Disability Etiquette: It's for "Normals"!

This post should be read by everyone without a disability! Those WITH a disability will chuckle as they read. Or cry. That leaves EVERYONE!

I use the transport chair when there's a lot of ground to cover, like Walmart or the grocery store. It's also the only chair my personal assistants could lift up. The only bad part: the transport chair is un-wheelable since its tiny wheels don't allow me to propel myself forward like a regular wheelchair.

Otherwise, I walk, getting as much exercise as possible, with my personal assistant trailing behind me with the transport chair in case fatigue sets in and I can't walk anymore. (I don't like caregiver, caretaker--which, by the way, is for a parcel of land, not a person, companion, or aide so I single-handedly upgraded the job to personal assistant, or PA).

There is an interesting phenomenon that I noticed for almost the past 7 years since my hemorrhagic stroke. I feel invisible while sitting in the chair while the people to whom I'm speaking always direct the conversation to my PA, like I'm talking funny or I'm mentally incapable of understanding them. Sometimes I say, "Talk to me when you're talking to me," which works for some people and, if they still persist in having the conversation with my PA, I'll stand up from my chair and say that line a little louder. That always works.

My most recent event is when I went to the bank to get a certified check just 2 days ago. The assistant manager persisted in addressing my PA as if it's her account, and I stood up and repeated that talk-to-me-when-you're-talking-to-me spiel.

"Yes, ma'm, I think you talk good and I completely understand you."

It's "talk well," not "talk good," but I let that one slide.

After that exchange, she addressed me, not my PA. See? Always works.

I was talking to my friend, Benadette, who is one of the "normals" and who used to work in a stroke rehab facility. We got on to talking about "disability etiquette" somehow, an expression I never heard before, and she suggested a lady in the hospital who was an expert on that subject, but I decided to do some research of my own. That term was right up my alley, given that event in the bank and so much more, and there were articles galore.

Here is what I found. They're divided into do's and don'ts and they're for "normals,"--aides, caregivers, and all of the health professionals--all of the people we "disabled" people have to interact with on a daily basis. My top 10 favorites are:

DO: Speak directly to people with disabilities, not to the people who may be accompanying them. (Did you get that, bank manager, grocery store clerk, doctor's office receptionist?)

DO: Be patient rather than try to fill in the gaps or speak for the disabled person.
(Why the rush? Give us time!)

DO: Think of a wheelchair or other mobility assistance as a part of the user's personal space.
(Why lean on it, push it without asking, put your feet upon it, all of which happened to me?)

DO: Avoid patronizing people with disabilities by speaking extra slowly or patting them on the head, hand, or shoulder.
(One man even used baby talk with me, and I don't think that was a come on!)

DO: Pull up a chair or bend down to speak to someone in a wheelchair to make us both on the same level.
(I always feel, when somebody towers over me, diminished!)

DON'T: Describe people with disabilities as "superheroes," "inspiring," "courageous."
(People with disabilities just want to fit in. You get it?)

DON'T: Ask long questions with several parts. Many disabled people are, or have become, a one-tasker.
(Don't take a chance. Disabled people, even "normals," would rather you asked the question without several parts, like focusing on the second part and forgetting the first part. I have to laugh at our debates between the Dems and the 'Pubs. I used to teach Public Speaking and can just tell when the candidates forget one of the parts! A look of despair comes over their faces!)

DON'T: Pet a service animal.
(Just don't. Ask first. The service animal is hard at work!)

DON'T: Describe people with disabilities as "handicapped," "disabled," "victim," "crippled," or "damaged." Use "people with disabilities" instead.
(People are not defined as being less than perfect. By the way, nobody is perfect).

DON'T: Stare. We may be funny to watch, but still....
(Enough said!)

If people used their common sense, just their God-given smarts, they'd know most of these points. If that's true, and I really think it is, then why do they act stupid when it comes to "people with disabilities"?

As for me, (and I hope you, too), I am not defined by my disabled state. I just want to be one of the bunch, who forgets the key to my apartment a millisecond after locking the door, who becomes ditsy when my favorite group, Journey, comes on the radio, and who gets all mushy when someone wishes me a Happy Valentine's Day. Just one of the guys. Don't know why it's not possible.

Aspirin Desensitivity: I'm One of the 2%

It all started with Motrin.

About 30 years ago, I took a Motrin pill for back pain. About a minute later, my throat almost closed up, I started wheezing, and I had labored breathing, finding out later I was doomed to go into anaphylactic shock. But I didn't. The kids, then10 and 5, were downstairs playing, but I couldn't even call to them for help. I just waited for death, but luckily, the trauma passed a half hour later. I was 37 then. Lucky 37.

I hadn't taken aspirin since I was a kid, and Tylenol was recommended by my doctor anyway. Aspirin is an NSAID (Nonsteroidal anti-inflammatory drugs) and Motrin, too, over-the-counter medications that can be used to relieve mild aches and pains, and reduce inflammation. So apparently, I was allergic to NSAIDS. No big deal--until now.

I found out about 10 years later after that trauma that I had Samter's Triad, a condition that consists of only 3 things in conjunction: asthma, NSAID allergy, or commonly known as aspirin allergy, and nasal polyps. Samter's Triad was confirmed again about a year ago when I went to Dr.  Lee, an ENT (ear, nose, and throat) expert for nasal polyp removal.

She said I am under control with my asthma by taking Advair every day, but there is a doctor who can most likely rid me of aspirin allergy in order for the nasal polyps not to grow back. I thought, I had the polyps removed 3 times in Philadelphia, but I wouldn't have to do it again if I was desensitized to aspirin. Huh!

But, and I'm extrapolating, aspirin, too, is a blood thinner and I'm already on Warfarin , a blood thinner as well, and there is a risk for bleeding. That was about the 100th time I heard that--risk for bleeding--because I had a hemorrhagic stroke and that means bleeding in the brain.

I went to see Dr. Petrov as she suggested, an immunologist with smarts.

The overwhelming majority are helped by aspirin desensitivity, he said. I seen to recall only 2% are not desensitized. With the odds in my favor, I had an appointment for December 7 when I would go into the hospital for 4 days with a heart monitor and be observed. The heart monitor would be used if I stopped breathing, for example, monitored constantly by the nurses on the heart floor.

I'll give you the timeline because I kept a diary of the events and here it is. Stop here if you are faint of heart.

December 7:  Went into hospital in the evening to desensitize me from aspirin allergy. Desensitization would start early the next morning.

December 8:  Took 30 mg at 8am progressing to a baby aspirin, or 81 mg, throughout the day. Went through a rough spot as I was going through desensitivity for 12 hrs.

December 9: Called the nurse at 2am and said I was leaving in the morning. Desensitivity too much. She said desensitivity is rough but I had to hold strong. I repeated the baby aspirin at 8am. Progressed more during the day to an adult aspirin. Wheezing was off and on, but the energy level was at its lowest. Had to sit on a recliner in the hall before going back to my room.

December 10: Released from hospital with, presumably, no aspirin allergy any longer. Told to take 2 baby aspirin in the morning and again at night. Not convinced. Time will tell. Dr. Petrov's associate said that if I stop the aspirin for more than 24 hours, I would have to repeat the hospital procedure all over again.

December 11: I had more-than-usual fatigue. Coughing and wheezing.

December 12-13: I was occasionally breathless and minorly coughing, still off and on wheezing.

December 14-26: I thought I had contracted the flu somehow.

December 27-January 6: Still had lingering symptoms, but I thought I had contracted a cold.

January 7-14:  Left for Portland for a family reunion and started to wheeze there. Coughing and extremely fatigued.

January 15: Left for home and thought I had contracted another cold.

January 16-20: Started getting more breathless, increased wheezing and coughing, fatigue continued.

January 21: Went to give talk to Stroke Support Group and had nurse co-chair deliver my speech. After the event, went to ER on advice of nurse where they found nothing through blood tests, and wasn't admitted. Told them about the aspirin desensitivity, but no knowledge surfaced.

January 22-26: Still panting, coughing and wheezing intensified, and got the feeling it was the aspirin. "I'm poisoning myself by still taking aspirin," said to no one in particular, but continued with the aspirin. 

January 27: I finally stopped the aspirin myself in the morning. Went to a different ER where the doctor who gave me aspirin initially practices--same symptoms but increased intensity. They gave me a chest xray, chest scan, and blood tests; admitted for observation.

January 28-29:  Status changed to in-patient where full-blown wheezing, intense coughing, panting like a canine, and lethargic prevailed. Doctor confirmed I was one of 2% the aspirin desensitivity doesn't work for.

January 30: I was released with new medications--narcotic cough medicine, Predisone to reduce the inflammation, and Mucinex to cough up the congestion. Today, I see an improvement. Little wheezing, mild coughing with once-a-day flare ups, no breathlessness, no fatigue. 

January 31-today: No wheezing, just a rattle in the chest from congestion, still coughing at random times, nothing else. Energy restored!

I'm going to see the lung expert who will once again assure me it's not pneumonia (I already know that) and Dr. Lee to convince her that the worse that happens is I'll have to repeat the nasal polyps surgery some day, now that the aspirin and other NSAIDS allergies are back to stay--forever, I imagine.

I don't hold Dr. Petrov responsible at all for the unsettling events that took place in the last 2 months. He said, as I recall, 98% would be desensitized. The odds of aspirin desensitization were in my favor. It was a gamble and I lost. But at least I tried. Trying means not giving up. And trying is the only thing that matters.

Status Time: Almost Seven Years Later from the Stroke

It seems like a few years ago that I had the stroke. But it's almost seven years ago. April 8, 2009, is the date that is burned into my consciousness. The date follows me around, like the devil that it represents. Playing piano by ear, knitting scarves, clapping when required, all gone. People say, "Be positive," but sometimes, I just can't. A stroke doesn't make me stronger. It just reminds me how fragile the human body is. Some people say "re-birthday" when they celebrate the date on which the stroke happened. "Re-birthday?" Give me a break.

That being said, looking back, I have accomplished some things that make me know that I'm progressing. There is my book, "The Tales of a Stroke Patient," published in 2012, that documents all the time before, during, and after the stroke. I liked writing the book. For me, it was a catharsis, a chance to scream about awful CNAs, nurses and doctors who pretended not to hear me, all the time keeping the names of the rehab facility and the nursing home out of the book. (It was Bacharach Institute for Rehabilitation and Absecon Manor Nursing Home, both in Southern New Jersey. I don't give a shit now).

I started a blog called the same as the book, "The Tales of a Stroke Patient," in 2010. I still write it, as long as there are people to read it. (There are 15 million strokes a year worldwide so I imagine I won't run out of readers). Currently, I have almost 112,000 people reading my blog, though some are faithful fans who read it several times. My dashboard tells me I'm read in 6 out of 7 continents, Antarctica the holdout. I don't have anything against the Antarcticans. They are probably busy with global warming.

This month, the University of Pittsburgh Medical Center and I are starting two new stroke support groups (well, one's a group that needs to be resurrected and the other is new), and I am the leader in both. My mission is to help stroke survivors get an improved sense of self, to achieve for them what I couldn't achieve for myself back in the day: dignity, self-esteem, and empowerment. You'll be amazed at the speakers we'll book.

Nobody understands a stroke survivor aside from stroke survivors.
People write to me at least once a month saying, "My [husband, wife, friend] had a stroke and it's so difficult to talk to my [husband, wife, friend] because of the anger and frustration coming out."
"Of course," I say. "How would you like your life turned around in just a millisecond?"
Some people get it. Most don't, and that applies to health care providers and caregivers, too.

I fell, sometimes hard, breaking different parts of my body, I'm misunderstood though that's getting less and less, I drop things that need two hands to hold, but through it all, I'm still here. Why? It's like I told you. I have a mission, and it won't be completed any time soon. I'm moving to Portland, OR, soon, and the mission goes with me. Always the mission....