Most of the time, I can pass for healthy. If I don’t open my mouth to talk about how I have had Stage IV Metastatic Breast Cancer (MBC) since 2017, most people have no idea. Yet, when I travel to conferences or classes like Project LEAD recently, my various limitations arising from the cancer, surgeries and treatment become very apparent and I’m confronted again about how our world is organized for those people who don’t experience challenges.
Being treated as other, in a variety of insidious ways, is really uncomfortable.
One of the biggest issues for me is movement. Having titanium rods inside both femurs in addition to all of the soft tissue changes means that I’m not flexible and simply can’t move quickly. Plus, I often set off the alarms at the airport when going through security/TSA, resulting in extra investigation. So, when I have to get from the front of an airport to the gate quickly or get to a new gate when there is a chance or a layover, it is really hard and painful, as well as super stressful.
The ADA (Americans with Disabilities Act) access solutions offered by airlines are pretty limited and only real way of getting assistance is to ask for a wheelchair between gates and through security. Some airlines are better at accommodating challenges than others and I’ve been on the receiving end of those people/systems that are helpful and those that are really not. It’s pretty clear that no one with an actual disability designed most of the programs.
But, I digress.
Ok, so let me set the scene …
This is a recent picture from my recent trip to California for Project LEAD. Now that my hair is growing back and I’m not bald, you don’t know from looking at me that I have physical limitations. When I ask for accommodations, I often get looks from the employees and people around me. It’s usually me and a variety of very elderly women in the line of wheelchairs to get on a flight. And I stick out like a sore thumb.
Here’s what I often experience while being wheeled to the gate or between gates:
- Looks, lots of looks — often pitying, some more questioning. Thinking of making a sign — “I have terminal cancer.”
- People walking into the path of the wheelchair, stopping in front of the wheelchair, pushing through such that I’m jostled or pushed out of the way. Thinking of getting a very loud air horn.
- If I’m addressed (usually doesn’t happen, people simply ignore me), people often speak very loudly or utilize simple/infantalizing language. Thinking of making a sign — “I have terminal cancer, I’m not deaf or cognitively impaired.”
I’m sure there are other things, these are just the ones that came to my mind most readily. For someone like me who has always been very independent, having to depend on others to get around, to get to my airplane on time, to lift my luggage, etc., is a huge adjustment. And I find myself helping others more often too, knowing how hard it is to need help and to ask for help. I fully realize that others deal with so much more and that hard won empathy is something everyone could benefit from.
Next time you see someone being escorted in a wheelchair or otherwise, get out of the way, offer a smile, and don’t judge — yes, we get to go to the front of the line, but there’s a really really good reason for that.
Oh, and yes, I wear a mask in public spaces — thinking of making a sign “I’m severely immuno-compromised and could die from your germs.”
No Half Measures 
Powerful and valuable, Abigail.
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Thank you for reading and commenting. ❤️😘
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Boy can I relate! Sometimes it’s just as tiring trying to look “normal “.
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Truth, my friend!! It’s often extremely tiring and lots of thought goes into how I might spend the spoons of my limited energy each day. It may not look like it, but just showing up can take a lot. Appreciate you reading and commenting!
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Wow! Sounds really difficult and distressing. Thank you for sharing your heart felt experience. 🤗🤗
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Difficult and distressing are good descriptors. Appreciate you reading and commenting.
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You are welcome. My daughter is autistic and struggles at airports with her hidden disability. I know how she finds it distressing… And I have an ankle plate which sets off the alarm at airports, I always feel like I am being treated as a criminal.
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So true!! I get pattered down regularly because of the titanium rods inside my femurs.
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Totally relate to that. It’s frustrating that people don’t have compassion to others and yes I want to use a sign that I’ve terminal disease not only at airports but in just normal public activities.
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Right?! I’ve put quite a few stickers on my car and often wear different shirts that point out these things but I do think most people are super self absorbed. Appreciate you reading and commenting!!
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I have low heart function, which with complications has disabled me. I’be been living with this for several years, so I guess I’m doing all right, though it’s not been smooth–heart attacks, heart surgeries, harsh medications. And I don’t have much energy day to day. And all these are more or less invisible. I have challenges in airports because I have a heart device implanted. And, yes, I think maybe people stare at me when I say I need help. I think what I go through is fractional in contrast with your challenges, but I think I can relate a little. And wish society would be more generally helpful or that we wear badges, as you say.
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It’s all trauma to me. Having to speak up and advocate for ourselves can be really hard. Appreciate you reading and commenting.
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I wish more people would understand because my daughter is also immuno-comprised with her rare diseases as well as adrenal cancer, we wear masks, my daughter has been admitted to the hospital four times a totally of over fifty days this year and yes I almost lost her. I only wish there would be a way that others could walk in your shoes or hers then they can understand what you go through. We do live in an Ableism society, keep fighting Abigail we need more people like you and my daughter to speak out.
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Masks are a whole other issue and you are so right, it would help if people would ask questions and get information versus saying hurtful things.
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I so agree with you Abigail I will never understand why people cannot show some compassion and just be kind, it could be them someday
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So very true!! 🙂
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Totally agree on improving accommodations for travelers. I’d add, though, that the rude and the ignorant are unlikely to change, and deserve no apologies or embarrassment while you do what you need! And columns like this will help those who just need to think twice about their reactions.
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Appreciate your support and I agree with you about those people who are unlikely to learn or change. Raising awareness and talking about these things will hopefully capture those people who need to learn but are willing to change.
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Thank you for sharing this. Sadly, ableism is also present among fellow MBC patients. Even we sometimes fail to see how some of us struggle behind “looking good”. I cannot help but feel hurt when someone says, e.g. while you quitted your career, I work at this wonderful dream job.
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I hear you and I’ve experienced similar reactions. It’s hard not to feel that pain when people say things that are just so insensitive. I try to remind myself that the idiotic things people say are about them, not me. I know that I’m doing my best to manage all the things that MBC brings and you are too. These losses are not easy to carry anyway and added angst from other people isn’t helpful.
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NOW THIS I CAN RELATE TO! In terms of my wife, who has to transfer in a wheelchair—and my Mom, who spent times in the hospital for chemo often helping her roommates ’cause no one else would. Maybe you should make up those signs!
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Don’t tempt me, I’m liable to do it!! lol
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Resist while you can! 😀
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At this point you need cards or small poster boards to make signs. I’m a woman living with MBC. I don’t like to put the disease first as if it’s a pronoun and adjective to best describe me. I don’t want people to judge either, whether in a parking lot, airport, the mall, or anywhere really. I feel like Dr. Seuss in “Green Eggs and Ham.” I do not like it on a plane, in a train…you get it. Judgment hurts, whether it’s a dirty look, staring, a passing comment, or anything in that arena. MBC hurts too. We cannot fit judgments on our plate with chronic pain, detached knee caps, no balance, and so much more hanging over our heads. Don’t be complacent and forget possible death after we have lived through numerous, poisonous treatments. You are heard Abigail!
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Truth, my friend. ❤️
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