KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Most of the first part of this diary was published in April 2010 under the title "Myths of the Disabled."
Much has transpired since that time, including a diagnosis with a third cancer (CLL), constant neuropathic pain and the 8th anticonvulsant drug which seems, finally, to have stopped the seizures.
My life, however, has never been more interesting and full of joy. Presented for your pleasure over the mating ampersands...
When I was at university my statistics professor defined (tongue in cheek) a mathematical average as "the one point in a distribution of large numbers that nobody is actually on". I challenge you to show me a family with 2.3 TV’s, 4.5 autos, 1.7 children and 1.9 bathrooms.
Put another way: Nobody is "normal", nobody is "average," everybody has at least one deviation from the norm, even if it’s just a weird looking little toe nail. Seems like a good place to talk about "disabilities" or "deviations from the norm." Perhaps an understanding of my journey might be enlightening.
I was born in 1944. In 1950, left-handers were disabled. As I entered school, teachers in Australia were still "correcting" left-handers to write with their right hand. (In fact, if you don’t already know, the word "sinister" is Latin for "left" and "dexter" as in "dexterity" is Latin for "right".) Would anybody regard left-handedness as a disability these days? Is an Australian accent a disability in America?
I was seriously knock-kneed as a child. Slept with aluminum splints on my legs from age 3 to age 9. Mocked at school. The doctor suggested that I learn tap dancing. I was not very happy in my Fred Astaire top hat and tails and my sequined sailor suit. But in the end I learned to perform in front of others (actually won a few contests), my legs straightened out and, as a young man, found that girls liked guys who knew how to dance!
In the 70’s I lived in Hong Kong and traveled throughout South East Asia where many societies revere their "divine others" from India to Indonesia to China to Korea where many folk tales are based around heroes we would consider either physically or mentally disabled.
While in Hong Kong I was a member of the Foreign Correspondent’s Club where I became friends with an Italian journalist, we’ll call him Bruno. After several rounds, usually of vodka, Bruno was fond of tearing into "those Americans" as he called them. One of his chief complaints: "America is the only country in the world where living longer is more important than living better." Now I understand his point. Not that this country hasn’t made great medical advances, but that we have used those advances to improve the quantity of life at the expense of the quality of our lives. I’m sure this is an arguable point but I tend to agree in general. And that was over 30 years ago.
In the 80’s, I produced business videos and covered the Paralyzed Veteran’s Games in Ann Arbor where about 4,000 wheelchair athletes from the Armed Services competed for over a week in track and field and team sports. Wheelchair basketball defined, for me, the term "full contact sport" that week, and still does.
Little did I know then what the future held.
Today, my so called disabilities, are:
- left arm amputated above the elbow
- right side motion restricted by stroke
- speech and typing slow and difficult through combination of stroke and chemo induced seizures
- pacemaker implanted 4 years ago after cardiac arrest in the middle of cancer surgery on my liver
- diagnosed with neural sheath cancer almost 8 years ago which causes constant skin pain akin to "pins and needles" all the time
- diagnosed with tongue cancer in November 2008 which still causes mouth numbness and lack of saliva due to radiation zapped glands
- diagnosed with chronic lymphocytic leukemia (CLL) late 2010, while in remission, I still have slow recovery from even the smallest cut or cough
- 8 years of allergic reactions to seizure meds have caused 8 changes in drug regimen.
- subdural hematoma late 2009 caused 10 day hospitalization, still not fully
recovered.
- constant neuropathic pain will imitate heart attack, arthritis, even caused EMT techs to use the defibrillator on my chest once.
- a check of my pacer early in 2011 showed 62 VTAC episodes in 90 days. That means my heart rate was over 160 beats per minute for 5 seconds or longer. That's a bunch of mini heart attacks, the longest lasted for almost 5 minutes, most around 20 seconds until the pacer kicked in and slowed me down when the rate hits 200 beats or more.
- to cap all this, my pacer is installed with a faulty wire and the device itself could fire for no reason at any time. Removal of the wire is more dangerous than leaving it in place, so I have an alarm (not unlike a regular alarm clock) in my chest!
- really bad sense of humour (correct spelling, hah!)
When I was first diagnosed with cancer, I was told to go home, get my affairs in order and not to expect to see the end of 2004.
Three months after my arm was amputated, my wife left, accusing me of abusing her. I was to find out later that this is not unusual for the other party to deal with the problem by walking away. I wish her well and can only imagine the demons she has to deal with.
Unfortunately, the loser here was my, at the time, 8 year old son, who has had to grow up very fast in the past 8 years. I see him every weekend. He is now 16. He is the shining light of my life. His older siblings, a half-brother in L. A. and a half-sister in N.Y. visit as often as possible and all three are supportive in every way. I could not ask for better kids.
James is now a Junior, with a GPA of 4.0 He is set on going to UCSB, a beautiful college on the California Coast. And his older brother Ian called last weekend to say he and his wonderful (and gorgeous) girlfriend Natalie are now engaged, so Dad's pretty happy these days!
At the beginning of 2011, I started to paint again. While my hand isn't steady enough to produce the fine detailed work of the past, I do many abstract pieces. My greatest joy is to paint the music I am listening to! Paint everywhere, on the paper, canvas, easel, floor, me, anyone who happens to drop by!
Notice that I'm gradually fading into the background ;-)
And I "paint out the pain." Wonderful therapy, anyone of you who live with pain, consider this: Don't worry about talent, don't be concerned about technique, you do not need lessons, simply grab a brush, buy some cheap watercolors and a large pad of paper and PAINT, PAINT, PAINT through the pain. End of lecture!!
I also write poetry, lots of poetry.
Check out my blog at
http://ulookarmless.wordpress.com/ where you will find my poetry linked to my art.
I started a poetry group inside Daily Kos every Monday night called Indigo Kalliope. We are just a year old, we now have 30 contributing poets, sometimes serious, mostly fun, with the aim of articulating the positions of the left. Cassandracarolina (the queen of the limerick) and Asterkitty have been nothing short of incredible.
I have also become the leading man in a photo documentary about me! I vibrant, full of life photo journalism student from the great Brooks Institute has chosen to document my life as her finals project. She and her boyfriend are the kind of young people who make old curmudgeons like me feel confident that the nation will survive, will pull themselves out of the hole dug for them by the generation before.
Well, it is now 2012 , 30+ hospitalizations, 5 surgeries, 5 rounds of chemo, 4 heart attacks, several tia’s, 8 changes in seizure drugs, one 5 month round of radiation, regular visits to 9 specialists, monthly blood tests, CT every 2 months for last 8 years and I’m still here, at least most of me, anyway.
I’m acutely aware that my road has been easy compared to many of the others who contribute here. You all have my utmost admiration for your courage, your spirit and your will. You inspire me. Thank you.
If you missed them before, here are those myths about being disabled, they still happen, please add your own.
Caveat:
Everyone has different experiences in life. In no way am I saying that these misconceptions are universal or even held by most people. But when you are subject to them it can be extremely frustrating and even cause a small problem to become a major one.
Here is my list:
1. Talk loud
Why do they think I can’t hear just because I’m short an arm? It happens everywhere. I just yell back, it doesn’t do any good to explain.
2. He can’t hear you
So I’m lying there in a hospital bed and family and friends (bless their hearts) are discussing my future as though I’m a piece of furniture. Should he go to a convalescent home or should he get a live-in nurse or should he live with his daughter. Ah, guys, I’ll be OK at home. We should ask him tomorrow.
3. Sex, naah
Overheard at the local coffee shop. "Disabled people are not interested in sex, and if they are, they shouldn’t be" The local conservative know-all sounding off about Jason, a young Down syndrome kid who comes in every Tuesday to sweep up and collect $10 from the owner.
4. Would you like that? Would you?
How many servers have asked me "Would you like some extra cream?" "Sugar?" Maybe it’s me, but I really don’t need the extra attention at such an inappropriate time.
5. Unasked for Advice from Intrusive Amateurs
Especially since few of them have qualifications of any kind. These well meaning folk have no qualms in offering advice to those of us with Cancer (you should go to Mexico) , Learning Disabilities (Pray. Pray to the lord), Amputees (Have you tried ....list of appliances too long to enumerate) or any other condition that requires practical, affordable, on the ground solutions. It is difficult to explain to them that this not an academic exercise, that the problem is real and immediate and that I would love to keep talking but I need to leave now and get on with something important. Many of us have had to deal with this in the occasional comment in the pages of dKos.
6. Invisibility
Every day for the past 6 years I have written a poem.
A solid object can easily
Be made to disappear
By anyone who understands
That visibility has two parts
The existence of solid matter
And the observation of events
Schroedinger’s cat proves
Not the quantum theory of physics
Rather that mundane fact
Of everyday existence
If no one sees you
You are not there
7. You Look So Normal
(Special thanks to It Really Is That Important)
If I can’t see it, it can’t be true. Therefore, there must be a hidden agenda here. Maybe someone’s looking for sympathy! Maybe looking for a handout.
This cynical and unrealistic attitude is a throwback to earlier times when the world was only for the so called "normal" and the "weak" were cast aside. Until the middle of the 20th Century, "Only the Strong Survive" was meant quite literally .
8. No physical activity
The disabled are not interested in activity. Let’s go to the beach. Are you sure it’s OK? Let’s go for a hike. Will you be OK with your cane? Don’t exert yourself too much! We need to leave early so you can get to bed. Crap!
9. Ain’t That Cute?
The "Awww?" response. Other diarists have pointed this reaction out before. I don’t want pity. I don’t want sympathy. I’ll be happy to tell you what happened in one or two simple sentences so we can both get on with our lives. Or not.
10. "Don’t bother they don’t understand you." Of course they do!
On the local bus I have become friendly with several quadriplegics and their care givers. Smart, funny, sometimes wicked and, through their screens, speech boxes and boards, very, I mean, very communicative.
11. Docs who don’t listen
There’s a kind of health care worker who just decides what to do before you open your mouth. Sometimes they are just tired. Sometimes they have the "God syndrome". I have actually had a doctor friend tell me over a drink, "I told my nurses today, of course I’m always right, I went to God school." A joke of course, but with a kernel of truth, perhaps?
When you have just been through 72 hours or more of pain or inability to communicate it does not help to be told "It’s just a cold, it will go away." An instructive half of a conversation after I was released with an infection made worse by a residents misdiagnosis:
In my oncologist’s exam room:
Oncologist: Mr. C, you’ve been in Hospital? How come they didn’t tell me? One moment!
(He takes out his cell phone while I am in the room) "Hi. I’m here with Mr. C. I understand he was on the third floor last week for some time. Why did nobody let me know? Didn’t anyone read his chart? (Listens for a while) You are supposed to call me whenever he is admitted, (......) Who was treating him that week? (.......) Does he expect to graduate? (Click)
I have a great doctor.
12. Speak slowly
Why does everybody speak so slowly? As if it takes more time to get the words in because I only have one arm.
13. Confusing not communicating with not understanding
Many of those I need to speak with in business situations confuse my sometimes jumbled way of speaking with lack of understanding. This is a hard one since I never really know whether I have satisfactorily explained my speech defect.
14. Confusing frustration for anger
Related to 13. above, my frustration is frequently assumed to be anger.
Example: In the ER after wheeled in by the EMT team on a gurney:
Admitting Doc: "Why are you here?"
Me: (barely able to speak) "My chest hurts"
Doc: "What kind of pain?"
Me: (gasping) "Bad"
Doc: "You have to be more specific"
Me: "I’m not a doctor."
Doc: "The patient should be his own best advocate."
Me: "Nor am I a lawyer, what’s wrong with you people, I can’t breathe!"
He goes away, comes back with an admissions bracelet and a lecture straight out of the "What To Say To Angry Patients" handbook.
15. Differing time frames
This is a big one. In the "regular time frame" world, everything is based on the normal working day, working week, working month, etc.
In my case, my time frame is based on "time between appointments" - "2 months between oncologist/blood test/x-ray/ct" - "3 months between cardiologist/echo/ekg" - "2 months between neurologist/eeg".
This is a problem for my older kids who have to take a lot of time out of their work and social lives to ferry me around. In a way, they suffer too. Never a word of complaint about missing work or weekends with friends.
Feel free to add, subtract, agree or disagree and generally have a good time with this.
I am certain there are some big ones left out of the list here and the researcher in me wants to know what’s on your list.
The 6 months allotted by the first doc I saw have turned into 90+ and I have passed the 2/3 of a century milestone, life has never been better and certainly never been more precious...
Peace
CJ