I have lymphoma.
There you all go….
You ask me what this has to do with my deafness.
A lot!
For four weeks, my mind was befuddled, and I had severe anemia. Every movement I made required effort, very valuable tidbits of energy when I had very low energy.
My Denise took me to several doctors who were more concerned about my anemia than my lymphoma. They told us to go to the emergency room at the University of Rochester (UR) Strong Memorial Hospital in hope for a bed at the UR Wilmot Cancer Center. I was able to get that bed. That was the first important step on the way to recovery, but I wasn’t aware of it.
That’s when I first came to multi-interactions among myself, Denise, my Cancer team and American Sign Language (ASL) interpreters. These interactions have been very fluid. Whenever I have my Cancer team and ASL interpreter(s), the communications would vary. Sometimes I would speak and the interpreter would interpret what the doctors would respond. Sometimes when my mouth would be too dry, I would sign and the interpreter would interpret what I signed. The interpreter would then sign to me what the doctors would have said to me and/or my family. There were a few times that a doctor would use his smartphone to communicate with me in voice-text transition.
Whenever a nurse checked on me, an interpreter more than often would not show up. We either used both voice/gesture or used pen and paper. That was not a problem because I used my vocal, ASL, and verbal (e.g., writing) skills.
Yes except for one procedure. There were several procedures I had to undergo, and an available interpreter was with me. All good, except for my heart ultrasound (my heart is strong, by the way).
Denise and one of our daughters, Hannah were with me when the heart ultrasound procedure was performed. It was performed beautifully by the medical technician. I don’t know how the technician was not able to get an interpreter, but I guess a nurse thought Hannah would act as an interpreter and felt no need to ask for a professional interpreter. I was furious and disappointed deep down. No, they cannot use any family member as an interpreter because they are not, cannot, will not be interpreters because they are not professional, damn it!
Of course, Denise and I expressed our disappointment to the next available interpreters and they reported the incident to the top.
Now you all can see I’ve regained my mind, and I look forward to writing a few more blogs.
Postscript: Four weeks after I published this blog, I had my second chemotherapy treatment. During this treatment, I had an ASL interpreter by the name of Anthony so that he could help me communicate with nurses who were wearing their face masks, making lipreading nearly impossible. I somehow brought up this blog to Anthony and suggested he read this blog. Once he read it, he said it reminded him of a situation that was similar to but more poignant than mine. In this, there was a Deaf family – a Deaf grandmother, her adult Deaf children, and her hearing CODA (child of deaf adults) granddaughter. They were from out of state, but the grandmother was already dying in a hospice at the Strong Memorial Hospital in Rochester. When an ASL interpreter did not show up, the CODA requested one from the nurse’s office. Thinking the CODA was out of state and didn’t know anything as to how to officially request an ASL interpreter, the nurse hesitated and basically said the CODA could act as one. The CODA, however, knew about the process — she had a lot of experience with it. With his or her ‘pants’ down, the nurse had immediately requested a professional ASL interpreter, who soon showed up.
The point here I’m trying to make here is that if someone has a loved one dying, he or she can’t be relied to separate his or her emotions from what he or she could do — that is, one can’t grieve and interpret for her own dying beloved Deaf family member at the same time. That’s why a professional ASL interpreter must always be available in a professional setting, especially in a hospital room setting where emotions are involved among Deaf family members.
My prayers are with you.
Thank you for your thoughts, Adam.
Sending you lots of love, encouragement, energy and hope to wellness and recovery… You’re strong heart will keep you going. Stay positive and visualize your body fighting those lymphoma suckers away!! 😘🙏
Thank you for your encouraging thoughts, Deborah.
Oh, Henry. You are going through so much. I can tell that you are strong and have family support.
I hope your health improves.
Hugs
Karen
Thank you for your encouraging thoughts, Karen.
Glad you have turned the corner. Sending some BR energy. Erik
Thank you for your thoughts, Erik.
I hope you will beat it to the curb. Praying for you!!
Thank you for your thoughts, Moges.
Henry, we’ll be thinking about you and Denise (and the girls, too). Sending positive vibes from California.
Thank you for your thoughts, Regina.
My thought of you and praying for you speedy recovery. Thinking of you and your family.
Thank you for your thoughts, Frank.
Henry,
You are a great example for self-advocacy. Family and friends are not professionals and are emotionally involved.
Best wishes to you and your family as you confront this challenge.
Judy
I try my best to do with my own self-advocacy, Judy. Thank you for your positive thoughts.
Henry, you’re in our thoughts and prayers. Wish you a speedy recovery!
Thank you for your thoughts, Debbie and Ken!
Wishing you all the best in your fight for your health, my friend ❤️
Thank you for your thoughts, Carolyn.
Sending you a BIG hug Henry!
Thank you, Martin!
Henry, hang in there. My sister Shelley has lymphoma. She also lives in Rochester. She was diagnosed 4-5 years ago. She is doing OK. I’ll send you a PM. I hope the natural remedy to help with the anemia is helping you.
Good to know that I’m not the only one with lymphoma, Yvonne. Thanks for your caring thoughts, and I look forward to hearing more from you.
So much you’re going through! Hope you recover fast Henry! — Monita
Thanks, Monita.
Sending love to you and your family! Stay strong!
Thank you, Lili.
Henry,
Been a long time!…Fight the fight buddy…you can beat this!… Prayers are with you…:)
When interacting with providers, if the provider is unable/unwilling/does not want to facilitate my lipreading by looking directly me, try and removing mask ei/use heee LiveCaption or the Ava app on my iPhone, I try to use the LiveCaption or the Svdsdda[p.
averaa[[. . It works wonderfully when the provider is speaking with standard American speech and there is minimal background from loud fans, for example. Whenever these work as intended, they allow me to respond appropriately to queries, as would a hearing person. Caveat, these apps gulp power like crazy, so it is good to have a backup.
Usually the patient chart indicates that I am deaf and rely on lipreading, It may be a good idea to confirm..
Henry, you’ve explained this beautifully. Wishing you the best.
Thanks, Karen!