Do you know me? Do you know me now?
(Howdy iPeeps! Please read my bio before reading this column — it will fill in the blanks that you might not even see.)
“Happy Nude Ear!”
Back when I was spunky and irreverent (oh yeah, I still am), I loved playing with words and phrases unconventionally and provocatively. Yesterday, I sent a “Happy Nude Ear” email to my oldest sister Barb and I could feel her laughing about it all the way up in Crescent City, California. She knows me to the core, and loves my goofy humor. One of my nicknames was ” Goof” when I was a vibrant tomboy (oh yeah, I still am.) Now I have many nieces and nephews who call me “Aunt Goof” because they know me and my bighearted goofiness. Those folks “know me.”
So let’s get down and dirty, down where it’s real (not sexually.) I stole that line from the lyrics of a song I wrote called “Down Where It’s Real,” which is on the last CD we will ever record. Look for it on our music site www.duvalspeck.com. The song talks about dying, but — your own death or theirs? On Facebook, can you know for sure with whom you’re “talking,” or does it even matter since you really are dying? (That was a shameless plug for our band Duval Speck & The Essentials.)
As you know by now, I have ALS and my lifestyle has turned inside out — no, it’s outside in. Before ALS, I was one of those people who doesn’t sit down unless it’s on a toilet, or maybe to eat a meal, but not simultaneously. I was always talking or singing — I bet I interacted with up to a hundred people a day at work, and with even more when I was on stage with my band .
These days, I am home alone most of the day, sitting under my laptop on my lovely recliner that’s also a “lift chair” — it can stand me up and sit me down. I wish it could bathe me too, since showering is so energy-sucking. Hang on there, I am not complaining. I’m simply narrating, with maybe a raised eyebrow or two. Mazie, our amazing monkey-faced pug/poodle/terrier Princess, just nudged me and looked sternly into my eyes. I am not home alone — I have my dog/monkey Princess at my side. (Boy did she give me the stink eye.)
Each morning when I wake up, I know it’s another bonus day — I have outlived my prognosis, and I get to choose the attitude to have that day. To stay motivated, I need social interaction and opportunities to help people and pets, and sitting in my recliner most of the day can make my goal seem even more daunting.
I’m definitely active socially on Facebook, texts, old-fashioned email and online, where I write columns for five different venues. I’m one of those people who trust others inherently until/unless I’m given a reason not to trust them, and I easily “tell my story” to anyone. I feel like I can help others by sharing with them what I’ve learned so far on this wild ride called life. How could that be bad?
Let me count the ways.
Uh, no, there are too many. But I’ll share one experience with you. I am dedicated to the ALS Chapter support groups, which meet twice a month in the Sacramento. But I also communicate with other PALS in a “locked” Facebook group for ALS patients from all over the world — even India, or so I thought…
Did I trust someone I really didn’t know? Did I give him/her way too much personal information including photos and videos? Did I truly believe I was helping someone who is suffering? Yes, yes and yes. Oh no, no and no.
Rather than rewriting it for you I am simply cutting and pasting from the message thread. We “messaged” for at least seven months, but I’m cutting out big chunks of the conversations so I don’t give out way too much personal information — again. I changed the name of the so-called patient. Beth and Roger are actually one person playing the “nurse” and “patient.”
It all started so innocently — how could I not “friend” this person? She claims that she was born in 1989 and that he was born in 1987. She also said she was 23, then changed her age to 21.
1:07 a.m., Roger (in India)
Hi i am Roger. I am 22 years old. am disabled with scoliosis and like to be friends with u. i also have dystonia and have Transverse Myelitis because of which i cannot use any muscles below my lower lips……i am also on a ventilator i have a recessive strain of muscular dystrophy, duchene’s.. i love making friends online because in India where i live people just ignore my friend request, disabled unfriendly environment here , u also get discriminated a lot against… And most important of all i am 21 and struck up in an institutional nursing home which i hate… if you can send me a request it would mean the world to me… Regards Roger
Roger — this is Roger’s nurse Beth typing for him. (From this point on Roger is actually “Beth” a female nurse. So, Roger doesn’t really exist but we didn’t figure that out until a few days ago, and I reported it to the FB authorities.)
10:06 a.m. Roger: “how is ur health?”
10:07 a.m. Cathy Speck: Hi Roger, I’m very busy working for the Walk to defeat ALS in Sacramento on Oct 6th, and I’m getting ready to go to Napa for the ALS TDI Bike Ride thru Napa. Lots of exciting things happening at once. Roger if you and Beth would like to listen to an online radio interview with me from last week, click on this link: “Love powers the journey and smiles light the way.” http://www.blogtalkradio.com/find-your-sprinkles-radio/2012/09/20/today-is-the-greatest
3:45 p.m. Cathy Speck: how long has Roger been sick? Does he have family? How does he know me? Can you send a picture of him to me?
4:03 p.m. Roger: He is 22 years old……he is struck here in a nursing home…….his family passed away in a car crash …….3 years back……his extended family disowned him…..
4:30 p.m . Cathy Speck: oh my, oh my oh my…does he have ALS, or did the car crash injure him. Where is this nursing home? who pays for him? who visits him?
4:39 p.m. Roger: Really no one visits him……he has als …..though medical test in this place is not to diagnose als….he was already in the declining phase when the crash happened nd he was not involved in crash…..we are located in India….he is vent dependent nd tube fed…..
4:46 p.m. Cathy Speck: Oh my. You are so patient and loving. do you know what I can do to help him?
5:06 p.m. Roger: What do u mean ms speck ?
5:0 7p.m. Cathy Speck: does he like music? or books read to him? I was a musician, and I could send him CDs of our music..
5:11 p.m. Roger: his mom and dad died in a car crash 4 yrs ago……. his extended family disowned him, labeled him as a person in vegetative state got a court order saying that his mental state is not capable . they sold his parents property put him in this prison sold his wheelchair and since then he has been here. he didnt sit up for 4 years.no friends. One room with no windows. the nursing home has a locked up section of its own where Roger and few other severely disabled patients are kept……….even the nurses are not allowed and no visitors.
5:17 p.m. Cathy Speck: This is so horrible. How can i help you. I don’t have money because I am dying too. But I can share music. My wife Linda and I have a band and CDs. Music can be enjoyable, especially if you have no visitors. Can I mail cds to you, and a cd player?
5:23 p.m. Roger: Wife ? Linda?
5:24 p.m. Cathy Speck: Yes, we live in California where it is legal and accepted for two women to be married to each other.
5:28 p.m. Roger: Wows……….I would always dream of that…….I should settle in calif…….what r u doin?
5:31 p.m. do you want to move to US? Did you grow up in India?
5:34 p.m. Roger: Yes I grew up here. I m 23 year old……m an ICU nurse registered physical therapist…….and can lip read……fabis mental capacity is intact…..never heard anyone with als …….he is sharp……..did ur wife come?
1:34 p.m. Cathy Speck: Is it you Beth?
1:34 p.m. Roger: yes babe
2:00 p.m. Cathy Speck: We have been out of town for a while without my laptop, and I am so behind in my writing to family and friends. My heart and prayers are constant for you and Roger–every single day.}
2:01 p.m. Roger: when will she be free? when will you be free?
2:04 p.m. Cathy Speck: I don’t know for sure, I’m barely getting started… we got home last night and I’m so tired, but must start writing. When I am able to rest from my writing, I will contact you,
2:06 p.m. Roger: I will wait for you dear
2:56 p.m. Cathy Speck: What is your native language? Did you call me “Babe” for a certain reason?
3:07 p.m. Roger: no dear…….m 21 years old was exited and guess my hormones played up. Sorry Mrs Speck
Enough already! It’s me, the real Cathy Speck stopping this story because I don’t want to “creep you out.” Did you notice the math errors and conflicts within in her stories and explanations? She claims that she was born in 1989 and that Roger is was born in 1987, and is 22 years old. She also said she was 23, then changed her age to 21.
I left out quite a bit — a very big and icky bit, because it goes on and on, much farther than I’ll ever fall for again.
How did all of this become public — on Facebook? Someone in our locked ALS group asked if anyone had any knowledge of Roger and Beth. I immediately told my story, then 3, 2, 1 blast off: the posts came flying in from other PALS. It turned out that many of us had given her our personal information, videos, photos and oh, yes, she also was scamming the caregivers of PALS.
We don’t know if she’ll get caught, and she could still be scamming using other names with different diseases. I won’t get into the details, but I learned something from this experience and I want to help others by sharing this story: Know people online and on the sidewalk before you decide to air out your underwear. I don’t wear any, so I guess I need to know people before I walk around naked with them. There I go again — TMI. “Friend me.”