put them in the body of a second person and have that person live for many years afterwards. Science is awesome.

So Happy 30th Anniversary lung transplants!


Here is the CBC article about Patient 45.
Read more about the history of the lung transplant

Thank you student loan!

My student loan has been forgiven! Hurray for having a severe permanent disability that renders me unable to be employed...! (or maybe not so much) 

I have been in repayment assistance since February which has thankfully meant that I haven't had to worry about making payments. However, it is nice to know that I won't have to keep reapplying every 6 months or worry about reaching the max months allowed for repayment assistance.

So thank you student loan!  I will miss all the times I hit '1 for English' 7 times before the system kicked in, or all the times you called me just to let me know you would be mailing me something. And then you mailed me the same letter twice. Or when I received two letters from you, one saying I had to pay you my right arm for interest incurred and the other saying that all was fine. We may have had our differences and I may have (yes, I did) sworn under my breath at you for your inexplicably horrible website and high interest rates but now I never have to speak to you again. Woohoo!