speech generating device, text-to-talk, AI synthesized voice; disabled, handicapped, impaired; HAVE cancer, HAD cancer, cancer free, remission, hibernation, survivor, patient, Stage I II III IV, adenoid cystic carcinoma, epithelial-myoepithelial carcinoma; laryngectomee, glossectomy...
WTF AM I ?
At 53 i am redefining elements of my identity.
1a: of, relating to, or consisting of words 1b: of, relating to, or involving words rather than meaning or substance
When i first got back home from treatment (i received treatment out of state for 6 months with my two adult daughters) and started being in 'the world', my husband would fumble announcing to anyone and everyone that i was nonverbal rambling about my cancer journey. I would silently cringe at the check out counter, fuck, i just need some dog food. (no offense honey...i know you were just trying to pave my way). I asked that he stop. People don't need to know my medical history and don't need a preface to my speaking through a device...they figure it out quick enough. The word nonverbal nagged at me. Should i describe myself as nonverbal? I associated nonverbal with cognitive difficulties. After a modicum of research i settled on non-speaking.
2: to make a written statement: his diaries … spoke … of his entrancement with death—Sy Kahn
3: to express feelings by other than verbal means: actions speak louder than words
We sat in the doctors office. My daughter Ela on one side, my wheelchair bound alzheimers mom across from us. Her expression vacillating, as it does now, between vacant and confused. I let Ela take the lead speaking to the doctor and chimed in here in there with my text-to-talk. The doctor focused his energy and eye contact on Ela. I suddenly saw the situation from his view. An intelligent young woman sitting with her alzheimer grandma and disabled mom. The line between my mom, fumbling with incorrect words, speaking non-sense, and myself...was fine. Brushed over quickly in ones mind, lumped together - the disabled, the others.
On my drive home NPR was on, chatter in the background. Words then grabbed me; 'Tucson event', 'writers', 'non-speaking', 'autistic'...
wait what? autistic? were people associating non-speaking with autism? No shade on autism, but my challenges are different.
I think and communicate in words. I SPEAK, albeit not orally, but non-speaking now felt like a misnomer.
I set off again into Merriam-Websters to find more accurate description of how i vocalize.
vocalize verb 1: to give voice to : 2: to make voiced rather than voiceless :
: something resulting from synthesis rather than occurring naturally
1: the composition or combination of parts or elements so as to form a whole
My voice. I was a shy child and self conscious of my voice. I had a bit of a nasal voice and worked to try and overcome that. I could NEVER carry a tune. Yet when i found out i was losing my voice i suddenly felt an affection for my own voice. I scrambled and found the technology to record my voice so that i could have a synthesized version of ME. I am very thankful that i had that opportunity. I found a pretty decent version with SpeakUnique. Yet....the day i heard my sythesized Smorph voice (this is a company i am fortunate to be working with as they develop more advanced technology for synthetic vocalization), i literally BURST into tears. I didn't realize the full effect of not having my voice, not sounding human. It was an emotion so foreign to me. It gave me back a part of myself. I am so excited about the future of Smorph because they are working to be able to allow us to have expression (happy, sad, mad) in vocalization as well! I've already had several arguments with my dear family where they 'infer' my tone (i dont have a tone!) incorrectly. I so look forward to the day when one of my daughters tells me some fabulous news and i can respond with JOY in my voice, not just in my words....yeah, that will be a great day.
I think that nuance of speech is one of my greatest challenges. When i have time to write things out i can capture my 'voice' more. However in everyday rapid fire conversation it can be more difficult to have nuanced and detailed conversation. Talking isnt just our words, its our intonation. My dogs certainly have taught me that. I mean they dont respond at all to my synthesized voice. It is nothing to them because there is no inflection or feeling for them to derive. We like to think that as humans we are more than animals, but i think in so many ways people are missing that from my communication as well.
"A DISABILITY refers to a reduction of function or the absence of a particular body part or organ."
"A HANDICAP is viewed as a disadvantage resulting from a disability that limits or prevents fulfillment."
Physical impairment pertains to a loss of an anatomical structure; for the benefit of this exercise, let’s say the person lost a leg due to an accident. He can wear prosthetics as a replacement of the lost leg.
Physical disability now refers to the inability to walk. To be able to navigate the surroundings, the person can use a wheelchair.
Physical handicap now means that this person faces disadvantages that prevent him or her to perform a normal role in life, such as not being able to climb stairs anymore. Or run a marathon. Or be a basketball player. Here is where the environment plays a part. By providing wheelchair access or lift for the person with physical disability, he or she will have no problem going up to the next floors of a building. By providing multi-sport events for athletes with physical disabilities, such as Paralympics, the person will still able to participate in sports.
None of us ever think they will become physically impaired, right? There is frustration in my new limitations. There is learning how to adapt to my disability, how to use new tools and work arounds. There is seeing myself through the reflection in others eyes and actions. I certainly consciously still want to avoid seeing some people from my 'past life' simply because i dont want to experience what i imagine will be their pity. Um, its not like i mind pity from people i love because guess what? It DOES suck that this happened to me. I truly dread the thought of running into people that perhaps didn't particularly like me (i know right? hard to believe anyone would find my sarcastic, forthright self as anything less than loveable!) and imagining them thinking 'that bitch deserved it'. In terms of random people, i have to say, i'm rather shocked how they are NICER most of the time. I'm okay with it, because a nicer kinder world is not to be scoffed at.
Do i identify as impaired, disable, handicap? YES I DO. I'm not offended by any of those terms. I am NOT the same. I'm not less, but i'm not the same.
At a year and 7 months into not having speech, i am starting to forget what it was to speak freely. I think we are all very much in our own minds, that's where we live. Do i live here more than before? It simply takes more effort to make quips or join as freely in conversations. Was i saying anything relevant before? Probably not. Probably not.
Is it a disability to not be able to smack talk while you are playing pickleball (yes, i finally gave in and gave it a try!)? Is it a disability to have to stop everything i'm doing in order to respond to someone? It's a pain in the ass, i will say that much.
Stage I: The cancer is localized to a small area and hasn't spread to lymph nodes or other tissues. Stage II: The cancer has grown, but it hasn't spread.
Stage III: The cancer has grown larger and has possibly spread to lymph nodes or other tissues. Stage IV: The cancer has spread to other organs or areas of your body.
What stage?, seems to be a question asked about cancer. I probably asked it prior to having cancer. I'm not sure i even knew what the stages meant. I asked my own team, 'what stage is my cancer?'. They said they don't even do staging because its basically irrelevant to my cancer. Huh. If i'm looking at the definitions above i would say Stage II. Oh gosh that's not so bad then. thing is, it was big enough, and in a location where i wear the scars in a very tangible life altering way. Thing is, ACC is rare and none of the statistics really matter because the sample population is relatively small. (I will take that as a win, because the stats you do see are not comforting). Thing is, ACC always comes back... if you don't die of something else first.
I know people are seeking to understand when asking that, but in so many ways it just isn't applicable to the affect the cancer really has on someones life.
adenoid cystic carcinoma
Adenoid cystic carcinoma (ACC) is a rare malignancy arising from the secretory glands, most commonly seen involving the salivary glands. It accounts for approximately 1% of all malignancies of the head and neck region. However, it is the most common tumor of the minor salivary glands and the second most common tumor of the major salivary glands. Overall, it accounts for 10% of all salivary gland tumors. The tumor is typically slow-growing compared to other carcinomas and has a tendency for perineural invasion as well as hematogenous spread to distant organs and is most commonly seen in the elderly. Due to its rarity, limited data is available regarding the predisposing risk factors and the management of patients with advanced disease.
ACCs generally carry a favorable prognosis with a 5-year survival rate of around 75%, but the 10-year survival rate drops acutely to 20%. (how the fuck is that favorable?)
I find myself lulled into the complacency of everyday life. I really need to read that last bit more frequently. Oh that seems glum and you can't focus on DEATH. I'm not saying i need to go around every day thinking, you only have 8 more years if you are lucky bitch. Yet, in some respect i do. I want more than that, i am aiming for more than that, of course!
It is so easy to waste time on bullshit. It is so easy for me to get sucked back into a life of obligation. I DO have to deal with the reality that my lifespan may be limited because i need to suck every bit of joy out of every single day. I certainly have mocked the whole millennial 'living for today' thing. I'm not saying that people don't need to work and do the dishes and take out the trash (literally and metaphorically). However, i think in my own life i put to much priority on the 'have to', 'should do'.
So yes, i do need to dwell in reality so that i continue to cast away 'guilt life' and seize joy-life!
laryngectomee noun lar·yn·gec·to·mee
: a person who has undergone laryngectomy
Sure, i knew what they were before this. They were craggly old men, kind of hunched over, maybe in a wheelchair, probably unkempt, who had smoked or done chew for like 50 years. Of COURSE they lost their Larynx.
They were NOT 52 year old professional women who had proudly never puffed ANYTHING in her entire life. They were not 20 something year old young women who just had babies. They were not 30 something year women bodybuilders.
Did those craggly old men deserve cancer. Well NOBODY fucking deserves cancer. Did they mess with their chances, yes. Did I? Nope, an
d yet we here all together at the end of the day. Preconceptions once again fail us.
The Lary world has united me with people across the world. People from walks of life i would never have encountered. I am grateful for my Lary life connections.
So hell yes i'm a Lary!
1: she/he/they who hath no tongue
2: a badass motherfucker who is taking on the world without the
ability to eat normally, without the ability to lick their lips, without the
ability to shape/make sound, but with the will to live and be heard.
4: commonly referred to as 'Glossy'