Disability Etiquette

Posted on November 29, 2010 by My Bleeding Ink

This comes from the United Spinal Association and emphasizes the importance of etiquette (disability specific).

1. Ask before you help. :Offer assistance if you notice a need but ask first if your help is necessary. Offer common courtesies, such as holding doors open, picking something up, helping to carry things to people with disabilities as you would anyone.
Good manners are appreciated by everyone.

2. Be sensitive about an individuals’ physical space: Moving a person’s medical equipment without asking may create negative feelings. Consider the medical equipment to be personal space. Also, be aware of the height difference for people in wheelchairs. It is difficult to always look up at someone who is talking. Pay attention to your proximity to person in a wheelchair when you are in a line. Never ask a person in a wheelchair to carry such things as your coat on his or her lap.

3. Always speak directly to the person with the disability: Speak to people with a disability as you would to anyone. Avoid talking to them through their companions, interpreters or aides. Speaking directly to people with a disability is important for their self-esteem. If an individual has a companion dog, be sure to talk to the owner first before approaching the dog. The dog is working and has a responsibility to assist its owner. Misdirected attention can, over time, break down the dog’s training.

4. Don’t ask unnecessary personal questions: Don’t ask what happened unless there is a professional need to know. Imagine if you had to tell people repeatedly about the worst day of your life. An exception may be children who have a natural curiosity. Most people who have disabilities do not mind answering personal questions from children.

5. Don’t make assumptions: People with disabilities can best decide what they are capable of doing. You could violate ADA rules if you exclude people based on presuming their limitations.

6. Be kind in considering special requests: Do your best to accommodate a person with a disability. A request for an accommodation for a disability is not a complaint, so don’t take it personally.

7. Put the person first: Everyone wants to be valued as a person first and foremost. When communicating, always say person with disability rather than disabled person. Avoid outdated terminology such as handicapped or crippled.  Avoid negative terms such as victim or sufferer.

Remember, people with disabilities are individuals just like you. While they may agree that a disability plays an integral part in their lives; it does not define them.  Treat all people with respect and kindness, regardless of their abilities or disabilities.

Source: United Spinal Association publication

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Crystal’s Wings

Posted on November 18, 2010 by My Bleeding Ink

Crystal was handed her wings on a silver platter at 12:15 am, On February 21, 2009. She was blessed with the presence of her Brother – Rick, Mom, Aunt Mary and Uncle Sam as she passed. She was not alone for one solitary second; she was showered with love, affection, happiness, comfort, laughter and sweet dreams. Around 5: 15 that evening, she was not in her typical state of mind; she was talking and having a conversation with someone but no one that was in the room with her. She was not making much sense for a time and then clear as day, she said that she saw angels flying around her and she wanted to sing Hallelujah”.

(Editor’s Note: A week or so after this was written, mom recounted how Crystal spent almost 3 hours talking to her angels…..where she had previously not been making sense, she spoke clear as day….where her eyes were closed most of the time from chemo and weakness and blindness, she had her eyes wide open for the first time in days and days, and spent three hours holding a one sided conversation with unseen spirits. It was beautiful to listen to mom tell such an experience. )

“She was having a conversation with the angels getting ready to pick her up from her hospital bed. From there, she began to decline significantly as the evening progressed, it was evident that she was ready and had made her peace with God

~the final entry on Crystal’s CarePage written by Shelley Raine Shinley

And I, Bleeding Ink, had the honor of writing the words below, so that everyone can learn more about Crystal ❤  )

Her final chapter began last March 2008. She first discovered a small lump in her left breast and five days later it had grown into 5 egg sized lumps. Only then was she genetically tested, and shown to have the BRCA 2 gene, one of the two so called “breast cancer genes”. She went through 22 weeks of chemo, responded amazingly well (as is the case with most aggressive cancers). After that, the plan was to do a bilateral mastectomy and radiation on her remaining 1 tumor. She had the mastectomy In August/early September and in the six weeks of recovery, had no other treatment. When it was time to go back and start radiation on the one remaining tumor, the PET scan revealed that the cancer had come back with a vengeance, in her liver, lymph nodes, neck and brain. Doctors changed course of action and began targeted radiation on those tumors and the Gamma Knife procedure for the tumor in her brain. The targeted radiation did it’s job well, but unfortunately the cancer spread to other parts of her body that were not being targeted. Again they changed course of action and decided to do all out chemo. She was on two different types of chemo, pills to help strengthen her bones which also had cancer and on other medication for side effects and other things.

Early this January she lost consciousness and was rushed to the hospital where she spent her remaining weeks. She had also lost sight in one eye and strength on one side of her body. After a few days of testing, it was determined that the chemo was helping her body but due to the “blood-brain barrier” was not reaching her spine and brain. It was then determined that the cancer spread to those areas.

Doctors tried chemotherapy directly into the spine for a while, directly on the brain for a few treatments, and into her body for a bit. All of which ultimately failed. The cancer was just too much. No technology exists in 2009 that could’ve contained it.

Through it all, she never lost faith. My own experience with her was the same as many others. She was not going to let the cancer win!! She had so much faith in her doctors and in medicine. When they told her there was nothing else they could do for her, she definitely had, as she called it on the rare occasion she lost faith, her “sumbitch” moment. She called for four of her closest friends in the world and they all cried and laughed and got angry and reminisced and laughed some more together.

Even when she (reluctantly) made the decision to move to hospice, she talked about plans after she got out! She was going to get her strength back, she was going to do PT, and she was going to get out.

It was not to be. God called her Home less than 48 hours after moving to hospice.

But cancer still did not win!! It took her Earthly vessel from us, her physical being, but it did not take her essence. We will always have our memories, the things she taught us by her quiet strength and courage. The dignity with which she fought this battle is a lesson we can all learn from.

In loving memory of a warrior, and a kind and gentle soul who never gave up….

Crystal Rosella Young

August 23, 1976 – February 21, 2009

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An Open Letter To Crystal (originally posted August 24, 2009…one day after she would’ve turned 33)

Posted on November 18, 2010 by My Bleeding Ink

so where to start? Who am I writing this to? Crystal? Mom Charlie? Friends? Anybody on facebook? And who am I writing this for? Crystal? She doesn’t need it. She knows everything now. She can see inside my heart now, truly, and knows exactly what I think of her. So is it for Mom? She may not want to see it, and that should be respected. Is it for anybody on facebook? Might be an overshare. Hell, since when has that stopped me.

Or is it for me? Plain and simply, for me. For my own well being, for my own health, for my own sanity. Just another step in the process that is “closure”.

15 years. 16 years. 17 years, I don’t know. I did it for a long time. Every August 23rd. She’d get a dozen red roses and a phone call right at midnight. Or an e-mail or a text. Hell, back in the pager days she’d get a page from me at midnight! I’d sit there, waiting until just past 12am, and then I’d call or contact her some other way.

“Happy birthday Crystal. I love you.”

Every year. And she loved that I never forgot. She loved that I was always first, right at midnight. And every year I’d get a reply. “Thank you for never forgetting about me.” “I love you ******.” “Why are you so good to me?”

“Why are you so good to me?” Indeed.

Ya know, often when people die it is somehow decided, unspoken of course, that the deceased was a saint. A do-gooder who never did anything wrong, everybody loved and didn’t have any flaws. Suddenly no one has anything bad to say about the dead.

No one ever had anything bad to say about Crystal while she was alive. Crystal was not a saint. And Crystal had flaws. But ya know what? She was also the kindest person I knew. The kindest, sweetest, most giving, selfless, patient, soft spoken, most amazing person I knew. And beautiful. Such a beautiful girl. AND I SAID THAT TO HER WHEN SHE WAS ALIVE AND HEALTHY!! Constantly! Didn’t suddenly start when she got sick.
And it made her uncomfortable. Very. She didn’t understand why people loved her so much. She didn’t understand. She could never imagine that the guestbook at her memorial –where there is often one signature for one family of 4 or 5 or 6– would contain 743 signatures. She was amazed that last November at her fundraiser, more money was raised and more people showed up than had been raised or had ever showed up for anything at that bowling alley.

“I’m just me, mom. Why does he do it? Why does he send me roses every year? I’m nothing special. I’m just me.”

No, Crystal was not perfect, if nothing else because she often said silly crap like that! :”^)

She was special. She was the most special. From the moment I came back from my first surgery sophomore year of high school, to one of the last times I saw her in the hospital and she said through an oxygen mask, “He can come and go whenever he wants to because I said so!”, she showed me nothing but love. Pure, sincere, compassionate, innocent, deep, unimaginable love.

And I loved her too. So much. I would tell her “I’m obsessed. But fear not, you’re a healthy obsession.” And she’d giggle. And smile that perfect smile and wink that perfect wink. That wink that I first saw in high school when I came back from a surgery and I could feel someone looking at me. I’d look up and it was her. Head cocked to the left, just smiling at me. It would instantly make my heart happy, I would instantly forget about the half-shaved head, the baseball cap, the staples near the shunt incision. And I would smile back. And then she’d wink. The most gorgeous wink I’d ever seen. Later, she’d ask me how I was feeling…and she’d wait for the answer!! Imagine that?! She’d sit there and listen! Nobody did that! I had very nice people around me, good friends, a girlfriend that went through way too much with me….but Crystal, as a friend, went the extra mile. She would take that extra step to show you that she cared, that you mattered and you were important to her. That was just Crystal.

I remember even after high school when……………………..

Ok, so here we go. God has an amazing sense of humor. I wrote that last sentence and sat here and cried for a while, thinking of everything Crystal ever did for me, everything she ever said to me. Thinking about the many times she and I would sit at a table “eat lunch”. <—in quotes because that never happened!! Countless plates of food went uneaten as we just sat there and talked for hours and hours. Always just me and her, sitting across the table from each other. Connecting. Looking into the most beautiful blue eyes I’ve ever seen. And just….connecting.

So yeah. Been sitting here quietly crying. Remembering. Then I got a phone call. A wonderful friend of mine. A nice, smart, kind lady. And she said some good stuff about “processing things”. I’m tellin’ ya it was the freakiest thing. Perfect timing. Proving once again that God has a good sense of humor.

So, rather than go on and on about Crystal, telling stories that are just mine to have and shouldn’t be shared anyway, here’s what I think I’ll do….I’m posting this. I’ll check in with Mom, get her permission…just seems like the right thing to do….and then post this. Maybe I’ll wait until we get closer to her actual birthday, maybe even after her birthday, who knows, then I’m posting this. This is the “for public consumption” official Crystal blog entry.

But for now, oh dear god I’m gonna go find something else to do!! I need a distraction. I need to occupy my mind, occupy my time and my energy on something else, something positive and happy and maybe even fun.

Then maybe later…..much later….not on her birthday….maybe not even near her birthday, maybe just some random day in October or something, the middle of November, I don’t know……writing something for me. Writing something that no one will see. Atleast not in cyberland in any way shape or form. I felt, I still feel, like I need to write stuff down. But maybe I still need to think. I mean my god, it’s only been 6 months! That’s nothing! That’s not enough time to process anything. It’s enough time to stop going crazy and stop crying every day, but it’s not enough time to really figure out what one thinks about anything!

So I won’t figure it out. I won’t write it down. Because after all….she knows. Now she knows. Now, with her Heavenly eyes, watching over everybody, now she really and truly knows what I think. She even has a better idea of what I actually think than I do! She knows all the words I can’t find. She now knows exactly how I feel about her, exactly how I felt about her, what her friendship actually meant to me, how important she was and still is in my life. She knows.

Shit. Well I guess in that regard I don’t even have to write anything down. Atleast not for her. Just for me. And for no one else. Cool.

Happy birthday Crystal. “olive juice”

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