I’ve heard stories about the realities of the discovery, but never really internalized them because the journey was never that personal. It was always a distant family member of a friend. The degree of severity was never actually driven home until I became a member of the club.
Now, I have multiple myeloma.
I thought long and hard for about a week about I would, and how to, share the news. My wife and I had to explain it to our teenage kids. We had to explain the realities of my upcoming chemotherapy. We had to explain that “Dad may not be his usual self” for a while. I smiled all through the discussion. After doing so, and studying the varying communities where I chat and play, it occurred to me that a cancer diagnosis is not a widely shared struggle. Most do so surrounded only by the closest of family and friends.
Honestly, that’s just not me.
In a previous life, I was a master karate instructor. I only retired back in 2012. At my prime, I used to tell my students that if I can inspire just one person to keep training and become a black belt, then I’ll feel accomplished at my work. While I left the practice to focus on my family, a lot of black belts now claim me as an early influence.
So, I took the same approach with this cancer diagnosis and started posting about it on Twitter and Facebook. If, in my journey, I can inspire just one person to fight back, then I’ll have contributed. Yes, I’m going to make this personal. Yes, I’m going to push past this and live a long life. Yes, I’m going to take you along for the ride. If you don’t want the details, don’t read my posts, unfollow me on social media; but SOMETHING I say just may light a fire under someone and convince them to not give up.
I used to say that the hardest thing I’ve ever done in my life was running a triathlon. Then it was taking my Master’s test in karate. Then it was maintaining a good marriage. Then it was raising two healthy kids.
Today, I realized my whole life has prepared me for the challenge of cancer. Y’all come along for the ride.
While we at The Band work tirelessly to bring you expert resource pages, sometimes the best advice is from someone who has been where you’re standing. What follows is a mixture between a resource page and a post.
I introduce to you, The Band, a Demo Tape.
Take what you need and leave the rest.
I have a quirky sense of humor, coupled with a southern gal’s disposition, so brace yourselves for impact. This will be a bit of a rant, but it’s been building up for awhile, and sometimes ya need a rant to get the point across.
When I moved to West Virginia, I had no idea how downright painful it would be to deal with the uneducated public when they encounter me, my service dogs, and (possibly) one of my seizures while I’m out trying to live my life. It’s as though the burden of WV service dog education has fallen squarely upon my shoulders.
And that? SUCKS!
On behalf of all people with service dogs in WV or elsewhere, listen up:
No, not EVERY service dog is a seeing-eye dog. I am NOT blind.
No, I am NOT training my service dog for another person or a blind person.
No, it is NOT okay for you to talk/whistle/call to my service dog for ANY reason. You are distracting him from his job, and my safety depends upon him doing his job to the very best of his ability. You wouldn’t walk up to and pet, whistle, praise, talk to, or feed someone’s wheelchair, cane, or walker. Don’t do it to my dog.
No, you may NOT pet my service dog. He is WORKING at keeping me safe in what can be a very dangerous environment for me – please respect my needs. My one dog will avoid people who try to walk up and touch him by moving to the other side of me, yet people STILL try to touch him past that. The dog will sigh loudly if someone tries to pet him, yet people find that adorable. Pay attention to the dog’s body cues!
Yes, he is my service dog! I am not just walking around with a random person’s service dog for kicks. It isn’t easy to have such a requirement.
Yes, I NEED a service dog. Even though you cannot see what’s wrong with me, I am disabled. No, my health issues that require a service dog are not something I have ANY desire to speak about in public with a perfect stranger.
Yes, it IS rude to start with “But you don’t look sick” when you ask me why I need service dogs. In fact, I may haul off and punch you if you do so. The blatant disregard and disrespect which runs rampant here is getting old. I’m tired of being judged by my outside ALL of the time. So just stop it. I don’t judge you for wearing your pajamas to the store.
Yes, it IS extremely BAD for your kid to walk up to ANY dog they do not know, let alone tackle a service dog. It’s not the dog’s fault if it bites your kid when it’s your kid who ran up to the dog. The dog is defending itself and its handler. TEACH your children – they are your responsibility. I keep my responsibility on a leash.
Do NOT smack my dog or jerk my dog from me to shove something into my mouth, with the intention of preventing me from swallowing my tongue. STOP BEING IGNORANT. I will NOT swallow my tongue – it’s an old wives’ tale, a person cannot swallow their tongue.
My service dogs are my lifeline; they know more about me and my seizure disorder than you EVER will. Let them do their jobs. Touch my dogs or my person and you risk getting the arse-whoopin’ of your life when I come to. Just ask the well-meaning idiot who broke one of my back teeth with a spoon (a tooth that I still don’t have the money to repair). She slapped my dog and slung him off me, not realizing that I could have choked to death on my own vomit. Not OKAY! I will never be a victim to a random person’s stupidity ever again. Someone should have stood up and stopped her – no one did. Well-meaning idiots are still dangerous idiots. Do NOT be a well-meaning idiot – educate yourself!
*breathes deeply*
Okay, allow me to begin again.
Hi, my name is Tearanny and I have two wonderful service dogs, Drachon and The Fatkid. Drachon is a 7-year-old German Shepherd that loves to swim and play ball at every opportunity. The Fatkid is a 15-year-old chocolate lab cross that loves tummy scratches and anything food related.
We all enjoy time outside together whenever my health and the weather allow. Both are extremely territorial of their yard and their Momma. They are very loving, loyal, and exceptionally well trained to take good care of my special needs.
My boys are both certified and registered Seizure Alert & Assistance Service Dogs. I have left temporal lobe epilepsy which generalizes. It is a brain disorder that results in seizures that cause me to lose consciousness and hurt myself in the process. When these seizures occur, my service dogs sense the chemical changes in my brain chemistry and warn me long before my body presents an aura – pretty amazing by anyone’s standards.
For those that do not know, an “aura” is a distinctive feeling or some other warning sign that a seizure is coming. My boys help me lie down, turn me onto my side, and lie on me to keep me on my side throughout the seizure activity. They can bring me my medication and my telephone upon request, or if either feel that it is necessary at any point.
My boys will lick my face to calm me as I begin to stir from my seizure activity – I’m in a postictal state, a “flight or fight” response immediately after a seizure, and then an extreme exhaustion sets in.
My dogs are a deep emotional support after seizure events. They help me keep my balance as I make my way to the bathroom and bed after seizures or on days when my balance is still affected by bad seizure events. They never judge me for being too sick to brush my teeth, cancelling plans, or failing to change into something fashionable the day after a seizure when I’m too sore to move. They love me unconditionally and I owe them to be worthy of such devotion – they are my shaggy blessings!!
So, if you see us out and about, or anyone else with a service dog, here is the skinny on how to act:
Service Dog Etiquette
Never pet, call, talk, feed, whistle to, or otherwise distract a service dog for ANY reason. To do so can potentially injure a handler and earn the dog a correction; even the most well trained dogs can be distracted. Be kind, considerate, and thoughtful – if you are sincerely a lover of animals, respect the dog’s job and his handler.
Ignore a service dog; it’s truly what the dogs PREFER. Remember, they are NOT pets; they are trained to do a very important job that they take EXTREMELY seriously. A person’s well being is completely reliant upon that dog’s work drive – respect that dog’s drive.
If you feel you must pet a service dog, ASK first. But don’t feel offended if the handler says “No.” Service dogs need to be released from Work Mode to interact with someone; this can be a SEVERE hazard to the health of the handler. The dog (or handler) might be having a bad day, or might be in a hurry. Ever tried to make it through the store when 20 people are asking to pet your service dog and all you want to do is get your groceries and get home because you feel awful? I have, and it is less fun each it happens.
Train children to never waltz up to a strange dog – ANY dog – without first asking permission. Teach them to follow your lead, and make sure your lead is worth following. Teach your kids about safety around dogs and then teach yourself about service dogs.
Speak to the person, not the assistance dog. Most handlers do not mind talking about service dogs and their dog specifically, if they have the time and you are respectful with your inquiry.
Never make assumptions about the individual’s intelligence, feelings or capabilities. Offers of help are appreciated, but ask first. Usually, the human/dog team can get the task done by themselves.
Don’t be afraid of the service dog. There is no need to be afraid of a service dog. They have been professionally trained to have excellent manners and skills. Always approach an assistance dog calmly and speak to their human partner.
If you happen to see me when I’m having a seizure and my dogs are with me, leave us alone. Let my boys do the job they were born and trained to do. I will ask that you keep the well-intentioned idiots away from my boys and me until the floppy-fish dance has concluded. When I come back around, I will call my folks or a friend to pick us up to take us home. Pretty simple, eh? No reason to hit my service dog and break my tooth!
Business Owners and Service Animals
Some customers and employees may be anxious or nervous about an assistance dog in a business establishment. While I reassure them that my service dog is thoroughly trained and has a legal right to be there under the ADA, it gets old repeating myself each time I enter a new establishment. Here are a few tips for business owners:
–Businesses may ask if an animal is a service animal OR ask what tasks it has been trained to perform; however, businesses cannot require special ID cards for the animal or ask about the person’s disability.
–People with disabilities who use service animals cannot be charged extra fees, isolated from other patrons or treated less favorably than other customers. People with assistance dogs deserve the same respect as any other customer. However, if a business such as a hotel normally charges guests for damage that they cause, a customer with a disability may be charged for damage caused by his or her service animal.
–A person with a disability cannot be asked to remove his or her service animal from the premises unless:
(1) the animal is out of control and its owner does not take effective action to control it (for example, a dog that barks repeatedly during a movie), or
(2) the animal poses a direct threat to the health or safety of others. In these cases, the business should give the person with a disability the option to obtain goods and services without having the animal on premises.
–Businesses that sell or prepare food must allow service animals in public areas even if state or local health codes prohibit animals on the premises.
–A business is not required to provide care or food for a service animal, or provide a special area for it to relieve itself.
–Allergies and fear of animals are not valid reasons for denying access or refusing service to people with service animals.
–Violators of the ADA can be required to pay money damages and penalties.
Some days, despite the blessings I have, I am reminded over and over and over again that I do not have the one thing in my life I thought I would have: a child.
Children.
It seems like everyone I know is expecting their first, their second child. And I try really hard to be happy for them. I try so hard to mouth the right things, because I am happy for them. But every one of those words of congratulations tears open the scars – I will never have a child. Not a child of my own. (And I do very much consider an adopted child to be my own, by the way.)
My wife is not just simply not ready, but also not…capable. I’m not talking physically, but emotionally. I’m already keeping our home together, taking over pretty much every responsibility.
I may be a bad person, but I can’t take care of all of our details, make sure she’s taking all of her medications, and be the sole caretaker of a child as well. Hell, I doubt we’d be able to qualify for adoption if I have to somehow bind everything together, and honestly, I don’t think that would be a good environment for a child anyway.
So. I’m left with a bitter choice that I can’t actually make: my wife, or my life-long dream of a child.
My ex-husband’s wife had a stroke yesterday. She’s a year younger than I am. Mid-thirties is too young for a stroke.
I’m angry for her. I know what is happening to her right now. She’s in the hospital, she’s scared. Scared isn’t the word – she’s terrified.
I know what he’s doing. He’s sauntering around acting like things aren’t a big deal. He’s showing up and being caustic and sarcastic. He’s making comments about how much it’s going to cost him and how much of a fuss she’s causing. He’s acting like he doesn’t mean it, but she’s hurting because she’s JUST HAD A STROKE AND HE’S MAKING JOKES ABOUT IT!
He took a stranger up to her room today. She was crying because she didn’t know him and it scared her. He didn’t ask the guy to leave, he just let him hang around. Then he went to smoke with the guy for forty-five minutes.
Then while I’m having a nice rant about this, my mother told me that I shouldn’t tell my boyfriend things that would cause him to dislike my ex-husband.
She turned around and said, “I remember that time you cried all weekend because he took off and left you to go visit his old friends in his hometown right after y’all got married and wouldn’t wait for you to get off work.”
I really wanted to say, “Right, and then there was the time I was in the hospital because an ovarian cyst had ruptured, and he wouldn’t come see me because he said I WAS FAKING MY OVARY EXPLODING!
Then there were the times he forced me to have sex with him because I lived in ‘his house.’ Oh, and the time I said I was depressed and felt like dying, and he said I should go ahead and get that over with because he had things to do.”
All I really said was, “You know, he has to know what happened to me or he’s never going to understand why I’m COMPLETELY PSYCHO sometimes.”
Now I’m hanging out, not telling my boyfriend any of these things because, apparently, I can’t use my mouth to tell him things – I get a mental block with words because I’ll cry.
I’m so ashamed of myself for putting up with it, too. Plus, how do you tell the person you love that the person they accidentally introduced you to nearly fifteen years ago did all these things to you? Yep, my boyfriend introduced me to my ex-husband.
And there’s the part where someone I know just had a stroke, and I’m feeling sorry for myself. Oh, I’m feeling bad for her too; I have enough guilt and pity for the both of us!
I’m just going to lay here for a while and determine what feeling to feel next.
Over 5% of Americans are living with Alzheimer’s Disease.
This is her story.
Alzheimer’s is one crazy bitch, just like my mom.
Don’t worry; I’m not an evil daughter, I just decided to take the more, shall we say, “optimistic” approach to my mom’s disease than some people would. Also, I have a very warped sense of humor, which has helped me get through quite a bit throughout my 40 years on this planet.
I’ve already been through my dad’s stroke in my 20’s, Mom’s stroke right after, followed by the death of my first husband when I was 27, my dad’s death when I was 28, my mom’s slow decline into Alzheimer’s Disease, and so much more.
Humor has been my savior and my go-to tool for as long as I can remember. So, please keep that in mind as you read what I’m sharing. Because believe me, my heart breaks into thousands of tiny shards of broken glass when I really allow myself to think of the shell of a person my mom has become.
I miss my mom terribly.
It pains me to talk to her now; our weekly phone calls have drifted into bi-weekly and crossed over into monthly conversations, simply and selfishly because it hurts me to hear her so confused. There is nothing more that I miss than being able to talk to her – really have a normal conversation with her – one that I know she was comprehending what I am saying to her.
Even when I was at war with her in my teen years, I’d take that over what I have with her now. I wish I could have those times back, but I can’t, so instead of being hurt and mortified by mom’s words and actions, I try to find humor instead. Although there are times I hang up the phone and just allow myself to cry for her, for me, for us.
I have decided to blog various stories about mom that have made me chuckle over the years. It’s okay to laugh, I do.
——–
I should have known Mom was drifting toward Alzheimer’s when we went out to eat one night. While the cashier was ringing up our check, mom grabbed a peppermint from the large bowl of candy on the counter. She must have really loved those peppermints because she grabbed another one and shoved it quickly into her mouth while the cashier handed me my change.
I unzipped my pocketbook and Mom unzipped hers. I put my wallet back in to my pocketbook; Mom dumped the whole bowl of candy into her pocketbook and walked out the door.
I was mortified! I asked the cashier “How much for candy?” She just looked at me, shocked, and said “Don’t worry about.“
———-
One day I was lounging around, soaking up the sun, half watching my children swim in our pool and half daydreaming. The phone rang, bringing me out of my semi-comatose state.
“Hello,” I mumbled into the mouthpiece.
“Ma’am,” a Southern gentleman drawled, “is your mom named OCB?”
“Yes, who’s this?” I asked, my suspicion aroused. Who the hell was this guy asking about my mom? How did he get my unlisted number?
**Side note: even in the depths of her Alzheimer’s, she’s never forgotten my home phone number.**
“I’m Clyde, from the Pottery Mart? Over here on Airline Lane? You know it?” he asked.
I could see the big red building clearly forming within my brain. It was located in the town where my mom lived, about fifteen minutes away. They had a large statue of a rearing horse on top of their sign and I often wondered how they had gotten it up there. “Yes, I know it. What’s going on? Is my mom alright?” My suspicion had now turned to concern.
“I reckon ma’am. We don’t want to call the police…”
Police! What the hell is this guy talking about?
“…but it seems your mom has gotten into someone’s car, and she won’t get out. The owner of the car has been real nice and all, but your mom insists it’s her car, but it clearly ain’t; her keys just won’t fit into the ignition. She told us to call you. Can you come down? She seems pretty scared and, well, pretty mad.”
I was dressed and out the door with the kids in record time. On the drive over, never once did it occur to me that my mom had Alzheimer’s. I figured she was merely having an ‘off day,’ which happened from time to time since her stroke several years prior.
I arrived to find my mom sitting in a white vehicle (hers was red), with a gentleman standing alongside and another gentleman sitting on the ground looking a wee bit pissed. I thanked both men profusely, apologized countless times, and sent several thankful prayers up to God that they didn’t call the police or the EMT’s. I was even thankful that we lived in the South at the time and not New York. I managed to talk my mom out of the man’s car (I don’t recall what I told her), and I drove her home. My friend drove her car, and that was the last time my mom ever drove her car, or any other vehicle, at least that I know of, anyway.
This event led me to take her to the doctor for a full work up and her first official diagnosis of Stage One Alzheimer Disease.
———-
Now that I’ve brought you full circle, this fun phone call I had with Mom the other day prompted me to write this novella in the first place:
After going round and round with Mom about my weather on the east coast versus her weather in the central United States, and having that same conversation several times, she asked how things were with my family. She always remembers my boys’ names, but has trouble remembering Peanut’s name because she came along further into Mom’s illness. We talked about the kids for a few minutes, then I shared with her that I bought myself a car.
Out of the blue, Mom remarked, “A car? It must be nice to have a car to drive wherever you want. I wouldn’t know since you took mine away. You know you did. I remember. It was red and I loved it and I shopped in it and I went to the VFW in it. I danced at the VFW on Saturday night. You took it away. Why did you take my car? I went to the craft store in it. I used to go…”
I could sense she was building up steam so I cut her off at the pass and said, “As a matter of fact, I do remember that car, Mom. I gave it to my brother. Aren’t you going to see him at lunch today? You should ask him what he did with it!” I snickered into the phone. I could see my brother now, sitting across the table from my mom and getting blindsided by this conversation. It would be a classic! He gave that car to his son almost ten years ago; who knows how long it’s been out of the family now.
“Really?” Mom replied, “He’s coming up here for lunch. I’m going to ask him about my car!”
This month on the Band, we’re sending letters to our younger selves – it’s important and it’s freeing. So please, go ahead and submit your own! (you can even do it anonymously)
We are ALSO looking for stories of brain injuries and other problems with the brain, by request, so please, let us know if you’d like to share.
Dear Younger Me,
I can see you so clearly in my memory. Snuggling up with him in a bean bag chair, watching Duck Tales. Making Chewbacca noises at each other, louder and softer, higher and lower, but always laughing about it. Chocolate pudding to get him to take his medicine. Stroking his hair while he seized, and he seized a lot.
I can see it change you. It made you resilient. It made you strong. It made you selfish and afraid. It made you paralyzed damn near thirty years later when your own daughter had a seizure. Even after helping through thousands of them, you panicked. It’s okay, you told yourself, and you meant it. It’s still okay, with hindsight. I would still panic now. You never wanted children because of him. You were afraid of what you would have to do if they were like him. But his wasn’t a genetic condition. It was the result of a brain injury either shortly before or after birth. Maybe it was a stroke before he was even born. Or the high fever after one of his vaccinations. All theories welcome, because we’ll never actually have the answer.
You lived in anticipation of the next Big Bad, and while you had many good things happen, you can’t shake that feeling. Waiting for the next thing to happen. It’s okay. They will, you know, they will happen. And you will meet them all as they do.
Loved you then, love you now, love you always (even when we forget for a minute).
